Posts by Ellen Harris-Braun

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…

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!

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)

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

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

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

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.

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.

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:

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

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!

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!)

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.

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 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.

(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!

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.)

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:

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.)

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.

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).