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!

(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:

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.