Sick

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

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)

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…

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!

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.)

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.

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?!?!?

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!

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:

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.