So many times during the past 3 months I’ve started to feel better — and then started to hope that I’d turned a corner — only to regress in a day or two or three to a bad place again. So I’m hesitant to report that things are going much better the last 10 days, and will likely continue that way for a while.
A good example of the “You feel better? … Ha, we’ll see about that” phenomenon happened about three weeks ago. I’d been on some heavy-duty narcotics (extended release morphine, for God’s sake, one pill every 12 hours) to control the extreme pain I’d been having in my lower pelvis. As the pain slowly got better, it reached a point where I wanted to try to get off the pain medicine. The morphine worked wonders on the pain, but it had many negative effects, the worse being a very slowed down digestive system, a very slowed down brain, and a general sluggishness and fatigue. Getting off the pain medication would be a step toward getting back to a more normal me.
I asked the doctor overseeing my pain management how to do go about that; she said to stop taking the morning extended release pill, then wait a few days to see how bad the pain was, then try to stop taking the evening pill. If I had any remaining pain, she said I should use the non-extended release pain medicine she’d given me.
I followed that advice. The pain was manageable after eliminating the morning pill, so after three days I stopped taking the evening pill too. My pain got slightly worse, but was tolerable, so I didn’t need to use any of the non-extended release pills. I was super stoked at the idea that I’d be off of all the narcotic pain pills, and got ready to start feeling like my old self again.
But what followed was a depressing stretch of about nine days, including four or five days that were pure misery. I thought I had some very bad infection, or the flu, except that I never had a fever. That wasn’t the case; what I had was a bad case of withdrawal symptoms caused by a too-quick cessation of narcotics after two-plus months of use. Stupid, I know, not to have thought of that, but I was following the advice I’d gotten, and I never imagined the consequences of quitting so quickly could be so dire and unpleasant. Little by little, though, the symptoms resolved on their own, finally going away altogether a little over a week and a half ago. It made me sympathize with heroin addicts trying to kick their habit, especially since I imagine what they go through is an order of magnitude worse than what I experienced.
I did eventually arrive at the place I’d hoped I’d be, completely off all pain medicine. It’s helped my general mood and mental state, but hasn’t been a panacea. The effects of almost three months of chemo treatment, most prominently intermittent fatigue and a lack of stamina, are still with me. But — and here’s some really good news — this is the last week I have to undergo the chemo treatment. Hoo-Ray. I had my last shot of the unpleasant (but very effective) Velcade and took my last dose of the unpleasant (but very effective) steroid earlier today, and have 6 doses of the thalidomide cousin Revlimid to take through Sunday. Then … I’m … done. A long time coming.
And what would a SSSBlog post be without a kappa light chain chart? You’re dying to see how that’s doing, right? Voilà: (If you don’t see the chart, click in the blank space and you will … there’s some glitch with this image in my blogging platform.)
The 20.25 figure is from a couple of weeks ago; the “final” figure — after all the chemo is done — will likely be even lower, down into the “normal” range. So for all the unpleasantness of the chemo treatment (and in fairness, many chemo treatments are much worse), it did its job, killing off almost all of those mutant plasma cells. Die, ye bastards, die!
The other good news, albeit short-term, is that I’ll have a break of five full weeks in my treatment, five full weeks where I won’t be having to put any noxious drugs into my system. Five full weeks where I hope my pain (yes there still is some) continues to abate, and where I can work out more and get my strength and stamina back again. And hopefully even get back to some sort of schedule working at SCPA.
After those five weeks comes a bigger challenge: the stem cell/bone marrow transplant procedure at Stanford. We received a calendar yesterday from them showing the schedule for that process. It starts on June 29, but the bad, painful, dangerous part of it starts July 23 and lasts about 14-21 days. After all the suffering I’ve gone through in the past five months, I believe I can handle it, and in any event I’d rather get it done sooner rather than later. It’s a fascinating procedure from a technical/scientific perspective, and I’ll share more about that in a later post. Right now I’m just focused on the short term — the end of chemo and my upcoming five weeks of freedom.
So that’s the scoop. Apologies for the long gap between posts. It’s hard to write when you are feeling miserable. Thanks as always to everyone, especially those special friends who, each in their own unique way, have been so supportive of me and Suzie through this hard time. We won’t ever forget what you’ve done for us.
Categories: Blogging, SSS Health