Ellen Harris-Braun on world of the sick / world of the well

Challenges

Fri, 05 Aug 2016 10:24:25 +0000

My brain is less functional than before in these areas: keeping track of the day, date, and even month; peoples’ first names; medicine names; and how to run the very online writing workshop I designed and Eric and I wrote, launched, and upgraded over the last 10 years. It is very depressing to try to do the few behind-the-scenes person-to-person functions with all the loss of ability. Eric volunteers to do what I can’t, but then I don’t know whether things are done, and whether they are done the way I would want them done. (That would be “the right way.”)

The same thing is happening all over my life. Housekeeping, clothes-buying, finances, bill-paying. The shift is challenging me to let up my grip, be okay with things done a different way than mine, and trust Eric more than before in realms we both (I think) agree I am more skilled in.

Back to the grind

Thu, 28 Jul 2016 13:29:16 +0000

Coming to you live from the chemo suite! Our trip is over and we’re slowly getting back into the patterns of normal life. Which of course include chemo.

It seems like Jess grew an inch while we were gone. They are interested in helping me out, which is fun. This afternoon they pushed my chair for a bit because Eric had to park the car instead of coming in with us. I wanted a picture.

"hanging in"

Sun, 17 Jul 2016 17:46:50 +0000

That’s what I tell inquirers when they ask how I’m doing and I have nothing to say that is particularly interesting.

So over the past week it’s been pretty much like that, except for good news from my recent MRI and CT scans: nothing known to be new; nothing bigger than last time; lots of things–and by things, we mean tumors–that stayed the same size.

Maybe some other notable things happened this past week, but I just don’t remember them at the moment. Chemo is weakening my memory for sure. However, at least now you know that I am still around and still hanging in. Or a reasonable Internet facsimile is. But ouch. Would a mere reasonable Internet facsimile have such intense back pain and complain about it this much?

Weekend excitements

Sun, 10 Jul 2016 16:38:06 +0000

This morning I woke up at 8. It’s 10 am and I have already:

had bad back pain and gotten Eric to rub my back before putting on the three-times-a-day pain lotion
slathered my fingers with another kind of pain lotion because they hurt in a bad-cold sort of way
thrown up out of nowhere
tripped on the walker I was leaving at the top of the stairs, had nothing to grab or break my fall with, and landed flat on the floor kind of howling
wondered, at the end of all this, why am I hanging in...

Maybe soon it will be time for breakfast?

Yesterday we went to Shivani and Jon’s wedding. This sounds simple but it wasn’t, and almost all the ahead-of-time detail work that made it as simple as possible for me was thought of and executed by Eric with generosity and self-motivation. I am lucky in my long-ago choice of partner, for sure.

The wedding was at 11 am by the side of Ooms Pond. It was a chilly summer morning but, politely, it only rained for the actual ceremony, not the waiting time before or after. It was a light rain and its biggest annoyance was that its noise on umbrellas made it hard to hear the vows.

I sat in a big collapsible chair borrowed from Emilie and tried to take some interesting pictures. I got wet but not too cold and was very, very glad to be there and feeling all right (other than tired).

Guest post: Spee’s update

Sun, 10 Jul 2016 09:01:03 +0000

Spee sent out this update last week by e-mail, and I thought it was worth putting on the blog to fill out the picture.

Hi, family and friends -

It’s been a while since I’ve sent out an update because of more frequent blog postings by Ellen and some awkwardness there. But today I spoke with her about this and described the need, and she released me to update you all freely.

What’s happening first and foremost is that Ellen is slowly but steadily declining, but still hanging in there. She is increasingly tired and disabled, with decreasing stamina, more frustration and anger, reduced cognitive functioning, and more withdrawing. These are small increments but especially noticeable to those of you who see her less often than I do.

Ellen spends much of her time in bed, but tries hard to come down for meals and occasionally do fun things like go for ice cream or to an event. Of course, she has many medical appointments and she is able to get to most of these, with Eric or Kathryn or someone else as driver and companion/helper. She uses a walker that has a seat onto which she can rest whenever she wants, and that helps a lot. She has a wheelchair, but really doesn’t like to use that. As you may have seen, Eric rented a scooter for her use in Montreal and that worked out quite well (see the recent blogpost about the trip).

Ellen is now taking methadone regularly and one question is how much that might be contributing to her increasing tiredness and other worsening symptoms. The visiting nurse Elizabeth says that methadone could be a factor, but the most influential factor is likely the week after week, month after month doses of triple chemo. There could also be disease progression as well, she says. In addition, Ellen’s broken foot is healing slowly and still causes pain, which gets her down. Ellen is committed to continuing the chemo as long as it’s keeping the cancer in check. This coming Tuesday she’ll have the routine scans to see how that’s going.

In other news, Will is enjoying his summer grounds-keeping job at Buxton School. He comes home most weekends and brings upbeat energy into the household. This morning, he, Eric, and Jess were happily making a big brunch while music blared in the background.

Jess is home for the summer and spends much of their days in the basement on the computer. They also watch TV with Ellen about once a day, with the two of them enjoying snuggle time and conversation about what they’re watching. Jess has lots of appointments that get them out of the house and they have a volunteer job they really like, which is volunteering once a week at a wildlife rescue center.

Eric is tired and he requests that people stop asking him, “So how are YOU doing?” He is taking care of himself by running regularly, taking one 8:00-8:00 day off each week (what we call Woodstock Wednesdays, currently with Helen and me covering), and playing squash at Simon’s Rock on Mondays and Wednesdays while Anne and Sandy are covering dinnertime. He continues to prefer to spend a lot of time with and caring for Ellen over working or doing household chores, so the help that others are providing the family is generally in the realm of household functioning. It seems they’re ready for the extended circle to start contributing dinners once a week, and Sandy will arrange this with Chris De Roller.

As for Helen, Gene, Jens, and me, we gained access in May to more people trained in hospice and available to those around Ellen, even though she isn’t on hospice. We’ve benefited from time with both a social worker and a chaplain, who are part of the same team as Elizabeth is on. We also have super help from Maizy, who’s working about 25 hours/week supporting Helen and Gene mostly with driving and our household mostly with kitchen duty. Natalie and Aaron also step up and step in in many lovely ways.

The "Rings Fellowship" that Emilie or Dee hosts every other week is super helpful. We continue to be extremely grateful for that.

I’m also grateful that Ellen is keeping some sense of humor, as we sure need that, and that she finds joy in looking out over the lovely meadows and forest that surround us.

While I’m on a gratitude run, I’ll add that I’m grateful that Jens is staying centered and spreading love, that Eric is maintaining his stamina and wonderful spirit, and that Elizabeth is such a terrific hospice-trained nurse that she can hold the most difficult conversations with Ellen. I’m grateful to Kathryn, Ellen’s sisters, Helen, Gene, Sandy, and others who are constantly thinking with deep love about what else could be done for Ellen, Eric, Jess, and Will. And thanks to the rest of you for your waves of love and Light. You make the journey lighter.

Love,

Mommy/Spee

The view from Montréal

Sun, 26 Jun 2016 15:20:55 +0000

Eric and I ran away from home a couple of days ago (leaving the kids behind) to explore a little bit of Montréal for our 10th-anniversary trip. So we’re 11 or 12 years late for our 10th anniversary…oh well. We made it at last. Because of my broken foot Eric rented me a motorized scooter to get around in. And we had to stay in a bigger hotel that would have little details such as elevators. And ramps. And a minibar!

And views from the balcony to the east.

Backs of city buildings are fun to peek at.

This has been my first trip as a mobility-limited tourist. Interesting. Hard to get over the extra attention.

Food: I wanted to do a lot of tourist eating here, but my guts complain bitterly if I overeat (which I have been doing a lot of lately). So instead I am trying to use this change of scenery and habits to learn not to overeat, to pay more attention to feelings of fullness, to order lighter food, etc.

We are about to go to Cirque de Soleil down on a quai on the river. Mobility-impaired guests get good seats for a discount (so do their “accompagneurs”) as long as they can show up 30 minutes early. Okay!

Tomorrow we will go on a boat tour and maybe also a bus tour.

Guest post: Jess' perspective

Wed, 15 Jun 2016 18:59:27 +0000

Jess says:

When a house has cancer in it, what does it have too much of?

Cancer.
Visitors.
Prescription medicines.
Meatloaf.

Brief clinical updates

Thu, 02 Jun 2016 15:45:37 +0000

Just to share some clinical updates, since I am sitting here hooked up to chemo for what feels like the 8th hour in a row (it's actually only the beginning of the 4th hour but geez, they are running s-l-o-w today):

• intrathecal methotrexate has vanquished its target cancer cells for now—I am down to one MTX dose every other week from starting at 2 per week in the beginning of February.

• still getting combo of gemcitabine & carboplatin 2 wks out of 3. This switch from my original chemo, Eribulin, was made last fall. Eribulin sure worked for a long time (19 months?).

• still getting bone-building helper drug Xgeva/denosumab every 28 or so days too, because it might help prevent bone mets.

• I signed up with a palliative care nursing program and now I get seen by a visiting palliative-care nurse weekly at home, plus access to a physical therapist, social worker, and chaplain if I want. All at home which makes a HUGE difference. There are significant parallels between homebirth midwifery--all sorts of authentic midwifery--and hospice nursing care. Of which this palliative focus is the first stage.

• through the palliative care program, I found a pain-management MD to handle all my pain problems/pain meds centrally. Too bad she practices in Mass.!

• At her advice, I went off amatryptilline--one pain-relief med--and my increased dizzy spells decreased again, yay (both in frequency and in severity). So I guess that was the final straw (many of my meds say "May cause dizziness").

• I switched in May from morphine to methadone for my main pain relief, hoping to get more solid relief with less fogginess. So far, same level of incomplete relief, less fogginess. So now we increase the dose to see if I can get better relief. Areas that hurt: left knee, currently broken left foot, both hands (numb and clumsy and touching most things now hurts (like popcorn and velcro). Back less than before. Headache much less than at its worst.

• The big thing going on, besides the 3 broken foot bones, is fatigue of both mind and body, and shortness of breath (likely due primarily to lung mets, but we'll find out more at my next scans). I don't go out much. When I do have a day that includes more than one or two events, I need to rest up afterwards--and beforehand if I'm smart. I am slowly getting used to this. It is still sad, though, how everyone around me has redefined a "big day" downward over recent weeks so that a current big day contains the same number of events an easy day used to contain.

One small downside to all these helpful visitors...

Tue, 24 May 2016 15:19:37 +0000

…They all seem to run on nut butter.

Nut butter mementoes left by our helpful visitors!

Luckily none of these many varieties goes bad in the fridge.

What's been slowing me down

Sat, 14 May 2016 11:59:22 +0000

My weak left ankle turned outward on me for real last Friday, after weeks of threatening to do so, causing an impressive tumble to the floor in the bathroom.

broken?

Just wrenched and swollen?

By the next day it hurt in a bigger and more focused way, so off we went to the nearest Urgent Care place.

I will spare you all the details but after a visit to the orthopedist on Monday I now have this at the end of my leg for 6 weeks:

don’t let the foot move!

Makes everything harder. I have to use the purple walker to take the weight off that foot and this coming week will rent a small wheelchair. Sigh. How this affects our Montreal plans I am not sure yet. Eric thinks we should just go anyway, June 3 through 6. I don’t see why we couldn’t postpone the trip for a couple weeks, until I have less pain and hassle.

Life keeps trickling by... and a bit on my midwifery doings

Fri, 06 May 2016 16:45:34 +0000

Life keeps trickling by with nothing that calls itself out as news-worthy. Aka blog-worthy. The bar is higher now that one-handed hunt-and-peck is my main route of written-word production. Using dictation software is also an option but it is hedged about with caveats and requirements. I don’t always feel comfortable spooling along my thoughts for this blog aloud with others nearby. If I am dictating and people walk in talking, the software picks them up and plops in some garbled version of what they were saying. And even when it’s just me there are lots of errors to fix.

Yesterday was the International Day of the Midwife so maybe it’s time to share a bit on my midwifery research project that is on hiatus now but may someday be…rehydrated?…and back on the to-do list.

When I was diagnosed with metastatic breast cancer, I was about 2/3 through with a distance program for CNMs and CMs offered by The Midwifery Institute at Philadelphia University. I had been hatching my own research study based on my Philadelphia University research project, but I realized when presenting my work so far at the 2014 MANA conference that my results really weren't a strong argument without better data. Luckily, as one of the architects of the MANA Stats Project, which provides a way practicing midwives can provide high-quality data on their care, I saw that where my data was lacking was also a general lack in the quality of our data. So we on the MANA Stats team added a few more questions and as of about a year ago, we have been collecting data that will work much better when analyzed for my length-of-pregnancy project.

I am excited about myself or somebody else re-running my study with this better data whenever it has been validated and can be used for research--pretty soon now, I think. That will be a big accomplishment, if I make it that far with enough mental stamina to keep on track doing that kind of analysis and writing. I will have help from my researcher friends who volunteer with me on MANA's Division of Research. However, one thing I realized when I presented my work so far at the 2014 MANA conference, to an audience of about 40 very interested midwives: that was maybe one of the best 90 minutes of my life. So even if I don’t get to continue with this particular project, I feel like for me that was the apex of it and I got to experience it without any compromises. I guess in some ways I am a teacher at heart.

So that’s what’s going on in the currently offline research mind of this "midwife scholar.” Philadelphia University was sad to lose me as a student but they named a new research award after me to keep my name around. First recipient? Me!

new research award

Over in the world of MANA, there is a new poster-presentation contest each year at the conference to encourage entry-level research and project descriptions. I have gotten involved in that, as well, and lo and behold, they went and named the contest after me. A very good way to get me to put energy into it :-)

One really lucky thing I see having happened in my life is all the work I did to get ready for the CM program and then the courses I took in the program itself. Things like pharmacology, which I did *not* enjoy and did not really see the point of at some times, have really helped me and served me well as I turn my concentration and what expertise I can muster to metastatic breast cancer. Having a disease like this means, to me at least, becoming an expert in your own case and care. I do it not because I don’t trust my care providers, but because it helps me feel a little bit like I’m helping drive the bus. Even though this particular bus doesn’t maybe take much direction in the end. So although I had to give up on grad school, it has helped me immensely in the last two years, for which I will always be grateful.

Lemon drop

Wed, 27 Apr 2016 18:44:23 +0000

I feel like I am a lemon drop being sucked on and getting smaller and smaller.

I spend lots more time dozing or just eyes-closed resting than I did a few months ago. (But maybe that’s the effect of trying out morphine every 4 hours for pain?) I have less and less energy for physical projects–i get worn out and have to rest or stop.

I am spending more time in bed during the day and less downstairs, where I have to admit it’s much harder to get comfortable. Only when my picky body is comfortable and I’ve been resting for half an hour or more can I stop trying to ease what hurts and feel like “a normal person.” Whatever that means.

I have less mental energy or stamina. I can feel my mind getting tired. It is hard to engage in conversations on complicated topics. For a month or two I have been confused about day of the week, day of the month, and even what month it is and which one comes next.

What I’m trying to explore here is what makes for that lemon-drop feeling of there being less and less of Me, the Unique Ellen, in contact with the world. I wonder if I will just melt away gradually.

Cancer Problem-Cause quiz

Mon, 25 Apr 2016 12:10:51 +0000

Just for fun, print and try this quiz!

Problem-Cause Quiz

Mobility

Mon, 25 Apr 2016 12:08:40 +0000

I can’t walk well right now because of my numb and untrustworthy left foot and ankle; because I get big dizzy spells when I try to walk after sitting for 45 minutes or more; and because I get out of breath from just the effort of walking.

A few days ago I scolded myself silently, again, for being so darn stubborn, and used a motorized cart at the grocery for the first time. I don’t want to be seen as someone who needs one of these at the store. But now I am. It was helpful and I got to do the shopping with my friend Lisa instead of either wearing myself out trying to walk the whole store or waiting in the car. And on my maiden voyage, aka learn to drive this weird vehicle, I only ran in to one thing.

Giving in to the cart

And, and, and I actually ordered a walker today. I was convinced to try it once I saw a model with a built-in seat–handy for dizzy spells–and made of purple anodized aluminum.

Mobility being my biggest challenge right now, I guess I will throw tech at it.

My neighbor Bella goes bald!

Sat, 16 Apr 2016 21:00:52 +0000

Wow, my teenage neighbor and fellow QIVC member Bella shaved her head a couple of weeks ago to raise money for cancer research and remember and honor some people in her life who have had cancer. I just had to go watch the mass shearing in the high-school gym, where Bella and dozens of other teens bravely said goodbye to their hair when it wasn’t even spring yet!

Thank you, Bella!

End of today

Thu, 14 Apr 2016 18:51:20 +0000

Charging my apple

Today’s chemo was the start of some cycle or other–9th intrathecal methotrexate maybe, and 6th carboplatin & gemcitabine? I am not keeping track right now. In fact for the last week or so I have not only been deeply physically tired but also very ungrounded on day of the week, day of the month, the month itself. My routine at NY Oncology Hematology keeps changing and I am just having trouble keeping up with things. Like, is it April or is it March still? Or possibly it’s already June? Yikes. Hope the fog passes over soon. And noticing how dependent I have become on the iCal app on my phone.

Cerebrospinal fluid is still coming back clear–no more cancer cells circulating–so that’s continued good news.

Today we were at NYOH from 1:30 to 5:00. Whew! Blood draw for lab work, visit with the Nurse Practitioner who works for my oncologist, IT chemo, then regular (through the port) chemo, then finally all done and out the door at 5:00.

I got right in bed because I could feel I needed REST. Getting better at realizing that, maybe, instead of trying to power through it.

Body by Steroids

Thu, 07 Apr 2016 10:31:21 +0000

Asking and asking and asking for help large and small

Thu, 07 Apr 2016 10:28:57 +0000

orange being peeled for me

When I found I couldn’t peel an orange or a grapefruit anymore (I like my grapefruits eaten in sections like oranges) I started working on how to cut them into sections so they could be tackled with only one working hand. That was not so easy–it was pretty messy and wasted a lot of juice on the counter–and took a cleaver and an acceptance of some pretty weird-shaped slices. After a month or two of this I saw someone at our QIVC retreat peeling an orange so I asked if she could also peel me one. Which she did. And I ate it in sections instead of tearing pulpy pieces off slices of peel–and (heres why the blog post) it was so much more delicious and enjoyable! I had forgotten. I had settled for the self-sufficient DIY method that brought me noticeably less pleasure.

I assume no one out there in healthy-person-land, world of the well, wants to peel my orange for me. But I think this is wrong in general. People wish they could help, change things, make a difference–and this is one thing they can do for me, I guess.

Reality check

Sun, 03 Apr 2016 10:38:21 +0000

Surprisingly I don't think that often about the high chance that I'm going to probably die pretty soon from this cancer. I try to think about it, but it's really hard to conceive of, even when given a life expectancy that is measured in months. How to believe in that? *Why* believe in that? I don't really know how it will go and it is hard to believe, I guess, even for me. But then I step back a little bit and catch myself stumping around the kitchen, say, after breakfast—trying to do my part to clear the table—and I walk like a penguin and I almost fall down and I am breathing hard don't have any energy. This is *not* a healthy person.

So I walk to the fridge and put something away, walk back to the table, and walk back to the fridge and I'm panting. I don't have any energy and have to rest, but then I don't always rest because I'm stubborn so I end up wearing myself out like this many times a day. This morning after breakfast I decided to come up to bed again and sit and read so I had to get all the things I needed to do that and then come upstairs, which is hard these days. Then I remembered I would want the phone if it rang, and then I needed water, and then I needed to take a morphine, and once I did all that I was just staggering around like a drunken penguin because I just had no energy and could barely get myself to move around. So then I plopped into bed and waited a little bit before I could swing my legs in because I was so tired.

So I keep wearing myself out and I don't notice all the time how far I am from being a healthy person. Then some kind of reality check sinks in, like being offered a cut in the bathroom line at the movie because I have a stick to help me balance and I am obviously not healthy. Oh. This is me they're offering special treatment to?

On paper right now things look okay. The chemo we started in December and early February are both working, it seems like from the CAT scans and MRIs, and so on paper my cancer is ‘responding to second-line therapy” blah blah blah but then in my real life right now it seems really hard. Maybe more for emotional and psychological reasons than physical, but the physical – particularly fatigue and trouble walking – is pretty tough right now.

Frustrations abound

Tue, 29 Mar 2016 11:13:24 +0000

Living my life has become what I’m trying to think of as The Ellen Project, which I used to be able to manage on my own but now often need help with. Here is a whiny gallery of my daily challenges and–usually–frustrations related to my neuropathy-damaged hands.. There are many things I can no longer do for myself…big and small…or tasks that take 3-10 times longer than before, and maybe hurt along the way.

Mouse over the pictures for a quick description. Click on the pictures to read more about them. I will be adding to this gallery of woes as they stymie me.

Last week's round of imaging to see what's what

Sat, 26 Mar 2016 20:49:12 +0000

****Last week's 3 CT scans showed some response to the new (since-December) chemo combo in my chest/abdomen/pelvis: very good news, though not all the new mets are gone. Some are just unchanged or smaller.

My various brain/spine MRIs showed leptomeningeal effects still in the central nervous system but nothing worse than late January when we started the intrathecal Methotrexate twice a week. My MRIs showed a variety of effects in the brain, always so hard to puzzle out because so much has occurred in there over the last 2-3 years, but nothing too alarming.

Brief update

Thu, 17 Mar 2016 11:10:59 +0000

Chemo vs. scans to see what’s been accomplished inside of me :)

I also have 3 cranio-sacral therapy appointments set up for March to work on my spinal cord and brain from a different angle. Back when I made the appointments in early February, before starting I didn’t really know whether I would still be around for them.

Ups and downs

Sat, 12 Mar 2016 15:18:07 +0000

The last few days have been frustrating because just as I felt like I was getting substantially better in the strength and muscle department, I lost some of it somehow. My thighs were no longer able to get me to a standing position without pushing with my arms, and my knees kept wobbling out on me unexpectedly. I was back to 2 feet on each stair instead of 1 foot per stair. And on Saturday my vision got weird – my left eye is a little out of sync.

Meanwhile, my voice seems to have gotten weaker and more ragged. Last night when we went to a Buxton event, no one could hear me talking unless I really pushed my voice hard. And just sitting and talking seems to wear me out more now than it did before–or maybe I’m just noticing it more and taking care of myself better.

I am less sturdy on my feet again and needing help with dizzy spells and sometimes getting up and down. Which sucks, because I really was climbing out of that place for the last few weeks.

On the bright side, though, both Will and Jess are home for spring break now so our house is full. And my friend Leigh is coming today to visit for a few days! I hope I don’t have to spend too much of that time resting.

Vanities: smarts

Fri, 04 Mar 2016 13:04:37 +0000

(Part four of four musings on vanity’s role in my life.) Finally we come to my final vanity: Vanity about smarts.

I have always considered myself a smart person. Besides this, I have had to navigate in the medical world, specifically the world of breast cancer, on and off since 1995. Before my diagnosis of metastatic cancer in November 2013, I had been in graduate school for midwifery for a while – wondering if some courses, like pharmacology, were ever going to really come in handy in my life as a homebirth midwife. The midwifery program involved a lot of researching studies, learning how to critique them, and understanding the value and limits of statistics. So when I had to switch my focus from midwifery to cancer, it turned out that all of this grad school stuff was hugely useful.

It is important to me to keep track of new studies that might be relevant to my case, which makes a lot of sense because we might find something useful that way. But for me it’s also about showing my doctors that I am comfortable in their world and using their language and jargon. When I meet a new doctor, it doesn’t take long for me to use a big medical word or otherwise indicate that I have some medical background; I can see people changing how they talk to me after that. I seek out doctors who like to teach; that means they are open to questions and being questioned, and will be patient with my need to go deeper into explanations and probably a lot of patients want.

Two things made me notice this vanity of mine about smarts: last summer, faced with a variety of weird symptoms that started all at once, I figured out that it was related to the vagus nerve. My oncologist and others gave me other explanations, but they didn’t make as much sense to me based on what I knew about the vagus nerve and what had happened in my body. Eventually I went to an ear, nose, and throat specialist who put a camera down my nose and looked at my vocal cords. Based on what he saw and what I told him about my symptoms, he confirmed that the vagus nerve had caused the problems. I was probably the only patient he saw that month who high-fived her husband upon being told she had vagus-nerve damage. But I was so pleased with myself! I had figured it out with my knowledge of anatomy and physiology and my careful observation of my own symptoms.

Then later in the year I got pneumonia. One day I felt really rotten and short of breath without knowing what was wrong; the next day, when I went to chemo, I insisted that they checked my oxygenation level even though they don’t usually do that along with blood pressure and temperature. The number that the pulse-ox machine showed got me a quick ticket to the emergency department instead of chemo that day, and I was admitted for treatment for a few days. What makes me a bit proud about this is that I figured out something was wrong pretty early in the disease process, so I wasn’t too miserable and it was pretty easy to get rid of.

Another thing we did with smarts (Eric helped) was to create a spreadsheet to track my brain mets. The written reports were hard to compare and I noticed the radiologists who were writing them were sometimes failing to write follow-up notes on mets that had been seen in a previous scan and listed in a previous report. Tracking the mets this way just seems more organized–thus less likely to lead to mistakes–so why not do it? Since the doctors won’t, I do.

So I feel pretty vain about being smart in this realm that I am forced to inhabit. Sometimes when I don’t feel energetic enough in the brain to engage at this level, I wonder how I will adapt if I ever lose the sharp, medical-smarts part of me for good. I know there are cancer patients who do none of my self-education and don’t ask a lot of questions, and that must be fine for them. But for me the educated back-and-forth and discovery of interesting new studies is part of this whole experience–a part that buoys me up.

IT Methotrexate is working!

Wed, 02 Mar 2016 18:57:28 +0000

I’ve been getting intrathecal methotrexate (methotrexate injected into my cerebro-spinal fluid) for about a month now, which makes for a busy chemo schedule twice a week in Albany along with my other chemo regimen. But it seems to be working!

Texting with my oncologist

I don’t know what this means for my chemo schedule in the next month or so, but I I know it’s good news. Only half of patients respond to methotrexate at all, so I’m in that half, which is great. Now median survival is seven months, with 15% of patients stretching that out beyond 12 months.

My report card

Mon, 29 Feb 2016 11:48:04 +0000

Recently a few of my closest family members and friends got together and wrote up a report card for my recent course load at the University of Oncological Resistance (UOR). It is pretty funny so I thought I would share it.:

Ellen's report card

Today is “quick” chemo (just methotrexate) and my stepsister Deb, who is visiting, is taking me. Then we will stop by the Honest Weight food co-op in Albany to get ingredients for all the yummy things Deb is going to cook for us. Wooo!

I am still really fatigued most of every day–I assume it’s the demanding new chemo schedule. Hard to adjust to, and I hope it’s just a phase.

The evolving bucket list

Tue, 23 Feb 2016 21:24:20 +0000

Originally my sparse “bucket list” featured taking my family with me to the bottom of the Grand Canyon, where I had been but they had not. Then there was spending relaxed time in France, which we did for almost two weeks last summer; and I wanted to go to England again, too (which I did last September with my mom and Spee).

Now the list looks like this:

Finish building a Little Free Library for QIVC and neighbors. This is now 90% finished, thanks to this weekend's focused work by my mom and her friend Paul!
Get the decorative railing at the top of the stairs finally finished (by our builder friend Glenn). Designed by me years ago, it was set aside so we could finally move in! and finish it later. It is now over five years later. :)
Go to Montréal on Amtrak.
Teach Jess how to shift gears.
Go to Chipotle with Will! Never been there, and he really likes it.
Some more time in New Orleans with my mom (who lives there) and her cast of friendly characters.
See the barn swallows return to their summer haunts around our house and build their yearly nests in our eaves.

Seems doable!

Weekend update

Sun, 21 Feb 2016 20:27:48 +0000

No, not that Weekend Update!

Dealing with Fatigue:

Boy, do I sound tired! Possibly more tired in my voice than the rest of me. I did notice today that my voice was really weak, so you are getting to hear what that sounds like. Not much like me, at least to my ear.

Post-chemo report

Thu, 18 Feb 2016 19:30:14 +0000

Today was almost completely taken up with “double chemo” along with a day-one-of-the-cycle appointment with the nurse practitioner who works with my oncologist. My oncologist is on vacation–and I hope he is vacating enough because he’s got to last me and not burn out! How is that for thinking long-term?

I still like to think of these chemo days as pampering and “spa” days. I can ask for pillows and warm blankets and stuff from the nurses, and I know a lot of them by now somewhat, so the infusion suite is a friendly place to spend a few hours.

Seems like the first day in each cycle of Thursday chemo (Gemzar & carboplatin) is about four hours long, start to finish. That includes blood work and an appointment with a practitioner before chemo. And intrathecal methotrexate afterward. today we left the house at 11 and returned at about five I think.

I felt like hopping into bed and invited some of my associates to watch a stupid movie with me. It was really stupid. I have a small headache and just feel kind of punky, but no nausea or queasiness – all that anti-emetic premedication really works. And in fact I am looking forward to eating some dinner.

Meanwhile, back at home, if you hold your arms just right…

…Look what you might catch!

"Quick" chemo today

Mon, 15 Feb 2016 18:40:49 +0000

A bit about today’s trip to Albany Med:

Late this afternoon, after Jess and I watched some episodes of “Elementary,” our friend Arti stopped by with some homemade creampuffs.

And I replied irreverently:

Chemo-day update

Thu, 11 Feb 2016 19:11:17 +0000

About today and my current chemo schedule etc.:

After all of this, I felt a little queasy and rested In the car all the way home. But then I walked from the parking area to our house, ordered some food stuff from Eric, and marched up the stairs wearing my back pack foot-over-foot like a normal person (1 foot per stair). Also, Spee and I took a 15-minute walk on the road in the snow just before Eric and I left for Albany. So although I am tucked into bed right now, I am feeling like I had an energetic day.

That walking up the stairs with the fullback pack myself was a first since early December. Never discount how bad pedal edema can be for your strength and health, That’s my device.,

Speaking of advice, at the end of our time with the nurse practitioner, I offered again my attention as a midwife, since she is due with baby number two in April and not having a very happy pregnancy. So I didn’t push. But she took me up on it today and we talked about the recommendation that she be induced for this baby because her first baby came pretty fast. She lives 20 minutes from her hospital. It was a very fun conversation to have because I got to use my midwifery skills right on the spot.

Now I’m back to resting my brain and body in bed with Eric next to me.

Hair fun

Wed, 10 Feb 2016 12:01:16 +0000

Lisa and Aaron, who visited to help out (tremendously!) for the past few days, did the clay-dye job the other night in the bathroom with friend Anne while Jess supervised from the bathroom shower.

Hmmm, I look a little tired in that last photo. Yesterday was my fullest and most energetic day in weeks. Shivani and I went to midwifery peer review, driven by Lisa and Aaron, who explored Saugerties. Nowdays I pay the next day for days like that--just in fatigue.

Plans for the rest of the day: a visit from the palliative care nurse, and before that some craniosacral therapy with my friend Meg. Then maybe a nap or Netflix before dinner.

I am still working on those voice memos for the blog. Let me know if they don't work for you–hoping they are easy because they sure are easier for me.

Now for lots of pictures! I am really enjoying pictures these days.

Shaker Lemon Pie story, plus.

Sun, 07 Feb 2016 21:23:09 +0000

Thanks to good drugs, I had no nausea or vomiting after my double chemo last Thursday. Go, Emend! I don’t care how expensive you are–I love you. I do seem to be more worn out than usual. Or than I expected. Since my legs felt stronger, I went for a walk beyond the mailboxes on Thursday or Friday, and I made it back! With a few rests. But this weekend I have mostly sat around and indulged in Netflix, at least when not learning new blog posting technologies such as below.

In general, though, I feel all right and I’m doing pretty well at taking care of myself except for the things that require two functioning hands. Unfortunately, this includes putting on most shirts and other important self-care tasks. My hands are damaged from chemo-induced neuropathy and we don’t know yet whether, now that I’m on a different chemo regimen or two, they will get worse or better. My feet are still pretty bad, especially the left one, which feels like a block of tingly wood that does not want to be touched. That left foot is the major cause of my unsteadiness walking.

Here is last week’s community Shaker Lemon Pie story out loud:

Lemons and sugar

One-crust pie

Two-crust pie

Prevailing mood post-surgery on double-chemo day #1

Thu, 04 Feb 2016 22:00:18 +0000

Chemo took a long time today but went fine. When we met with my oncologist beforehand, he noted that even with a brain bleed and a hospital stay–which always kinda takes it out of a person–I was definitely clinically improved compared to my last few visits (meaning he could see the difference in my mood, energy level, and strength). That was sure true–I could feel myself getting stronger and more stable in the legs even every day I was in the hospital. And being more able to take care of dressing and stuff, too, despite the lack of one functioning hand and having, still, one block-of-wood foot.

After all, it's not brain surg--oh, yeah it was!

Wed, 03 Feb 2016 18:49:18 +0000

Call went well with the surgery yesterday midday and Paul has gone well cents. Haahaa

(“All went well with the surgery yesterday midday, and all has gone well since.”) Just thought you all might like to see what I have been trying to live with re dictation software so far!

We are home and some beef stroganoff awaits me for dinner downstairs…so that’s the news for now.

Resting up at home after a nap together

Still in the hospital, but otherwise great

Tue, 02 Feb 2016 22:43:27 +0000

Perhaps you are wondering how this latest day stuck in the hospital went. Here's the report!

First night in the private room

Yesterday's final CT scan showed the bleed beginning to resolve. Yay! So all was set for surgery today. I was NPO--no food or drink--from midnight on, but got permission to skip the all-night IV fluid drip because of my previous horrible hospital-acquired edema that pretty much disabled me for 3 weeks. Then they kinda had to let me have ice chips this morning.

Surgery went well around midday and now—after 10 pm—Eric and I are in my observation alcove for the night (no more private room) and are enjoying ice cream after a delicious and long-awaited Panera soup, salad, and bread-and-butter dinner. I think I ate enough to make up for all day’s no-food order!

We’re going for a walk around the floor soon, before Eric leaves for the night. We walked 0.6 miles this morning before it was suddenly time to go to surgery. I am feeling stronger in the legs every day, even in the hospital,

After he goes…*New Yorker* or Netflix w/ headphones until the dexamethasone I took late at 6 will let me fall asleep. Patients in the neighboring alcoves seem to want the TVs on, even this late, so I will need the earplugs I received a few nights ago in an earlier loud alcove room down the hall.

We expect discharge tomorrow, whether early or late in the day. Eric will be back in the morning to wait it out with me. Normally someone post-op with a brain bleed might be kept an extra day or two for Heparin and observation...but my neurosurgeon said he and my oncologist agreed they could only push me so far.

hidden toes

badass selfie!

Another evening update from the hospital

Mon, 01 Feb 2016 18:47:18 +0000

I am still in the hospital, but in a private room now so things are better. Last night we--five of us--had a Thai food picnic along with cranberry-orange granita made by my friend Isa, and then Jess and I watched our TV show together while snuggling and Eric did a bit of work in the family waiting room.

I did not get to go home, but surgery is scheduled for tomorrow. Morning, we hope. Today I had vein studies (ultrasounds) to assess clot risk and another CT scan that the neurosurgeon will use like a GPS map tomorrow. Other than that, it has been walking the halls, meeting new nurses, and doing a few bits of business with Eric, who arrived around 10 AM.

Right now we are waiting for Jens, Spee, and Jess to arrive for dinner and hanging out. This is one of Jess' two weekly nights at home, because they are boarding five days right now at Bard Academy. So I want to see as much of Jess as possible even if I'm not home.

After an extra weekend spent at home instead of at Buxton--which ended up being spent largely here at the hospital or back-and-forth in the car--Will took one of our VW's back to school with him yesterday so he can come back and visit when he needs to.

Spirits are good even though I miss my bed and my sofa and my fire. I have my people.

Quick evening update--good news

Sat, 30 Jan 2016 21:17:20 +0000

Just heard from my new nurse that my CT scan at 1 PM showed stable bleeding--so that is excellent news, no spread of bleeding to be seen today and no need to check my neurological all the time tonight. Woo hoo!

Still hoping to go home sometime tomorrow to await the Ommaya surgery when the neurosurgeon decides it's time. Discharge will depend on both the Neurology and Neurosurgery services setting me free; then the Medicine service will cut me loose as well.

Even later and less greater happenings

Sat, 30 Jan 2016 16:39:45 +0000

Yesterday I got admitted to Albany Med for a little cerebellum bleed discovered when doing pre-admission CT scan for the Ommaya reservoir surgery Tuesday. So now it's the next day and I am at AMC being checked every hour for neurological status, which is fine so far, despite a couple medium headaches. Tylenol worked! I will be here most likely until tomorrow. Eric will be home this afternoon from his California work trip. My mom is here too until tomorrow.

Latest not-at-all greatest developments

Mon, 25 Jan 2016 18:01:04 +0000

The results of my recent MRIs were not good. The pelvic MRI to see what might be causing left leg pain showed "patchy areas" in the cauda equina (nerves just below the end of the spinal cord). That worried everyone and triggered a quick repeat brain MRI and a cervical spine MRI to look for more deposits or "thickening" in various places. Both showed evidence of more cancer-cell deposits on the lining of the spinal column and brain, which can cause swelling that impinges on nerves and do other damage to the nervous system and the brain. Cancer in the cerebro-spinal fluid, which is called leptomeningeal carcinomatosis or leptomeningeal disease (LD), is just about the worst development in metastatic cancer.*

Eric and I talked with my oncologist for half an hour Saturday morning (he gets called at home with bad results). We discussed treatment options and the option of no treatment--because the one standard treatment for LD only works half the time and has nasty side effects. "Works" means you maintain the function you have--people don't (usually) get better from this. Life expectancy with no treatment is only 4-6 weeks. Life expectancy with standard treatment, according to one study, was a median of 7 months for LD from breast cancer, and shorter for LD from other common cancers.

So that's sobering. We had lots of questions and called him back that night to discuss them. But basically I just don't think...or feel...that it's time to give up yet. 4-6 weeks? I will try for those extra months as long as my quality of life is still decent despite side effects--headache, nausea, vomiting. And more trips to Albany; twice-weekly chemo delivered--here's the cyborg part--directly into my brain via a "reservoir" under my scalp, connected to a tube that reaches into one of my large ventricles. That way the drug can be infused directly into my cerebro-spinal fluid (CSF). It's called an Ommaya reservoir but I just call it the brain port.

I'm also planning to try taking penfluridol, an old oral antipsychotic drug that seems to kill triple-negative breast-cancer cells...apparently in people (retrospective study) and definitely in mice (randomized controlled trial). Would that I were a mouse. But at this point I'll try it anyway if I can. The exciting thing about this drug is that it acts in the brain perhaps even more strongly then in the rest of the body. Most chemotherapy drugs, by contrast, do not cross the blood-brain barrier at all. So for someone with cancer in the body and worse cancer In the brain, it seems worth it to start acting psychotic right away.

There don't seem to be cutting-edge or novel ways to treat leptomeningeal disease that are being done at bigger cancer centers; the standard of care is methotrexate everywhere, It seems. Eric and I were exploring the idea of going somewhere bigger and busier to deal with this complication because a place like Dana-Farber would probably have more experience with LD than our one oncologist here in Albany. But that introduces the need to drive long distances for treatment, which decreases quality-of-life quite a bit. We also asked about and looked into clinical trials but have yet to find anything that fits.

We are still draining my left lung every three days and the amount of liquid is going down, Which may mean that the chemo I'm on now is working to kill off little cancer cells. Cross your fingers!

I am now back on high-dose steroids to decrease brain and spinal-cord swelling, Which could mess with my nerves or cause a seizure. No one will ever see my cheekbones again. I am very sad about this. And a lot of me does not quite believe how this is going–that is, about as badly as it could go. But on the other hand my foot edema is gone and my daily headaches went away and although I have LD, it does not seem to be kicking my butt with its patchy deposits at the moment.

More later on all the thoughts this makes us all think...

*LD is more common now that more women are surviving longer with metastatic disease--the cancer has more time to find its way into the CSF.

Palliative care

Wed, 20 Jan 2016 17:09:20 +0000

What comes out of my pleural space

This morning we had our first visit from a palliative care nurse. We got set up with the Visiting Nurse Association for oversight of the lung-draining process, which continues every other day for now. Then we found out that the VNA also has a palliative care program so we signed up for it. Now we have someone who can help us investigate various pain-relief options and also set me up with a visiting occupational or physical therapist who can help with my left hand. As part of this they offer something called anodyne therapy which I had never heard of, but which looks like it might help my hand pain. Anybody ever had any experience with this kind of treatment? It seems to work by increasing circulation.

She also gave me yet another end-of-life document to fill out: a MOLST or Medical Orders for Life-Sustaining Treatment. ****I thought all my work on the Five Wishes document was all I needed to do, but apparently not. So I will tackle that eventually.

The foot and leg edema that was an unfortunate gift of my last hospital stay is getting better slowly. My right leg and foot are pretty much all better and that leg feels stronger lately too. My left leg is no longer swollen but my left foot is still kind of a puffy mess. Yesterday when we went to the office of the compression-garment expert, I not only got a compression glove for my left-hand–to address the edema in my fingers as well as protect that hand from accidental touching–but we also asked her advice on the foot edema. We have been getting different stories from different semi-experts about what might help besides elevation and eating lots of protein. She suggested a compression stocking and explained why there’s no such thing as a compression sock. She had some samples, so now I have a pair of nice black light-compression knee-high socks and I think wearing one is already helping the foot a little bit.

Eric goes to California on Sunday for a week and my mom comes Sunday night for the duration. I am lucky to have so many retired and self-employed people in my family who can come visit when it’s needed!

I didn't sign up for this.

Thu, 14 Jan 2016 15:38:30 +0000

I think I have made my peace, or as much peace as I can right now, with the fact that I most likely will die much sooner than everyone else I know. Of course this sucks, but I don’t find in myself a lot of feeling that it’s unfair. I don’t ask, “Why is this happening to me?” *This–*the likelihood of dying soon–is kind of what I’m signed up for at this point. So I’ll try to make something good come out of it too.

What I have not made peace with is the amount of pain I am experiencing along the way, or the disability that comes from my peripheral neuropathy: the numbness, tingling, shooting zapping feelings in my feet and the numbness, constant cold sensation, weakness, and clumsiness in my hands–plus pain with most contacts of the left hand, which I keep tucked away in a mitten for protection. I am basically one-handed right now and that one hand ain’t so great.

The back pain that was my daily torture for months has subsided substantially, and my daily headaches have pretty much gone away. Those are good developments. But the extreme edema left over from my December hospital stay has caused a lot of foot and leg pain and made it even harder for me to walk. Before the hospital it was hard for me to walk any distance, but since then I have a lot more weakness and pain in my legs–maybe due to something called steroid myopathy. (Still working on getting off steroids.) It is painful and hard to stand up and I am unsteady as I shuffle around. And my knee still mysteriously hurts. And my neck muscles spasm some mornings for an hour or so. Why? Who knows. (I am taking various drugs to address the pain with varying results.)

So when it comes to the daily pain burden and the increasing disability, I do wonder, “Why does my journey have to include all this? It’s not fair. It’s too much.” It’s harder for me to handle than the underlying fact of incurable cancer. If there is a way I can keep on living despite this disease, does that mean years ahead of hurting this much every day? Of needing this much help with daily basics like getting dressed? Wow. I sure did not sign up for that.

Finally made a T-shirt expressing my philosophy!

Sat, 09 Jan 2016 15:00:35 +0000

It pretty much applies to all realms of life.

Want one? You can have one too.

Sign up for blog-post alerts by e-mail

Sat, 09 Jan 2016 14:24:00 +0000

The sign-up box at right is now working fine. Use it if you want to get e-mail whenever I add a blog post.

Phase Two: Definitely the "one damn thing after another" zone now

Sun, 03 Jan 2016 22:57:13 +0000

Friday 12/18 after chemo I was feeling pretty good overall–the Zofran was working to keep nausea away and I didn’t feel too bad. But then Saturday I woke up feeling totally knocked down. I couldn’t walk to the bathroom without help. Not only were my major muscles weak, I felt sort of like sludge was in my blood vessels instead of blood. Sunday afternoon we talked to my oncologist and decided to go to he ER to find out what was going on–most likely the pleural effusion had built up again and would need a more aggressive solution than the one-time drainage of the previous Wednesday.

In the ER they use an ultrasound to confirm that the pleural effusion was back and was interfering with my breathing and oxygenation. But as an early Christmas present, they also followed some clues from the EKG they did to find out that I had fluid around my heart as well. That was not an emergency, but needed to be dealt with pretty soon before it became dangerous. So I was admitted to Albany Medical Center yet again to have two procedures done the next day: a drainage catheter put in to the space around my heart for a couple of days and a more permanent catheter installed to drain the space around the left lung.

Glimpse of oncologist using his wiles to get me moved to the oncology area, a better neighborhood of the hospital

I spent Sunday night in the hospital, had the two procedures both done on Monday afternoon, and was discharged on Thursday, Christmas Eve. Since then I have been home sitting on the couch or in the bed waiting to feel better and having Eric drain fluid out of my lung every afternoon. How romantic!

We went to NYOH yesterday to see about chemo, which was on the schedule, but I didn’t really feel well enough yet. My feet and legs are really swollen from the IV fluids I got in the hospital and it’s painful to walk. I guess I am less out of breath now. So that’s the short story of the latest bumps in the road. There may be more to do with the heart, depending on whether the fluid is building up again. Both buildups are caused by tiny cancer cells blocking the drainage of normal fluid, so killing the cells off is really the only solid solution.

In other news, both kids are home from school and my mom is visiting so there are lots of people around to help this invalid get through the day.

In other bad news, the reason I need so much help is that the neuropathy in my hands got worse enough during my time in the hospital that I can’t touch-type anymore, and can’t do a lot of other things, like buttons and opening jars, requiring reasonably working hands. Besides them being clumsy and numb, one hand also hurts when touched by almost anything, or used, or lowered below the waist.

Had to add a few more equally obvious Don’ts.

In the plus column I’ve gotten the lymphedema in my left arm under control so I can wear the lighter and more comfortable compression sleeve and gauntlet during the day and only wrap my arm in the graduated-compression bandages at night. In the hospital, though, it was bandages 24/7 and the nursing staff put up a sign–which seemed so obvious given the big bulky bandages that we felt compelled to add to it:

**"No BP Left Arm"**

**"(No SpO2, no IV, no lifejacket storage)"**

Best bald-head covering advice I've encountered

Sat, 26 Dec 2015 14:27:33 +0000

Much has been going on in the last week, which I will write about soon, but in the meantime here is a source of info for anyone else has had to give up their hair to chemotherapy. I am expecting this might be me in 2 to 3 weeks.

It even taught me a few new tricks!

The only thing she left out was the need to pad your bald head to make hats fit or to make a thin head covering look like there is hair underneath it.

Start of Phase Two

Fri, 18 Dec 2015 11:20:19 +0000

I am at NY Oncology Hematology getting my first dose of my first cycle of my second chemotherapy regimen: Gemzar (gemcitabine) and carboplatin. I like to sit in an out-of-the-way corner because it’s quieter–no chair neighbors watching TV. It’s the same chemo schedule as before–Day 1 and Day 8 of a 21-day cycle–but very different drugs with more recognizable “chemo sucks” side effects.

I have been very lucky to be on a chemo drug without those side effects all these months! (22 months to be exact).

But now my cancer has begun, as my oncologist said Wednesday, “to start acting the way we expect of triple-negative breast cancer.” Meaning the Eribulin stopped preventing new sites of disease from developing, and up they popped. Last week’s CT scans showed all this:

—the many small “spots” in my lungs grew, showing that they are metastases (which we pretty much knew)

—there’s a 1 cm lesion in my pancreas and some mysterious associated fluid collection around the pancreas

—another small tumor seems to have developed on one adrenal gland

--there are two enlarged lymph nodes in my abdomen

—in the lining behind my left lung was about a liter of fluid that was a mix of blood and pleural fluid. Not sure what caused that, exactly, but it is likely due to some more tiny cancer cells blocking the normal drainage of the area between the two pleural layers (some fluid is normal). I had it drained by the pulmonologist on Wednesday--they took out 600 ml and said there was more in other smaller "pockets" they didn't bother to drain. Now we have to wait and see whether the fluid will collect again.

Other than the pleural effusion compressing my left lung and adding to my shortness of breath, none of these new things cause any symptoms. We hope that the two new chemo drugs will control or reduce them as well as keep control of my two original mets (R lung and sternum).

So I had a full month off of chemo. And now it's back to the negotiating tables since the cancer decided it had a lot more things to say to me.

Improving the blog!

Mon, 14 Dec 2015 17:54:40 +0000

My friend Lisa is helping me to set up e-mail notifications so that when I add a blog entry, anyone who likes can get notified of it by e-mail. It’s not quite working yet but…close! Stand by for future exciting technological announcements.

Vanities: usefulness

Sun, 06 Dec 2015 19:54:48 +0000

(Part three of four musings on vanity’s role in my life.) I have always enjoyed being a person who is useful, who gets things done, who follows through on details, who is handy, who helps others more than needs help herself. I can still be that person in some realms, but not others. I am riding out some big changes in what I do with my life energy and trying not to let them get me down or make me feel less of a valuable person than before.

But. I am a Certified Professional Midwife but no longer attend births. That is big. I gave up being the primary midwife for homebirth clients just a few months after my diagnosis; I had one pregnant client when I was diagnosed and was committed to seeing that through, but I could tell I would not have the space in my new life to keep that up. I assisted at a few births here and there after that, but the last one was in January. Now I am not healthy enough to get up and go to a birth in the middle of the night. And whether I would have the energy and focus to be someone’s midwife, even for a prenatal visit, is not predictable from day to day. But it’s not just on that level that I can’t practice midwifery right now; being someone’s midwife means taking responsibility for someone’s care and prioritizing their needs sometimes over one’s own. Being seriously ill means I can’t hold that space for someone else; to do it with full intent and generosity requires emotional and practical and what I think I have to call spiritual dedication that I just can’t afford.

So I am no longer serving women and families in the way I planned to do.

For the last 10 years I have worked with Eric as project manager of our shared Web projects and also as a junior programmer (learning as I went along from him). But the stretches of time when I feel able to dig in and write code, or debug code, are pretty few these days. When I had chemo in 2006, it took me 8 months afterwards before my brain was clear enough to really start programming again. So maybe some of the same thing is going on, or maybe it just takes a level of focus that is hard to attain in between appointments, taking medication, various self-care tasks, and feeling too bad sometimes to concentrate on anything much. So in the realm of programming I am not useful right now (even for my favorite project, the MANA Stats Project).

I’m unsteady on the stairs so I can’t carry a laundry basket up or down, and right now I’m too weak and out of breath to carry our big salad bowl to potluck. I am no longer the person who carries a visitor’s suitcase up the stairs. In fact, I seldom carry my own backpack.

I am always looking out for things I can still do, like empty the dish rack or dishwasher, pay the bills, make calls, deal with the junk mail, and fold the laundry (while seated on the couch). I like to find favors to do for people with the skills and abilities and time that I have–like fix an earring, or superglue a mug back together, or do the paperwork to sign a friend up for EZ-Pass. It’s important to me to still be useful–somehow. I am vain about, or overly attached to, being that person in the lives of others. When I can’t be useful, and the flow of help is even more one-way than it is now, will I still be as accepted and as loved?

P.S. Friends say that having the opportunity to help me and love me is the favor I am doing them, the gift I am giving them now. I hear that, but I think I am maybe not big-hearted enough to really understand it yet.

"Chemo holiday"?

Sat, 05 Dec 2015 21:40:49 +0000

I’m currently on a bit of a ‘chemo holiday” to see if that helps with my various pain symptoms and the neuropathy. I got numb fingers two weeks ago, which led to me calling off the Eribulin last week and the oncologist's suggestion of a “holiday” to give my body some off time and see if the chemo is contributing to or causing the various pains I have (mostly back and knee). So this is my usual week off, but i skipped my second dose of chemo from cycle 30 last week. II have CT scans next week, and then the week after we meet with the oncologist again to see what to do. (That's a l-o-n-g scan interv-hell!)

If the cancer hasn’t grown then probably a cycle's worth of holiday (3 weeks) before beginning another chemo—one that doesn’t have a big risk of neuropathy. If it has grown then no more holiday, I’ll start on something. Maybe Xeloda, which is suspected to maybe get into the brain (good for me). We decided not to dig into that decision until we need to. The chemo drugs known to work best for triple-negative breast cancer (TNBC) also have a high risk of neuropathy, so for now they are not options. Newer drugs (that may actually work just as well for me) have less risk.

The next step *should* be entering a clinical trial of a PARP inhibitor, very likely to work well on me because I have TNBC, but I need to be off steroids to be eligible. And I am far from being off steroids, unfortunately. But tapering down slowly--I have made it from 50 to 27 mg of Prednisone since the beginning of September. Headaches continue, but not any worse. And I have a new medicine to try that is aimed at headache reduction, starting tonight.

We’ll see what happens with my “lung spots”—I am hoping they are just sitting there still being mysterious and tiny.

Vanities: function

Thu, 26 Nov 2015 19:38:51 +0000

Moving on to the next kind of vanity (part two of four)…

Vanity about function: My body doesn’t do what it used to do. One year ago, I jogged three miles with my sister and probably went for a walk later on in the day, too. Back then I was doing interval training most days as well as walking two miles and often jogging a mile or so. I felt great. But it’s been a tough year, this Year Two of stage IV cancer. I am lucky to get a Year Two, I know, but it has been hard on me for sure.

I used to have good balance; now because of my numb left foot and my leg weakness, I am unsteady. When I stand still, I wobble. When I do qi gong, I lose my balance and have to grab for a chair or wall. When I start to move, sometimes I kind of lurch on my left foot. When I am walking, I feel better if I have three points of contact instead of just two. That means I run my hand along railings or just touch a wall, or hold Eric’s hand or arm. If my hands are full and I’m going upstairs, I run my elbow against the wall. I don’t need to hold on, but I need to have something to lean against if I lurch or lose my balance. And of course coming downstairs, I think about falling; I watch my step carefully and I hold on to the railing and I can’t have both hands full.

The numb foot also means I’m at risk of falling down: if that foot encounters something unexpected, like a tilt in the pavement or an apple in the dark on the farm road, it twists outward and doesn’t alert me soon enough for me to correct the imbalance. And my legs are sometimes too weak to catch myself, too. So I fall over to the left. Only about once every week or two! Sustaining no damage–it’s an easy fall.

I noticed this in July in France: I used to be the person who got out of the way by stepping off the curb, nimbly, when I and an oncoming walker had to negotiate a narrow sidewalk. Now I’m the person who sticks to the sidewalk and I make the other person give way, because I need to keep up my steady path on even footing.

Right now I can’t go for a real walk. For a long time my legs have felt weak, like I just finished a 10-mile hike, but I could ignore that–they didn’t feel worse with exercise–until recently, when I think they really did get weaker due to inactivity during the pneumonia. Right now a “short walk” means walking to the mailboxes and back. A long walk is if I get out on the road, which I only have managed once in the last week or two. My knee keeps me not walking, too, but I’ve been able to ignore that in the past. So it feels like it’s the lungs and legs that are keeping me from walking, or, in my case, strolling.

It’s a bit of effort now to stand up, or lean over and straighten up again, and I use my arms to help get out of chairs. Sometimes I think I shouldn’t do that, because it will just allow my legs to stay weak. But sometimes I’m just too tired to challenge myself. Every time I stand up I give myself a couple of seconds to get grounded and make sure I’m not dizzy. Also I plot my progress through the hazards of living room furniture or the mess on Jess’ floor, because I might trip or bang into something.

The star marks our house. Our cars are usually parked at right, by the road. (Click for bigger version of photo)

Since my hospital stay, we have been driving up the farm road to the house about half the time–the half when I feel more tired and will wear myself out walking from the parking area by the road. This is so ironic because I have been the person most defensive of the no-cars-on-the-farm-road practice the community agreed to. I was the one who was so happy when we agreed to put a sawhorse at the start of the farm road to cue people that they should park, not drive right up to the house (including driving on the lawn because what, no driveway?). And now who’s moving that sawhorse to the side on a regular basis? Why, us. It’s like a little ironic knife-twist in my side every time we do it.

It is hard to accept that right now I am so wobbly and weak and out of breath, and harder to contemplate that this might not be so temporary–that “recovery” in this context might restore some of my function but won’t bring me back to a year ago.

All of this means I now can’t hide in the world of the well. Even in that world, I show up as a sick person, whether I want to or not. And of course I don’t want to! The other day, a week after I got home from the hospital, I walked into a local farm & produce store. The walk from the car to inside the store was about 20 feet. I went in the double doors and paused on the floor mat, to plan my next direction so as not to wander and waste my energy. The woman behind the counter saw this and asked me if I was okay. I said I was. Then she offered to get me a chair to sit on. I explained I’d had pneumonia and I was just taking it slow. She went and got me a chair anyway, and showed it to me later when I passed by the counter. So, you know, my cover was blown the moment I walked in and paused! I bet I looked pale and wobbly too.

Fatigue means I ask for people to do stuff for me a lot–as much as my ego can handle–like go upstairs for something, or get me something to drink, or carry my backpack for me on the way to the car. Eric and I have a well-balanced dance of asking/not asking/assuming/not assuming that most often works really well–he doesn’t assume I need help with everything, and when he offers help he’s very matter-of-fact rather than anxious or over-solicitous. Sometimes I ask him to start something (like a dish for dinner) but I want to finish it because I want to have done something, and that’s okay too.

But really, it’s shocking to me how different my capabilities are from a year ago. How diminished. Am I this person? I did not sign up for this.

Vanities: appearance

Thu, 26 Nov 2015 19:26:58 +0000

I’ve been thinking about vanity a lot lately. I seem to have a lot of it. To me it settles out into some different realms:

Vanity about body appearance: from taking steroids for so long, I have chubby cheeks and a more rectangular face without noticeable cheekbones. My face really looks different from before. I was kind of dreading the steroid face all along, and here it is. No pictures of me look nice to me. It took me a month or so to stop not-recognizing my face in the mirror. This chubby-face thing really bums me out. I liked my old face and this is yet another sign of the mandatory ongoing negotiations with cancer.

The original face

April 2015–18 months in…

The steroid face!

I’ve also gained weight elsewhere on the steroids–that and a lack of ability to exercise much lately–and steroid weight goes to the midsection so I’ve got more of a belly than usual and my pants are tight around the waist. I was really feeling good about myself when I weighed 142 pounds and exercised every day; now I weigh 152 pounds instead and feel like there’s little I can do about it.

The combination of steroids and edema from my left arm means I have a double chin and maybe even a triple chin if I try, on the left side anyway. Who said that was allowed?

My hair is really thin; in August and September about half of it fell out slowly, and I don’t know why. Chemo? Steroids (possible)? Anyway I now have curly, more-gray-than-before, sparse hair. My scalp shines through. On first glance it might not look weird but I am definitely sporting the “chemo victim” look all the time now, like it or not. The curls that want to go straight up are not really what I wished for all those times I wished for curly instead of stick-straight hair.

On the other hand, this summer sometime my eyebrows grew back. For a while I had basically half an eyebrow on one side and 2/3 an eyebrow on the other side, and I had an eyebrow pencil and eyebrow mascara to make them look normal. Now I don’t need to bother, so that’s nice!

But the way I look now overall gives the game away: I am an ill person, not a healthy person. I am far more self-conscious now when I go places, like the chiropractor or even my oncologist’s offfice. In the waiting room, I’m one of the obviously in-treatment And when I dig into how I feel about this transformation, I find a lot of vanity about my previous appearance–which I was very happy with–and grief that I have lost that, and with it my own feeling of being attractive. I really liked my cheekbones.

Two years?

Mon, 16 Nov 2015 08:52:19 +0000

Yesterday was the two-year anniversary of when I found out I had stage IV cancer.

Welcome to lymphedema!

Wed, 11 Nov 2015 21:33:59 +0000

In England in late September my left arm started to swell up a bit–mostly it seemed like my hand. This is the arm with the DVT (blood clot) under the collarbone, and thus the arm I’ve been wearing a lymphedema compression sleeve on since early April to try to prevent lymphedema from developing. Lymphedema is common in an arm when you’ve had lymph nodes in your armpit removed as part of breast cancer surgery, which I have–in 2006–though I never had a bit of trouble or swelling with it before the DVT. Anyway the DVT is a risk factor for lymphedema too, because it causes venous congestion, which is a different kind of swelling but can interfere with lymph drainage. You have a whole set of lymph vessels and lymph nodes in your body that collect and drain lymph fluid as part of your immune system–lymph takes away the used-up after-effects of infection and your body’s fight against infection. Lymph nodes are the stations along the way where your body kills off organisms that shouldn’t be in your system (making more by-products to get rid of). Then it all drains into your bloodstream at the end. So it’s kind of like the Gowanus Canal–you don’t want it to just SIT there not moving.

You can check out this image to show the lymphatic system: Diagram of lymphatic system if you’re interested

Anyway there I was with possible lymphedema, but before I knew it I had blood clots in my lungs, and wasn’t allowed to follow up on the arm swelling because massaging the arm/shoulder might loosen up a few more clots. So I didn’t get to go until I was safely back on blood thinners for a while–Thursday before last. I learned how to wrap my arm in “graduated compression” bandages and look like a mummy. This, along with gentle massage of the lymph channels from my hand to my neck including my left side, would encourage the static lymph fluid to move along as it should. But it might take many weeks. ARGH! Another self-care thing to do, and this one takes about 20 minutes a day. Just what I needed. Then before my next followup appointment I was in the hospital with pneumonia. So I had to cancel last week’s appointments but it was really working! So I was excited to go in on Tuesday and show off my progress. Which was indeed impressive. (I think it’s because it was only a month of not treating it–not enough time for the lymph vessels themselves to get too damaged, so the flow out of my arm can still happen the regular way rather than slowly through the tissue itself. (Remember, everything in the circulatory system and lymph system works by differential pressures of different substances, and everything moves toward a lower-pressure area if it can. Veins and lymph vessels don’t pump their fluids themselves at all.)

Anyway, for some geeky reason I thought it would be fun to show how the graduated-compression wrapping works. So here is a brief photo series.

The prescription is to wrap the arm 23 hours a day!

When it’s time to redo the compression wrapping, first I take all the wrappings off my arm.

Then I shower. Then I apply more moisturizer than I normally would.

Then I tackle rolling up the bandages again (which are like Ace bandages but you don’t stretch them much at all).

So here are all the things I need, all ready for the wrap job. (Which I have decided to consider as a craft project.)

3 bandages in different widths, but first: the stockingette sleeve and the foam layer.

Then three bandages, finally secured with those little clips.

It all takes about 10 minutes from here.

First the stockingette sleeve with a hole cut for the thumb. This protects the arm skin.

Then the foam strip gets wrapped from the thumb around the arm up to the upper arm and tucked in to itself. This provides more padding and protection for the arm.

Next comes the narrow bandage that starts at the wrist and wraps over the hand 3-4 times, then goes up the arm until the end. Then a piece of surgical tape secures it (though again, it isn’t wrapped very tightly).

Don’t tape the foam or it rips!

Next the medium-width bandage, which starts below the wrist and goes up as high as it goes, then gets taped.

You’re supposed to avoid wrinkles in the bandages. But you also wrap it loosely enough that you can move your elbow freely.

Finally I put on the third, widest bandage, which often needs some assistance to get right, because though it starts below the elbow, it goes almost to the shoulder and it’s hard to do it right way up there where I can’t really see.

That bandage gets secured with the clips and then–pro tip!–tape goes over the clips to keep their sharp edges from catching on my clothes.

Then the extra stockingette gets pulled down over the top of the bandage to further protect my tender skin.

Voila! All done until the next shower.

And it’s working really well! They told me 4-6 weeks of wrapping before the arm would go down enough to stop wrapping and switch to a new fit and strength of compression sleeve instea, but by next week I’ll be ready for that step. Yay! (You should have seen the left arm–on the right in this picture–a couple weeks ago. It looked like a quite overweight person’s arm–still arm-shaped, but really big and round in all dimensions, and tense.

What a relief that something is going right! Even better than expected.

I need that right now because I’m still knocked out by the pneumonia (and blood clots in the lungs) and everything else seems like a big challenge everywhere I turn.

We are receiving so much help and company that it is easy to keep my mood basically positive most of the time, though.

Quick update

Sun, 08 Nov 2015 12:38:59 +0000

It’s Sunday afternoon and guess what? I still have pneumonia. (I have to keep reminding myself of this to explain why I am still so, so, so very tired and worn out.) We came home late Thursday afternoon and I keep waiting to notice I’m feeling better, but I don’t notice. I am doing much less coughing, though.

I didn’t have a headache at all on Wednesday or Thursday in the hospital, but we can’t figure out why. Oxygen? Antibiotics? Now that I’m home the headache is back, which is really getting me down.

Anyway, the plan for the next week is: rest as much as possible, take antibiotics, and eventually feel better. Then the week after that, back to chemo. I guess I’m just skipping the second dose of round 29.

My very first cancer hospital admission!

Thu, 05 Nov 2015 14:00:46 +0000

Woo hoo! Off on another adventure. *(Stage direction: read that with great irony)* Tuesday morning when I showed up for chemo I asked the nurse to check my oxygen saturation level because I felt really beat and very short of breath again (since Sunday). It was 89…when 94 & up is what you want to see, and in most healthy folks its 97, 98, 99.

So THAT earned me, instead of chemo, a day in the Albany Med ER, first getting a chest X-ray that showed fluid in my right lung, probably from a pneumonia or other infection that has gotten into my compromised lungs and got to stay because of the steroids that are compromising my immune system. I got put on oxygen to raise my blood oxygen level. My sinuses are pumping out mucus that I then violently cough up, which was tiring me out entirely. Finally I was admitted for observation, antibiotics, and continued oxygen, which did eventually help me feel better, once the coughing was under control with Robitussin. The first night I had a quiet mostly restful time in my single room (infection risk) on the renal transplant unit, where I guess they finally found me a bed at 8 pm. "Mostly" restful because of the 4 am check of vitals, arm stick for blood samples, and most absurd of all, weighing! Yes, here is proof of this Pythonesque moment:

Goings-on at the start of chemo cycle 29

Tue, 27 Oct 2015 15:47:54 +0000

I got good news today at my oncologist's office—my brain MRI yesterday turned up no new spots of cancer (in 4 months—my last MRI was June) and the ones zapped in May continue to cooperatively die and fade away. So that is really great. I don’t need more of that right now. Too much else to deal with!

My left arm, upstream from the original blood clot in my brachiocephalic vein, has now developed some lymphedema so I have to go deal with that at the lymphedema clinic—not that it will ever go away. Just more appointments and treatments and self-care regimens to incorporate into my days. Hoping it won’t get any worse.

Also, the lung CT I had on the 12th to confirm the blood clots in my lungs also showed that my “lung spots” seen on the 9/11 chest CT are “grossly stable," meaning that they basically didn't change/grow in that intervening month. That doesn’t mean that they aren’t new metastatic lesions, but at least if they are—which they probably are because they’re still there—they are slow-growing and still tiny. Or the chemo is keeping them in check right now, even though they showed up despite chemo. (That would hint that they are resistant to this chemo.)

And I got two hugs from my oncologist. He called me “sweetheart” and I let him. :) He has such energy and is so willing to meet me where I'm at that seeing him (which I do every 3 weeks, at the start of a new chemo cycle) is always a positive part of the day, even when the news is not good. I am lucky to have him on my team. I am very picky about my doctors and how they relate to me (and Eric): how willing they are to answer my many questions, how comfortable they are answering them in pretty science-y detail, how much choice they give me vs. how much direction. Whether they look us in the eye. Whether they laugh at my jokes. And how I feel after spending time with them in an exam room. I have known my oncologist since 2006, when my breast surgeon said, "You will definitely like him" and was oh so right. He is my age, within a year or so, and has a quick mind and a good sense of humor. Such luck!

We reduced my chemo dose too, because of my increasingly numb/painful left foot. It is weird that I have such serious neuropathy in one foot only--usually chemo-induced neuropathy is more symmetrical. But it is what it is--I just feel lucky that it's only one foot.

Sometimes I wonder where my time goes. Why am I not doing more "work"? And then as I apply the TENS unit to my numb foot, negotiate with the insurance company about covering my pain cream for another month, make a lymphedema clinic appointment, and remember that I had chemo this morning before that trip to shop at the food co-op and the nap, I kinda vaguely see the problem...

Trials (and tribulations)

Sun, 25 Oct 2015 22:08:08 +0000

We always figured a trial (of a PARP inhibitor) would be my next step after Eribulin but with the headache & steroids I am probably not eligible for many trials--usually steroid use indicates uncontrolled brain stuff and researchers don't want those patients in their trials. I am tapering off the steroids but it will be a long process, if it works at all in the end. So that's disappointing, if it turns out to be the case. I am going to try to find out more about trials that are about breast-cancer brain-met treatment itself--I could probably get into those. I have a brain MRI tomorrow (the last one 4 months ago showed nothing concerning, but that is a long time to hope for a weedless garden). Then I have a consultation appointment on November 2 at Dana-Farber with a breast-cancer oncologist who has done a bunch of brain-met research (Nancy Lin).

Day 7 of PE

Sat, 17 Oct 2015 10:07:22 +0000

I am feeling a bit better as of Friday–a bit more energy, a bit less out of breath. I almost felt like I could try to take a short slow walk. But this is going to be a slow recovery. Today I’ll try to start up with Qi Gong again and just take it easy on the deep-breathing parts that will be hard. And yay, my mom is coming today to help out for a few days.

And the next complication is...

Wed, 14 Oct 2015 11:50:47 +0000

I am now the proud owner of a non-emergency pulmonary embolism event. I have lots of small blood clots in my lungs, since Saturday AM when I woke up even more short of breath than usual and kept running out of energy when, say, walking down the hall to the bathroom. Rapid heart rate too, I figured out on Sunday. So Monday AM I called my oncologist’s office and got a CT scan that afternoon and here we are.

The clots most likely came from the area of the original deep vein thrombosis (stationary clot) behind my left collarbone. That March clot should be scarred over and immobile by now but there are other veins around that area working extra hard to drain the blood from my arm, and maybe some of those clotted up (perhaps when my left arm swelled up in England?) and the clots came loose.

Here's my hypothesis:

Sept. 23 in England I noticed my left arm was swollen more than since the original DVT in March. Before then it had not swelled up--my body beefed up a lot of accessory veins to route around the blockage caused by the DVT. I was also on prophylactic blood thinners that whole time until Sept. 10 when I went on a lower dose of blood thinners (about 2/3 as much). I think this was the point where some of the other veins got partially blocked, causing the venous congestion (swelling).
The swelling triggered a followup with the vascular specialists, who discussed my whole case and decided I didn't need to be on blood thinners at all, after all this time. That the swelling was unrelated to the dose reduction (or the airplane travel, or anything anyone can figure out). So we decided--because getting off medications is good when you can--to try no blood thinners for a while, as of September 29. That was really nice--no injections.
The arm stayed the same or got a little bigger.
October 10 I woke up, stood up, and was short of breath. Seems like overnight the clots came loose and lodged in my lungs.
It just *can't* all be unrelated and random. I need to find the storyline.

I should be going to the Midwives Alliance conference in Albuquerque right now, but nobody’s going to let me get on a plane for a while! And honestly I’m not sure how much of the conference I could enjoy with this level of fatigue. I just have to lie low at home, be back on blood thinners to reduce the chance of more clots, and wait for my body to absorb the existing clots and make me better. Apparently this is not a fast process.

(The theme of the conference this year is "SHINE." I had a dream a few months ago that I walked into a hotel lobby and went up to an older Hispanic or Native American woman behind the desk. Someone who looked unexpectedly wise for a hotel registration desk. I don't think I said anything, but she told me this: "Shine. Live your life." That was the whole dream.)

So no Midwives Alliance conference for me, for the first time since 2002, and after that, no Northern New Mexico adventure with my family. More things cancer and its complications take away from me.

The list of things is getting long. Working as a midwife. Time and energy to work on programming. Vigorous exercise like interval training and jogging. Now even walking longer distances for exercise. Sure-footedness. Right now I can't even do Qi Gong because it takes too much deep breathing. Enjoying a bright sunny day. Waking up without a headache. Time--so much time every single day is spent on the requirements of being sick instead of living life.

The limitations of my current life are forcing me to give things up. Maybe sometime I will learn to let go of them with more grace and acceptance instead.

England trip: Beyond London, September 24-27 (part 2)

Wed, 07 Oct 2015 15:36:08 +0000

Thursday morning my mom and I were off to the Essex coast to visit The Othona Community, where last fall’s QIVC Short Term Intentional Residents Adrian and Mark have lived and worked this year. We were hosted by Adrian, who is finishing up his last month or so there. We took the train from London to the depths of Essex—the small town of Southminster, 10 minutes from the smaller town of Bradwell-on-Sea, 10 minutes from the remote peninsula upon which Othona sits, behind a working farm, a few minutes’ walk from the actual coastline. It is tucked into a few groves of trees.

Bits of news; still in limbo

Wed, 07 Oct 2015 09:19:19 +0000

England was lovely! Here's more about the trip if you're interested. I've been back a few weeks now and they have been less energetic than my time in England, for sure. I did a decent amount of walking on the trip (along with a LOT of riding the wonderful Tube) but in the last week or so my left foot has gotten more numb and more hurty and it's hard to walk very far, especially with my left knee also continuing to hurt some about half the time.

To continue with the complaints, my headache is worse in the morning and then most days goes mostly away; some days it sticks around. I recently started taking Cymbalta for general pain (it's an antidepressant but also used to treat, for example, fibromyalgia or chronic back pain) but I'm not sure if it's doing anything yet. I hope it will. May have to increase the dose. I have started going to a pain-management practice. They prescribed a compounded pain cream that has various things in it including neurontin. Not sure if that works or not yet--just picked it up yesterday after lots of insurance hassles over it (mostly handled by Eric).

Voice update: My vocal-cord damage is slowly getting a bit better, which is nice, thanks to vocal-cord therapy and tincture of time. Sometimes my voice sounds almost normal. Sometimes, especially at the end of a talky day, it is all hoarse and breathy and can't get loud. Shortness of breath, which started at the same time as the voice problems, is only a bit better. But I had lung-function tests yesterday which showed reasonably normal lung function in terms of lung volume, etc. So the shortness of breath is not that my lungs aren't working ok. I guess it's more that I'm not quite using them well enough (my diaphragm isn't doing what it should be?). However, even a bit better is noticeable.

I had chemo yesterday and last week--we're continuing with the Eribulin, giving it the benefit of the doubt, until I get my lungs scanned at the beginning of November to see what those "spots" are up to. By then I'll also have had my next brain MRI (October 26) so we'll know if anything is going on in there too.

And that's the end of the health update I guess!

England trip: London, September 21-23 (part 1)

Wed, 07 Oct 2015 09:01:13 +0000

My sister-in-law Spee, my mom, and I went to London for a week in September. (Half my suitcase was cancer accessories and medications.) Spee had a consulting job three and a half days of the week and my mom and I explored London and hung out for the first few days. We stayed in a nice hotel with small rooms a block from King's Cross railroad station. It's a gentrifying neighborhood, around the train station, with lots of construction and pan-Euro restaurants and coffee places.

Lung Spot Limbo

Sat, 19 Sep 2015 19:58:58 +0000

Well. My September 11 chest CT scan showed “multiple” very small nodules in both lungs. Some looked like they could be due to inflammation/infection, and the radiologist noted that the largest one–only 4 millimeters–was most suspicious for metastasis.

So this is a new chapter, I guess. Not one I am eager to read.

I am at risk of lung infection because of being on steroids for so long, so the first step was to rule that out. I went to a pulmonologist Thursday who said it didn’t look like I had an infection, but the nodules were so small he couldn’t reliably test for bacteria or fungus (by doing a “wash” of my lungs). He said he saw 5 or 6 “spots,” but maybe there were smaller ones he didn’t notice. So, let him know if I get sick, and come back in a few weeks for follow-up.

Earlier in the week we had delayed chemo in case I did have an infection, but now chemo is on again–for now–right after I get back from England (where I’m going Sunday to Sunday with my mom and Spee). If this is the cancer spreading, then the Eribulin (chemo drug) is no longer working and we need a new chemo plan. But right now we’re in sort of limbo–we don’t know that the spots are mets–and the original mets (in lung and sternum) are still cooperatively not growing at all (meaning the chemo is working on them). Meanwhile all the other CT scan results were negative and reassuring, as was the bone scan (meaning the chemo is likely working in other parts of my body still).

I’m guessing I’ll have a quick-interval follow-up CT scan in mid-October to see what’s happening, and if a nodule has grown big enough to biopsy laparoscopically, we’ll do that. Or something. Overall, even though we will be in limbo for maybe the next whole month, I’m most likely looking at a switch to a new chemotherapy and a new stage of this living-with-cancer journey. The trail has stuck to the ridge line of no-progression so far, but it seems to be dipping down the slope.

Since Eribulin has been so easy to tolerate (and even quick to administer), I’m scared that a different chemo regimen will decrease my quality of life at a time when I am still dealing with headache, leg pain, back pain, leg weakness, fatigue, blah blah blah. I don’t really feel up for 3 days of feeling icky or nauseated per three-week cycle on top of all that!

There are more updates, and more thoughts and plans for the near future, but I will save them for another post another time.

We’ve explained to the kids what’s going on, and that we won’t know for sure for a while, but that this is not good news. Today with Jess’ agreement I gave them the whole background of the cancer situation I’m in–from 1995 to now, since Jess asked about way back then as well. Before now, Jess has explicitly not wanted to know many details, but that left them making up their own more-scary story with no one to talk to about it. Now Jess should have a better idea of the way things are, I hope, rather than just “my mom is dying of cancer” which doesn’t really represent the complexity or timeline-uncertainty of the situation.

We talked about the different meanings and weights of “dying of cancer,” “has terminal cancer,” “is living with cancer,” “has incurable cancer.” We talked about what situation would fit the description “dying of cancer.” And we talked about how most of the things that are visibly making me no longer healthy and strong are not the cancer and are not going to kill me. It was a really good conversation. Although I did the majority of the talking, Jess asked lots of questions. We talked about how this all made us feel a little bit, too. Not much, but…a start. And there was much cuddling.

And now, to the important stuff: I must go pack!

Cancer scan interv-hell!

Mon, 14 Sep 2015 19:04:25 +0000

I had m periodic CT scans last Friday and a bone scan too, warranted by my back muscle spasms I guess, and we meet with my oncologist tomorrow afternoon to find out the results. The Sunday after that I go to England for 8 days. That’s not very long to make a new plan if the chemo has stopped working.

Meanwhile I had vocal therapy today to work on my partially-paralyzed left vocal cord. I’m getting better, slowly. Tomorrow, an ENT follow-up appointment before the oncologist, and if all goes well, chemo too.

Cancer-Lifestyle Barbie: Who knew this would involve so many accessories?

Sun, 13 Sep 2015 15:08:35 +0000

Trying to deal with various pains and aches these last few months, I have accumulated a wide variety of what I think of, in more humorous moments, as “cancer-lifestyle accessories”–all kinds of things people give you or you acquire because maybe they will soothe an ache or prevent a pain or cushion your knee or keep a headache at bay. Or keep you from coughing at night, or help your numb foot, or cover your head, or…the list goes on and the stuff keeps accumulating. Some of it works out and becomes (temporarily?) critical to day-to-day life. Some things you try and they just aren’t the right thing. Some things I happily don’t need now though I have dozens: hats and scarves.

Some good stuff I depend on right now–accessories that would be sold along with me if I were Cancer-Lifestyle Barbie:

Numerous **pillows** in various shapes and sizes, including an inflatable one for travel and one flattish one to put behind my back in the car to make the car seat less curvy, oh and the one I carry around to cushion my hurting knee when I sit down.
**Sunglasses**. To keep the light out of my eyes because that triggers the headache.
**Sun hat**. Ditto. Below is a picture of Jess in my hat.
**Biofreeze Ge**l! It's active ingredient is menthol and you rub it on what hurts you. In my case, my back mostly, but also my forehead and temples and back of my neck for headache; my shoulders, my knee, and sometimes my new sore spots on my foot. It is freezing and it basically drowns out the pain signals with tingly cold signals for 30 min to an hour. My friend Anne is a master at putting it on my back for a good long freeze! And the most accessorized part is this: I now have it in gel, and a spray (good for applying it to your own back in the middle of the night), and I have a different brand that rolls on (good for taking everywhere because you don't have to wash it off your hands afterwards and with it I can reach most of the parts of my back that hurt). And now I even have some in a big pump bottle...things are getting seriously Biofreeze-dependent around here.
**Gel heel protector** for my new neuropathy sore spots--not sure this is helping a lot but it makes sense to cushion that area. It slips on to my foot and just adds a little squish layer under my sock.
**Cloth sleep mask**--useful for when the sun comes in the window in the morning and gives me a headache before I even wake up. Even more useful for when I have to lie face-up in a bright procedure room for a CT scan or whatever and stare up at fluorescent lights.
**Port protector:** This one is hard to describe. I have a medication port just below my right collarbone, and it sticks out. Passenger-side seatbelts rub against it sometimes. A nurse at the chemo room gave me a neat little invention that a quilter relative of a fellow port-user made: it's a disk of foam with a hole in the middle for the port, and on the top surface a strap that attaches it to the seatbelt. So you put in on the seatbelt and position it over the port and it cushions and protects the port. And it happens to be...purple! This would be a great present for anyone with a new and irritating port, but I can't find the good kind online.
**7-day pill organizers** that *constantly* need to be reloaded!
**Smartphone** w**ith lots of alarms** for medication times: It is constantly telling me it's time to go take something. Very needy and demanding.
**Pedometer** on my smartphone: I set a goal and at least I know whether I reached it or not every day. Some days I can, some days I can't, but it motivates me to see it adding up.

Packing for trips involves a whole 'nother layer of thinking and planning now. Even going out for an hour or two means some careful thinking ahead: I should take some Biofreeze in case I start to hurt, maybe some other painkillers ditto, and will it be a medication time while I'm out? Sunglasses even if it's drizzly, and a pillow if I'm going to be sitting down anywhere for a while... it takes me about three tries to leave the house these days.

Jess in my hat

Doing a bit better

Wed, 26 Aug 2015 15:30:26 +0000

A friend of mine just wrote me: “Having cancer is a full-time job, and one with lousy hours, benefits, and working conditions, isn’t it? And you can’t quit."

Love that.

The last 10 days have been better for the headaches–I’m still wearing sunglasses and closing the windowshades most of the time, but having more edge of headache or threat of headache than actual headache. Still not great, still taking a pretty high dose of steroids, and not trying to taper down yet because I don’t think I can take any more headache than I’ve got right now. So I feel kind of stuck.

Being Mortal by Atul Gawande

Sun, 09 Aug 2015 10:04:45 +0000

A few weeks ago my good friend Birdie sent us Atul Gawande’s latest book, **Being Mortal. **It took us a while to read it but WOW. I think everyone should read it. Especially if you fall into one of these two categories:

You have aging parents and are helping them navigate the years of their lives when their capacities are waning and living independently is getting more difficult (the first half of the book addresses our culture's approach to care of the old)
You or someone you are close to is dealing with a terminal illness and you are interested in learning more about how our medical culture approaches treatment options, information-sharing, and decision-making (especially for people with cancer). (The second half of the book addresses doctors' beliefs that "I don't have anything else to offer" but continued treatment beyond the point that it is effective, and explores what else there *is* to offer if we look beyond the usual boundaries of curative medicine.)

Here's the *New York Times* review, which tells a bit more about the author's journey through these issues. It's a book powered more by stories than by studies--very readable, and full of insights that I found really important.

A hard few weeks

Tue, 04 Aug 2015 19:30:01 +0000

First of all, on paper I’m doing great. Cancer under control still, chemo still working, few chemo side effects. May’s brain zapping showing good results (tumor shrinkage), nothing previously treated growing bigger, nothing new popping up in there in the meantime.

But in my actual life I can’t get rid of the medium-bad headache that comes whenever I try to taper off the post-zapping steroids. Usually I’m off them in 3 weeks and it’s been over 2 months since the last zap. (And I was on a maintenance dose of steroids from the previous mid-April zap until end of May, so it’s been…3 and a half months on steroids). I keep getting down to a very low dose of steroids, then get the persistent photosensitive headaches, then if I don’t increase the steroid dose again I start to throw up and feel REALLY bad after a few days and not only have to wear sunglasses until 9:30 at night but also stay in my bedroom with the shades drawn all day and avoid screens, books with too much light shining on the pages, etc. And I don’t have any appetite.

Not fun. Maybe my latest steroid regime will work better though. Got it planned out yesterday and today was definitely a better day. I even cooked for an hour for dinner! But it seems like when it’s gotten bad, it then takes a long time to get back to an even keel where a dose that should work does work.

I think at this point since there’s no swelling in my brain (the main reason I would have a headache that goes away on steroids) I probably have this:

**glucocorticoid-withdrawal syndrome** has occurred upon withdrawal of corticosteroids but was not related to adrenal insufficiency. Patients experienced anorexia, nausea, vomiting, lethargy, headache, fever, arthralgias, myalgias and postural hypotension. Symptoms resolved when corticosteroid therapy was reinstated. *http://www.drugs.com/sfx/prednisone-side-effects.html*

Happens when people have been on steroids over a certain dose for over 2 months. I have fluctuated around that certain dose. Treatment is the same...treat the symptoms with steroids, then slowly, maybe even more slowly, taper off.

So the last 2 weeks have been a taste, for me and everybody, of me being pretty much an invalid. Too tired and short of breath to walk anywhere, too headachy to go outside until dusk without a good reason, hiding in my room and being pretty miserable the whole day long. Too headachy to tackle any work beyond little tasks and responses and paying the bills. Waking up with a headache already at 6 am. I have found that frankincense essential oil on the temples and back of the neck might help the headache a little (thank you, Marcy!) and also that slathering Biofreeze, my menthol gel that I put on my knee all the time for pain, on my jaw muscles, temples, and forehead, and my neck and shoulders sometimes too, helps the headache recede a little as well.

OK boy enough rough-week update for now! But that should explain why I haven't posted much for a while.

Here is a picture of one of my favorite birds--a barn swallow. They come to play with us and raise their babies from June to late August or early September, then they go away again. It has not been such a great summer for fireflies on the hillside below my bedroom window, but we have had lots of swallows on the Land and around our house, swooping and chasing each other and cornering the sides of our house as they go for insects too small for us to see.

Barn Swallow

"Oliver Sacks: My Periodic Table"

Sun, 26 Jul 2015 12:29:57 +0000

I really enjoyed this column by Oliver Sacks in the NYT.

MRI results!

Wed, 22 Jul 2015 08:35:59 +0000

I got a surprise call from my favorite nurse in Radiation Oncology yesterday (Tuesday), leaving me a message about my Monday MRI. I thought I would have to wait untold weeks and weeks to find out about the results, since I don’t have an appointment with anyone until next week (the neurologist) or the week after (chemo Day 1). Of course I wasn’t going to patiently wait that long, not being a good “patient,” but here was Joanne leaving me a message that went like this: “Dr. Chandra looked at your MRI and it looks good. Everything is either stable or smaller. Give me a call, I want to talk to you in person.”

So that was a really nice message to get yesterday afternoon, for sure. Especially because what with the continuing headache, which is dogging me as I taper off the dexamethasone finally, I was wondering if maybe I had, unexpectedly, a new crop of 12 mets or a re-growth of the original biggest one with lots of associated swelling. But no. Nothing to explain the continuing headache, and unfortunately the headache seems worse now that I’m on the last week of the latest taper–1 mg dexamethasone per day. I think from my experimenting with splitting up the larger doses (like 4 mg per day taken as 2mg in the AM, 1 mg at 1 PM, 1 mg at 7 pm), 1 mg is effective at keeping away the headache but not at making it stop. So taking 1 mg when I wake up in the morning doesn’t seem to do anything.

But the only way to get my own adrenal glands to re-start making enough corticosteroids (? haven’t read up on this again lately) is to not ingest exogenous steroids. Thus the taper. I have been on some level of dexamethasone (Decadron, steroid) since my brain zap in mid-April. It’s time to get off them! But having a headache a lot of the time really sucks. Even if it is not a really bad headache–sometimes more of a nagging one. This morning, more of a real headache.

Anyway, off to call Joanne!

About France...

Fri, 17 Jul 2015 20:50:09 +0000

If your interest in this blog extends to our July 2015 family trip to France, you can read about it and see pictures here.

France trip: Aix-en-Provence, July 1-13, 2015 (part 2)

Fri, 17 Jul 2015 18:35:13 +0000

(Such a great trip it didn’t fit on one blog page)

Tuesday Eric and I took advantage of the rest of the 24-hr rental car to go for a morning drive around Montagne Sainte-Victoire which is a huge nature site about 20 minutes from here. This morning Eric and JF went to climb it. Needless to say I did very little climbing on our jaunt. (I am using the built-in pedometer on my iPhone and am averaging 9,700 steps a day and meeting my 11,000 goal most days…even with my persistent leg weakness & unsteadiness (due to nerve-pain drugs, leg pain, foot numbness from chemo).

So on our jaunt we stopped to admire the mountain, gave some hikers a ride 5 km down the road, stopped at a cafe in the tiny town of Puyloubiers, walked around and bought some bread (of course), went through a few more towns and picnicked at the edge of an olive grove (also parking area) in one. Then went back to Aix and spent a LONG time adventuring around the west edge of town trying to find a gas station to top up the tank and then dropping off the car.

Finally we got home to find that instead of going out adventuring, as invited, all the kids had just stayed home the whole time and it was 3 pm! We invited Will to come meet us and here is what we fed him for breakfast, I guess (bad parent award!):

Eventually Jess and Elliot went out to explore. Apparently they got ice cream and found the French bookstore and each bought a book. They are missing the morning markets of all kinds—produce, cheese, meat, honey, lavender, ceramics, clothes and gifty things, etc. by sleeping in. By noon everything is shut down except stores and cafés and restaurants, and it is HOT!, until 5 or 6 when things start to cool off, non-tourist people come out again, etc.

Wednesday morning after marketing, Jean-François and I sat at a cafe and talked for a long while, then walked around a bit.

Below: fancy private fountain in courtyard with J-F taking picture at left; view from cafe up the street; view of this apt’s table and huge north-facing cool window. Outside is a courtyard…the far half of the courtyard is a terrace of a restaurant (apparently without a permit). It has a nice restauranty rumble in the afternoon, louder in the evening but not too bad, and it’s all closed and hosed down by 11:00 or so.

Wednesday afternoon there was another trip to the same beach; Eric and I stayed home for an evening alone together. We went out to a courtyard cafe of a nearby museum, then to a very nearby restaurant that was great—local, varied food, MEAT!, friendly, and felt authentically French, not touristy.

Here is today’s breakfast (below). I went marketing alone which took some real attention to slowing DOWN. (Market is uphill luckily…walking back loaded down was downhill) Eric and JF are not yet back from their climbing adventure (though they are off the mountain) and I have a bit of work to do!

So that should catch everyone up. I am going to send one of the above photos at full size to some of us because it is wonderful of Elliot and Jess who look deliciously happy to be where they are.

Soon this afternoon I think I am leading a trip to book-related places (English-language bookstore 3 blocks from here, Aix’s mysteriously-named “Cité du Livre” that should be book-centered, and maybe another bookstore?). And Will and I have a plan to go watch a movie (“Spy”) at the nearby movie theater after that. For dinner we will eat the bread I got and the delicious salads etc. that Clara the cook came and made for us this morning, and a big green salad. Then I BET we will go out for ice cream!

Ellen

**Chapter 4 (July 9):**

This afternoon after prying the youth out of bed at noon for breakfast, I gave ‘em a few hours to rest :) and then gave them no choice but to go to the English-language bookstore with me. Which is all of 4 blocks away and has a cafe as well as many rooms to explore. Here is, I think, evidence that they had a good time!

I left them there after 45 min or so and went to meet Will and Eric to see a movie nearby, and they eventually made their way home and were happily chatting and snacking on fruit and bread when we returned just now.

I’ve started waking Elliot up at 8:30 just enough to take her medicine just so I know she takes it and so it gets taken in the morning rather than whenever the getting-up eventually happens. OK?

We have 3 more days here before our travel day so I hope one of those days they make it out into the town before mid-afternoon! (without me just going all Mom on them and ordering them to) But could it be, that buying delicious fruits, veggies, cheese, and bread and sitting in a cafe sipping a hot drink and a glass of water is NOT preferable, to the 13 & 14-year-old, to Just More Sleeping?

I blame Tumblr. :)

**Chapter 5 (the last few days):**

Final report! Now we are actually on the train, the TGV, from Aix to the airport. I’m not sure how/when I’ll be sending this. I meant to send it this morning before we left but…instead we went out to the market real quick and took the kids to one final morning café for “viennoiseries” (pastries, aka croissants) and Orangina (pretty much the only thing to drink at a café in the AM if you don’t drink coffee or want hot chocolate or want to pay through the nose for 3 sips of orange juice.

Here is a picture of the apartment we have been staying in for the last week, thanks to Jean-François’s sweetie Julie who was out of town most of that time. Ours is the one on the 2nd floor with the open white shutters. It is in the quiet part of town below the most touristy, markety part, but very close.

Friday we went to the Camargue, which is a bit like the Everglades: a river delta, various biomes, interesting animals, HOT! We visited the museum briefly and took a scenic drive past wild horses, lots of bulls, and flamingoes.

But our real purpose was to go swimming on a big remote beach. This was a wide, long, sandy beach very different from the beach J-F took us to (rocks, coves, smoot rocky bottom, small rocky beach, no sand, nice water but no waves). Many people apparently come to the beach and camp—lots of campers lined the parking area. There is a little town a few kilometers inland that I suppose supports all their commercial needs, but at the beach there was just one building that I think was a first-aid station and bathroom.

This beach was a big hit but we couldn’t stay as long as we would have liked.

Jess buried Elliot in the sand between swims. Eric & Will went for a run & did exercises before swimming. I sat, watched our stuff, read my novel, and documented. It was nice. Clearly there had been THOUSANDS of people enjoying the beach earlier, but since we didn’t arrive until 6 pm, it was not crowded at all.

Saturday night I took Will out for dinner at a traditional French restaurant. It was good. (Same one Eric and I visited a few days before.) It was also only a few blocks from where we were staying. The clientele was part locals after work, part tourists, part older folks out with friends. Nice.

Yesterday morning (Sunday) Eric and I and Will took off for a quick trip to a little town an hour away, L’Isle sur le Sorgue. It’s called an island (on the Sorgue River) because the river runs right into town and then splits into lots of channels and canals and raceways. The town used to have (in the 1800s) 70 mills powered by this river. Grain, then fabrics and silk. It is fun to see the old waterwheels still turning, all covered with moss.

It is also a HUGE market town on Sunday AMs so about an hour after we got there it turned really really crowded. We had seen enough by then, and had our café and croissant in a shady spot right on the river set back a bit from a street of market-market-market, so we drove home. Jess and Elliot slept in but they were up by the time we got home.

At 5:30 we joined J-F and Julie and Julie’s younger son Timothé (8) on an outing to a place called Vernègues, which is a historic site of a medieval town on a hilltop, plus the site of a village that was destroyed by an earthquake in 1909 and rebuilt down below, plus—and this was the crucial feature—it has a really nice restaurant featuring crepes and ice cream.

So we arrived at 6:30 or so and had ice cream. Then we wandered around the hilltop a lot in various groups until 8:30, when we went back to the restaurant (which was all on a nice shady terrace) for dinner. Life is short; eat dessert first!

L’Isle sur le Sorgue: waterwheel and river below

& Elliot at the creperie in Vernègues

We got home quite late last night, packed up, and this AM got out of the apartment by 9:30 (quite a feat for some of us) and had just a little time (luggage stored at J-F’s down the street) until we got picked up to go to the TGB station. Now we are on a long double train, half of which goes to Brussels somehow…not our half. We are in a regular compartment and it is not 95 degrees so, much nicer. And we have a lot of picnic items so we don’t have to buy any overpriced food from the “club car” at all.

And now I’m sleepy so that’s it from France!

Ellen

France trip: Aix-en-Provence, July 1-13, 2015 (part 1)

Fri, 17 Jul 2015 18:35:03 +0000

Chapter 1 (July 3):

We had a long but uneventful trip yesterday, which went like this, transportation-wise:

car (to Logan airport)
plane (to Paris)
long wait for train
3 & 1/2 hr train to near Aix…in a small compartment that was very, very hot with not enough air circulation.
wait for bus to Aix
30-min bus to Aix
25-min walk through Aix, which is hilly! to apartment
We got here at sometime between 5 and 6 local time and we were BEAT!
It is hot here—80s!

A couple hours after we got here Jess & Elliot had fallen asleep in front of Tumblr :) and so went out for dinner and let them sleep—actually we couldn’t easily wake them to ask if they wanted to come!

The apartment is great. It has a balcony to sit on, which is where we had our breakfast this morning: 10:30 am, teenage time, after Eric and I went out to the market, bought food, and had a coffee & croissant at a cafe.

Breakfast was: cherries, peaches, apricots, melon, bread, butter, croissants, yogurt and jam. That’ll be basically what we do for breakfasts—market, and eat at home. We have surprisingly hired a lovely cook named Clara who cooks for our friend Jean-François’s sweetie Julie…she used to work in restaurants but prefers working for families. She will go to the market, come and cook at midday, and leave us vegetarian food to eat for lunch or dinner. Nice, huh? Also, she charges a very reasonable amount. So for me, when I travel, I try to live in a way that is really different from how we live at home—somehow. In Florida it was on a houseboat! Here it is having someone cook for us one meal a day.

For dinners we will sometimes go out and sometimes eat “Clara food” or picnic on bread, cheese, veggies, etc.

We are near a dozen bakeries, of course, and the market is large and full of beautiful produce plus delicious southern-France things like olive tapenade and my favorite kind of olives and local honey and preserved lemons. We are also near a “bio” (organic) local bakery and a “bio” grocery store where they barely sell cows-milk products because compared to goats and soy they are so uncool.

Jess & Elliot just went out for half an hour or so to explore, and returned happy.

Not sure what we’re up to for the rest of the day, but so far, I am having a good time for sure. I seem to have a bit less shortness of breath (I survived that 25-minute walk through Aix) and got some good sleep last night.

More later!

Ellen

Pictures:

Dozing on the airplane…then waiting for the TGV (train à grand vitesse) in Paris…Yup still waiting

On the HOT train x 3 photos

One view from our balcony. And the market…those vegetables look so spectacular!

Chapter 2 (July 4):

Well, I guess it’s actually yesterday’s? Because it’s now midnight. Whoops.

About 45 minutes ago everyone else went out for ice cream down on the Cours Mirabeau, the fanciest main drag of Aix. I didn’t think midnight ice cream was such a good idea for myself, plus the HILL coming back home, so I stayed here.

This was after we ate dinner at 10:15 or so…pre-made vegetarian stuff out of the fridge plus a salad, lemonade for youth and cidre for adults.

We’re on this late schedule for, as far as I can see, 3 reasons:

1) it’s the south of France in the summer. The heat doesn’t lift until 8 pm.

2) Eric and Will go exercise with our friend Jean-François at 6 or 7 and come back after 9…that pushes everything later.

3) Teenagers! If they sleep in until noon, they end up not getting hungry for dinner until, well, apparently whenever I tell them it is time to finally eat.

Today Eric and I, and Will, had an extended marketing-and-cafe-sitting outing, from about 9 to noon, perusing all the goods at two big market squares. Meanwhile the younger ones slept in. In the afternoon some of us watched a movie. Then we planned an outing to the public pool, on the bus (so as not to walk 25-30 min in the heat), which meant researching the bus system which was fun (for me). I stayed home after seeing everyone onto the bus. (3 hours out and about was pretty much enough for me.)

I went to the nearby organic grocery, Bio c’ Bon, and perused the offerings while looking for the 4 things I needed. Cheaper than Honest Weight! Then I brought stuff back here and rested and read.

Meanwhile at the pool, Elliot and Jess wanted to stay longer than Eric and Will (who were off to meet Jean-François in the park) so they did. They swam and then walked home. They were going to visit the bookstore but they were more interested in getting home a more direct way (that I haven’t been yet). So there is still that to do! Once they got home I fed them water and fruit before they descended in front of their screens again.

We will probably visit the pool again of an afternoon. It is much closer to the place we’re staying for the 2nd half of our time here. Also there is a big library near there too.

Me, I am interested in taking the 2-hour chocolate-making tour offered by what seems to be the world’s most expensive chocolatier—their chocolates are, for example, and this is a midrange example, 96 Euros per kilo. Happily—I think—their tour is 10 Euros and offers some sampling of their specialties at the end.

Below are pictures of this morning’s café stop between the two markets. Boy did I need that rest! It was in a courtyard with a fountain (lots of fountains here, it used to be a Roman thermal springs town). The woman sittin next to Will is Julie, J-F’s sweetie (whose apartment we will be borrowing starting Monday). And then there’s the (usual) view up the street to ?

Off to bed now—

Ellen

Chapter 3 (July 5-9):

Sorry I’ve been remiss! Too many croissants. Lots of beautiful sights since Saturday, too!

Let’s see.

Sunday we went to Les Baux de Provence, a…well it’s like a butte in a valley, upon which people have been living and building for many centuries. The best time (to me) was the 14th-16th or so when robber baron lords-of-all-they-surveyed types controlled the roads in the valleys around and carved rooms and fabulous windy windows out of the soft limestone at the top. See here for more: https://en.wikipedia.org/wiki/Les_Baux-de-Provence

Elliot and Jess particularly liked this adventure (especially because I kept it pretty secret what kind of place we were going to until we got there). They took off exploring on their own as soon as we got there.

First the cliff edge at the top, then the old town from above (you walk up to the historic site through the old town). We got there at 6 PM to miss the crowds, which worked spectacularly. It closes at 8 but once you’re in, you can stay in as long as you want!

We picnicked together on pasta salad, bread, cheese, fruit, etc. before Eric and I walked up EVERY staircase and step in the place to explore all the heights, windows, different ages of architecture, etc. It is a place I remember loving in 1986 and I think it hit the spot this time too!

We walked down at 9 through the old town, all closed up (tourist shops) and quiet, and drove along home (an hour).

Every morning is pretty much the same—Eric and I go to the market around 8:30, usually meet up with Jean-François, usually sit and have a coffee and croissant at a cafe either before or after doing the marketing. The produce here is AMAZING and that’s mostly what we buy. And eat. And eat. It’s peach/apricot/cherry/melon season right now so we are slurping them all up. Every night the kids say they probably want to be woken up and go to the market with us, and every morning they decide no. They are staying up very late and we are trying to figure out how to re-jigger our schedule to slant things in the direction of NOT sleeping in until 2! More on that later maybe. So we come back from the market with bread and croissants and fruit and sometimes cheese, and eventually everyone gets some for either breakfast or lunch.

Yesterday I got Jess & Elliot out of bed at noon with scrambled eggs.

Monday afternoon we all went to the beach near Cassis with Jean-François and his teenage son Esteban. (We rented a car) Again we left around 4 to miss the heat and crowds. Again it worked! After the beach, which was lovely, and the water, which was a great temperature, J-F led us by car to the heights of the famous cliffs/inlets/fjords in that part of the coast—Les Calanques. WOW.

See next page for more!

Back from Aix-en-Provence: best "chemo break" ever! But more on that later.

Tue, 14 Jul 2015 22:37:52 +0000

OK France was really fun. But today I am too tired to do a good post about it with beautiful pictures to make you jealous of my life, etc. We fit the 13-day trip in around my usual chemo schedule so I had chemo the day before we left, and this morning (we arrived home at 12:30 am today). After chemo I had an afternoon appointment with an ENT (ear/nose/throat) doctor to check out my various throat-related symptoms I’ve been experiencing and complaining about since mid-June–the stuff diagnosed preliminarily as GERD due to continued steroid use.

I really liked the guy, despite the fact that he stuck a camera up my nose and down my throat to take a video of my vocal cords, etc. It was fun to see the video and have him explain what he saw. Which was: left vocal cord weakness and related dysfunction of epiglottis, etc. caused by damage to a motor branch of the vagus nerve that controls that stuff. This explains my weird cough, not being able to close my throat completely (like when popping ears on an airplane), my hoarseness, my lack of voice projection/loudness, my more frequent coughing while drinking and coughing when laughing, and my shortness of breath also–even though that seems like a lot.

The treatment: speech & swallow therapy. Can’t get an appointment with the speech therapist guy the ENT works with until August 11 though (bummer). Also, it has all gotten a bit less acute, so maybe it will just continue to get better on its own some more.

The cause: unknown. Maybe chemo…chemo damages nerves. Maybe the brain-zapping…somehow indirectly (I’ve never been zapped very near this nerve). The swelling from brain-zapping?

Off. To. France.

Wed, 01 Jul 2015 17:02:33 +0000

In the Boston airport with Eric, Will, Jess, and Jess’ friend Elliot, waiting for our plane to Paris. Then train to Aix-en-Provence. I have a bit more energy this week, it seems, and chemo yesterday didn’t slow me down. This should be a fun trip. Though I’m sure by the time we get to where we are staying tomorrow afternoon, I will be BEAT!

However, we are staying only ten minutes’ walk from a famous chocolatier. More later!

A brief and good update

Wed, 24 Jun 2015 20:00:06 +0000

Last Friday’s 3-month CT scans (chest, abdomen, pelvis) showed nothing new or worrisome–stable mets, so Eribulin still working! That was really good news especially since I was wondering about the cough and shortness of breath.

Chemo was easy this week. My sister Deb is visiting and being my driver plus major household helper and cooking some, too! Wow.

The weird cough and hoarseness and shortness of breath make various professionals think I have GERD from the steroids (gastroesophogeal reflux disease) even without typical GERD symptoms (acid reflux feeling, indigestion, heartburn). So I switched to a different proton-pump inhibitor to protect me better from the steroids and we’ll see. I also have an appointment with an ENT specialist to look for nerve issues (caused by GERD?) in the area of my throat that is affected–but not until after our trip to France (July 1-13).

Today’s appointment with the neurologist was good–we liked her, she spent lots of time trying to figure out my complicated situation, she listened, and she came up with good small changes to my meds to address my post-SRS headache issue and maybe improve my knee and other pain. Most excellently, she is not convinced that my little episode on May 30 was a seizure. Maybe more like an almost-faint. We will get an EEG in the next month or so which will probably show a non-electrically-disorganized brain…then it looks like I’ll be able to drive again, probably. My next brain MRI is July 21. She thinks the trouble I’ve had recovering after this zap may just be the result of having had so many zaps…it gets harder to bounce back. She does not think I need to be on Keppra (anti-seizure med) “forever” though we’re sticking with it for now.

My old-fashioned paper chart at Radiation Oncology…weighing down my favorite nurse!

So that was the news this week. I do believe I have No Other Medical Appointments until next Tuesday’s chemo, and the day after that, all the Harris-Brauns, plus Jess’ sweetie Elliot, are off to Aix-en-Provence for some summer living in France!

Five pillows

Sat, 20 Jun 2015 18:36:39 +0000

For the last two weeks, because of my knee pain and a weird new cough triggered by my standard sleeping position, I have had to figure out a new way to sleep (or be woken up every 60-90 minutes…not fun). So suddenly I am a person who needs: a pillow to put under my knee when I ride in the car or sit in a seat for a long time, a person who needs a full-sized pillow in the car to lean on when she is tired on drives, plus a person who needs, as far as I can figure, the ridiculous amount of 5 pillows to sleep at night. Maybe 6. (“Slut!” says Eric at hearing six)

One ongoing challenge of living with cancer

Wed, 10 Jun 2015 13:05:28 +0000

I am getting bored with how much I think about/talk about/update people about what’s going on with my annoyingly imperfectly-functioning body. It just begins to sound really dull and repetitive to me…and must eventually to others as well! I am certainly better at talking about, or just more willing to talk about, the physical goings-on than my mental or emotional or psychological goings-on, which are probably of more interest overall to others. But when I’m with other people I really don’t want my cancer life to dominate the conversation–it’s so much less interesting overall than other topics!

But it’s not just about my interactions with other people; I am getting a bit fed up with how much of my own attention my body currently requires. I wake up feeling not so good; or I can’t fall asleep because various things hurt or feel weird; I then start to investigate whether this is just tiredness from not enough sleep, post-chemo ick, post-radiation fatigue still dogging me, or did I do too much with all that going on yesterday and now I’m paying a body price? Or is something new going on that I need to pay attention to, some new symptom or side effect that needs to be reported on, treated, prevented, ameliorated? Whoof! it’s kind of tiresome. It’s another way in which cancer is taking up so much of my life–not a way I anticipated.

Resting up

Sat, 06 Jun 2015 11:44:21 +0000

Argh, so frustrating to need to Rest Up explicitly in a day before tackling a task or event I want to bring even a modicum of energy to–it feels like I am an old laptop with a failing battery that has to be charged up in a pre-planned way. It’s also hard to remember that this level of fatigue is temporary (due to the SRS last week) and I will rise out of it eventually.

This morning after sleeping in, I sat on our porch surrounded by the beautiful, damp bright-green view I am lucky enough to have, of trees, grasses, wildflowers of late spring, darting swallows, sparrows, starlings…people moving around the land with more energy than I have…we drank our tea and I soaked it all in. Ahhh.

SRS mask pictures for anyone who's curious!

Thu, 04 Jun 2015 13:55:22 +0000

I found Not Enough anticipatory-guidance style info online for this stereotactic radiosurgery experience from the patient perspective--so here are some photos that may be useful for someone to run across someday.

Back in the saddle

Tue, 02 Jun 2015 10:50:32 +0000

Sitting here just finishing up the first dose of cycle 23 of chemo, with awesomely normal liver enzymes, decent red-blood-cell count & white-blood-cell count, everything else all good. Now we’ll stop by the food coop and go home and I will rest some, because last week’s three afternoons of zapping gave me a lot to recover from.

There is a small possible-mini-seizure story to be told from the weekend, which of course means more appointments for me, and no driving until we figure it out, and continued gooney drugs (anti-seizure prophylaxis) way longer than planned, which is unfortunate because I don’t like feeling drunk and a bit unstable on my feet. And also I can’t drive if I’m going to be at risk for seizures. But it might have just been dehydration, or–my hypothesis–a 90-second seizure secondary to brain disturbance from the SRS plus dehydration/heat/electrolyte imbalance, not to be repeated because it was due to treatment & post-treatment effects, which are temporary! Meanwhile I have other things to follow up on this month–the DVT, the knee pain, my usual 3-month CT scan–which felt a bit overwhelming even before the need for a neurological consult…

In other news, I got approved for disability payments from Social Security in what seems like record time (possibly related to all the records I sent them as instructed…) so at least now my feeling of having too much medical “work” to do is matched by the government’s agreement that I can’t do regular work! I am disabled by my appointments more than by my disease at this point. Who knew?

And now “spa time” in the infusion room is over and it’s off to the coop. Soon I’ll post some pictures from last week’s SRS adventure.

Zaps 1 2 3

Wed, 27 May 2015 09:09:58 +0000

This afternoon is the first of my brain zaps for very small tumors. The radiation oncologist wants to do them one at a time over three days, so we will be at Albany Med Tuesday through Friday, every afternoon. Argh! It’s like a job…but with mind-altering drugs (Ativan, Keppra).

I want one of these!

Wed, 27 May 2015 09:01:53 +0000

An implantable microdevice to perform high-throughput in vivo drug sensitivity testing in tumors

Chemo today in record time!

Tue, 19 May 2015 11:31:30 +0000

All went well at chemo today–liver enzymes blazingly normal. For random reasons, I was in and out of there in record time–70 minutes from the front desk to out the front door again. Cycle 22 completed! Now I feel a usual amount of icky but will feel better tomorrow.

Back on track / curb cuts

Wed, 13 May 2015 20:21:06 +0000

My liver enzymes went back to normal yesterday so I got chemo–we’re calling it day 1 of cycle 22 with a skipped dose on day 8 of cycle 21. Last week was my unplanned week off of chemo–last Tuesday my enzymes were still too high for the oncologist to be comfortable, so no chemo, and instead, a visit to the liver specialist upstairs at Albany Med later in the week.

That was a reassuring consult, because my enzyme elevations were called “mild” in the liver-disease context, and the blood testing has ruled out any disease causing the elevations (hepatitis, etc.). The fellow working with the specialist told me liver metastases don’t raise the enzyme counts (confirming something I had already heard from someone else but wasn’t sure about). And the specialist ended up talking to my oncologist and reassuring him that I could still get chemo with mild enzyme elevations if the chemo was of benefit–it was unlikely to damage my liver. So! All that is good. Even though we still don’t know what caused the late-April ALT/AST elevations–if not Sudafed plus everything else. They even tested my Epstein-Barr Virus titer and it didn’t show anything active. The liver specialist thinks it could have been the chemo drug itself, since that happened to 18% of takers in one trial, but on the other hand, I’m on month 16 of the same drug and it hasn’t had that effect on me. So. Water under the bridge–I hope so. And if that same water cycles by again, we can desist from freaking about about it so much. Thank you, liver specialist!

I suggested my oncologist take a deep breath and let the liver thing go now, but he said “I don’t take deep breaths. I’m just going to worry about next week’s enzyme levels.” Well, I’m not (much).

Meanwhile I have sent in my paperwork for disability (and eventual Medicare if I want). That was a lot of work. Since the DVT I have felt honestly more disabled by my situation, though it’s often disability-via-too-many-appointments rather than disability-via-physical-inability. Though I’ve got some of that too. I am trying to return to two walks a day, but they are shorter and leave me tired. I’m also trying to stick to doing my 30-minute PT routine once a day, and ideally do some qi gong once a day as well. That’s a lot! (I do it with the help of my neighbors here at QIVC, who join in with me and encourage me and provide interesting conversation.) And that routine is not something I’m holding myself to on days like today, post-chemo, post-bone-medicine-that-causes-flu-like-symptoms, and post-IV-vitamin-C treatment (feels like ick also). I took the 2 shorter walks but I don’t think PT or qi gong is going to happen: I am tucked in bed with my head feeling like bleh.

Despite feeling icky today I was lucky enough to enjoy a delicious lunch at my friend Gina’s house…so lucky to have a friend who loves to cook and share! I cannot describe how good that quiche or related eggy thing tasted…ahhhh.

So, curb cuts. Here is how I’m living a slightly different version of life now. When crossing the street in Chatham or Albany, I go for the curb cuts. It now apparently matters, to an unconscious part of me that directs my feet, whether I have to pick up my leading foot that extra 4" or so, or whether there is a nice slope for that interim step between street and sidewalk. Conserve energy! I guess that’s what I am doing. I just noticed this a week or so ago.

Next week ideally will be chemo again on Tuesday, then various brain-zap set-up appointments Wednesday and Thursday. Same for Tuesday the next week, then zapping on Wednesday the 27th. So that’s the plan! More later on the metastasis spreadsheet, which I actually pulled off, and shared with my oncologist and radiation oncologist. Next: conquer the world with it (the world of radiology at least).

Twitterizing

Sat, 02 May 2015 10:40:51 +0000

Blog posts will now be announced on Twitter for the convenience of those of you who use it. I’m @eharrisbraun and I have only ever posted exactly ONE Tweet.

About the blog

Fri, 01 May 2015 20:11:08 +0000

The new look of the blog was forced upon me today by Eric upgrading our WordPress–the 2006 blog theme was no longer available. Hope you like the new fancier stylings.

Liver enzymes GRRRRRRR

Fri, 01 May 2015 19:45:59 +0000

OK, just to catch up, before I retreat into watching a dumb movie:

The week after the zap I felt pretty good, all in all, despite having four sore bumps on my head. Eric left for Ecuador to see his parents and my mom arrived shortly thereafter (she picked up our car at the airport). We, meaning I, had lots of appointments of various sorts pretty much all week (Jess had a few in there too just to make things interesting). So she drove me around a lot. I got very tired and a bit headachy on Tuesday and stayed that way until Saturday, when I realized I had gotten a cold. Sinus headaches. All week I conserved my energy and did my PT (30 minutes twice a day, or once if I went for a longer walk), walked, and sat on the sofa. It was rainy and cold so we had fires in the masonry heater. On Saturday we sprang into stop-motion action and accomplished a lot of household to-dos, separately and together, that were very gratifying. On Sunday my mom left and on Monday Eric came home. I’ve had a bit more energy since then.

Tuesday we went for chemo but my liver enzymes were elevated–not just a bit above normal but too high for chemo. Was it the 3 Sudafed tablets I took over the weekend? On top of everything else I am taking? Who knows. No one knows yet, but the plan was to come back Friday to try again. So this morning off we went, but my liver enzymes were even higher: over 3 times normal. That’s actually getting clinically relevant: my liver is showing some stress. So now I try again on Tuesday. I’m not sure whether that will be the second dose of cycle 21, or the first dose of cycle 22 after a truncated cycle 21.

Of course either way my chemo schedule is now awry, which means my May zap might need to be rescheduled by a week, but that would be 7 weeks of tiny-tumor growth, when the radiation oncologist was happy with either 4 or 6. Hmmm. I guess we could move it forward to 5 weeks.

And meanwhile we’re trying to plan a trip to France in late June that ideally will play nicely with my chemo schedule, which is…um…apparently never to be trusted. And Southwest, the airline of sick people (changeable tickets!), does not fly to France. :( Of course in the end 10 days or so in France is worth skipping a week of chemo, mais oui bien sûr, but I’d rather not be gone for what would be two treatment weeks instead of one week being an off week. Chemo geek…yes.

I find this all very frustrating and a big bummer. Of course, behind all that is the worry that the liver enzymes are the first sign of liver metastasis. So far the cancer has hit 3 of the 4 most popular triple-negative breast cancer metastasis sites (lung, brain, bone) and guess what the other one is?

Meanwhile, in cancer-care technology, Eric got the radiology department to send him, overnight, on CDs, every CT scan I’ve ever had, apparently, because we want to try to 3-D print the mysterious lung met to see if a physical representation of it will help dispel the confusion around whether it’s a breast-cancer metastasis or a primary lung cancer (insert standard snorts of laughter at the implausibility of this here). And why not? Open-source software out there will help Eric (and Will, whose 3-D printer it is) convert the DICOM files from Albany Med into some other format and somehow help them figure out what to print and what not to print. I look forward to seeing how this process unfolds.

Looking at the chart

And also in technology, we pointed out to my oncologist a few weeks ago that there is now so much history of metastases in my brain that the radiologists who read the MRIs and write the reports can’t keep it all straight. They are going from the previous written report, and the narrative format means they miss things. For example instead of following up on a previously-seen “spot,” they forget to check for it at all. Or they call a spot “consistent with previously treated lesion” when it’s a new one, not a previously treated one. So we said there should be a chart or a spreadsheet. And he said, “You’re right, I’ll make one.” And when he was on vacation, he did! A sort of a chronological list with dates and locations and sizes without all the narrative hiding the facts.

So I took that and we are making an even more useful spreadsheet, so each met can be followed from discovery to ZAP and beyond (as it shrinks away). So much fun, this cancer thing!

My smoothie recipe!

Thu, 16 Apr 2015 12:50:28 +0000

**Smoothie Recipe **(people keep tasting and asking)

kale (3-4 big leaves or equivalent…I like lacinato/dinosaur best)

spinach (handful)

handful frozen mango chunks

4-6 frozen pineapple chunks

1/2 banana

juice of 1/2 lime or 1 whole small lime

2 oz or so of kefir, or plain yogurt

3-4 oz of orange juice, or an orange

tsp of flax seed oil

tsp of chlorella if I have it around

sometimes I grate ginger in there too

Zap all done...at least this one

Thu, 16 Apr 2015 11:02:37 +0000

Tuesday was all day at Albany Med, but most of it was easy. We got there super early–6:35am. Getting the frame “installed” was weird but dealable, and having it on my head all day was annoying and weird and eventually made me a bit headachy, but was not too bad.

We had brought five movies but didn’t watch a one of them, as it turned out. It was very comfortable waiting in the “living room” at Radiation Oncology and we were taken really good care of (except I didn’t need that because Eric was taking really good care of me). After the frame was put on and I had a quick CT scan, it was back to the living room to wait from about 7:30 until 2. The time went by pretty fast, actually. I had to figure out how to eat around the frame (with my fingers). We did some work and took some pictures.

Our friend Dorian came to visit and brought art supplies for a little project I got into my head to do. Also, delicious gourmet doughnuts!

Lounging with the frame

The doctors and the physicist did all the mapping and planning with Monday’s MRI and the morning’s CT scan, and they were ready for the procedure at 2, as planned. The actual procedure turned out to be 90 min instead of 60 due to them having to set, check, adjust, recheck, adjust, recheck, adjust, and recheck the beam placements before being ready to zap me. Each of those cycles included physical adjustment of my head cage and/or the targeting lasers and then a couple x-rays. Meanwhile this whole time I am lying on a table with my head clamped into the frame and the frame bolted into the table. Which put my neck at a weird angle. We used folded towels to raise my shoulders so it wasn’t too uncomfortable. This time I listened to Journey’s greatest hits (that’s what was already in the CD player and really, it was kind of fun) and then an REM album.

Eric has fun drawing on a picture of me with his phone

When they finally had all the settings adjusted, the 16 zaps themselves took a long time. Ativan helped. But by the end, the novocaine had certainly ALL worn off and my head hurthurthurt from the pin/clamps. As soon as the zaps were done they came in, unbolted me from the table, got me up, and off into an exam room where they swiftly removed the pins & frame. Then they bacitracin-ed my four little wounds and put steri-strips on the forehead ones and delivered me back to Eric in the living room. Dr. Chandra came in to say hi–he looked about as tired as me–and didn’t really get the joke of my card at first. But he did eventually crack a smile.

So we talked about my next set of zaps, with the much-easier mask routine (4 or 6 weeks from now–three tiny tumors that have popped up and grown a tiny bit). Then I went home to eat a lovely dinner brought over by our neighbor and fabulous cook Marcy, watch a movie with Jess, and fall asleep.

(My tips for picking a hospital when you have metastatic cancer or some other long-term disease: besides good doctors and caring staff, find one with a good cafeteria–ours has good fresh sushi at decent prices!–and free parking.)

I’m actually up to 8 but Chandra didn’t have a hole punch.

Calming down, looking up

Sat, 11 Apr 2015 16:41:10 +0000

It’s Saturday afternoon and all is quiet around here. Which is good, because the three H-Bs in residence are beat! All day yesterday and until 2 today we were spending time at Simon’s Rock learning about their new Bard Academy program for 9th and 10th graders, in which Jess is now (as of this afternoon) officially enrolled for the fall. Jess will be a day student for 9th grade, though most of the students enrolled so far are boarding. 20% will be day students. It was all exciting stuff but it was tiring to be outgoing, social, and attentive for so long at a time. We’re excited to know what Jess is doing in the fall and to feel more sure that this will be a good program for them.

I felt a bit undercover in that context–with my thin but “passing” hair, my shirt covering my port and my compression sleeve (to prevent lymphedema in my still-somewhat-swollen left arm), my many scary medical appointments and procedures lurking in my recent past and even more immediate future, my low energy and physical fatigue bolstered and covered for by Eric…meeting all these new people and having all these parts of who I currently am be hidden away while trading basic information with other parents, with Simon’s Rock (early college) students, with faculty and staff. All while thinking about whether this was the place, the context, the culture, the institution, the people where Jess would get what they need if and when I get sicker and sicker.

So. Now we’re home. The last week has been one of slow improvement. The Neurontin seems to be working pretty well on my leg pain and I’m down to 3 morphine pills over the last week. I’m doing my PT exercises twice a day (30 min at a stretch), struggling to find energy for a walk as well, doing qi gong sometimes too. My brain is back somewhat in shape because: no morphine.

The weird thing about the Neurontin is sometimes I feel messages from my knee that feel very–the only way I can describe it is “wide,” like of large amplitude, but they are kind of empty rather than being full of pain like before. Very strange. Also my legs feel very noodle-y and weak, like I just hiked 20 miles or had a big scare.

So, Tuesday is my brain zap which means Monday I have yet another brain MRI. Tuesday I’ll be there from 6:30am until probably 3 or 4 pm, spending most of that time waiting around in Radiation Oncology’s very cozy “living room” with Eric or whoever else comes to keep me company. They better not be easily weirded out, because by 7 am I’ll have a metal “frame” attached to my head to allow for very precise zap-targeting, and it stays on all day between the early morning when they put it on and do a CT scan of my head in it and the afternoon when they do the zapping. In between they merge Monday’s MRI with the CT scan and do the planning, which means designing the radiation beams to go in various parts of my skull and cross over in the tumor. They are powered to only do damage where there is more than one at a time–where they cross. The location of the tumor is tricky so the frame is needed to make sure I stay the most still possible. When using the mask, as in my previous two zap adventures, they build in 1 or 2 mm of marginal zap zone to make up for the bit of movement possible in the mask. This time that’s not a good idea. So I’ll have the frame attached to my head. I will spare you the pictures because it looks kind of scary, though the neurosurgeon assures me that people are way more freaked out about it ahead of time than after they’ve had it on for 10 minutes. Basically it’s a metal structure that will kind of orbit my head and face, held to my head by pins that are tightened down to my skull in two pairs (front & back), kind of like little clamps.

Sounds fun, huh? I think I’ll just rest up between now and that next adventure.

New alphabetic possibilities

Mon, 06 Apr 2015 08:46:29 +0000

New alphabetic possibilities

So with my current life I can almost pull this progression off: P PT PTT APPT SAPPT (pee, physical therapy, prothrombin time–a test of clotting ability that I actually don’t have to do–yet another medical appointment, and that would be enough for me and my energy would be sapped!)

Me vs. morphine

Thu, 02 Apr 2015 19:54:20 +0000

The narrative burden I’ve given myself with this blog can feel kind of hard to carry along sometimes, and the last two weeks have been like that. I have been busy with appointments and imaging procedures, and very tired, and not all here brain-wise to boot. Here is a quick catch-up summary for those following from home:

I left the oncologist’s office with a prescription for oxycodone–possibly overkill, but I can’t take NSAIDs or Tylenol, and that eliminates a lot of pain meds. Unfortunately the oxycodone didn’t work at all–except to make me woozy–so after 4 or 5 days of that he switched me to a very low dose of morphine. Which makes me way more woozy–so much so that I mostly can’t concentrate for long and keep dropping off to sleep when reading and just feel very fuzzy. But it does seem to work on the pain somewhat, so I am very happy to be climbing out of that depressing trough of intermittently immobilizing pain. When my leg and my shoulder hurt at the same time, I feel like a butterfly pinned down to a box.
The vascular surgeon was not particularly informative, hadn’t looked at my chart, and didn’t seem to want another patient, really, but grudgingly agreed I could come back in 3 months for a look at the clot to see if it has done a good job resolving. Blood thinners for most likely at least 6 months, though. I now know the correct way & location to inject the Lovenox twice a day–don’t trust the ER to give you good instructions–but I still get a bruise about every third time. Looks pretty pitiful as well as not feeling real good around the “love handles.”
All the imaging studies I had on my leg came back negative for more cancer as a cause of the leg pain, which is great. (X-ray, ultrasound, bone scan, CT scan.) This week I finally got to go see an oncological orthopedist who thinks it is some kind of sciatica-related problem (the leg) and has no idea about the shoulder. He prescribed me Neurontin for the nerve pain in both limbs, and PT to help the leg. He (unlike my oncologist) was not eager to do an MRI of my pelvis & hip–he said breast cancer metastases don’t tend to hide on bone scans and CT scans like mets from other types of cancer do, so he trusts that the imaging I’ve already had is good enough to go on. For now.
My liver enzymes went way down, almost to normal, by the time they were tested again on the 26th, and then were normal by the 31st, when I showed up for the first day of my 20th cycle of chemo. So: Tylenol was most likely the problem. And now I’m back on chemo, which makes me relieved. Maybe if/when I get to 25 cycles on the same drug I’ll get some kind of medal?
I hope I respond well to the Neurontin and can taper off the morphine. After just a few days, it seems like that might be working, so cross your fingers that I will be one of the strong responders to Neurontin. Right now the brain fog is the thing I’m having the hardest time with. It is not an unpleasant feeling, but it means I haven’t figured out how to work on any real brain-centered project, and I have quite a few hanging around waiting to be finished (or started). I am very low on physical energy and feel sleepy a lot. (Kind of like last March.) Neurontin can also cause fogginess but apparently not as much as morphine, which really does a number on me apparently. Yesterday I took only one morphine pill, at 7 am, and didn’t need another (yay!), and finally felt like the fog was lifted by 10 pm. At which point I had to go to bed. Oh well. I feel like I’m mentally down below the surface of some weird water and struggling to get back to the air. That sounds too desperate, but take away the desperation and that’s the feeling.
My first PT appointment is tomorrow and I’m also seeing the functional chiropractor I’ve seen twice already, who gave me core- and leg-strengthening exercises meant to fix what’s wrong. I will have to figure out how to blend what he wants me to do and what the PT folks want me to do. PT 2-3 times per week. Luckily it’s only 20 minutes away. It’s in a town we don’t go to much, in the same plaza as Ocean State Job Lot, where I never have been, so maybe we’ll acquire a lot of junky stuff at really cheap prices.
My 6-week follow-up brain MRI last Thursday was the last of the imaging studies that filled up my two weeks instead of chemo. This morning was my appointment to find out about it and make a plan. One of the two “dots” we were following closely (6 weeks between scans) stayed the same, just a dot (apparently this is now approved radiology-report terminology…maybe I missed a footnote defining the minimum and maximum diameter of “dots” somewhere). The other dot grew and is now a 6-millimeter tumor that we need to zap. It is in the pons, which is part of the brainstem, which is hard to target and houses many important basic-level control centers (like for breathing). It’s in the middle of the pons (which might be better than, say, on the posterior surface where I think that respiratory center is). So next week I’ll have the appointments to set that all up (another MRI, etc.) and week after next, probably on the 14th, I’ll get zapped for the third time. Woo hoo. The radiation oncologist has really relaxed since we first met him but he still doesn’t crack a smile at my jokes.

I think that’s it for now–that’s a lot for two weeks. I’m hoping for a calmer next two weeks, despite zapping my brain, and an even calmer rest of April for recuperation and catching up on work.

OK, when was anything I ever wrote actually “quick”?

The Florida Keys: Nice place for a blood clot, but I wouldn't want to live there

Wed, 18 Mar 2015 15:23:57 +0000

So, a quick report on our vacation in the Florida Keys last week. We stayed at three Airbnb places. First, three days on a small houseboat anchored in a shallow bay near Key West, a 20-minute kayak paddle from shore. Very small, no privacy, lots of climbing and clambering to use all levels inside and outside. Very fun!

Then after an afternoon at a beach park in Key West, we moved halfway up the Keys to Marathon, staying at a house in a working-class neighborhood near a fishing dock. That night, Wednesday, I noticed when getting ready for bed that my left arm was quite swollen. It didn’t hurt and I hadn’t noticed any swelling earlier, but maybe there was the beginnings of it earlier in the day. In any case it didn’t seem like a good development at all, so Eric and I went right off to the emergency room, which was only about a mile away: Fishermen’s Hospital. On the way in to the ER was a big display case of fishhooks that they had removed from patients. Will & Jess stayed “home.” Good thing they are teens now.

At the ER it took forever but eventually I got assessed & got an ultrasound to look for obstructions in my veins. There was something there but it is in a vein under the clavicle so it was not possible to tell for sure what was wrong with ultrasound. The suspicion was a DVT (deep vein thrombosis, aka blood clot), which is dangerous primarily because if the clot breaks loose it can lodge in the vessels of the lungs and interfere with oxygenation (this is a pulmonary embolism). So I had to go to a bigger hospital where I could have a “venogram,” which as far as I can tell is an angiogram for veins rather than heart vessels.

By the time this was all decided, it was about 5 AM and Eric and I had been up since 7:30 AM. It was more than two hours to the transfer hospital at the south end of Miami, and longer with traffic. So even though the ER would have let us drive ourselves, the ER doctor also said an ambulance could be justified given the urgency and the situation. So we chose that; I went in the ambulance at 6:30 and Eric went home to the house to sleep and be with the kids until we knew what was next.

I dozed in the ambulance and it took almost three hours to get there. At Kendall Regional Medical Center the ER doc pretty quickly set me up to have the venogram as soon as the vascular surgeon & interventive-radiology suite were ready to squeeze me in. That finally happened around noon, and so by 1:30 I was in the recovery area for an hour’s (somewhat neglected) recovery, while everyone who you’d think might be taking a bit of care of me was instead trying to figure out whether I was going to be admitted or discharged or sent back to the ER or what. Apparently they never send people back to the ER from recovery. But in this case that was what the ER had planned so that was what happened. Until then I thought I’d be admitted for a night of de-clotting and observation.

So, back to the ER. When the ER doc came along around 3:00 he said I was getting discharged after getting started with a blood thinner (Lovenox, which is low-molecular weight heparin aka LMWH). He went off to call my oncologist to confirm that it was ok with chemo and give him the scoop. I called Eric and said “come get me.” My main concerns were: 1) can I eat now, finally? and 2) can I put on my own clothes instead of this ridiculously large gown? Somehow I didn’t get to ask these questions because there were so many other things to find out, decide, and do whenever there was a health-care provider in my room. Eventually my nice nurse José came with the drugs. He gave me one half-dose of Lovenox to show me how to do it, then I did the other half dose. It is a liquid that is injected subcutaneously (twice a day, in the belly fat). Oh joy. Luckily I have learned how to give injections before…just not on myself.

By then I head read my discharge paperwork and noted that I was officially discharged at 3:30 pm. Since it was now 4:30 or so, I figured that yes, I could eat. So I ate two oranges. Then José brought me some iced tea and an ice-cream bar. I lounged around Skyping with my mom for a while, then decided the food was ok but the service wasn’t so great and went out to the ER waiting room to wait for Eric.

At 6 Eric and I found each other and went to the pharmacy and then got some food and then drove back to Marathon (about two hours). Whew.

The next day, Friday, we spent most of the afternoon at Bahia Honda State Park near Marathon, which was pretty nice. Good beach. Portuguese Man o’ War jellyfish washing up onto the beach, which is dangerous because their tentacles sting very painfully, but they float and bob around on the waves, and are purple and blue with a big inflated part, so they were easy to spot even when only a few inches long. Eric and I ended up reading on an uncrowded part of the beach and swimming a bit while the kids sat in the car in the parking lot on their devices. Ah! Vacation!

From there we drove north again, off the Keys, to Homestead (SW of Miami), where we stayed in an agricultural neighborhood at a guest apartment attached to a house in the middle of an avocado grove. Tranquil. In the morning we eventually packed up and took off for a driving tour of one part of the Everglades, which we entered only 20 minutes from where we stayed the night. We drove and stopped and went on nature walks on boardwalks and saw some cool stuff. Finally picnicked and drove out and away to Fort Lauderdale to the airport, and eventually flew home.

I am feeling rather tired and beat-up. I’m pretty sure I’ll be on this blood thinner for many months if not longer, but other than that, am not sure what else is going to change as a result of the DVT. My left leg has been really bothering me for weeks (months?) in a sciatica-like way that is not apparently sciatica, and that was pretty bad on vacation. There are good days and bad days but overall it is getting worse. I have been trying to get it better with acupuncture, massage, chiropractic, etc.. Now I can’t take ibuprofen to help with the pain because of the blood thinner. And my left armpit and shoulder have been mysteriously hurting me since Thanksgiving when I walk, so I hope that turns out to be clot-related and will eventually get better.

The Tylenol I took for a few days stressed my liver (as Tylenol does…) so when I went in for chemo yesterday, my liver enzymes were high and my oncologist said to come back Friday to see if they have gone down enough for chemo. I hate disrupting the chemo schedule. When I do, everything goes wonky in the rest of my life’s schedule! Plus it makes me very nervous to skip weeks of chemo.

Instead of chemo we had a long discussion of the DVT, the shoulder pain, the leg pain, and pain relief options. I went off for a leg ultrasound (to rule out more DVTs) and a femur X-ray (to rule out lesions in the bone) and I will get a full-body bone scan as well because, well, it’s been 16 months since my last one. And Friday I have an appointment with a vascular surgeon to talk about the DVT and follow-up, precautions, etc etc. Yeesh!

Various detours into uncertainty and apparent absurdity

Sun, 22 Feb 2015 20:41:22 +0000

This update goes on an on but trust me, I am leaving out some non-essential but confusion-increasing twists and turns.

I had my 3-month CT scan February 10th. At an appointment to discuss the results two days later, my oncologist said that the radiologist’s report said the metastasis in my lung had grown a bit (one dimension had been holding steady at 1.4 cm and is now 1.9 cm), which meant it was becoming resistant to the chemotherapy. We discussed options. I had a “we knew this day would come” sinking feeling. Is it all going to be harder and more confusing from here onward? Besides waiting for a more clear signal of growth, or switching chemotherapy, the other option was to use stereotactic radiosurgery on the lung met. If the rest of me was still responding well to the Eribulin, but this lung met had developed resistance, we could kill it off and I could go on my merry way with Eribulin for longer. That seemed like a bearable plan.

But he called me later in the day to say the latest version of the CT report–not the preliminary report he had had in the morning–actually said the lung met was stable. Whaa? Later he reviewed the images himself with a radiologist and told me “you could go either way” because something is measuring bigger, but is it tumor or is it associated collapsed lung tissue? No one can quite tell. So that was nice news. But we stuck with our plan to have me talk to the radiation oncologist (the brain-zapper) because if the lung met had grown, we could zap it. The idea of getting that lung met off the list definitely had some appeal.

Then on Friday the 13th (oh yay) I had a follow-up brain MRI to check results of the January zapping. (“What? I am having a brain MRI to check for brain tumors and you want me to have it on Friday the THIRTEENTH?”) But I did.

On the 18th we met with the radiation oncologist. The MRI showed good response to the zapping of two mets (yay) but one tiny little worrisome dot in the brainstem is still there. We wanted it to disappear, which it didn’t. But at least it’s not any bigger. Good news, bad news, good news. Next, more bad news: he spotted another little tiny stable dot somewhere else. “This is most likely a tumor also,” he said nonchalantly. Great. Hey buddy, this is your something-thousandth brain met so it’s all in a day’s work to you, but to me, hey, this is only my…counts on fingers…8th or 9th! So show some respect. (Dot #2 was on the November MRI but wasn’t noted then, and it wasn’t on earlier MRIs. So yeah, most likely a tumor, but again–good news–not any bigger for 3 months).

But the real kicker was when he reviewed the CT scan with us. I like this guy because he calls up all the images on the computer and lets us look, and fiddles with them and compares them, and we get to see how he does it. It’s kind of mind-blowing to realize that though they use high-tech machinery and chemicals and stuff and measure things by clicking with the mouse, in the end, they are just LOOKING AT PICTURES and deciding whether deadly growths have grown or not.

So anyway, he calls up the February CT scan and the November CT scan and we compare them. He does some measuring and doesn’t come to any conclusions that way, but we all agree that the met looks “fuller” or “more plump” or “filling in” compared to how it looked in November, despite maybe measuring almost the same in its extent. This met is like a little raisin with a couple of tentacles, and the tentacles are the collapsed lung tissue (or atelectasis). So the open question is: is the fullness caused by tumor cells growing out from the main tumor along the tentacles, or is it just more collapsed lung developing at the margin of the tumor? The zapper is not sure, but thinks it is probably tumor growth. Which means we should zap it, because that means the Eribulin is not working on that tumor anymore. If we zap it successfully, then I can stay on Eribulin because it is working everywhere else it is expected to work (meaning, not in the brain but in the body).

But that’s not the kicker. Because next he says, contemplating the scans on the computer, “If I were betting, though, I would bet that this is a primary lung cancer, not a breast-cancer met. It looks like one. Breast-cancer mets in the lungs are not made of lung tissue–they’re a foreign type of tissue, so they grow in a ball and push the lung tissue outward. Not in a blob with tentacles like this.” (Well maybe he didn’t say “blob with tentacles” but that’s what he meant.) “Have you ever smoked?”

WHAT????? So I tell him a) I have never smoked a single cigarette, and b) what are the chances that I would be discovered to have stage IV breast cancer and primary lung cancer at the same time? Come on, now. He agrees that it seems unlikely given the circumstances, but still….it sure does look like a stage I lung cancer to him.

“Stage one!” I say. “That’s the first good thing you’ve said all day.”

We determine that yes, I had the sternum met biopsied and that one was definitely breast cancer. And no, I didn’t have the lung met biopsied. So do I want to biopsy it now? Because if it’s lung cancer the standard of care is to do surgery, remove the upper lobe of the lung where the tumor is located, and take out the lymph nodes nearby. “What about this situation is standard?” I ask incredulously. He takes my point. He says that though lung surgeons would certainly want to operate, surgery might rev up the metastasis in my body and that would be bad. So he would suggest zapping it instead, the way they do when someone with lung cancer is too frail to withstand surgery. The “control rate” is not proven to be quite as good as surgery, but the side effects are less frequent and less severe.

The zapping is a bit more complicated than the brain zapping–five treatments over two and a half weeks, and they have to restrict my breathing some so the lung doesn’t move during treatment, and there is a risk of rib damage from the edge of the radiation field. But basically, a low risk of side effects, and I still have a whole right lung (which I dunno, I feel I need to keep if possible). Besides, if he only gets to zap frail people, I probably am less at risk of side effects than them, right? Being not frail.

“So,” I sum up after a while, “whichever it is, we would zap it. So therefore why would I biopsy it? A biopsy doesn’t give me information that changes how I would proceed.”

Though he sheepishly says, “Just to know?” he agrees that there is not a strong case for biopsy. He says he’ll review the CT scans with a chest radiologist and argue with the lung surgeons over me. “They’ll be mad at me,” he says. I say this situation would make a great Grand Rounds presentation about uncertainty and patient choice so he must invite me when he presents it.

Whew. What a roller-coaster. We leave and I begin trying to figure out how lung-zapping is going to fit into my chemo schedule and my non-cancer-related life in the next month or so.

Then the next day my oncologist calls, having gotten the latest update from the radiation oncologist. The consulting chest radiologist (whom the oncologist thinks highly of) also says it looks like a primary lung cancer, but says he doesn’t think it’s actually growing. And when I inquire, my oncologist says sure, he’s seen breast mets look like this before. He agrees that the lung-cancer hypothesis is a little hard to swallow given the circumstances. So, given all the opinions, he comes down strongly in favor of this plan: no biopsy, for goodness’ sakes no lung surgery, and right now no zapping, either–just wait and see what the next CT scan says in three months.

And that’s where we are. At least until the next phone call.

A beautiful picture of the future

Mon, 02 Feb 2015 09:49:07 +0000

I greatly enjoyed perusing this illustration from a Scientific American article (thanks, Paul): “How Oncolytic Viruses Destroy Tumors”

Ahhhhh wouldn’t that be great?

Cancer terminology

Wed, 28 Jan 2015 17:32:29 +0000

An article right up my alley by Susan Gubar in the New York Times.

Woo hoo, insurance woes less!

Mon, 26 Jan 2015 12:01:27 +0000

http://www.timesunion.com/news/article/CDPH-cancer-doctors-reach-deal-6040213.php

What a relief.

It’s Monday and Eric and I spent an amazing weekend in New York City, which we never do. (This was maybe the second time going to NYC for fun since we moved to New York State in 2002–just haven’t wanted to, mostly.) I was pretty low-energy on Friday, when we went, but had plenty of energy on Saturday. We came home Sunday morning. We took the train along the Hudson, which is so beautiful! The ice was amazing.

Today I got back to doing interval exercise (cardio, aerobic) after more than a week off, though I did do some walking in the meantime.

In the city we saw the Henri Matisse Cut-Outs special exhibit at MoMA, went to a play, went to a clothing store I wanted to visit where I found a new kind of clothes to buy, and ate Ethiopian food and Vietnamese food and famous vegan food-truck food. We stayed with a friend (thanks, Mercer!) and took the subway a lot. But also did as much walking as energy allowed. We took a fictional history tour of the High Line and its neighborhood, run by Story Tour, and wandered around in Times Square a bit to see how it has changed. We planned just the right amount and let whim and serendipity guide us the rest of the time.

Before the weekend I spent time feeling fatigued and a bit loopy due to the brain zap & the just-in-case anti-seizure medication. But we still managed to get household things done and do some good Online Writing Workshop work. Chemo started up again uneventfully on Thursday (also this coming Thursday). And that’s the news.

Brain zapping went well

Sun, 18 Jan 2015 14:54:17 +0000

The zap on Thursday was much quicker and easier than last January, and now I’m feeling low-energy (as expected) and fuzzy in the brain (also expected, due to temporary anti-seizure meds I have to take just in case for a week). My mom is visiting to help out and I am spending much time on the couch in front of the warm masonry heater! Chemo starts again on Thursday. More news later.

Off to zap on January 15th again

Thu, 15 Jan 2015 12:45:58 +0000

One year ago today as I left the house to be zapped, my friend Isa said: “I love that, by about 3pm today, you’ll have a shiny, well, healthy and happy brain.” Once again, I am holding that intention.

Shiny

Well

Healthy

Quotations

Wed, 14 Jan 2015 21:08:21 +0000

I really resonated with this comment from a reader of a New York Times article about caring for people at the end of life, by Atul Gawande:

But when I faced incurable life threatening diseases myself I finally learned the "meaning" of life and death. Stuff happens and we stumble along trying to make the best of things before we all die by the unknown means natural/ supernatural destiny has planned for us. The advantage and insight provided by a near death experience or life-threatening illness is context and perspective about the chance random nature of our mortality.

A NYT reader named Patty Dixon said this in response to an article about a doctor who chose palliative care over last-ditch chemotherapy and surgery, and died at home with family and friends:

The problem is, in our culture, we are all sailing along on the Good Ship Denial. Death will come many, many moons from now when we are very old, tired and deep in sleep. Getting a terminal diagnosis is so rattling partly, I think, because we are shocked right back into reality. Suddenly we have entered the land of the dying, where no hope resides.
But here’s the kicker. We are all dying as much as we are living. There is no “land of the dying” any more than there is a land of the living. We are all constantly doing both. The moment you are born, you begin to die.

My point is, we must live with this wisdom, not in fear of it. If you weren’t afraid to be born, then you should not be afraid to die. Remember, cancer occurs because cells won’t die when they should. This all might sound silly to some of you. Whereas I find it of great comfort.

My time as a hospice volunteer taught me that you must live every, single moment fully and humbly. Never take one second for granted. And don’t fear the most natural thing in the world. Death is just death. Break down your fear. Is it of being in pain? Is it of being separated from loved ones? Is it the unknown? Face these issues, bravely and squarely, and you will find a great measure of peace.

Dying well does not come easily. But we all owe it to ourselves to learn from those who have gone down this journey and did it right. Dr. McKinley did it right. I hope I do too.

I can’t remember who said this one, but it was in a podcast about moving through the grief of living on after the death of a loved one: “I kept going, and meaning took hold in unexpected places.”

And finally, a passage from the Jewish *Gates of Prayer *that was read at my Uncle Howard’s funeral gathering quite a few years ago, that I really liked:

All things pass; all that lives must die All that we prize is but lent to us; and the time comes when we must surrender it. We are travelers on the same road that leads to the same end.

And finally, a quote from me: "I would cry more often if it wasn't for all the snot."

(Today’s pre-zap set-up procedure went fine and tomorrow afternoon is the Real Thing. Should only be a bit over an hour for the procedure itself, starting at 1:30. I get to bring my own CDs.)

My chemo-versary

Sat, 10 Jan 2015 18:14:08 +0000

It’s my chemo-versary today: one year ago today I started chemo. So here I am, no sicker. Which is apparently a major triumph “in the metastatic breast cancer setting.” Because even knowing that the statistics are about 5 years behind current treatment options, and even knowing that statistics don’t really apply to any one individual, the MBC survival curve seems dauntingly grim: the studies and articles I am reading all say things like “a median survival from the time of developing metastases rarely exceeding one year.”

So here I am in month 14, celebrating a year of effective chemotherapy. I think I’m on cycle 17. Go, Eribulin. Go, me.

Yes, I have brain mets again…small wrinkle in the plan, it must be admitted. The schedule is to zap them with SRS on Thursday, coincidentally one year to the day after my first zapping procedure. There are only two mets this time and they are smaller than a year ago and both are in easy-to-target spots, so I assume the procedure will be lots quicker and easier. Then a week after that, back to chemo again. This chemo doesn’t cross the blood-brain barrier (as far as researchers know so far) so having new brain mets doesn’t mean it’s not working everywhere it reaches.

The two metastases that chemo does reach are holding steady–not growing, not shrinking. I wish I could see them. Why is there no fancy 4-D ultrasound for anything but in-utero babies? I could use a good visual. There might be a tiny second bone met in one lower-back vertebra or it could be some other little blip seen via the miracle of MRI–so I’m not worrying about that. And most important: no new metastases in any organs. These mets I’m apparently stuck with for now are not affecting me. Very well behaved.

For an extensive review of how things are, triggered by the chemo-versary thing, keep reading below these great pictures!

And here are pictures of a couple other important people!

: Will on Christmas Day

: Jess on Christmas Day

Though I am technically a tiny bit anemic lately, my red blood cell counts are still reasonable (always so far in the normal range, even if lately lurking at the very bottom dregs of normal); I don't know what they're up to (down to) on my weeks off because I don't get tested then, but I think I can feel my mild anemia sometimes then when exercising. My white blood cells are surviving, too--always "normal" except one week when they were low. I don't think I've gotten sick more often than usual, or had a cold for longer than usual. There is a slow downward drift to these numbers but I'm not near needing to do anything about them. (Anything: delay chemo, get blood-count-increasing shots, get transfusions, stop chemo.)

My hair is curly. Though it is thinning a lot (since November?) and right now looks a little pitiful, I am feeling lucky to have gotten hair back at all after the first few months of chemo (it came out about a month after I started, but grew back as soon as my Eribulin dose was reduced in April). Why it is thinning so much is a mystery. Nothing has changed…is it a cumulative build-up of something toxic in the hair follicles? Or the natural life cycle of hairs, which are all unusually synchronized because they all grew from nothing in early May? Or…? Brain zapping may make patches of it fall out again soon anyway, so we’ll see what will make me feel the least pitiful: shaving it all off (brrr, in winter)? Covering the thinnest parts with a bandanna or a hat? Or just embracing the humbling experience–otherwise unattainable for the 51%–of male-pattern baldness? Um, no, probably not that last option.

Hmm, much of navigating the having of cancer, for me, seems to be about figuring out what will make me feel the least pitiful. (In fact the worst thing about nausea & vomiting caused by chemo–which I don’t have this time around, so far! at all!–is how pitiful it made me feel.) The realm of hair contains, apparently, much potential for pitifulness.

I definitely have fewer eyebrows and eyelashes than I did a year ago. A minimal number of eyelashes, probably so few that mascara would just accentuate the weirdness, and besides I have never liked the feeling of gunk on my lashes. My eyebrows need help because on one side I have an eyebrow that stops halfway along, almost, and on the other, 2/3 of the way along. Luckily I started out long ago with really thick eyebrows, which chemo in 2006 thinned out some, but I still had some to spare a year ago. SRS mask-making accidentally ripped some of them out (like waxing?) and then by summer I had figured out (with help and advice) a “prosthetic eyebrow” technique using a brow pencil and stuff that is basically brow mascara. Is it good luck that the current “eyebrow fashion” is very thin, very fakey eyebrows? Mine, prosthetically enhanced, still look more like mine (messy, thicker).

Oh, there I go about hair again.

I am in better shape that I was a year ago, in some ways, due to interval training, jogging, and some strength training. I’ve done all this with the help and company of various relatives and friends at QIVC–which means we’re all getting healthier, not just me! That’s fun. It also gives some of us a bit of social interaction daily in these cold indoor-oriented winter days. I’m grateful to everyone who has jumped on the exercise bandwagon with me, especially my almost-niece Carolyn, who agreed to be my personal trainer and get me doing all this stuff. (It was my trip to the Block Center in late July that got me started on Lots More Exercise.)

But I also am at maybe 80-90% of my old physical energy and stamina for normal life, it feels like, and am frequently achy and stiff. Plus I keep hurting my shoulders by doing nothing in particular beyond some pushups, and then mysterious things like sciatic pain show up and stay for a few weeks. More importantly, it is harder lately to get my brain to focus in on anything complicated. I am very distractible. Chemo brain? Or just lots of distracting aspects of my current life?

I take a lot more supplements now, after a lot of research on each of them. I’ve been getting IV Vitamin C steadily since May, and acupuncture as well. And I eat more kale, broccoli, mushrooms, and salmon. (Here is the best cancer-fighting meal ever: Salmon sashimi, seaweed salad, green tea, and shiitake mushrooms. I guess you could add some grilled broccoli with miso sauce if you had room.)

All summer our garden produced a bounty of kale (enough for us to give lots away, too: we had 50 plants!) and I developed my kale and fruit smoothie: kale, lime juice, a bit of OJ, a bit of kefir (like yogurt), banana, mango, pineapple, flax oil, and glutamine powder. Will & Jess & Eric like to have some too. I spend a lot more time on my weird foods than I did a year ago–besides the daily smoothie, I also drink a green drink full of broccoli sprout powder etc. (ick) and sometimes make seaweed salad with dulse & Japanese seasoned salt and vinegar. When I travel I have that with breakfast. I am still struggling to avoid meat more often, because I like it so much. The whole family has cut down on dairy products but good cheese is still too hard to resist. We now buy a lot of oat milk, hazelnut milk, and almond milk and I make my own kefir instead of buying yogurt. When I’m stressed and feeling pitiful I still want candy. But mostly I just indulge sometimes in 80% cacao dark chocolate.

So that’s the summary of now vs. January 2014. The coming week is pretty full with appointments and the rest of life, but I will plan to post something after my brain has been zapped again and I have thus developed a new superpower. Wonder what it will be? Nominations welcome.

...but results had to wait until January 6

Wed, 07 Jan 2015 22:09:41 +0000

Finally heard yesterday from the radiation oncologist who ordered my follow-up MRI. For those of you keeping count, the one questionable maybe-tumor has not changed at all and therefore his hunch was right–it’s scarring, not a met. Both actual tumors have grown (they are both around 5mm now…didn’t they get my message to be indolent?) and are a good size to target, and his gut feeling was to just get the zapping done “next week” rather than wait until the end of the month. Even though by the end of the month if they kept growing they’d be 7-8mm which is just as curable. But hey, gut feelings.

So we’re waiting for insurance approval and if that comes through very amazingly fast, my first planning appointment for the zapping procedure will be Friday, and the procedure itself will likely be a week from Friday, or maybe Thursday. Chemo will be put off for a week so I don’t have chemo and zapping in the same week. This messes up my chemo schedule, which felt threatening to my March vacation plans (to go away during my “off” week), but my oncologist said family vacations were more important than one week’s change in the chemo schedule so we would just put off chemo that week in March as well.

So I wondered, is there more wiggle room in the chemo dosing schedule than I think? Because that would mean delaying chemo a week at Thanksgiving, a week in January, and a week in March (basically every other month). I thought if the chemo is working we shouldn’t risk taking that much time “off.” He said if a week here and there over six months made it stop working, it was close to ceasing to work anyway. Gee, thanks for reminding me about that eventuality…

Meanwhile I now believe I can, indeed, cure cancer with my brain! Here’s the story. I was having really bad sciatic pain, kind of out of the blue. So that earned me a lumbar-spine MRI to make sure no new metastasis was pressing on the sciatic nerve in my spine. The MRI showed “two very small spots” in my vertebrae that the oncologist, reviewing them with me over the phone, said were of unknown cause but “given your history” were probably metastatic spread, just too small to show up on the latest surveillance CT scan. Or they could be benign–they certainly weren’t the cause of any sciatic-nerve impingement. So we wouldn’t worry about them, but they were probably more bone mets. OK, so now I have two more mets.

Me: “Did you check my April 2013 spine MRI to see if they were there then? Remember, when you ordered the MRI I said we could compare it to that one if we had questions.”

Oncologist: “Oh, yeah, forgot about that. Let me check….hmmmm…pulling it up now… Yup! One was there before–‘benign hemangioma,’ it says, same vertebra, same location, size. That’s the bigger one, 5 mm. Same as before. So never mind about that one, it’s nothing.”

Me, thinking: So I just cured myself of 1 out of 2 metastases with the power of my BRAIN! Go, brain!

Then to even things out, here is this interchange from yesterday:

Oncologist, reviewing MRI results with me over the phone, with report hot off the press from radiologist: “So the cerebellar lesion is nothing, just scarring, and the parietal lesion has grown to 5mm, which is a good size to target now. So we can treat it next week, if you want.”

Me: “What about the other met, the left occipital one?”

Oncologist: “What other met?”

Me: “The one in the left occipital lobe. It was in the November MRI report. There were three, but one was questionable. You just told me about two of the three. One is scarring, one is real and grew; what about the other one?”

Oncologist: “It wasn’t in the radiologist’s report…let me look at the images…”

Me:

Oncologist: “Oh, yes, there it is. Yes, that one grew too. We can target that one as well now. Don’t know why the radiologist reading the MRI missed it.”

Me: “Well THAT certainly doesn’t fill me with CONFIDENCE!”

Me, thinking:* Whoops, I just gave myself another brain met with the power of my BRAIN.*

MRI is on December 29...

Thu, 18 Dec 2014 12:20:15 +0000

I guess maybe some of you might be wanting to know that my follow-up MRI to check in on my latest TINY TEENY MINUSCULE WEAK FEEBLE brain mets is on December 29 so early in the AM that I don’t even want to think about it.

December rushes along

Thu, 18 Dec 2014 12:18:22 +0000

We are almost to the solstice and for most of December so far I have felt somewhat unmoored. It’s been hard to focus on what I think of as “work,” though holiday projects are giving me a good excuse this week at least. I have had lots of unscheduled time and have managed to feel, at the end of most days, as if I have squandered most of it. Projects I am in the middle of have been hanging fire since sometime in November waiting for me to find my way back to them. Or fight my way back to them, or wade (through dozens of smaller immediate tasks swarming around my figurative legs). I have kind of felt as if I’ve been drifting farther and farther from that grounded place where I can assess my tasks, prioritize, tackle ’em, and end up having done what I set out to do, on a daily or weekly basis.

Part of the muddle has been last-minute notification of big health-insurance changes. Our access as a small business to a very good insurance plan from our very good local non-profit health-insurance company (CDPHP) has made the insurance part of this past year very easy. Now that access is going away because of a change in the law about which types of small business can access group insurance plans, and our broker did not tell us about the change until early December (though the change to the law was made a year ago…we are switching brokers).

Then the next day New York Oncology Hematology, where I see my oncologist and get chemo, sent us a letter saying they are not signing a new contract with CDPHP because of a dispute over reimbursement fees, and as of February 1 any NYOH charges will not be covered by CDPHP. Whoah! Depth-charge explodes in the already roiling waters of the Harris-Braun health-insurance pond. (News coverage of the pending breakup)

Figuring out what to do about all this, and then getting started doing it, took us most of our attention last week. Eric did most of the legwork, and made an amazing plan-comparison spreadsheet, for all which I am just so grateful. The NYOH office staff gave us a lot of their time to a) listen to us complain about their handling of the situation and their truthfulness to patients and b) help us figure out how to find out information from insurers that would help us make a plan. We talked to both companies, and both say they are still working to resolve the issue. Many voice-mail prompts were followed in vain and much on-hold music was listened to. Now we have a plan for moving forward, but there is still a fair amount to do, and if NYOH and CDPHP don’t settle this before mid-January, we will have to switch to a different insurer.

Changing health-insurance companies has a lot of down sides–most importantly, we can’t get any assurance that the other insurer will cover my chemo drug (since it is slightly off-label use). Second-most importantly, we have had a plan with coverage extending to a national network that includes many fancy cancer places like Dana-Farber and Sloan Kettering, and for now we don’t have that anymore, and we may not be able to get that with another insurer. Yikes!

Through this foggy time I have managed to pretty much keep up with exercise, both walks and cardio/interval training, doing both most days. I have company most days, which is great and keeps me going. The weather means we are doing more exercise indoors. I’m also keeping up with green veggies, my various I’ll-bet-on-them-under-the-circumstances supplements, and of course chemo, IV vitamin C, and acupuncture. My last round of chemo was easier than usual, maybe because I got an extra week off beforehand for Thanksgiving travel. (We went to Houston for Thanksgiving with family, which was really nice, and I ran 3 miles for the first time in my life, with my sister!)

The zap plan so far

Wed, 03 Dec 2014 18:06:01 +0000

Met with the radiation oncologist this afternoon, after chemo yesterday and IV Vitamin C and acupuncture this morning. This week I’ve felt less icky than usual; maybe that extra week off for Thanksgiving really made a difference.

So the radiation oncologist said first of all, he doesn’t think 1 of the 3 spots seen on the 11/20 MRI is actually a tumor, and the other two are–get this–too small to treat without risking missing them (3mm & 4mm). The reason for this has to do with the precision of the machine’s radiation beams vs. the inescapable movement of the brain as blood pulses through it. The size of the margins of healthy tissue around each tumor that they zap along with the tumor also comes into play…basically to get 99% treatment response rate, they need a bigger target.

Hah. It was kind of bizarre to be sitting there with the radiation oncologist listening to him almost laughingly dismiss two cancerous growths inside my brain as “too small.”

So I’ll sit tight until the end of December, get another MRI then, and unless the spots have grown quite rapidly, we’ll schedule the zapping for the end of January, during my week off from chemo. If they have grown rapidly, we’ll do the zapping in early January. And I guess if they haven’t grown much at all, we might wait until late February…because they need to be BIGGER. How weird.

So this is good news–especially the downgrading of one of the spots to probably-not-a-tumor–and I just have to adjust to the Not Having a Solid Plan thing…again…as usual. I have some births I’m supposed to assist at coming up in the next two months and I hope I get to them ALL.

Note to brain: despite my desire to have a plan and get things over with, I want you to know that I would be very happy to have an MRI in 4 weeks that showed “not enough” growth. So don’t knock yourselves out in there in the interim.

MRIs

Sat, 29 Nov 2014 23:41:30 +0000

If you don’t get the joke above after thinking about it for a bit, or you have ever just wondered what an MRI sounds like, listen to a bit of this video, which also shows the equipment needed for a brain MRI: Brain MRI sounds & sights (first 50 seconds should do). All metal needs to be removed because of the strong magnetic fields used.

More of these in my immediate future, for sure.

Update with and without varnish

Tue, 25 Nov 2014 08:08:10 +0000

I spent the time between my CT scan and MRI Thursday AM and our meeting with my oncologist Friday AM trying my hardest to think of a descriptive phrase for that time period in ongoing cancer treatment or follow-up, because It’s a Thing. It’s the scan-results interval (SRI?). It’s the DFWP, the dread-filled waiting period. It is the time when I worry the most, though that makes no sense. Whatever the cancer is doing, it was doing it before the scans…it’s not like the scans determine what is going on. And yet. I am pretty good at Not Thinking About It before the MRI & CT appointments; very good at not worrying during the scans themselves; and then a gray overcast hovers over my life until our appointment with the oncologist a day or two later.

Like “chemo brain,” this aspect of the cancer lifestyle deserves a catchy name so we can talk about it. Suggestions welcome.

So what is going on, the unvarnished update: the CT scan showed no changes, but the MRI showed 3 new 4-5 mm “spots” in my brain.

Now for the varnish: the CT scan is very good news because it means the chemo is still working (10 months & counting): the tumors are not growing, and no new ones have appeared anywhere. So that is really good. And it buys me 3 more months of the chemo regimen I am used to (until the next scans). The new brain lesions are a) very small, and causing no swelling or anything at all; b) apparently not in tricky places; and c) not in the same places as last winter’s. In other words, they are a new mini-crop, not the old ones growing back. This means it’s very likely that they can be “zapped” with another treatment of stereotactic radiosurgery (SRS), like the January zapping but less extensive.

My oncologist said he likes to look at it as: “we are in a better place right now than we were in January.” (January, for those of you tuning in late: 3 spots, one big…no, 4…n0, 5 spots, one big and one tiny but in a location hard to reach safely; lung and bone tumors that might or might not respond to the chemotherapy we had just begun to try; no evidence that the brain lesions would respond to SRS; no good evidence for the rate of growth of the cancer.) His “better place” is defined by: smaller and fewer brain lesions this time around; we know SRS worked on the others so we can be pretty sure it will work on these; it took a while for anything new to show up in my brain so the rate of growth is not devastatingly fast; and chemo has worked well and is continuing to work well outside the brain (no one expected it to get into the brain), meaning no new tumors, no growth of the existing tumors, and all of this “holding steady” is happening in a state in which I have no symptoms from the cancer. Peachy! Shiny. Varnish!

I said “But compared to August’s results, well, I’ll take August.” He said sure but don’t compare the lows to the highs; he compares the highs to the highs and the lows to the lows. Doubtful look from me elicited “That’s how I do it, and I’m sticking to it.” Okay then, if that’s how you keep doing this job week after week, year after year, patient after patient! Go for it.

So the paint-stripper version: no miracle is happening. All the things I’m doing besides chemo to make my body less hospitable to cancer are not working 100%. I’ll never know whether that means I should be doing more of those things, or whether they are having no real effect at all. Am I using my brain too much? Maybe I need more episodes of “Bones” and fewer abstracts of Phase II studies about copper depletion therapy’s effects on metastatic TNBC. Meanwhile my schedule for December is up in the air while I experience another Cancer Interv-hell: so far all of this is from my regular 3-month surveillance MRI and the oncologist’s best guesses, and I haven’t talked to the intervention radiologist yet, the one who does the SRS. So nothing is for sure yet, though Eric and I are both sure that we floated this scenario past the radiologist in January and he said SRS could be repeated. Perhaps he will call my cell phone to discuss my brain mets and penetrating my head with radiation while I try to choose organic breakfast cereals in the aisle of a Houston grocery store (where we are going for Thanksgiving–Houston, not specifically the store). Hate that.

“Cancer Interv-hell”…what do you think?

Trying to make sense of lab results (or, what I do for fun)

Tue, 25 Nov 2014 02:21:20 +0000

Thinking about my various lab results (bloodwork done every chemo day), I was wondering if there were patterns between Week 1 and Week 2 that I wasn’t seeing, or patterns that would explain the bouncing of my red blood cell count. It didn’t seem predictable at all, though I would have predicted something like: best on Week 1 (after 2 weeks without chemo) and worse on Week 2 (only 1 week after a dose of chemo). But then blood cells have their own life cycle. So I wanted to see if anything made sense. AND our mathematician friends were visiting. The result: some amusing geeking out in Excel and then Google Charts at the dining table, and this:

WBC=white blood cell count, RBC=red blood cell count, HGB=hemoglobin, AST & ALT are liver enzymes. Values for Week 1 and Week 2 of the chemo cycle are shown in matching pairs of colors--bright and lighter. (Values were normalized so they would all show nicely on the same graph.) Pretty, huh? Next it would be fun to graph them all in relation to their normal values, somehow.

I have lost track of what round of chemo this is!

Thu, 06 Nov 2014 13:55:41 +0000

And not because of chemo-brain…just because there have been so many of them.

Which is a good thing–the chemo (2 weeks on, 1 week off, since January) has been keeping the cancer from growing. I get scanned on the 19th to find out (on the 21st) if it continues to work. A good result on scans (body CT and brain MRI) = 3 more months of the very doable status quo.

Meanwhile I’m continuing to try to adjust my internal “terrain” to be less cancer-friendly. This means all that daily exercise, veggies & “turbo greens” powder in hold-the-nose-and-drink form, various supplements to hold neuropathy in check, minimizing dairy and meat, plus taking zinc, B vitamins, vitamin D, fish oil, calcium, mushroom extract, green tea extract, etc. every time I turn around. I even gave in and got one of those PILL ORGANIZERS! I’m still trying to walk the line between what the Block Center recommends (major antioxidants) and what my oncologist will have a complete fit about (major antioxidants).

There is no evidence that antioxidants like the ones I want to take are harmful while taking chemo (radiation is different though). There is a bunch of aggregated evidence that some antioxidants can be used with some chemo regimens, and either don’t interfere or actually potentiate the chemo. There is also some decent evidence that those antioxidants help with side effects of chemo. However, there is no solid evidence that* the exact antioxidants I want to take* are helpful while taking my exact chemo drug. So it’s all a bit of a crapshoot. I understand why mainstream oncologists don’t feel they can recommend things to patients without gold-standard, applicable evidence, but what I’ve come to see is that doesn’t mean I can’t choose to try things in my own body after becoming reasonably informed. Especially if experts DO recommend them and have good reasoning behind the recommendations–just not all experts. I have a team of somewhat competing experts.

Since my last update I attended the Midwives Alliance of North America’s annual conference and had a really good time. It was in St. Louis and our hotel was right by the Arch–I could see a lot of it from my room. I gave my 90-minute presentation on length-of-pregnancy research and methods of setting due dates, which was a total blast. About 40 people attended and were interested for the entire 90 minutes. I also helped do the annual update on the MANA Division of Research, and I got an award from MANA for my various contributions (to the MANA Stats project) over the last 11 years. Oh, and MANA’s new poster-presentation prize is apparently named after me, but the conference really doesn’t get enough poster submissions yet. So if anyone has ideas for how to get more poster presentations at a conference, let me know! ‘Cause now I feel a bit responsible. :)

Fall is coming to a close here in Columbia County and we’re moving into sometimes-dreary early winter. I enjoyed the long leaf season, though. Will is enjoying Buxton School (his Williamstown, MA progressive, small boarding high school) and Jess is struggling somewhat with homeschooling. We’re looking forward to Thanksgiving in (warm? sunny?) Houston with my mom’s side of the family plus fun friends. But before that, one more week of chemo/IV vitamin C, and then those scans.

Pictures are more fun than politics (more in the weird hair series)

Wed, 15 Oct 2014 16:07:18 +0000

Me and a porch post. More curls than I have ever had in my life. (But I’ll take it.) Photo by Jess.

Improving end-of-life care with some good questions

Tue, 07 Oct 2014 10:30:34 +0000

Recently in the *New York Times *Atul Gawande wrote about end-of-life care and helping people make the most of the time they have left. Makes sense to me. Let’s hope the four questions he describes can be a general Rx for doctors everywhere.

One last suggestion for National Breast Cancer Industry Month

Fri, 03 Oct 2014 10:47:30 +0000

If this issue speaks to you at all, go to Breast Cancer Action, learn a bit more about current pink-ribbon madness, and add your name to their letter-writing campaign: all here.

October is upon us. Think before you pink.

Wed, 01 Oct 2014 14:34:04 +0000

Below are various quotes from the essay “Welcome to Cancerland” by Barbara Ehrenreich to get us ready for “National Breast Cancer Industry Month.” (Thanks for the link, Dorian!) This was written in 2001, but not much has changed. Before being guilted into buying pink things, or things with pink ribbons on them (like yogurt), consider the observations and ideas below.

Ehrenreich on why breast cancer is such a big corporate cause:

It is the very blandness of breast cancer, at least in mainstream perceptions, that makes it an attractive object of corporate charity and a way for companies to brand themselves friends of the middle-aged female market. With breast cancer, "there was no concern that you might actually turn off your audience because of the life style or sexual connotations that AIDS has," Amy Langer, director of the National Alliance of Breast Cancer Organizations, told the *New York Times* in 1996. "That gives corporations a certain freedom and a certain relief in supporting the cause." Or as Cindy Pearson, director of the National Women's Health Network, the organizational progeny of the Women's Health Movement, puts it more caustically: "Breast cancer provides a way of doing something for women, without being feminist."

On the normalization of breast cancer as a rite of passage:

*The First Year of the Rest of Your Life*, a collection of brief narratives with a foreword by Nancy Brinker and a share of the royalties going to the Komen Foundation, is filled with such testimonies to the redemptive powers of the disease: "I can honestly say I am happier now than I have ever been in my life -- even before the breast cancer." "For me, breast cancer has provided a good kick in the rear to get me started rethinking my life." "I have come out stronger, with a new sense of priorities." Never a complaint about lost time, shattered sexual confidence, or the long-term weakening of the arms caused by lymph-node dissection and radiation. What does not destroy you, to paraphrase Nietzsche, makes you a spunkier, more evolved, sort of person.
The effect of this relentless brightsiding is to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or graying hair. Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalize the disease: the diagnosis may be disastrous, but there are those cunning pink rhinestone angel pins to buy and races to train for. Even the heavy traffic in personal narratives and practical tips, which I found so useful, bears an implicit acceptance of the disease and the current barbarous approaches to its treatment: you can get so busy comparing attractive head scarves that you forget to question a form of treatment that temporarily renders you both bald and immuno-incompetent. Understood as a rite of passage, breast cancer resembles the initiation rites so exhaustively studied by Mircea Eliade: First there is the selection of the initiates – by age in the tribal situation, by mammogram or palpation here. Then come the requisite ordeals – scarification or circumcision within traditional cultures, surgery and chemotherapy for the cancer patient. Finally, the initiate emerges into a new and higher status – an adult and a warrior – or in the case of breast cancer, a “survivor."

On how breast cancer also functions as a cult or religion:

"Culture" is too weak a word to describe all this. What has grown up around breast cancer in just the last fifteen years more nearly resembles a cult -- or, given that it numbers more than two million women, their families, and friends-perhaps we should say a full-fledged religion. The products -- teddy bears, pink-ribbon brooches, and so forth -- serve as amulets and talismans, comforting the sufferer and providing visible evidence of faith. The personal narratives serve as testimonials and follow the same general arc as the confessional autobiographies required of seventeenth-century Puritans: first there is a crisis, often involving a sudden apprehension of mortality (the diagnosis or, in the old Puritan case, a stem word from on high); then comes a prolonged ordeal (the treatment or, in the religious case, internal struggle with the Devil); and finally, the blessed certainty of salvation, or its breast-cancer equivalent, survivorhood. And like most recognized religions, breast cancer has its great epideictic events, its pilgrimages and mass gatherings where the faithful convene and draw strength from their numbers. These are the annual races for a cure, attracting a total of about a million people at more than eighty sites -- 70,000 of them at the largest event, in Washington, D.C., which in recent years has been attended by Dan and Marilyn Quayle and Al and Tipper Gore. Everything comes together at the races: celebrities and corporate sponsors are showcased; products are hawked; talents, like those of the "Swinging, Singing Survivors" from Syracuse, New York, are displayed. It is at the races, too, that the elect confirm their special status. As one participant wrote in the Washington Post:
I have taken my “battle scarred” breasts to the Mall, donned the pink shirt, visor, pink shoelaces, etc. and walked proudly among my fellow veterans of the breast cancer war. In 1995, at the age of 44, I was diagnosed and treated for Stage II breast cancer. The experience continues to redefine my life.

And on races, walks, etc. (Race for the Cure, Relay for Life, and so on):

Feminist breast-cancer activists, who in the early nineties were organizing their own mass outdoor events -- demonstrations, not races -- to demand increased federal funding for research, tend to keep their distance from these huge, corporate-sponsored, pink gatherings. Ellen Leopold, for example -- a member of the Women's Community Cancer Project in Cambridge and author of *A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century* -- has criticized the races as an inefficient way of raising money. She points out that the Avon Breast Cancer Crusade, which sponsors three-day, sixty-mile walks, spends more than a third of the money raised on overhead and advertising, and Komen may similarly fritter away up to 25 percent of its gross. At least one corporate-charity insider agrees. "It would be much easier and more productive," says Rob Wilson, an organizer of charitable races for corporate clients, "if people, instead of running or riding, would write out a check to the charity."

She also points out elsewhere that the races/walks/survivor events place the cultural attention on the survivability of breast cancer and sidestep the many women who die from it. If it's true that only 5% of breast-cancer research funding goes to research on metastatic disease (per Lisa Bonchek Adams), this might be part of the reason why.

Do tortilla chips count as whole grains?

Mon, 29 Sep 2014 16:21:28 +0000

Foods I’ve been eating lately:

Kale & fruit smoothies every morning: kale from our garden, 1/2 banana, 1/4 cup frozen mango, juice from half a lime, 2 oz homemade kefir, 2 oz OJ, big scoop of glutamine powder for neuropathy, 1 tsp flax-seed oil for omega 3s. Gradually adding more & more kale. I think I would be happy drinking almost anything if it had enough lime juice in it.
Wheat berries for breakfast: soaked & cooked, with a bit of fakey butter, maybe a dribble of maple syrup (thanks Charlie P.!) and salt.
Kombucha that we make at home, with fruit. The latest batch has peaches and ginger.
80% dark chocolate. The best chocolate bar I've had in a long time is this one: Equal Exchange Organic Panama Extra Dark.
Shiitake mushrooms
Sushi dinners: how cancer-fighting of me! They include these cancer-fighting foods: fatty fish (salmon), seaweed, green tea, sometimes shiitakes. A *must* for the anti-cancer lifestyle.
Homemade low-sugar granola. I have perfected my recipe for almond granola with little enough sugar & oil that it seems reasonable to eat as a main cereal (not just a sprinkle-on-top cereal). Now my issue is: I can't die anytime soon--who will make healthy granola for my family?

P.S. Well, they do, but they're fried. Except if you make them at home and bake them instead (6 min per side @ 350).

Accumulated observations: creativity

Fri, 26 Sep 2014 16:24:50 +0000

Seems like creativity/making something/working with my hands is something I use to lower my stress level. This winter Will & I took a metal jewelry-making course. Although I felt icky from chemo most days I went, it was great fun. We used the lost-wax casting method to make bronze jewelry and then did some simple metal-working and soldering. I made some earrings and pendants.

Later in the spring I followed a tiny tendril of interest and ended up with my friend Lisa’s beading supplies for a while. I’ve made some bead earrings and a necklace and bracelet. I don’t know what I’m doing, but it’s fun.

I remember back when Jess was a baby I got this crazy idea to make a quilt out of old clothes and leftover fabric. Not a crazy quilt, though–a very organized and thoroughly pre-designed one. Someone I knew from La Leche League in Newtown was a quilter and wanted a project, so she mentored me with the cutting and pinning and did the sewing. I did the picking of the fabrics, the pairing of the fabrics, and the semi-obsessive considering and laying out of the resulting many squares into a queen-sized quilt. It was extremely awesome until many of the fabric pieces (which were old, used, well-loved clothes to begin with) fell apart. But what I’m remembering is not just the great feeling of the Making, but the question a friend of mine asked me when I mentioned I was staying up at night to work on it on the floor of the dining room, after Will & Jess were asleep and before baby Jess was scheduled to wake up again once or twice in the night: “You are so busy, you have so much to do. Why are you doing this too?” Well, I was doing it to stay sane. To not just feed and nurse and change and tote and drive and buy and eat and sleep and work, but to Make.

I’ve also needlepointed a bunch of pillow-tops in the last decade or so, all of which have eventually been turned into pillows with the help of various people more skilled than I with a sewing machine. (Sewing machines and I do not get along.) Those I do mostly to give my hands an occupation at times I need to sit still and listen: conference presentations, meetings, long conversations, sometimes parts of long labors. Otherwise I have a hard time focusing.

Since cancer came back into my life I’ve noticed also that I am feeling like putting a bit more energy into my clothes and what exactly I wear, and being more interested in clothing items that express a little more about me, or how I’m feeling that day, than do the perfect pair of jeans.

And of course getting this house designed and built felt like a huge, 3+ year multi-faceted creative act. At least on the best days.

Some pictures! (scroll way down for all of them, and click for bigger versions if you’re interested)

Another EXCITING lunch picture!

Mon, 22 Sep 2014 13:24:02 +0000

So this is the kind of thing I try to eat for lunch and dinner these days: spinach salad, black bean soup, sauteed squash, sauteed mushrooms, and roasted new potatoes with homemade ají (Ecuador-style hot sauce). Glass of water not pictured. Of course I did snack on some whole-wheat crackers earlier in the day...

Tomorrow I start a new chemo cycle (I believe it's cycle 13).

August, September

Thu, 18 Sep 2014 22:43:40 +0000

I think a month is quite long enough to procrastinate about updating my blog.

Let’s see, the initial roadblock to blog-fluidity was the trip we took to the Block Center for Integrative Cancer Treatment in Skokie, Illinois at the very end of July. The multi-specialist, almost-6-hour visit was full of Stuff to Think About. We (Eric and myself, later joined by my mom) met with:

a psychosocial therapy/social worker type person who asked about coping, support, the kids, dealing with emotions, etc.
a nutritionist who looked at my previous lab results, walked us through the Block Center diet (basically, vegan with lots of whole grains & veggies), and went over suggested supplements and foods to match the lab values that indicate the "terrain" my body is providing for the cancer
Dr. Udhrain, the oncologist, who was very cheering and provided a bunch of information about treatments and how they do them there
Dr. Block, the founder, who has been doing this for 30 years and answered some interesting questions in solid ways.

Then I had lots of blood drawn for updated lab work to further customize the eating/supplement advice they gave me (I had a follow-up call with the nutritionist a couple of weeks later).

Sometime in between there, we grabbed plates of food from the lunchtime healthy-cooking demonstration they do every day, and had some tea in the waiting areas that are like living rooms, where the practitioners come find you when they’re ready for you. Everyone was nice. It was very boutique-y but professional. Most of it was covered by insurance.

The upshot of the visit was this:

Current chemo is a good choice; they would not suggest a change as long as there is no progression of the tumors. Beyond that, there are many options, and I could come there for the Block Center version of them (involving lots of supportive treatments around the same chemo, and sometimes different administration times of that chemo--chronomodulated chemotherapy, see righthand column). Or I could just consult with them every 3 or 6 months without switching to their care completely.

Beyond the standard chemo regimens there are some new things coming along, and some more advanced, customized, expensive things that could also be done (like testing my tumor to learn more about what it is susceptible to), and finally some way-out-there, travel halfway 'round the world for experimental treatment options that they could guide me to, as well.
Become vegan to avoid many dietary factors that encourage tumor growth, or might encourage it, and to be healthier all 'round.

Take lots of supplements designed to boost the immune system and interfere with cancer growth in various specific ways (supplements include the much-argued-over fish oil, of course, and lots of food-derived antioxidants…centerpiece of another sprawling, ongoing oncology-wide argument)

Exercise a ton more, to become healthier, more resilient, and better able to deal with complications & chemo effects. Heavy-breathing aerobic exercise every day, plus strength training and interval training multiple times per week.
Invest in mind-body work every day (meditation or yoga or Tai Chi or Qi Gong or secular mindfulness/body awareness or whatever) to reduce stress, boost the immune system, etc.

So I have been doing a lot of the above, especially the exercise (which I saw no downside to at all), since the end of July. My sorta-niece Carolyn (18) is pretty much my personal trainer. She exercises with me most mornings, and other people at QIVC have gotten interested in joining us sometimes too, which is really fun. When she is busy or away, I try to find someone to have an exercise date with.

Avoiding almost all meat and dairy is harder. I have definitely cut down on dairy and didn’t eat much meat before anyway. (But cheeeeese!) I am researching and gearing up on some of the suggested supplements. I’ve been meditating a bit, doing way more moments of breath awareness, and trying Tai Chi and a bit of Qi Gong.

I’m also reading the Block Center book, Life Over Cancer, even though it’s dauntingly long, because it goes into way more detail about the background, research, and justification of all these recommendations than I could get out of Dr. Block in an hour-long visit. If I have foll0w-up questions for him after that I’m welcome to send them in for him to answer. Knowing me, I certainly will.

All in all it was a much more hopeful story than the story from my current oncologist. They said they can often manage metastatic breast cancer as if it were a chronic disease, for years, and ideally some new treatment comes along before they have exhausted all the options of current treatment. Meanwhile their patients are living reasonable lives with cancer because the supportive treatments (like IV Vitamin C) and diet & exercise & supplements & meditation are keeping them healthy despite chemo. Their published experience backs up this assertion–their approach hasn’t been tested in a randomized controlled trial, but their results for their case series of metastatic breast cancer patients are pretty impressive.

So now maybe it becomes more clear how I haven’t had time to blog!

Other things have also been going on in regular life: Will is now at Buxton for 10th grade, 45 min away in Williamstown, which is a big adjustment for all of us (luckily he has some friends from here already attending there); homeschooling began for Jess; before that we went on a family vacation to Cape Cod and Boston for a few days; even before that, Eric & I spent two days in Southern Vermont before we picked up the kids from Flying Cloud (camp). And yesterday I turned in my last assignment for my summer grad-school course, an independent-study research project. What I turned in was the guts of a research write-up which should someday, in a greatly advanced form, become a paper we submit for publication somewhere. Exciting. Meanwhile I am taking this semester totally off from grad school–medical leave of absence. Not sure what I will do after that. I spent pretty much the whole summer trying to decide what to do this fall. Subject of another blog post someday, maybe.

Meanwhile in other news I have weird hair, but I am happy to have it. As usual post-chemo, it is not exactly my usual texture or usual color. I asked Eric to give me a haircut last month but he liked how it looked so he basically gave me almost a placebo haircut. So I need a haircut.

Chemo continues apace, 2 Tuesdays out of 3, with IV Vitamin C on the Wednesdays following. (I adjusted the Vit C schedule based on the Block Center’s recommendations.) Both make me feel icky, but not too icky overall, and it passes in a day or so. By “not too icky” this is what I mean: if there is something important scheduled the night of chemo or the day after, like a gathering of local Buxton students at our friends Gina & Richard’s house, or neonatal resuscitation training, I go. If nothing important is scheduled, I sit in bed and read, work, or watch something on the computer, and possibly take a nap. I don’t lose my appetite and seldom feel queasy or nauseated. I have plenty of energy most days. So: things are good.

Good scans

Tue, 19 Aug 2014 20:23:50 +0000

Today’s oncologist appointment was cheery. We went over my CT scan and MRI from last Friday and things are looking pretty good again. The best news is that the one remaining brain lesion is significantly smaller (how significantly, I will leave up to those of you who can calculate the volume of an irregular ovoid 3-D shape…ask & I’ll send you the two sets of measurements). It was smaller in all 3 dimensions. Less-than-avid followers of this particular plotline might not remember that in June, the main brain lesion was looking a little more active, maybe even a bit bigger, than in March (which bought me a ticket to a 2-month scan interval instead of 3). So to have it measure significantly smaller this time around is very reassuring.

And an educational public-service announcement about stereotactic radiosurgery (SRS), again: this kind of treatment (zapping instead of cutting out) is known to lead, in the months after SRS, to this kind of confusion (is it growing, or is it just slightly more visible to the MRI as part of the process of dying off?).

The CT scan showed everything the same–the two metastases unchanged in size, weird liver “hypodensity” unchanged, and most importantly, no new lesions anywhere. My gallbladder was apparently unremarkable and I took offense at the mention of my “inferior neck structures” :)

After a brief discussion with my oncologist of our consultation at the Block Center (more about which later…it’s dense), we had an interesting personal talk about meditation and then it was off for chemo, in the recently expanded but quite empty (today) infusion room.

So they added two new rooms onto the infusion area by opening up what used to be a corridor of private treatment rooms for really sick folks, and they seem to to me to have missed the boat on effective design. The two rooms are open on one side (the side that connects to the rest of the area) so they’re really more like giant alcoves. Each has 5 or 6 infusion chairs. All face each other–so when sitting in one, you are looked at by all the others. This does not seem to me to be a nice way to set up the chairs. However, it does mean that all the patients can be easily seen by the nursing staff as they walk by or stand at the open end of the room/alcove. Still. Our favorite chair is still at the end of the hall that comes off the main room like a little tail. It has a great view of the medication-preparation room (with exciting science-lab hood!) and the water cooler. Plus it’s near the bathrooms.

Latest cancer book: Radical Remission

Wed, 06 Aug 2014 21:18:14 +0000

This book came out of a qualitative research project/dissertation by a psychologist who got interested in cancer patients with unexpectedly good outcomes–either remissions or many more years of survival than expected. She interviewed lots of people about what they did to enable their “radical remissions”–and despite these sometimes being called “spontaneous remissions,” they don’t seem to be very spontaneous. The people with cancer made a lot of changes to get to their remissions, and she found similarities among them, culminating in nine specific areas of change that a preponderance of her interviewees worked on.

Eric read it too. For each of the 9 strategies, there is a detailed anecdote about one person form whom that strategy was the most important change. This is a a very patient-centered book; the interviewees are at the center of the narrative, because it’s about what they did. She also interviewed alternative & integrative healers around the world who claimed to have helped patients have “radical remissions.”

It’s very easy to read, though a bit frustrating for those of us who want references for everything. Reading it after or paired with Anti-Cancer would be a good strategy if you are one of those.

So one thing most everybody did was radically change their diet to eliminate or almost-eliminate meat, dairy, refined grains, and refined sugar. Hmmm.

More soon on my informative trip to the Block Center in Illnois.

Midsummer update

Fri, 18 Jul 2014 15:22:11 +0000

I’ve finished my ninth round of chemo now and it continues to be quite bearable. Maybe the IV Vitamin C and the acupuncture I get every week a day or two after the chemo are doing some good! The anti-osteoporosis shot I get every month laid me a bit low for a few days last week, but in general I’ve been feeling pretty normal, and life has been what I would call normal-ish. When I’m not feeling so hot I find it hard to work or do schoolwork, because I don’t feel like thinking. So I do a lot of reading and sitting around in bed watching Netflix and wondering when I will ever be motivated enough to “get back to work.” And then I am, so I do. Eric and I have been talking about the purpose of this cycle for me.

In a few weeks I’m going to have a consultation at the Block Center for Integrative Cancer Treatment in Skokie, Illinois (next to Chicago). Should be interesting to find out how they would treat me, and if there are pieces I can adopt here (or if there is any way I could get treatment there without having to move). They integrate chemotherapy, nutrition, supplementation, massage, psychotherapy, exercise, and mind-body strategies all in one place and set of care providers.

Hopping without smooth transition from topic to topic, here’s a quote I found on the blog of a mother with metastatic breast cancer, Lisa Bonchek Adams, writing about her three young and early-teen children:

“I just wish I could be there for them to outgrow by choice, by time, by age."

(Ouch.)

Eric has read, and I will read soon, the book Radical Remission by Kelly Turner, Ph.D. It’s an investigation into the cancer patients who get well or live much longer than expected–what did they do, and are there commonalities we can learn from? Perhaps more on that later. For now, time to go see how the kids are doing packing for 3 weeks away at camp!

Things go on, with reminders that there is no certainty...

Wed, 18 Jun 2014 21:54:13 +0000

…at least not about my health. Or rather my Health. Friday before last was one of those days when I had to admit my life is a little bit more complicated than most. It was time for another brain MRI and CT scan (chestabdomenpelvis, as the CT techs say it). The schedule for these is every 12 weeks–that is, every 4 chemo cycles. The March ones showed the tumors shrinking a bit, which in the brain was an expected result of January’s stereotactic radiosurgery, and in the sternum and lung was less expected and quite positive, because even just no more growth would be quite good enough.

The June scans were not as clear-cut as in March. The sternum met might be a millimeter or so bigger, and is “more dense,” whatever that means–my oncologist didn’t know whether that was good or bad. The one in my lung is unchanged. Most of the brain lesions have shrunk away, one is notably smaller than in March, but the biggest one did not shrink and in fact it might be showing more swelling around it, and more activity, than in March. Again by a couple millimeters. The best part of both reports was that they did not show anything new. So overall, they were pretty good. But with some ambiguous bits. The take-home summary was: “good, with two small question marks.”

The brain question mark got us an appointment this week with the neurosurgeon, and the suggestion (from the oncologist) of a follow-up brain MRI in 4 weeks.

Meeting with the neurosurgeon was reassuring overall (though I still can’t shake the image of him as the fast-talking smart jock on the high-school schoolbus). He said he “wasn’t very impressed” by the comparison March-June (this is good) and he would be fine with following up on the original 12-week schedule, or 8 weeks, but certainly not less than that since these things are slow and another ambiguous result would be not worth the hassle. The changes could be just post-radiation reaction. The bigger the original lesion the less likely it is to go away and the more likely it is to just stay the same size overall.

So we got to see some cool MRI images of my brain–thank you, anatomy & physiology classes!–and I’ll have my next brain MRI in early August. Meanwhile we just wait, watch out for symptoms (which I don’t have at all), and wonder whether anything bad is going on. As Augustus says in The Fault in Our Stars, “Apparently, the world is not a wish-granting factory.”

Meanwhile chemo continues to be quite bearable, I’m getting IV Vitamin C, the kids are out of school, the fireflies are amazing at night in the field below our house, and I’m eating ice cream way too often.

Nothin' but an updated picture

Tue, 03 Jun 2014 13:13:49 +0000

Me by the garden in the meadow grasses (watching Eric sift dirt)

Late-May update

Wed, 28 May 2014 13:53:07 +0000

Three weeks between updates seems a little much. However, there is not much new to say–things are going along pretty well, with no spice-rack installation under the bathroom sink as yet. I am in the second week of round 7 of chemo. The afternoon of chemo and the day after, I am tired and feel quite run-down, and I have some gut cramping and indigestion on and off during the 3-week cycle, but it is overall quite tolerable on the lowered dose. I have more hair than before but I can’t tell whether it is just longer, or a greater number of hairs. Maybe 10% of my hairs could survive the starting dose of eribulin, and a 15% can survive the reduced dose? Who knows. Eric says the spots that were bald after brain radiation are coming in darker (my original color) though the rest is much more gray than before.

In any case, it’s gotten mostly too hot to wear anything on my head, so I mostly don’t. When we go out in public, I call it “making the world safe for chemotherapy victims.”

I started getting IV vitamin C every week or so a couple weeks ago. I’m also having acupuncture every week. Honestly I am not seeing dramatic results from either one, but will stick with them for a while.

The summer semester started last week and so I am turning my attention to working on my independent-study project (actually doing the data analysis I planned and researched in my previous two Critical Inquiry classes on research). There are nine new lambs on the land and they are often viewable right out my bedroom window (or back door) because they are pastured just west of our house. Everything is spring green. (except the lambs)

Rx x X where X = cancer patient

Thu, 08 May 2014 20:41:48 +0000

My bottles of partially-used prescriptions are getting out of hand. I think I need one of those spice-bottle spinny caddies to control them.

Or maybe something like this for the back of the bathroom cabinet door…

International Day of the Midwife

Mon, 05 May 2014 12:17:36 +0000

That’s today. If there is a midwife in your life, now’s your chance to appreciate her!

On to less important topics.

I got some eyebrow-makeup advice from an unexpected source recently…yay! Will have to act on that soon now that I am not so mystified.

I now have, below my right collarbone, a port, which once the incisions heal will only be minimally annoying every single day, I hope (while proving very useful for chemo and IV Vitamin C administration). A port is a small reservoir under the skin that is connected to a tube that feeds into a vein. Medications are injected through the skin (as with an IV), into the port and from there into the bloodstream. There’s nothing outside the body (just a lump under the skin). Seatbelts and ports do not like each other. And it makes one pause before putting on a scoop-neck shirt.

The barn swallows are back in our neighborhood, nesting in our eaves as usual. They are super fun. No ewes have had lambs yet, but any week now.

And the semester (of midwifery grad school) is over. All my grad-school friends are on-campus this week learning “birth skills”…I wish I were there. They better ask lots of questions since I am not there to do so!

Good week, and new "hairs"style

Tue, 29 Apr 2014 10:16:39 +0000

I had a nice week “off” of chemo. I didn’t do much in the world of the sick–just made a few appointments and went for one blood draw, and didn’t end up doing any cancer research. I have felt pretty good this whole cycle (the first with the reduced dose of chemo); no queasiness after the first evening, good appetite, more energy than the last few months. I finished a big written project for my Philadelphia University class, putting in a lot more time on it in the couple days before it was due than I thought I would, but it was kind of fun. Geeky fun. I have been managing two walks a day, plus various supplements, drinking green tea and more water, etc. (I made myself a daily chart to help keep track). I did a little teaching about labor and birth for a small group of teenagers last week, which was really fun, though I felt out of practice.

This afternoon I start my 6th cycle of chemo. Meanwhile many people at QIVC (my intentional community) have a stomach bug, including my 15-year-old. It seems like a 24-hour one, though. Cross your fingers. My WBC counts are still in the normal range so I am not any more worried than I would usually be when QIVCers are dropping like flies…

Thursday morning I get a port “installed” (can’t find a better word) below my clavicle. This will allow chemo to be delivered without putting an IV in my arm (that’s getting harder as my arm veins get scarred up by the chemo). I am seriously hoping it will not be as annoying and irritating as my 2006 port, which stuck out way more than some do, and physically bothered me all the time. (The woman from Interventional Radiology*, the dept. at Albany Med that is putting in the port, assured me that since 2006 ports have gotten smaller, and at AMC they actually use pediatric-sized ports for many adults anyway.)

Next week I start another try at weekly acupuncture, with the integrative practice, where the acupuncturists are experienced with cancer/chemo. (Last time, 2006, it was with a general Chinese Traditional Medicine practitioner and I didn’t think it did much for me.) Though I had so few side effects this last cycle that maybe it’s not necessary–as I understand it, acupuncture is for side effects. And I’m working my way towards starting IV Vitamin C as well, which is supposed to do two things–decrease side effects (thus theoretically enabling higher doses of medication) and potentiate the chemotherapy.

*a medical sub-specialty of radiology which utilizes minimally-invasive image-guided procedures to diagnose and treat diseases (thanks, Wikipedia)

**But what is really important? Hair. **

I have ended up with a smattering of hairs still hangin’ in on my head, and growing. This sounds good but actually looked really awful and depressing. So last week Eric buzzed my head. Now that the weather is getting warmer, it is more comfortable to go hat/scarf/wrap-less a bit. We decided to create a new hair look: chemo punk. Here is a picture. (Which I have now spent 8 minutes trying to center..forget it)

I think the few hairs left may eventually go, or I may get tired of the silly look before that, but for now it's the fun I can find to have with it.

Really not sure what to do about the thinning eyebrows, though. No makeup skills.

Thanks, health insurance!

Tue, 15 Apr 2014 18:38:11 +0000

It has always seemed expensive, but this really puts it in perspective.

"If I were a mouse, I'd be cured by now!"

Tue, 15 Apr 2014 18:32:11 +0000

(a button seen today at the oncologist’s office–round 5, dose 2 of chemo)

IV Vitamin C

Thu, 10 Apr 2014 10:16:19 +0000

Here’s the recent (early 2014) study of IV Vitamin C used in a phase I clinical trial…very suggestive that it potentiates at least one kind of chemotherapy, and shows that it reduces chemo side effects. And it’s all about…hydrogen peroxide?

Some, less, and more

Thu, 10 Apr 2014 10:10:03 +0000

This week I started my fifth round of eribulin. I am very tired of wearing head coverings all day. My radiation “crop circles” have not grown back. Maybe they won’t. Or maybe it will take six months. The oracle of the Internet (accounts of other metastatic breast cancer people) is not clear on the subject.

Some: late last week (my week “off” chemo) I started feeling some numbness in my right hand. Then my left hand. Then early this week my right foot, and my shins, and my left foot. It is all superficial–only light touch feels funny. The nerves below the epidermis are working, but the most superficial nerves are damaged. This is a common (50%?) side effect of my and many other chemotherapies: peripheral neuropathy, which can be numbness, tingling, pain, or cold- or heat-sensitivity, or a combination. A little superficial numbness is not too bad. It is not affecting what I can do, or my balance, or anything. It just feels Really Weird.

**Less: **Because of the neuropathy, we reduced the dose of my chemo as of this week. There is a standard dose reduction that is apparently needed for many people who take this drug for a while. It still works with the reduced dose. Of course I asked about the big EMBRACE trial that showed how good this drug is: if 30% or more of the people who took the drug in the trial ended up on a reduced dose, did they look at those patients’ outcomes in comparison to the full-dose patients’ outcomes? You’d think they would have. But I think in real life the course of care and doses of chemo given to patients in the trial were not clearly sub-settable. People switched to the lower dose at different times. People skipped doses or delayed doses due to low white or red blood cell counts (which hasn’t been at all a problem for me). I bet sometime in the future, though, as eribulin becomes used earlier in the metastatic disease process (most people don’t get to try it first like me), there will be a trial of the reduced dose vs. the full dose to see if the reduced dose is just as good. Until then, people who can’t handle the full dose anymore get the reduced dose, and it works as well as it works. My oncologist’s take on it seems to be: as long as it works for some people, it’s worth trying in any one person, so who needs the data from the subgroup? The subgroup analysis won’t tell him whether the lower dose will work for me or not. I guess that makes sense. But if the lower dose didn’t work for anyone, wouldn’t that be important to find out as part of the trial?

I’m also trying to eat less dairy. Very sad.

**More: **To start with the simple, I am drinking at least one cup of very-well-steeped green tea every day. Moving on abruptly to the incredibly complex, I now have more healthcare providers. Last week I began going to the Stram Center for Integrative Medicine in Delmar (next to Albany) because I want to get IV Vitamin C (which they offer) and because I want guidance on nutrition and supplements. I will also most likely try their acupuncture person and see if acupuncture feels more beneficial for me than it did in 2006. My initial meeting involved a health history and the creation of a long list of blood tests that will guide their recommendations. They’re all about inflammation, immune system function, coagulation, vitamin and mineral levels, etc. My oncologist agreed to run a few of these and yesterday my primary-care doctor spent a totally un-American amount of his afternoon with me, working through the remainder of the tests, reviewing the logic of them per Dr. Stram and other sources, and figuring out exactly which ones to order. Now I can just go to the lab and give them a pint of blood, right? Wrong. More homework: I need clarification from the Stram Center about 3 or 4 tests that we couldn’t pin down yesterday. I need to talk to my health-insurance company about what happens when they refuse to cover many of these (they are oddball): do I pay the lab’s list price or the “reasonable and customary” price that the health-insurance company would have paid? And then I need to talk to the lab and get the prices for these tests, because if some of them are hundreds of dollars, I most likely need more discussion of their utility with Dr. Stram before I do them.

Less: calling people “doctor.” He said they use first names so he is Ron.

Less: time to do paying work and schoolwork in the last week…but also, less fatigue on my last week “off” than the cycle before, and the last few days, less queasiness (none so far!) and less feeling generally under the weather and kind of poisoned. Still not feeling great, but not in bed, and it’s only been two days since chemo.

More: At the Stram Center I also met with a nutritionist/dietician with a certification in oncology nutrition. (He comes from the Block Center in Skokie, IL where I would be going if I lived nearer. It is an integrative oncology clinic.) It would be such a luxury to have one set of providers rather than trying to cobble things together…but the reason for the Stram Center is to avoid extreme cobbling. There is my offensive team (oncologist and oncology nurses) and now my defensive team: the integrative practice. (See the link on the right for more info about their cancer services.) The goal of going there–what “defense” means to me right now–is to try to adjust anything in my body that can be adjusted to be less favorable to tumor growth & spread. The lab tests, according to them, will guide them in suggesting adjustments. And also to try to minimize side effects–they have suggestions for fatigue, queasiness, and neuropathy. The IV Vitamin C helps with side effects too. Looks like I have a lot of work to do before I get there, though.

A quick fact-filled update

Mon, 24 Mar 2014 16:45:04 +0000

It’s been a while. Tomorrow is my second dose of round 4 of chemo. Last week I got the good news that the chemo is working–I had a CT scan that showed the two main metastases are slightly smaller than before. I had a brain MRI as well, which as expected showed the zapped brain lesions looking nice and inactive, and happily didn’t show anything new. So I will continue with the eribulin.

Which unfortunately has not been as piece-of-cakey these last two cycles as it was before. I’ve been queasy a lot, and my week “off” at the end of round 3 was a week of non-consensual napping and feeling very, very fatigued. And that was supposed to be my good week. (Just a reminder of the schedule here: I have chemo two weeks in a row, then have a week with no chemo, then start over. So my week “off” starts a week after dose #2 and lasts until I start the next cycle.) The fatigue lifted a few days before I started the new cycle, but I have still been pretty low-energy and have spent many afternoons sitting on my bed working or reading instead of being more active.

In the middle of that week, though, I went to an overnight birth!

I’m reading The Emperor of All Maladies by Siddhartha Mukherjee, which is all about the history of cancer and cancer treatment. It is dense and interesting. And grim. I just got to the discovery of BRCA1.

I am trying to eat well–specifically, avoiding lots of white flour and avoiding white sugar, and drinking green tea, and eating lots of shiitake mushrooms and broccoli! But it is hard to eat well when you feel poorly. Last week I had a lot of meals made up of triscuits and cheese and maybe some almonds. (Triscuits! whole grain!)

We are buying a much larger percentage of organic food these days. All our dairy, almost all our vegetables, even before our CSA begins, and much of our fruit, and more organic staples from the various health food co-ops within reach of us.

And now I am going out for sushi with Eric. Omega 3s. Very important.

Anticancer

Fri, 07 Mar 2014 14:24:22 +0000

I’m reading a very thought-provoking book about what we can do with nutrition and lifestyle changes to help our bodies be less hospitable to cancer cells. It’s called Anticancer: A New Way of Life and the author is David Servan-Schreiber, MD.

Here is our anticancer lunch:

Tofu with turmeric and ginger and black pepper, shiitake mushrooms, broccoli, and brown rice.

Thought for the day (post-chemo, round 3, dose 2)

Tue, 04 Mar 2014 18:14:11 +0000

From Information Is Not Enough: The Place of Statistics in the Doctor-Patient Relationship.

Chemo round 3, dose 1: fine so far

Thu, 27 Feb 2014 14:25:14 +0000

Chemo was Tuesday afternoon after a quick visit with my oncologist. He is impressed that my white and red blood cell counts are holding up so well. But did not inquire as to why. I don’t really know why, but maybe…bone broth with astragalus? Kombucha? The mushroom capsules I took for the month before chemo started?

So far I have been getting chemo via an IV in my wrist that the nurse places every time, but I guess at some point I will have to give in and get a port implanted, like last time (below the collarbone). My arm veins will not last forever if they have to have powerful drugs go through them twice every three weeks. (Veins get scarred by some chemo drugs and then it is hard to get a needle into them. It took over 10 years for my left-arm veins to mostly-recover from the Adriamycin I used in 1995.) In 2006 I got a port. I hated how it stuck out and irritated my skin and rubbed on the seat belt in the car. So I’m trying to put it off this time…thinking I might switch to oral medication before my veins complain and not need a port yet. However, I noticed the other day that the veins in my left arm are more visible than they were before…kind of outlined like an anatomical drawing. I showed this to my oncologist and he said, “Yup, the eribulin makes your veins sclerotic. Just let me know when you want a port!”

Easy for HIM to say.

Maybe I can get them to give me a pediatric-sized port this time. It was really annoying.

In other news, here is another fun-with-headwear photo:

In the early 1990s, I had a beloved long drop-waisted paisley dress from The Limited in nice smooth heavy cotton. The top of that dress has now been liberated from the bottom and is a blouse; the bottom is cut into a swath of fabric and is on my head above. Yay for reuse!

New Orleans

Sat, 22 Feb 2014 16:21:31 +0000

I spent last Saturday through Wednesday in New Orleans visiting my mom with my friend Anne. We went to one Mardi Gras parade (Krewe de Vieux), one party, one jazz club, one magical outdoor restaurant with live music, and one seafood restaurant with char-broiled oysters, and took a trip Uptown and a trip across the lake to get Anne to her oral-history interviewees (she had work-related reason for being in New Orleans…I was just running away from home to be with my mom!). We had delicious post-parade gumbo at Paul’s house after the first of many stop-ins at Cafe Rose Nicaud on Frenchmen Street. Anne & I also took the ferry across the Mississippi to Algiers and back, walked around the French Quarter, visited the Voodoo Museum, and bought a muffaletta (famous Italian sandwich of New Orleans). Other New Orleans items we purchased: po’boys, pralines, and a red Mardi Gras mask with lace and feathers (Anne). We did not patronize any drive-through daiquiri stands.

I got a lesson in New Orleans-style head-wrapping from my mom’s friend Dianne, and a history lesson too! Now when I make a big scarf or a long swath of fabric into a tignon, instead of wearing a boring old bandanna or beanie, I will know I am “quoting” the clever, rebellious free women of color of 18th-century New Orleans.

Thanks, Dianne! (Here is one thing Dianne does…historic tours!)

"When will you be done with chemo?"

Thu, 13 Feb 2014 10:36:17 +0000

People have been asking: “How many rounds of chemo do you have to do?” or “When will you be done with chemo?” There is no solid answer to that question because we don’t know what is going to happen. But here is my understanding of how it sometimes goes:

The standard strategy is to use a chemotherapy as long as it works to either hold the cancer in check or reduce it.
The standard understanding of chemotherapy in metastatic disease is that eventually, the cancer becomes resistant to any chemotherapy, so it eventually stops working. Basically the cancer cells figure out a way around the specific mechanism of damage that the specific chemotherapy creates--different chemo drugs have different methods of action.
Sometimes people quit a chemotherapy that is still working because the side effects get too bad.
If (or when eventually) a chemotherapy and it is *not* working (the disease progresses, shown in follow-up scans or tests), then you try a different one.
Repeat, repeat, repeat. Standard understanding is that you get the best/longest responses to the first one or two therapies tried; the further along you are in the chain of chemotherapy treatments, the shorter the time it will work. This is not 100% true because some chemo drugs are just the right thing for a person's cancer situation; and experimental drugs may be used later in treatment and be better than standard drugs; etc. So you never know.
The current evidence shows that trying even seven or eight different chemos may be worthwhile.
Eventually, in standard medical care, patients decide that more chemo is not worth the side effects, because it will most likely not extend survival time; then the focus shifts to palliative care (treating pain and other symptoms of the cancer) rather than trying to stop the cancer. Palliative care is an important specialty in medicine that apparently cancer patients do not access soon enough. Palliative care is not just pain medication--it can include things like radiation of bone metastases that are causing pain or limiting function.

So my answer to "When will you be done with chemo?" is sometimes "Never, I hope!" Because if something's working, without bad side effects, why would I stop?

I think in cases where people’s cancer just goes away, and they are “NED” (no evidence of disease), they sometimes stop chemo. Also, people take breaks from chemo (for holidays, or trips, or just to recover from side effects).

But there are also people who ditch standard medical treatment–often when it stops working well for them–and try alternative or complementary treatments or integrative treatment strategies (standard plus complementary treatments). Which I have been looking into, for sure, because standard chemotherapy in the end doesn’t have that much to offer.

Chemo round 2, dose 2: thankfully easy

Thu, 13 Feb 2014 10:32:42 +0000

Chemo Tuesday afternoon was fine–and since it has been a month, I got the Xgeva shot too. That’s an anti-osteoporosis treatment that has been found to be useful in slowing the progress of bone metastases. Even though I only have one bone met, it seems worth it. The side effects are “flu-like symptoms for 1-2 days” but I just felt a little achy the next morning.

We waved at my oncologist on the way out–he has an office on the main hall–and he called us in to talk about the study on intravenous Vitamin C that I recently sent him, and see how I was doing.

My favorite chemo(-hair) hat

Mon, 10 Feb 2014 20:06:06 +0000

(That’s chemo multiplied by negative hair)

It’s soft & stretchy and has a nice shape on a head missing most of the hair. I have two! Yay!

narcissistic hair post...

Wed, 05 Feb 2014 11:39:44 +0000

Last week the hair started to come out gradually and look a bit scruffy…

Now it is at least half gone and coming out much faster.

Adding hair-loss data to the breast-cancer world, the falling out started on day 15 of my first cycle of Eribulin. (First-line Eribulin for MBC but previous Adriamycin and Taxotere for primary cancers years ago.)

Attitude

Tue, 04 Feb 2014 08:12:34 +0000

Chemo round 2 starts tomorrow AM

Mon, 03 Feb 2014 23:36:02 +0000

This has been the main question people have been asking. So Round 2 of chemo starts tomorrow, continues next Tuesday, and then the week after that is my “week off” from chemo. Then the next week, Round 3 starts. Round 1 did not make me feel too bad, so I am not worried about Round 2.

In general I feel really good. I am still “tapering” off the post-brain-zapping steroids (there to prevent brain swelling), but am down to a low enough dose that I can SLEEP well, thankfully. That was a bit annoying.

The hard thing to deal with right now is that my hair is falling out (from the chemo) with increasing speed and enthusiasm, starting 10 days ago. I made it home from our trip with hair but the amount on my head is looking less and less respectable! Soon I will give up and make it all go away. I have LOTS of nice hats so my head will be warm. Maybe I will get a tattoo.

Speaking of tattoos:

Chronomodulated chemotherapy

Mon, 03 Feb 2014 23:20:51 +0000

This is a method of administering chemotherapy at certain times in the person’s circadian rhythm cycle so that the action of the chemotherapy is increased and the side effects are decreased. Not all drugs have been studied to determine their optimal administration time, but a lot have.

Here is a link to a review article from 2010 that explains (and shows the studies that had been done by that time).

And a consumer-oriented article explaining it far more simply!

Grand Canyon--wow!

Mon, 03 Feb 2014 23:13:12 +0000

Finally, a brief report on our emergency family adventure trip to the bottom of the Grand Canyon. We were gone for 6 days. We spent Saturday night on the rim of the Canyon, descended (2 by mule, 2 by hiking) on Sunday, spent two nights at Phantom Ranch in Bright Angel Canyon at the bottom, and came back up on Tuesday. We spent a luxurious second night on the rim and half of Wednesday in the park before we finally drove off for a brief but fun family visit in Prescott on our way to Phoenix (and our Thursday AM plane home).

It was all really, really fun and a thorough getaway in feel. The canyon is beautiful, of course, and even more astonishingly so when you are IN it rather than just looking into it. We all had fun, and it was interesting to be together and apart in different family configurations throughout the four middle days of the trip.

Because it was a way to get housing at Phantom Ranch, Will (15) and I signed on for the mule trip down and up; Eric and Jess hiked. Jess (12) was a great hiker…7.5 miles down on Sunday and 10 miles up on Tuesday. Will and I enjoyed our mules and the feeling of riding on a sure-footed animal on narrow precipitous trails. The mule-train guides were friendly and we saw a lot on the way down and back (but no longhorn sheep).

I think I could have hiked, because my radiation fatigue went away on Saturday! but I suspect the hike out of the canyon would have pretty much worn me out. On Wednesday Eric, Will, and I went down the Bright Angel trail 1.25 miles in search of petroglyphs, and then up again of course…so I got a little vertical hiking in. (I hiked down and up in 1993 too.)

Will & me on the mule ride up (on BB and Charlotte the mules)

Chemo (round 1, week 2)

Thu, 23 Jan 2014 09:00:33 +0000

It went fine on Monday. I felt less much queasy the days afterward–maybe it was not getting the bone-loss medicine this time (that’s only once a month) or maybe it was my body realizing the second time around that it would not be poisoned, or maybe it was the anti-emetic med I asked to take for 3 days at home. I took it half the time.

I am working on a meditation for getting the Eribulin, visualizing it traveling into my bloodstream and from there to all the cancer sites it needs to convince to stop growing. Thank goodness for all those Anatomy & Physiology classes! I send the little Eribulin molecules to my sternum, the inframammary lymph nodes just to the left to my sternum, the interpectoral nodes behind my left breast and the “suspicious” node above my left collarbone…then back to the heart, up to the brain to visit the zapped mets up there, then back and over to the lung nodule, then back, then to perfuse my whole healthy liver to make any tiny micrometastases that are underway wink out. I imagine the tumor cells as little electric-spark-like things that are extinguished into dark calmness by the action of the Eribulin.

Since Monday’s chemo I have been actively practicing my new spiritual practice, “butt-on-sofa.” This means gathering everything I need for a while, then SITTING DOWN and not getting up every 15 minutes to do things. It means when I need to visit the bathroom from the sofa, I: visit the bathroom and come back. I don’t return a few things to their places on the way to the bathroom, do a bit of sink-wiping in the bathroom, check on the firewood supply, take some stuff to the kitchen, do a few dishes, and put a few things upstairs before coming back. It takes attention from me to do this, kind of like meditation does. I guess it’s the same element of putting more attention on one’s actions/thoughts than before, consciously, to achieve a different state (in this case, more physical rest to adapt to fatigue).

My brain is not so tired now that I am easing off the anti-seizure meds that were making me goony for the week after radiosurgery. Which is nice. But I still have body fatigue, and I don’t know whether that is the result of chemo or still lingering from radiosurgery. I guess this will all settle out as the weeks go on.

The e-mail update no one wants to send or receive (from 12/13)

Thu, 23 Jan 2014 07:32:28 +0000

*(I finally sent this out December 10, after 3 weeks of working through what was going on. Maybe it will serve here as background for anyone I didn’t include but should have, who has now found the blog.) *

Dear friends near and far and old and new,

Some of you have known me since before my second round of breast cancer and some of you have not, but I think all of you know that it is part of my history and what makes me who I am. I’ve had frequent follow-up and annual mammograms and MRIs since 2006 as I went about the business of living my life, raising my kids, and becoming a midwife. Now things have gotten sad and complicated. The annual MRI that I had in mid-November showed a mass in my sternum, lymph nodes enlarged nearby, and some suspicious spots on the left side of my chest. Nothing had ever been seen on my MRIs before, including 12 months ago.

So I had a followup PET scan the week before Thanksgiving, a breast ultrasound that showed nothing, and a long wait for the scan results, which turned out pretty bad, but they could be worse. The short version is, the PET scan confirmed all of the above, plus showed a suspicious nodule in one lung. (“You can stop now, really” I said to my oncologist as he kept listing the findings one after the other.)

A week ago I had a bone biopsy on my sternum which confirmed that the mass is cancer, and this morning we had appointment with my oncologist to discuss it all. No treatment decisions have been made yet, but I am signing up for some version of chemotherapy, possibly in Boston at Dana-Farber as part of a clinical trial of a new and promising class of drugs–so traveling to Boston or Albany for IVs and feeling icky numerous days per month for the foreseeable future. The feeling icky is maybe the thing that has me the most pissed off, besides the greatly enhanced likelihood of having to deal with dying, and being taken away from people who need me, far sooner than I bargained for.

Of course this is going to have quick repercussions in all parts of my life, starting with graduate school (I’m just finishing up my 4th of 7 full-time distance semesters in the Certified Midwife pathway at Philadelphia University’s Midwifery Institute). Since treating cancer is, in my experience, like a really rotten half-time job, and I am already stretched to the limit with school, family, programming work, a few births, my volunteer work with the Midwives Alliance of North America, being part of the Quaker Intentional Village-Canaan, etc., I am taking a leave of absence next semester (I might take just one course, the research one). We’ll see what I decide to do after that–no need to know right now. It will depend.

I’m not sure how much energy and focus I will have for birth work, programming, and volunteering in the near future; that will also depend.

And that’s where I am abiding right now–in a space where everything depends. Will I be home Friday afternoon so Jess can have a friend over? Well, I think so, but if my doctor calls and tells me I have an appointment at Dana-Farber, then I won’t. Am I starting chemo week after next? Don’t know. If so, should I schedule meetings and calls? Don’t know. How will I feel in January? I have no idea. Am I going to New Orleans in two weeks to visit my mom for the holidays? I certainly hope so.

What I do know is that I am keeping on trying to live my life, be a mom, be a midwife. (Also finish the darn semester!) I have a great family, a fabulous husband, a community around me, and good and strong friends, plus health insurance, and a medical team I trust. This totally sucks, but it is also who I am now, instantly, with one phone call from my surgeon on November 15, and I don’t get a choice about that–just about how to go forward with it from here.

I wanted you all to know. Forgive me for not being able to tell you all individually; telling people, kind of out of the blue, has been a really hard part of this for me.

Ellen

P.S. People want to know what they can do, and there is one concrete request I’ll make. There have been two people I know who have lived for years with metastatic cancer. One I can still talk to and get advice and “anticipatory guidance” from; one I can’t. If you have someone in your life who has been through something like this and who might be willing to share a bit of his/her experience with me, I would find that helpful, maybe hopeful. Thanks.

what a nice weekend

Sun, 19 Jan 2014 21:37:49 +0000

I took it pretty easy Thursday and Friday, for me, and Saturday we had wonderful friends visiting overnight. I was tired & a bit loopy from the anti-seizure medication I’m on (standard prophylactic post-procedure stuff, along with steroids), but greatly enjoyed myself. This afternoon I took a walk and gradually edged myself into bed where I have been using my brain but resting my body ever since.

The people who are living with metastatic cancer are showing up for me–through personal connections with some of you, thank you!, and just by the power of the web (and those of you helpfully pointing me to where I need to look). It has been really good to be able to people the landscape in front of me with the existence of these folks, even if I don’t know them, even if I don’t ever call them in the end.

What next week offers: chemo tomorrow AM, a final postpartum visit with a recent client Tuesday, a follow-up appointment with the radiation oncologist Thursday, and PACKING! for the Grand Canyon emergency family adventure trip that starts Saturday AM (and brings us home Thursday the 30th).

Zapped!

Thu, 16 Jan 2014 20:43:15 +0000

Yesterday was the full moon and my brain-zapping afternoon.

The first half of the procedure, these were my breath mantras:

“goodbye, brain mets” or “goodbye, cancer” on the in-breaths

“thanks for not causing me problems” is what I was thinking on the out-breaths

The second half, I changed them to:

“glowing radiant cleansing cleansing light” that was what I was thinking on the in-breaths

“degrade gracefully, tumors” or “degrade gracefully, you confused messed-up cells” is what I was thinking on the out-breaths (that’s a software term about how to build features so that if they fail, they don’t mess too much else up)

I had to take a break after the first LONG set of zaps and the next set. (FIrst long set was for the 5th brain met they just saw yesterday on the more detailed MRI…the one in the cerebellum but very close to the medulla). That was the deepest one and closest to something important and thus the most complicated treatment to execute–12 zaps and they were from many angles, so lots of time in between zaps to move the table to different angles and/or move the zap machine. (Zaps themselves were maybe 15-20 seconds each.)

The doctor said there is maybe a 1% chance of some kind of damage/side effect from the radiation delivered to that met, because of its proximity to the medulla, which is important. It would be a motor-control kind of complication, he thinks, but he also said “I would tell you it was one in a million but that would not give you any information”; he was very confident that they had done the best they could to minimize the collateral radiation dose to anything but the tumor and that there would not be a problem. He said he consulted with some other radiation oncologists across the country and they recommended that it would be safe to use even more radiation without more risk of side effects. But he stuck with a lower dose that he thinks will be enough, and safest. He showed us the beam plans (there were 56 different beams) and how they targeted the tumors and how the radiation dose fell off outside the tumors. Interesting stuff. So anyway. After talking to him for a while and looking at scan pictures, we waited & waited because they had to correct something in the machine, so the procedure started 90 minutes after they thought. I think my Xanax was mostly used up during this waiting time!

Eventually it was time to start so I got on the table, got the mask snapped down, and they did all the measurements to make sure the mask and I were in the exact right place to the milimeter. To do this they put some kind of frame or hood on top of the mask, then stuck rods through channels in the frame to touch certain points on the mask, reading off the distances to see if they matched the distances they recorded the day they tested the mask. I had to wiggle a bit to make them match at first. The mask is attached to stanchions that are attached to the table and everything is minutely adjustable in all dimensions…they kept putting a bubble-level on my forehead too! After each series of zaps they had to re-check the leveling and stuff, but not the rod measurements.

So after first long set and the 2nd set it was about half done. And by then the back of my head, my scalp, was burning burning burning with hot-sauce-in-the-eye-like pain due to my head resting on the plastic mesh of the head hammock and not being able to move one little bit. The pain didn’t start for about 15 minutes, but then got worse and worse. Also the Xanax wore off during the first long set of zaps–I was nice & woozy at first when they were doing all the measuring and set-up, and had little dozing dreams, but then rose RIGHT to the surface eventually.

It was hard not to move my pelvis and my legs but I wiggled my feet a bit and shifted my hands around so that was bearable. And I kept relaxing my shoulders. The mask really wasn’t that bad at all, just made me a bit wiggy eventually. It was the scalp burning that was so bad, and I had to let my head relax “into” it for all the zaps rather than tensing up.

So I asked for a break and got to get up, rub my scalp, weep a bit, go pee, and take another Xanax and a pain med to try to make the scalp pain less, and hang with Eric for 10 minutes. After that I was ready to get it all over with.

So back on the table, head in the hammock, knees resting on the wedge PLUS the (ancient) sofa cushion we had brought from our reading nook to give my legs a bit more elevation to save my lower back (it worked, and the cushion is from sofas my dad had custom-made for his house in 1973, so there was a little dad in there with me). Snap on the face mask, adjust by wiggling, then they did the measurements again with the little rods and we were off on the second half–three sets of zaps. Mets numbers 3, 4, and 5. For 10 minutes, blessedly no scalp pain, but then it started again. And got just as bad, but I knew there was less time to endure it now. The Xanax worked for about 30 minutes; I could tell because I didn’t need to move my feet or hands at all then. I saw that Xanax is made less potent by steroids, and boy was I dosed up with steroids for the procedure. So that was probably part of why. I was also reminded, though, of the “elephant-sized dose” of Valium I needed when I had my wisdom teeth out during college, and the time I snapped myself right out of marijuana goofiness when trying to treat nausea in 2006 (I didn’t like the combination of the dumb smile on my face and the fact that I wasn’t feeling a bit happy, and with what seemed like an actual snap, back to brain normality).

I did my breathing mantras whenever the zaps happened, and listened to the music I was allowed to bring, and wished it would be over soon.

After set #3, they came in and said the next two would only take about as long as that one had. Yay!

After set #4, they said the last one would be quickest because it was 10 zaps and 7 of them were with the table in the very same position. Yay! I was getting pretty much to the end of my rope at this point with the scalp pain. I started counting them, but realized i didn’t need to (and could focus on “Telegraph Road,” a 14-minute wonderful song by Dire Straits) because when the table moved I would know I had 3 left. Each of the last 3 had a different table position and then we were DONE!

And they came and took off the mask and I could lift my head and in a bit sit up. Oh what a huge relief. And then walk back to Eric in the private waiting room. Hallelujah. The nice nurse Joanne offered me a wheelchair to get there but I said only if she rode in it and I pushed. She said “No thanks, I’ll just go remove the evidence now!”

We got our stuff together, went over the meds schedule, made an appointment for next Thursday, and left. I had awesome sushi in the car bought for me by Eric (no lunch). I had my pillow and my huge purple scarf my mom gave me and I had a little cry and now I am tucked up in bed.

So, a good day?!?!?

zapping day!

Wed, 15 Jan 2014 11:15:32 +0000

Today is the day for stereotactic radiosurgery at Albany Medical Center. I am loaded up with anti-seizure medication and steroids, and will get more steroids and Xanax before I get my head nestled into the “head hammock” (nicer than calling it the rigid-plastic-mesh face cage) for my 2+ hrs of radiation beams. I have to lie still that whole time, but the head hammock will keep my head still for me.

The “head hammock” made of rigid plastic, attached to the table: <img src="/blog/images/headhammock1.jpg" alt=“The “head hammock” made of rigid plastic, attached to the table” title=“headhammock” class=“size-medium wp-image-169” />

When it was made it was flexible while warm and they molded it onto my face:

This was a cool picture Eric took:

That was made on Friday after I had chemo Friday AM. The chemo was easy–an IV, a 5-minute “push” of the Eribulin, some anti-nausea medication which worked well on Friday, plus for good measure, a shot in the shoulder for the bone medicine Xgeva.

Over the weekend and on Monday I was queasy for most of the days, but it wasn’t too bad. Ginger ale was the thing that helped the most. Next time I will ask for some Kytril (anti-nausea med) to bring home. Friday I was just strangely hungry! We went out for Thai food for lunch before we left Albany, after the set-up stuff we had to do with radiation oncology. (Check the mask, take measurements, do a CT scan, do an MRI).

So chemo is over with until the 20th and now it’s just the zapping ahead. Which I have to get in the car and go toward right now! My friend Isa said: “I love that, by about 3pm today, you’ll have a shiny, well, healthy and happy brain.” I am holding that intention close!

post-chemo Buddhist reminder

Tue, 14 Jan 2014 13:08:13 +0000

I had an IV in my left wrist for chemo on Friday. I had to move my watch, which I check way too often, to my right wrist. So I decided I needed a little reminder for my left wrist:

Chemo starts tomorrow (Friday)

Thu, 09 Jan 2014 23:13:09 +0000

At our appointment with the oncologist this morning, we put our heads together and juggled the brain-zapping procedure (1/15), chemo on days 1 and 8 of a 21-day cycle, and our planned last-minute trip to the bottom of the Grand Canyon (1/25-1/30 if it all works out). Stir in some anxiety on everyone’s part about the 8 weeks that have elapsed since the MRI that showed metastasis–8 weeks without any chemo treatment yet–and you get an audacious plan: start chemo tomorrow, brain-zap next week, continue chemo a couple days late on the 20th, go adventuring, and return for more chemo the first week of February (and the second, and fourth…repeat as long as it works).

After that plan was made, we stopped in at radiation oncology to see what was up with my set-up appointments, and they had just called to tell us to come in tomorrow. But there we were, so we got started today with a little face-and-head-mask-making. Pictures to come. I know you have all always wondered about the science-fiction-like details of stereotactic radiosurgery.

Eribulin (Halaven)

Tue, 07 Jan 2014 09:00:32 +0000

Wikipedia says: “eribulin is a fully synthetic macrocyclic ketone analogue of the marine sponge natural product halichondrin B, the latter being a potent naturally-occurring mitotic inhibitor with a unique mechanism of action found in the Halichondria genus of sponges. Eribulin is a mechanistically-unique inhibitor of microtubule dynamics, binding predominantly to a small number of high affinity sites at the plus ends of existing microtubules. Eribulin exerts its anticancer effects by triggering apoptosis of cancer cells following prolonged and irreversible mitotic blockade.”

what's going on this week: waiting

Tue, 07 Jan 2014 08:40:27 +0000

Last Thursday & Friday we met with the neurosurgeon and the radiation oncologist (at Albany Medical Center) to find out more about my brain situation and plan my stereotactic radiosurgery. It really does look like an ideal treatment for relatively small brain metastases (such as mine). I am the type of patient for whom this treatment is often done, and it is often done at Albany Med. Unfortunately this means that they are very busy and I will have to wait until mid-month or the second half of the month to get zapped.

Sharsheret

Sat, 04 Jan 2014 22:33:55 +0000

I am learning a bit about this organization Sharsheret and was really happy to watch this video interview of the founder…and note the date it was done: December 2010.

Best practices in cancer treatment, 2012 & 2013

Tue, 31 Dec 2013 14:16:54 +0000

ASCO (American Society for Clinical Oncology) top 5 evidence-based recommendations for 2013. Two are very relevant for me, one less so, two not relevant.

ASCO’s 2012 top 5 list. Two might sometime apply to me, two others are about earlier stages of breast cancer. An excerpt, from the one about when to stop chemotherapy:

Smith and Hillner¹⁵ suggested the simple rule that patients must be well enough to walk unaided into the clinic to receive chemotherapy. When oncology practitioners receive direct feedback about overuse and misuse of chemotherapy in the end-of-life setting, they quickly improve practice, with chemotherapy in the last 14 days of life falling from 50% to less than 20% in one quarter.³⁵ Stopping anticancer treatment should always be accompanied by appropriate palliative and supportive care and referral to hospice, and the best practice would be continuation of palliative care started concurrently at the time of diagnosis for “any patient with metastatic cancer and/or high symptom burden.”

Interesting that so much of these latest recommendations center around breast cancer rather than other cancers. (Lung & prostate are also mentioned often, but not much else.) Reasons might include: so many people have it; it's so often curable; treatment options are changing fast due to new drugs and lots of trials; high consumer pressure to improve treatment side-effects & efficacy (the effect of having mostly healthy patients, as in birth); more backward than other realms of cancer care?

Untitled

Tue, 31 Dec 2013 12:54:08 +0000

I am having great fun watching these music-video parodies, which are knowledge translation about evidence-based medicine:

http://therapeuticseducation.org/videos

(Originally seen via Lamaze’s Science & Sensibility blog)

I “should” be working on my delayed paper for last semester’s Critical Inquiry class, which I am looking forward to digging into, but there is so much else to do right now that–imagine that–I haven’t done so yet. I still don’t know when my appointment is, with the Albany Med Neurosurgical dept. and the interventive radiologist, to discuss, plan, and schedule the brain treatment. Weird…the more serious it is, the less likely you are to have an appointment? If I needed a wart removed I would surely have an appointment.

cancer irony

Sat, 28 Dec 2013 16:02:32 +0000

So far I have only had the kind of cancer in which it’s the treatment that makes you feel so sick and unhealthy, not the cancer. I guess this makes me lucky.

However, it is kind of a weird situation to grapple with mentally. You are walking around harboring a deadly disease and you feel fine, you look fine, and you are not fine*. Then chemo makes you tired, sick or sickish, prone to catching whatever’s going around, and possibly bald. Plus a varied bouquet of other side effects depending on the chemo. And so you feel sick for sure. But it’s the medicine that’s doing it to you. Bizarre.

"Plan? PLAN???!??!?!???? Mwaahhhhahhhhahhhhahhhhh" --cancer

Fri, 27 Dec 2013 18:52:42 +0000

Last Friday, a week ago, I got home at 5 after the CT scan, bone scan, and signing up for the trial, went for a walk, and my phone rang at 5:39 with a call from "RESTRICTED." It was my oncologist calling from home to say that the CT scan showed spots in my brain. He hadn't seen the CT scan, just gotten told about it from the MD on call. He told me we had to go get an MRI ASAP via the emergency room to make sure there was not dangerous swelling and to see if I needed steroids or anti-seizure meds. Yikes.

So we went to the ER that evening. Got there at 7:15, eventually got neurologically checked out by the ER resident and the attending, and met the neurology resident. He said of the CT scan, "I saw the two spots, but I am not impressed" which made me laugh. Many nice people at the ER. Much slowness. I kept having to remind myself, when I felt panicky "what am I DOING here?" feelings, that I was only in the ER because that was the way to get an after-hours MRI. There was no emergency. I was not emergent at all, really.

I got the MRI starting at around 10:30 (Eric got to be in the MRI room, with earplugs and ear protectors and everything). The MRI folks were nice too. An hour of NOT MOVING MY HEAD got pretty difficult in the end due to a fold in the sheet covering the headrest, or something…slight discomfort because weird ledge-like feeling became a BAR OF FIRE because I wasn't allowed to move.

Then we waited another long long time for the neurology resident to read the MRI and talk to the attending neurologist, Dr. Kenning, who was at home. This was when I started to feel a bit like an animal in the zoo pacing around my cage.

So I seem to have two brain mets that are so far not causing any real symptoms anyone was impressed with. I said my eyes had been kinda blurry all day until evening, I said I had a headache but not a big one and wouldn't you if you'd spent all day at AMC getting injected and scanned and then come to the ER? None of that really worried anybody (although vision changes are an effect of brain edema). There were many tests to assess my neurological intact-ness, meanwhile Eric and I are programming a new feature to MANA Stats on his computer or I am reading the New Yorker or we are playing this really tricky videogame. Finally the resident reported that it looked the same on the MRI, 2 lesions, minimal swelling, and since I was showing no signs of any problems and was "neurologically intact" (*New Yorker* reading, check; programming, check; and the game was a real brain-twister) did I want to go home and come to see the neurologists on Tuesday? Well yes indeed I did. No steroids? No, no need for steroids. We left at 1:45 am.

So this is additional bad news for sure. However, it ended up not messing with our trip--although from Friday night to Sunday evening we figured we weren't going to New Orleans after all, due to having to see the neurosurgeon. However, he called Sunday and said that we should go, that he would start setting things up the week I am back, that we wouldn't lose any time in the treatment plan if I just came in a week later since it was Christmas week etc. Great! So unexpectedly, we went, and I am currently sitting in my mom's living room in her newly-acquired house in the Marigny neighborhood of New Orleans, having just walked all over the French Quarter with Eric. The only trade-off was having to take low-dose steroids just in case of swelling while I am gone. He said if he had actually *seen* me then maybe he would feel comfortable without me taking anything, but under the circumstances...

Next week we'll meet with the neurologist and the radiation oncologist and they will have figured out whether they can treat the mets with stereotactic radiosurgery (http://www.nlm.nih.gov/medlineplus/ency/article/007274.htm or http://www.abta.org/care-treatment/treatments/stereotactic-radiosurgery/) or with regular surgery. Whole-brain radiation, which scares the crap out of me, is not used unless those other two won't work. The mets are in the left motor cortex and the cerebellum and the neurologist said they look, so far, reachable by radiosurgery. So that's…good? Because of where they are, I am now on the lookout for right-side movement problems or weakness (none) and problems with balance & coordination & walking (none). Also worse headaches than I have occasionally been having, and worse vision problems.

When the mets are "stable" then I will be eligible for a trial again…until then, I'm not. So that's another piece of immediate badness. And at the big-picture level, it makes my prognosis worse. Hard to treat the brain.

Moral: *Never* answer a call from an unrecognized phone number if you have advanced cancer!

PARP inhibitors

Fri, 20 Dec 2013 13:02:24 +0000

A bit on this new class of cancer drug, gathered from around the Internet & from talking to oncologists.

“Poly ADP-ribose polymerase, or PARP, plays a key role in DNA repair by detecting and initiating repair if a DNA strand breaks. PARP inhibitors inhibit DNA repair in cancer cells, so cells deficient in other DNA repair pathways, such as those seen with BRCA mutations, can be sensitive to PARP inhibitors eventually leading to cell death."

From the BMN-673 trial description:

"BMN-673 has been proven to be highly active in mouse models of human cancer and also appears to be more selectively cytotoxic with a longer half-life and better bioavailability as compared to other compounds in development."

"The poly ADP-ribose polymerase, or PARP, enzymes play a key role in DNA repair by detecting and initiating repair if a DNA strand breaks. Laboratory experiments have shown that, in tumor tissues with certain types of pre-existing DNA repair abnormalities, such as mutations in the BRCA1 and BRCA2 genes, inhibiting PARP enzymes results in greater cell death than in normal tissues. We are evaluating cancer patients whose malignancies have BRCA1 and BRCA2 mutations or other DNA repair deficiencies to determine whether their tumors are sensitive to PARP inhibition."

Judy Garber said 20% of BRCA1 carriers do not seem to benefit from treatment with PARP inhibitors--their tumors have somehow mutated their way back to an active BRCA1 gene and thus don't depend so much on the PARP pathway to fix DNA mistakes when replicating.

She also said as a class, the PARP inhibitors are more the same than different, so if one doesn't work, it doesn't make sense to try another one.

the plan so far

Fri, 20 Dec 2013 12:57:34 +0000

Dateline: Albany Medical Center Imaging Center

One of the hard parts of this is how little certainty there is, at all levels big and small. The most obvious uncertainty is about how many more years I get and how I will get to live them. Then there’s the more immediate: after a consultation with Judy Garber at Dana-Farber on Tuesday, and a long meeting with my oncologist at Albany Medical Center/NY Oncology Hematology on Wednesday, we still don’t know which treatment I’m going to be starting.

persephone

Fri, 13 Dec 2013 23:28:17 +0000

Here we are again. I really never thought I’d bring this blog back to life but it is going to be the way I keep everyone up to date on my latest adventures with breast cancer. And, if last time is any guide, it might be where I collect resources and information, share pictures, and post the odd thought on being in this odd position.

Having an invisible illness, especially one that doesn’t even have any symptoms at the moment, makes you an outsider in the regular world as well as an unfortunate insider in the world of the hospital or the world of oncologists. It is a deeply odd feeling to be looking through cancer-drug trials on clinicaltrials.gov to see if I qualify for a particular trial or not; when I do, I think, Yay!, and then immediately think, why are you happy that you fit the profile of someone who would need to enter a drug trial for metastatic breast cancer? (Well…consider the alternative.)

2013 & ONWARD

Fri, 13 Dec 2013 23:09:38 +0000

I’ll put background and extra info here that I think might be of interest.

2006-2007 UPDATES

Fri, 13 Dec 2013 23:04:06 +0000

Old e-mail updates from last time, perhaps of use or interest to someone only reading this blog long after 2006-2007

deported

Fri, 26 Jan 2007 23:39:17 +0000

That’s what my surgeon said to me Tuesday afternoon as I got myself comfortable on the operating table at Albany Med’s somewhat sketchy-seeming “South Clinical Campus.” “Ready to be deported?” It took me a second. She was about the take out my port. I was ready.

It was truly weird to be fully conscious and lying there with a drape in between me and my right collarbone area while Dr. P. bustled around, injected some seriously burning lidocaine, and started pulling stuff out of me. First the catheter that went from the port into the subclavian vein, then through that vein to the superior vena cava near my heart. That was easy to remove. She sewed up the “track” the catheter made with a stitch or two and apparently that was enough to both close the hole in the vein and keep a hematoma from forming. (I know all this because I asked lots of questions. I asked lots of questions because it was far too weird to be lying there talking about something ELSE while this was going on. I tried that when the nurse asked me about being a doula, and it felt weirder and weirder to try to be two people at once: one being operated upon and one having a totally separate conversation. My hold on calm reality started to loosen.)

a small announcement

Wed, 17 Jan 2007 21:46:16 +0000

I’m done.

With the whole slash/poison/burn series of treatments for this summer’s breast cancer, at least. Today was my last zap. We keep getting asked “So now how do they know if it worked?” or “Test results coming back okay?” and we keep explaining that they–we–don’t know. That there are no test results. That all of this (beyond surgery) was Just In Case. That the jury’s out for oh, the next 5 or 10 years…ask us then and we’ll have an answer.

an interesting take

Wed, 17 Jan 2007 21:30:12 +0000

I have been following the story of an NPR reporter who has cancer (he has a blog). I found this posting of his pretty on-target.

it's all about hair, isn't it?

Wed, 10 Jan 2007 16:20:37 +0000

That’s because when it comes to cancer, hair is the marker of sickness and wellness.

I admit it...

Wed, 10 Jan 2007 16:12:31 +0000

…I am still here.

Radiation every weekday 25 minutes away is a good excuse for not doing much else on the cancer-patient front. But I have done some else: a visit to the gynecologic oncologist to talk about ovaries, follow-up with the surgeon, a date to go back to the OR to get my port removed (1/23), and lots of reading. My lifetime risk of ovarian cancer is around 44%. This is of a cancer that is only caught at a curable state 25% of the time. Makes one think.

my hair is starting to grow...

Sat, 16 Dec 2006 00:41:58 +0000

…and I am finding myself a little annoyed at how my head is turning this funny dark color.

Zzzzap! (repeat 33 times)

Wed, 06 Dec 2006 20:43:18 +0000

I’m four treatments into radiation, which is daily, at 10:30 AM at Berkshire Medical Center. On the efficient days, I walk in, say hi to the techs, change, go into the zapper room and lie down, they position me, they put in the beam-benders and beam-blockers and leave the room and zap me. Then return, adjust the machinery, put in the second set of -benders and -blockers, and zap me again. Each zap is about 30 seconds. During which time the bright lights in the room go on, a red light on the ceiling that looks like a police-car light goes on, a buzzing noise fills the air, and silently and undetectably the machine beams radiation through my left breast. I lie there counting my breaths and trying to figure out how to visualize something positive about this instead of thinking of the Russian ex-spy who just died of radiation poisoning in London. Wish me luck.

catching up

Wed, 06 Dec 2006 20:34:33 +0000

Okay, okay, so I’ve been trying to pretend life is it’s old boring self and haven’t had any blog-worthy thoughts in a while. Here’s something I didn’t ever relate, though: during my second chemo treatment, Eric led me through a visualization of the chemo drugs as light filling my body and shining all through it. For the next two weeks, although I didn’t feel so hot, people kept telling me I looked “luminous” or “glowing.” What’s up with THAT?

fourth chemo (out of four)

Thu, 16 Nov 2006 16:38:39 +0000

Sounds great but today, day 3, I feel rotten. So I don’t feel done with anything yet. Although the chemo nurses blew soap bubbles at me when I was ready to go on Tuesday:

Tuesday evening I felt like I had been hit all over with a sandbag (pressure evenly distributed). Yesterday my mind was sharp but I was very tired (not sleepy, body tired) and spent the day in bed as much as possible. Today my mind is fuzzier and I am still tired. Queasiness held off a bit until today, which was nice. It’s not too bad, and my flu-head (chemo headache from the Cytoxan) is worse than last time but no worse than the first two times.

hiding and covering

Tue, 07 Nov 2006 12:00:39 +0000

I realized on Sunday that what I’m doing with all these hats and bandannas is covering my head. It feels like covering. What I was doing in 1995 was hiding my head. No one else can probably tell the difference, the times I’m covering my head at least, but I can. What a relief.

balancing

Tue, 07 Nov 2006 11:59:04 +0000

There are two ways to go with the work/chemo juggling: you can go full-out, plan to live your Whole Life and make adjustments as needed as you go along–this will keep you feeling safe and normal as much as possible but will be hard work and things will go by the wayside unexpectedly (perhaps just the laundry, the dust in the corners, and the quality of lunchbox fare). Or you can decide that now is your time to lie low, take care of yourself, cut down on work and responsibilities, learn what you need to learn, explore other modes of healing that appeal to you, and do things you never give yourself time to do because of being a creative busy working mom (like read novels and hang out with friends? if you’re me).

henna again

Thu, 02 Nov 2006 12:40:10 +0000

Sunday was a henna party. Here is my head (done by Arti and Meg):

which kind of day?

Thu, 02 Nov 2006 12:34:06 +0000

Lately I keep facing this choice. Will today be a breast-cancer day or a regular day? Some days I don’t have appointments, feel all right, don’t do research or talk to other people in the cancer world, read novels, and get my “regular work” done. Other days I look things up online, let myself explore new Web sites that might hold useful information of one sort or another, read cancer-related books (see “bibliotherapy: sick”), talk to other people facing what I’m facing, make or go to appointments, and/or feel bad. And I am never quite sure which day I’m going to have, at least on a non-appointment day. Sometimes I get sucked in, sometimes I resist, other times I tell myself it’s useful and helpful to just go with the flow and follow my impulses as to what the spend my time on. I guess my goal is to prioritize the important breast-cancer stuff while not becoming a full-time obsessive breast-cancer junkie; and meanwhile, to get the “regular work” done on a reasonable schedule. All while not stressing out about either one.

getting through it

Fri, 27 Oct 2006 23:13:12 +0000

It’s Friday night after chemo on Tuesday. Today I took the exam to be a Lamaze childbirth educator, which was administered in Springfield, MA. My excellent friend Lisa drove me there and back, which was key to making this crazy plan doable. The exam itself was fine–all multiple choice, on a computer, felt like a quiz game–except that when it first came up it was in Spanish. That meant over an hour’s delay while the testing center downloaded the correct test. So I was pretty tired by the time I finished and we drove home. I spent the rest of the daytime in bed reading (The Time Traveler’s Wife, excellent) and got some more energy at about 8:00 at which point Lisa and I did some henna on each other. Now it’s bedtime and I’m not feeling too bad–less queasy, and overall the flu-like headache hasn’t been so bad this round.

3rd chemo

Tue, 24 Oct 2006 17:48:04 +0000

Today was my chemo-spa day again. We ran around ahead of time trying to get stuff done, but I did have time to do my mediation practice and have my flax-oil smoothie for breakfast. New York Oncology Hematology was really busy…more busy and behind than we’ve ever seen it. Apparently yesterday was even busier, at least in the chemo infusion room. Our nurse Amy (who again wasn’t our nurse this time–rats!–but she snagged us a seat near her desk again) said she had 27 patients yesterday and she usually does about half that in a day. So we got started with the chemo an hour late, almost, and didn’t finish until nearly 3:00. That was okay, because I don’t find the chemo infusion itself stressful and I don’t really mind being there. I never take work or catch-up stuff (bills, etc.) or my computer, so I just talk to Eric, read books, talk to the nurses, and relax.

life goes on and dysfunction does too

Fri, 20 Oct 2006 13:55:23 +0000

I’m back from Baltimore and it’s the middle of week 3 of my chemo cycle, so I am busily trying to DO STUFF before next Tuesday. There are many things that need doing before the end of the month, and I’m assuming that Tuesday through Saturday or Sunday next week I won’t feel much like doing them. So, in an ironic turn of events, I’m finding myself piling on the to-dos this week, and feeling anxious about not getting them done, in an attempt to give myself a break next week (and not feel anxious about not getting things done).

my head

Fri, 20 Oct 2006 13:53:53 +0000

At the MANA conference’s closing session I began my career of wandering around bald with no head covering. As we stood in a huge conference-hotel ballroom in a large (250 people?) circle, I was kinda daring myself to take off my bandanna. After a while I said to my friend Wendy, “I could take off my bandanna. What do you think?–No-no-no! I shouldn’t ask you what you think. I don’t care what you think.” Then I said to myself, “Oh, how hard could it be?” so I took it off.

Then I got many hugs and kisses upon my head. That was gratifying. I showed off my head until we went out to dinner.

Looking for dinner, we walked through the Inner Harbor area (stores, restaurants, many tourists) and Wendy asked, “Do you care that people are looking at you because of your head?” I said, “Are they? I hadn’t noticed…so I guess I don’t care.” That was interesting. We had been having a good conversation so I just hadn’t paid a bit of attention to peoples’ reactions to me–a lack of self-consciousness that felt very unusual for me.

Since then I haven’t really held at the forefront of my mind how people will react to me and my bald head (covered or not). Now (in my ongoing evolution as a bald person) I don’t really care much whether my head is covered or not around people I know and like. If I’m cold, I have something on my head…if I’m hot or itchy, I take it off. Sensible, no?

off to the MANA conference

Wed, 11 Oct 2006 20:55:51 +0000

Tomorrow I am going to Baltimore for the MANA conference (that’s Midwives Alliance of North America). My hats and bandannas and I will be home Monday night after going to presentations, giving a presentation, going to the Division of Research meeting Monday, and hanging out with my MANA friends throughout, which I greatly look forward to. Perhaps there will be henna.

Oh! I made a first experiment in head henna with the help of my friend Arti. Here is a picture. The sexy hennaed forearm is Eric’s.

Neulasta: $6000 or $75, you pick

Wed, 11 Oct 2006 20:47:58 +0000

After chemo last Tuesday, my awesome nurse Amy suggested we try to call in a prescription for Neulasta and see if my insurance company would cover it that way and give it to me for $50 (my highest drug co-pay). Then my doctor in Chatham could stick me with it on Wednesday and I wouldn’t have to come back to Albany for a 3-minute appointment.

The CVS down the street from Albany Med had a dose to prescribe for me…we went to pick it up…it cost $50. List price on the receipt: $2856 or something. We took it home and put it in the fridge, and the next afternoon Dr. Jeff in Chatham did the honors and I paid him the usual $25 co-pay. The instructions for the Neulasta said, and I kid you not, “Remove injector from carton before injecting.” They don’t mess around telling you exactly how to use such expensive medicine, I guess.

So: round 1 Neulasta? Over $6,000 all told. Round 2 Neulasta? $75 total.

Health insurance is so deeply weird.

And Dr. Jeff points out that New York Oncology Hematology is criminal for charging that much for a drug. After all, it only costs $2856. How do they think they can get away with charging over twice that much? (See previous paragraph for the answer.)

so how did the chemo go this time?

Wed, 11 Oct 2006 20:41:57 +0000

This time I was absolutely wiped out from Wednesday afternoon to Saturday afternoon. I lay around in bed, reading, napping, nibbling on things to keep the queasiness from flaring up. I couldn’t do much else. Eric kept sending me back to bed, I think, or maybe that was me sending me back there (for once). I ate regular meals, I slept regular hours, I waited it out. I wasn’t miserable, I was just bone-deep exhausted. Kind of a new feeling for me–so tired even I couldn’t convince myself to be useful.

day 25: Ellen Hair-was-brown

Fri, 06 Oct 2006 14:32:49 +0000

It’s day 4 after chemo #2 and I am queasy and quite tired, and taking it easy (for once). I have been napping and reading and resting. I realized yesterday–remembering that I hadn’t added to the blog since before chemo on Tuesday–that it takes a certain amount of energy to write something that is not just a list of complaints, but instead is at least a bit interesting.

This morning I got sick of what was left of my hair (which was falling out in clumps when touched anyway) so here is a photo essay! Click for bigger photos. This morning…half of it gone already, looking pretty sorry.

Results after scrubbing one hemisphere of my head in the shower but not the other!

Then Eric shaved it all off. Voila, the piratical look. After that he shaved it with a razor.

First bandanna choice…

The actual head!

Ellen update 10/3/06

Fri, 06 Oct 2006 13:54:19 +0000

Hi!

It’s the beginning of my second chemo cycle today, and also the beginning of our thirteenth year of marriage! One makes me queasy…one makes me incredibly grateful. Though I am reminded that I should be connecting with feeling grateful for the chemo as well.

Chemo, as I have decided to think of it, stands for Chemicals Helping Eliminate Microscopic Oncology. Not very personal, but accurate (and me being me, it would have to be accurate).

end of week three

Tue, 03 Oct 2006 06:53:53 +0000

The past few days have been wonderful, despite my hair coming out gradually. Luckily, we really do have thousands and thousands of hairs on our heads. It doesn’t look like it’s thin yet (except to me).

I attended a great birth on Friday, a day when I had lots of energy and no plans I had to cancel. Our friends had a whoppin’ baby after only two hours of hard work–and a lot of fun labor time before that–and my niece and I (she was doula’ing too) got home by midnight. Everyone is happy. I am very happy not to have had to miss that one because of chemo or something else…triumph!

Chemicals Helpfully Eliminating Microscopic Oncologies

Tue, 03 Oct 2006 06:48:23 +0000

Okay, so that’s how I am striving to think about the chemotherapy treatment I am lucky enough to be able to take into my body this morning.

But I can’t help niggling over the question of how it ended up chem-o-therapy instead of chem-i-therapy. They’re not chemocals.

Books and healer people have been reminding me that the more I can welcome the chemo, accept it, get behind it, visualize it working for me, the better it will work and/or the better I will tolerate it. I have never felt as some patients do, that chemotherapy is a horrible attack imposed on them from (?) their doctors, and they need to resist it or get it out of their bodies as soon as possible. I wouldn’t agree to a medical treatment of any sort that I felt that way about. Nor have I been drawn to visualizing what’s going on with chemo as little Pac Men traveling the paths of my body chasing and eating up harmful cancer cells–that just hasn’t appealed to me. My massage person suggested I imagine it as light, just light, coming through my port and into my body. Maybe I can work with that word “port”…porthole…hmm, sea port where lots of illegal immigrants come ashore to work hard all over the country but tax the social-services system a lot. :)

day 17

Thu, 28 Sep 2006 22:04:04 +0000

My hair started to come loose today. My scalp has hurt all day and tonight my little absent-minded tug-test came up with two, three, twelve hairs per tug. It’s weird how I have a scalp-ache…not a headache, just my scalp, all over. I had a tender scalp during the first week after chemo too, for part of a day–but it went away, and I knew that was too early to lose my hair. So now, here it goes.

beyond allopathic

Wed, 27 Sep 2006 21:16:28 +0000

Things I’m doing besides standard Western medicine’s slash, poison, and burn:

Learning to meditate, getting in touch with the more emotional parts of me

Acupuncture to lessen chemotherapy side effects (nausea)

Drinking nettle infusion to support my liver through chemotherapy

Taking milk thistle supplements, ditto

Taking mushroom tonic and extracts and eating more shiitake mushrooms (anti-tumor, immune-boosting, yummy)

Eating flax oil and ground flax seeds every day, with yogurt or cottage cheese (anti-cancer regimen)

In general, learning more about herbs for cancer and the immune system with the goal of incorporating various preventative treatments into my diet and routine

Reading useful books about living with cancer (some about dying with cancer)

As I have often said, having breast cancer is a half-time job. This time around part of my job is in the kitchen!

genetic testing, part 1

Wed, 27 Sep 2006 21:09:19 +0000

Last Friday Eric and I had the initial genetic-testing appointment at the oncologist’s practice. It was with their genetic-testing person, who is an oncologist rather than a trained certified genetic counselor. We found the appointment less than we had hoped: first we watched a very basic 30-minute video on genetic testing for breast cancer, then talked to Dr. G., who didn’t seem to have a lot of information she planned to impart to us. We asked a bunch of questions, which she answered…sort of. I guess you could describe it as: she didn’t answer in a teaching sort of way. She answered in a let’s-get-this-question-done-with sort of way. Not that she was impatient, but her answers didn’t really fill in the blanks for us. Nor did the video. However, she did loan Eric a big expensive textbook called THE GENETIC BASIS OF HUMAN CANCER, in which he plans to read the breast cancer chapter. Maybe that will answer some of our questions. Eric says she talked over my questions–I noticed, but didn’t really resent it, since I seem very thick-skinned in the conversational-style department. Eric resented it for me, though.

no news is good news

Wed, 27 Sep 2006 20:52:20 +0000

I have felt good for the last week and have been often pretending the world of the sick has nothing to do with me. Except for some web research in an attempt to figure out how better to manage the queasiness next round. I haven’t been thinking much about the larger issues of getting rid of breast cancer, so I haven’t had much to add here.

Oh, but we did go to the initial genetic-testing appointment. More on that later. It was more of a dis-appointment.

what's the buzz

Wed, 20 Sep 2006 10:26:49 +0000

This morning’s radical haircut.

Neulasta

Wed, 20 Sep 2006 10:22:26 +0000

That’s the name of the medicine I’m getting the day after each chemo to boost my white blood cell count. It is a brief shot in the arm that I have to drive to Albany and back in order to get. Dr. C. the oncologist says that it is basically prophylactic–it eliminates the risk of me having so few white cells that I get a regular infection and it turns fatal. He told us it was expensive, but I’ve learned some more about it since I got the first one.

saturday through wednesday (more than you wanted to know)

Wed, 20 Sep 2006 10:11:29 +0000

Saturday I went to Pennsylvania for the CABC board meeting, which was all day Sunday. Spee drove and spent Sunday visiting Lucas at Westtown. I felt okay if queasy on Saturday, but by Saturday night I felt bad and went to bed early in the hotel room I was sharing with another board member (who was out). My knees ached like crazy. I had a slight fever, which scared me, because my instructions–as an immune-system challenged person since chemo kills off white cells–are to call the oncologist or go to the ER if I have a fever of 100.5 or above. Luckily, it was only 99.3 and it wasn’t going up, so I took some ibuprofen and went to sleep.

end of another day

Fri, 15 Sep 2006 21:38:17 +0000

Still queasy, no worse, no better, no effect from the Zofran. I wasn’t worried about it getting worse today, though, so that was nice. Still feeling flu-ish in my head. Ran out of energy at 3 PM today and went home to bed instead of continuing to help Paul tile the backsplash in the farmhouse kitchen–darn! Now it’s 9:30 and I’m headed for bed. Despite feeling poorly all day, I was constantly aware of how much better this is than 1995, and how relieved I am to be just feeling regularly sick, mostly, and somewhat functional, instead of sandbagged by the combination of chemo and palliative drugs and reduced to watching movie after movie on the VCR in bed for 3 days.

end of day 3

Thu, 14 Sep 2006 21:34:02 +0000

Today I was queasy, pretty much all day, but never so much that I was worried about throwing up. A Zofran at 9 AM had no effect, acupuncture at 1 PM didn’t seem to do much noticeable right away anyway, ginger beer and popcorn to fill my empty stomach helped a bit, the remedy from last time didn’t do much, and a very strong chewy ginger candy left for me by my mom helped the most, for a little while anyway. I’m still eating, sort of like when I had morning sickness–eating doesn’t make me more queasy, maybe less–and still feeling mildly flu-like. So this is kind of like chemically-induced stomach flu. Hmm.

Ellen update 09/11/06

Thu, 14 Sep 2006 21:17:06 +0000

It’s Eric’s birthday today! We are now both 40. Whew.

Tomorrow is my first chemotherapy treatment, around midday at Albany Med. I am regarding it with a mixture of relief (for getting started, thus closer to getting it over with) and dread (for doing this scary thing at all). My oncologist and the specialist we consulted at Dana-Farber both feel that TC x 4, Taxotere and Cytoxan administered together once every 3 weeks for for cycles, would work well for me. This is a relatively new protocol for early breast cancer but Taxotere has been in use in metastatic cancer for quite a few years, and adminstered after Adriamycin and Cytoxan (the AC–>T regimen) for the last few years at least. Anyway, that seems to be my best bet since I can’t take Adriamycin again. So tomorrow is the big day. After that my chemo days are October 3, October 24, and November 14. Then, after a suitable break of some unknown length, I start my 33 daily radiation treatments.

me

Wed, 13 Sep 2006 08:38:52 +0000

Yesterday morning. My hair has been cut much shorter than usual (1/2" in front, at its longest) but you really can’t tell much difference! I’ll have to buzz it to 1/4" next week, so as to really look startling.

chemo thoughts

Wed, 13 Sep 2006 08:09:36 +0000

Aloxi, Tagamet, Taxotere, Cytoxan–ATTaC! Hmmm. Aloxi, Tagamet, Taxotere, Cytoxan, Heparin–ATTaCH.

Aloxi is an anti-emetic, tagamet is to settle my stomach some other way (anti-reflux…it’s an ulcer med?), Taxotere is the new chemo agent, Cytoxan is the old chemo agent, Heparin is to keep my port catheter from clotting up in between uses.

And there’s the Decadron I’m taking at home the 3 days around chemo–so that would make it, what, DEATTaCHD?

chemo #1

Tue, 12 Sep 2006 21:52:21 +0000

It went well–efficient, friendly, we liked the nurse, got to sit on the quiet side of the infusion room, and everything went fine with the various drugs. I got a headache from the Cytoxan, but it only lasted an hour or so and wasn’t very bad. Gave my allergic oncologist advice about how best to use nasal steroid spray, to which he said “thanks, doc!” All in all it was calm and almost relaxing in a way. It is good to get started. Now I’m home and feeling tired but otherwise fine. Ate a nice dinner provided by members of our Quaker meeting…

murmurs?

Mon, 11 Sep 2006 16:27:17 +0000

Last September and October, I found myself crying and crying over stories of Hurricane Katrina–the awful ones, the wistful ones, the happy-ending ones. Of course this was only in the car because One, we only listen to the radio in the car and Two, the car makes a nice private place to cry. This continued from the beginning of September to the middle of October, at which point my mom reminded me that it was almost exactly 10 years earlier that I had had the lumpectomy. Wow. Then I had a real cry, not in the car, and realized that I had found that lump the first few days of September, had it taken out, been diagnosed by surprise the end of September, etc.–in other words, had spent the same time period 10 years earlier getting closer to, discovering, and dealing with having cancer. After surgery it was much easier–the nodes were clean, the course was set, everybody knew–and after that in 1995 I was no longer so close to crying at stories of natural disaster.

fashion statement

Mon, 11 Sep 2006 14:48:00 +0000

A few weeks ago I received a nice big plain red bandanna in the mail from a friend. I also got a lavender one and in the package were two black bandannas with skulls and crossbones on them. (I’m assuming those are for the kids.)

We were in the car. I tied the red one over my head and it was big enough to even make a sort of folded headband in the front and still cover my head. I checked myself out in the mirror and was feeling pretty dashing indeed–hey, this could work! maybe I actually look good this way!–until a five-year-old voice from the back seat of the car said, “Mommy, you look like you’re wearing a napkin. (pause) From a restaurant.”

$745.25

Mon, 11 Sep 2006 14:44:20 +0000

I am looking at the receipt for 20 tablets of Zofran, an anti-nausea medication that didn’t work very well for me (against the nausea-inducing Adriamycin) in 1995. That’s, what, $37 per tablet?

Nothing much lately has suceeded in making me feel more sick than that $745.25. Who takes medicine that costs that much money? Only really, really sick people.

Or maybe that’s who runs the drug companies…

(I only had to pay $30 for them. So lucky to have health insurance.)

impending chemicals

Thu, 07 Sep 2006 23:00:02 +0000

Chemo starts Tuesday midday. TC x 4 plus a Neulasta shot on Wednesday, every 3 weeks. I’ll be done in mid-November (then radiation). I get to take steroids too. Yee. Hah.

the stuff I want to be doing

Tue, 05 Sep 2006 14:41:55 +0000

What I’ve done for the last few days/plan for the next few days:

Last Thursday: doula visit Friday: birth Saturday: family outing, then be useful to a friend because of being a “birth person” Sunday: postpartum visit to Friday’s new parents Monday: initial meeting with potential doula clients Tuesday: work on doula-client filing system, fill out doula forms, revise handouts Wednesday: visit birth center with Kristin and Pat Thursday: ? maybe revise those handouts I didn’t get to! Friday: come along on prenatal visit to Natalie’s doula clients

whatever happened to that minute group of cells?

Tue, 05 Sep 2006 14:33:45 +0000

Last Tuesday afternoon, late, the surgeon called and left a message: the tumor board had met that day and discussed the re-excision results, and they determined that “everything looks okay” on the margins.

I need to ask for more of the story, but my informants tell me that the radiation oncologist, surgeon, and oncologist confer at the tumor board and go over the slides and decide whether the lab was just being cautious or whether what’s on the slide is worth worrying over (or re-excising over, more exactly). The Dana-Farber oncologist said 98% of the time, when surgeons go back in after a result like that, they don’t find any more cancer cells. But she also said she would ask the DFCI pathologists to look carefully and see if they agreed with her, and would get back to me if they didn’t. None of this information was in the records she got from the oncologist’s office–probably because he didn’t have the information when he sent the records. I’ll be asking him about it tomorrow too.

busy friday indeed

Tue, 05 Sep 2006 14:06:46 +0000

Friday was my second-opinion visit at Dana-Farber. It was also the birthday of my doula clients’ baby…scheduled for just the day I couldn’t be there for them. I was there to help them get started and there to rejoice afterwards, but my doula partner was there for the labor and birth. Everything went fabulously and everyone is happy, and only I am also very sad. But mostly happy.

The second-opinion appointment was very useful. Judy Garber, the oncologist I saw at DFCI, was really helpful and nice, gave us lots of balanced, nuanced information about chemotherapy options, and told us more about genetic testing and my personal chances of having the BRCA1 and BRCA2 mutations.

more on taxanes

Tue, 05 Sep 2006 13:02:31 +0000

Better coverage of the one Taxotere-Cytoxan study: abstracted/presented 2005, not yet published, 1016 early-stage women, all with surgery, chemo, & radiation; those taking TC x 4 had better 5-year disease-free survival rates (86%) than those taking AC x 4 (81%). That’s a significant difference overall, but for node-negative women there wasn’t much of a difference. Overall survival was about the same. Mean follow-up was 5.5 years.

Interview with the principal investigator about the study (scroll down)

waiting on a baby in the midst of all of this

Tue, 29 Aug 2006 22:04:50 +0000

I am still waiting for my doula clients to have their baby (the due date is today and the mom is 3-4 cm. dilated already) so as usual I’m juggling the various places I have to be, carrying my cell phone and birth bag around, and hoping the baby arrives before Friday or after.

I have loved working with this family (since June) and put a lot of thought into what I should tell them about my situation. I didn’t want to stop being their doula…I didn’t want to hide from them the fact that I would be less available to be at their birth over July and August…and I didn’t want to lay my breast-cancer burden on them and have part of their birth worry be about me. Births are not about me, and having clients concerned about me rather than the other way around just doesn’t feel right.

I had my first surgery when I had already planned to be away, and when they were a month from their due date, so I waited to tell them anything until after that, when I knew more. About a week after the surgery I met with them, along with my main backup doula, and at the end of the meeting told them that I needed to have some surgery and would be unavailable another stretch of days besides my vacation week (which they already knew about). I didn’t say what kind of surgery and clearly gave off no please-ask-me-what-it’s-all-about signals, though I’m sure they wonder.

To schedule the re-excision, the surgeon gave me a range of reasonable dates. I picked the surgery date I thought gave me the best chance of still being at their birth–the earliest date I could get (which suited my other scheduling needs too). After vacation, I met with them again with my other backup, so they would know them both, just in case. This doula was going to be on call for them during the re-excision days, since my primary backup for this birth was on vacation that week.

Three or four days after the re-excision, I was feeling pretty good and ready to go to their birth. The moon was full, their toddler had predicted the baby would be born right then, and I was ready…but no baby. Now it’s a week later! And I’m talking to them every other day and working out backup coverage for the hours I will be in Boston on Friday. I guess this challenge is at least diverting…

I haven’t told them any more details of anything going on with me–and when I’m talking to them, thankfully, I enjoy so much focusing on them, and I don’t even think about myself or this whole cancer thing. It is a full-consciousness break from the world of the sick, somehow, and further confirms for me that this work, supporting women and families in pregnancy and birth, is what I need and want to be doing.

I feel pretty clear that telling them what I’ve told them so far is the right thing to do, from the doula perspective, but I can see how it looks paternalistic (maternalistic?). I think I will end up telling them afterwards, when my postpartum visits with them are over. Assuming they are curious–if not, I won’t bring it up, I don’t think.

I spent so long trying to figure out what felt the rightest to do in this situation–I hope in the future I can arrive at the same level of comfort with a conclusion by a shorter, less thought-consuming path.

no walk-ins

Tue, 29 Aug 2006 20:21:51 +0000

Last Thursday I tried to get a second-opinion appointment at Dana-Farber with the breast oncologist most recommended by Dr. C., my oncologist, and was told she didn’t take walk-ins, only special requests by other oncologists. So I asked Dr. C. to contact her. He did, she said yes by e-mail on Saturday, and I have an appointment at noon on Friday. So I guess I’m feeling special.

I keep puzzling over what, exactly, requires my actual presence in this second-opinion process (Eric says I should just reread my mom’s book for the answer). I may have questions for her, but in terms of what she needs to know about me, exactly why do I need to show up in front of her? Nevertheless, I’m going. We’re going.

down the rabbit hole again

Tue, 29 Aug 2006 10:10:19 +0000

Yesterday Dr. P. the surgeon called while I was out school shopping with Will. She said the final path. report from the re-excision showed “a single minute group of atypical cells consistent with ductal carcinoma,” only showing on the permanent (staining?) and not the frozen section analysis (that they did while I was in surgery).

Yeesh.

She said she’d talk with Dr. C. the oncologist on Tuesday and get back to us with what they thought should happen next. We assume this means that more surgery is not a given. What does “minute” mean? Is this classed like in the nodes, “microscopic” and “submicroscopic” with the latter kind of not counting? More to learn…

bibliotherapy: well

Tue, 29 Aug 2006 09:59:57 +0000

Books I’ve been reading because of gifting myself with the time to read for fun, and at times necessary escape (some given to me and some recommended by my friends and family).

The Position by Meg Wolitzer Great escapism until one of the 6 main characters developed Hodgkin’s Lymphoma on page 110. Yeesh.

The Bright Forever by Lee Martin

Le Divorce by Diane Johnson

The No. 1 Ladies’ Detective Agency novels by Alexander McCall Smith Given to me by my mom. Fun!

bibliotherapy: sick

Tue, 29 Aug 2006 09:54:16 +0000

Books and articles I’ve been reading because of breast cancer, some given to me by my friends and family.

**2006-2007 **

Breast Cancer? Breast Health! by Susun S. Weed (herbalist)

I’ve read lots of parts of this but haven’t yet sat down to read it through and through. Lots of interesting information about anti-tumor and immune-boosting foods and herbs, plus herbal support during chemotherapy. However, she is against chemo and radiation and her evidence, what I know of it, is alarmist and not objective.

what I dare to think I'll be doing this fall...

Sun, 27 Aug 2006 23:20:59 +0000

…between chemo treatments.

September 17: CABC board meeting in Valley Forge, PA

October 13-15: Midwives Alliance of North America conference in Baltimore (I’m presenting)

November 8: 15-minute presentation at the APHA in Boston on our MANA statistics Web system

November 11: nephew Jacob’s bar mitzvah in Madison, WI

November 22-26: Family Thanksgiving celebration in San Rafael, CA

Am I nuts or just stubborn?

possible chemo regimen

Sun, 27 Aug 2006 23:03:32 +0000

Here is what my oncologist is leaning towards: taxotere/cyclophosphamide

because “TC (docetaxel/cyclophosphamide, 4 cycles) has a superior disease-free survival compared to standard AC (doxorubicin/cyclophosphamide) in 1016 women with early stage breast cancer.”

I like that 4 cycles. I would be done by Thanksgiving.

Ellen update 08/27/06

Sun, 27 Aug 2006 22:34:20 +0000

Hi there!

A few details of how things are going around here. Surgery on Friday the 18th was quicker and easier, and I felt pretty good even Friday evening. Fewer painkillers, more energy, pretty much all better by Wednesday. The surgical margins this time were clean–so no need for more surgery. That was good. (We heard that was probably the case on Friday, but we only heard last Wednesday that the lab had confirmed it.) It was really great to not feel so injured this time around, so that has been kind of cheerful.

Ellen update 08/18/06

Sun, 27 Aug 2006 22:33:43 +0000

Hi there! It’s time for more news from the trenches. Hold on to your seats, rated I for Ick due to graphic descriptions of exciting facets of my current life.

I am finally feeling pretty much all better from the surgery 3 weeks ago, though my breast still hurts. I am back to normal activity level as of Wednesday or so. But!

After the lumpectomy etc. 3 weeks ago, the pathologists reported that 2 margins of the excision were not clean. Now, these were not the edges of the main piece of me my cheery surgeon, Donna Pietrocola, removed, but 2 outside edges of the extra 6 slices she took out after she removed the main block of tissue. Who knew they did it like this? It’s like cutting the mold off cheese. Anyway, 2 outside edges were not clear of cancer cells–1 had regular bad cancer cells and 1 showed DCIS & LCIS (ductal & lobular carcinoma in situ, non-invasive-yet and non-invasive cancer). So there’s a bit more in there and therefore off I go for a re-excision (more slices) tomorrow AM at 8:30. Needing re-excision is apparently not all all uncommon–happens 40% of the time?

Ellen update 07/30/06 (aka Way Too Much Information)

Sun, 27 Aug 2006 22:30:36 +0000

Hi! I am recuperating calmly and gently from surgery last Friday morning. I am doing pretty well physically and emotionally. Here is what is going on.

I spent most of Thursday as a prisoner of Albany Medical Center for “pre-surgical procedures” and the filling out of yet another detailed health history form, etc. etc. I had the fun company of my doula friend Dorian in the morning, spent lunchtime reading in the park, and returned to the hospital in the afternoon. My mom flew in and found me there at 2:00, and we got to leave at 4:00. We went home, went for a short walk, and went out for a delicious sushi dinner! Friday morning we reported to the hospital again and Eric met us there (having driven down from Lake George and left the kids with the rest of our clan). The surgery went fine and we got to leave for home at around 5:00 p.m. I sat on the porch soaking up our beautiful view of the hills from 6 to 8, which was wonderful.

the 5th floor

Sun, 27 Aug 2006 22:18:34 +0000

On my way up and down the elevator from Nuclear Medicine the day before my first surgery, the doors kept opening on the 5th floor, where there was a big bright cheerful sign:

Morrell Center for Childhood Cancer and Blood Disorders

Every time, I kept thinking, thank goodness this is about me and not them.

telling people is the worst

Sun, 27 Aug 2006 22:15:03 +0000

I don’t like being the center of attention. I don’t like giving people bad news. This is not a good recipe for someone who has to go around announcing that she has breast cancer again. Silver Bay, where there were maybe 50 people who needed to be told, was getting a bit agonizing.

Hi, how are you? Oh, I’ve been better.

Eric told a few people. I told a few people. Spee and Sandy mercifully went around telling some of our friends so I wouldn’t have to…what a relief! I felt so taken care of.

timeline (july-august 2006)

Sun, 27 Aug 2006 21:46:09 +0000

Here is a timeline of this summer’s breast-cancer adventure:

Late May: found lumpy area in left breast. This was only the second time since my first breast cancer in 1995 that anything had worried me–and the first was in ‘97 or ‘98.

Early June: went to midwife for annual exam, she agreed area felt worrisome, said to wait a couple of weeks and then (if it didn’t go away) get an ultrasound and a surgical consultation. Waited 6 days, didn’t want to wait anymore (I’ve never had cyclical lumpiness), scheduled ultrasound

what am I doing here? (said Persephone)

Sun, 27 Aug 2006 21:24:36 +0000

Good question. Given my reaction to blogging, nothing but something unusual and prejudice-shaking would bring me here. That something seems to be breast cancer, for the second time in my life, just before my 40th birthday. Though I have been sending out periodic e-mail updates to a large list of family and friends, there are some musings I haven’t wanted to deliver to peoples’ In boxes yet still thought some people would want to hear. Not sure yet what exactly I am up to, but capital letters are sure making me self-conscious.

So one thing I realized I’m feeling, overall, is that there are these two worlds–the world of the well and the world of the sick–and I slip from one to the other all the time. Maybe slip down into one from the other in a big way, too, with this scary diagnosis, and emerge later…next February?…back to the regular world again. Maybe the cycle is bigger–every 10 or 11 years?

Everything is chugging along in life and breast cancer is far behind me, making me an interesting and maybe more evolved person, but certainly not part of my personal day-to-day life, and then suddenly the ground opens up and I’m back in the hospital-doctor-surgery-Vicodin-recurrence percentages-chemotherapy drugs world with all the other scared sick people.

Here is where my reaction is kind of interesting. When I’m in the world of the sick, I feel relatively well and lucky, especially to have the partner I have and the family, friends, and community we both have holding us up. Not to mention having a curable disease, and being smart enough to learn what I want to learn to feel like a part of my own care. And finding good doctors who will talk to me and answer my (sometimes overly intellectual) questions, and perhaps even enjoy doing so. So it is somehow less complicated and less depressing to be in the world of the sick. Plus, priorities are pretty clear there.

Then I surface back into the world of the well where I am Greatly Impaired all of a sudden. Have I just had surgery and am on painkillers and have no energy? or am I just tired, distracted, worried, and wanting only to either Fix Things, Learn Some More, or read an escapist novel? Either way, I’m feeling Not Normal and being around normal people, living their life in the world of the well and not even being conscious of the world of the sick, really makes me feel pitiful. I feel like I don’t fit in at all anymore and have nothing to talk about–at least with people who don’t know what’s going on with me. And with the people who do know, sometimes I want to talk about it and sometimes I just want them to know, so we don’t have to talk about it.

This slipping back and forth is hard to handle. It’s also hard to explain why a trip to the oncologist is easier to deal with, for me, than an afternoon at the beach.