Posts by Ellen Harris-Braun

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.

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.

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?

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...

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).

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

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.

Jess says:

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

1. Cancer.
2. Visitors.
3. Prescription medicines.
4. Meatloaf.

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.

…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.

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 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.

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.

Just for fun, print and try this quiz!

Problem-Cause Quiz

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.

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!

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.

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.

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.

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.