Thursday, December 22, 2016. I have been analyzing, marking-up, highlighting (don’t know why), generally staring at and preparing calendars for the “IRB Protocol” one-pager that I received in July (my copy is below).
For those keeping score, the protocol is over. We stayed the course and got through it. [That is not to say there weren’t moments when even our Dr. suggested that we might need to try a transplant instead of continuing the protocol if the many side effects, including blood clots, cholesterol etc., could not controlled. But we never wavered and it is now done. And getting through the protocol is the best way to address this cancer.] All intense phases of treatment, totaling almost eight months, are complete: Induction, Phase I (April 27- May 30), Intensification, Phase II (June 1-July 18), Intensification 1 /Re-Induction 1 (July 27-October 3), and Intensification II, Re-Induction II (October 13-December 21).
People often ask about “rounds” of chemo. I never really approached it as rounds. For me, it was one long round with hundreds of jabs to the face, body blows and just a couple of short knockdowns. Today, while certainly not feeling — and definitely not looking — like a million bucks, I am standing and ready (almost) to move forward. It’s definitely going to take some time to get back into fighting shape. And I fully appreciate it is a marathon not a sprint.
After touching this one-pager so many times that it literally could fall apart at any moment — sometimes hoping to see something, like a short-cut, that never appeared — I took out my black sharpie this morning and drew the “X” that you see below through most everything (with the exception of the “Maintenance” reference at the bottom of the page, which we know will begin once I recover). I’m not a user of the “X” (on calendars or otherwise), but this just felt so right and so good.
I definitely did not shoot 100% from the floor over the course of these eight months (I have missed a day of pills here or there, and taken a night or two off from the approximately 280 Lovenox shots that I self injected into my stomach (if I was way too bruised or way too tired). But we came pretty damn close (and I say we because the only times I missed anything was when Jen was out somewhere and otherwise didn’t make sure I was doing what I needed to do). We never missed or had to reschedule a treatment and we always pushed to get each phase started just as soon as we could. And while I don’t think there ever was a doubt that we would get through the protocol, it’s over and I like looking at that “X.”
Couple of shots from yesterday, including me with a face mask on. Notwithstanding that I have been neutropenic many times in the past, I am paranoid at this point about getting an infection or otherwise getting sick (because I have no neutrophils at the moment from all of the chemo), so I wore a face mask for the first time in eight months yesterday. It is uncomfortable, hot and one can hear what you are saying. Other than potentially this weekend (when I need to go in for more blood and platelets), I don’t plan on wearing a face mask again. The other shot (care of Nicole) is me getting the last drip of chemo on the IRB protocol (vincristine). As for the beard, it started growing in again a few weeks ago. My current plan is to shave the morning of January 3, 2017. Right before I leave for the office. [By that time, the swelling in my face (and feet and cankles) should be reduced, as Tuesday was my last day of Thioguanine chemo pills.]