This Machine Killed Cancer |
| Shayne Miel's magical journey through cancer. Includes commentary by his wife Rebekah. Download the Friends of FKON CD Donate to medical and moving expenses. Purchase "This Album Kills Cancer" |
The plan, as developed in San Francisco by the doctor who advised against brain radiation, is to do a round or two of chemotherapy with a higher dose than I’ve been getting all summer, then to move on to the mobilization treatment to prepare me for the bone marrow transplant. I’ll explain more about the mobilization and transplant in the next post, so let me tell you about the strong round of chemo I finished last Monday and its aftermath.
All summer, I’ve been getting doses of R-MVP, which stands for Rituximab, Methotrexate, Vincristine, and Procarbazine. It is difficult for drugs to cross the blood-brain barrier, a nifty protection mechanism that we evolved to protect the computers in our heads from cat hair and the occasional Diet Coke spilled on the keyboard. Methotrexate is good at fighting brain cancer, but not great at crossing that barrier. In fact, almost none of the chemotherapy drugs are good at getting across (one of the reasons brain cancer is kinda lame). In order to overcome this issue, the doctors have been giving me a hefty dose of the stuff so that what does get through can do its thing. Now this new treatment means I get even more Methotrexate. I had a hard time finding out exactly how much more, but I got the sense it was somewhere between “a lot” and “quite a bit”.
Methotrexate is an interesting drug. Besides being used to fight cancer, it can also be used to treat gout, arthritis, psoriasis, and to give abortions. So if I had any of those issues lurking in the background, I can effectively check them off of my worry list. If left in the system Methotrexate can cause life threatening complications, so almost as soon as they finish giving it to me in the hospital, they start giving me its antidote, Leucovorin. (I like that they call it an “antidote.” The word conjures images of wind-bitten desert people with rattlesnake bites or perhaps someone close to a Russian tsar, mixing a potion in his bedroom and menacingly stroking his pointy goatee.) They keep me in the hospital until the Methotrexate level in my body falls below 0.05. It usually takes 6 or 7 days for me to get there, the level decreasing by about half each day. If I’m close and it’s moving in the right direction, they sometimes let me go early as long as I promise to keep taking the Leucovorin every 6 hours. An indication of the strength of this recent round of chemo is that at day 9 my levels have still not dropped all the way (although I somehow managed to convince them to let me go home on day 5, as usual).
For this round of chemo, we dropped the rest of the letters in R-MVP and added a new drug, called Cytarabine. The fun thing about Cytarabine is that it can cause cerebellar toxicities in these high doses. Your cerebellum is the part of your brain that deals with fine motor control, equilibrium, and whether you like stinky cheese (that last one was a joke…I would hate for someone to fail a medical exam because of my smart-ass comments). So, while I was in the hospital I had to take a number of sobriety tests to make sure nothing was shorting out upstairs. Balance on one foot, touch my nose then the doctor’s finger, sign my name, etc. These tests were particularly difficult when I had to do them in the middle of the night. Or when I had been drinking.
Fortunately, my brain came through the experience just fine (in the “he still has brain cancer but has not lost the ability to juggle” sense). But this round was still pretty tough. I felt wiped out all week in the hospital - much more so than usual. I even started turning away visitors at one point because I felt so bad. I then felt rotten for a day or two when I got home, but by the end of the week I had rebounded strongly. I was shocked. I felt as good as I had in months, honestly. Rebekah and I celebrated by going on a real date - we went to some art galleries, ate at a fancy restaurant, checked out a new brewery, and wound up at the local dive bar. We went home exhausted, but thrilled to have had our first real night out all summer.
The next morning, I got an email from my doctor saying that my levels from the day before were dangerously low and I needed to be careful. I called her freaking out about partying the night before, but she calmed my nerves, saying it wouldn’t be a good idea to do it again but what’s done is done. I should monitor my temperature and lay low. Apparently, my ANC (1.5 in a healthy human, > 0.5 in a “healthy” cancer patient) was at 0.0 and my platelets were at 34 (they start giving transfusions if I get down to 10). That’s a scientific way to say that I am totally defenseless against infections right now and, if I were cut, I would have a difficult time stopping the bleeding. Laying low seems like a good plan.
So, I made it through the first round of the stronger chemo. It wasn’t fun, but like all of this it passed and is now just a memory of not-fun. I’ll rest up this week and get ready to go in for the next big thing. If I’m lucky my counts will come back up in time for me to get to the beach once more this summer. We’ll see.
A Quick Note About Big Words: It often surprises me how much medical info I’ve learned in this process. And what I know is nothing compared to Rebekah’s knowledge of it by now. But don’t worry, we won’t quiz you on any of this stuff, or even be offended if you skip over the boring parts. I’m mostly trying to provide a lot of info for other people who are struggling with this disease and want to know what we’ve tried. Although… I do like the idea of there being some armchair quarterbacks reading along at home, shouting at the screen, “Cytarabine?! Are you kidding me?!? That kid hasn’t caught a tumor since his sophomore year! C’mon, coach - my son’s middle school team could beat these guys!!”