One reason I am reluctant to write here more, or more frequently, than I have to, is because it perpetuates the sense that this is some kind of soap opera. But although it has some soapy characteristics, and endless plot twists, I certainly don’t find it entertaining. However, if I don’t post, it’s hard for anyone else to have any awareness of what’s going on. Those who have seen me recently will know I look well enough. But looks can be deceiving. (Though if I showed you the track marks up my arms, you’d get more of an idea of what’s been going on.)
There was a glimmer of good news last week, with my light chains down for the second month in a row. That is positive, important, and rare. Only the second time, since I started treatment, that I’ve had 2 consecutive “good” months. Worthy of celebration.
Unfortunately, at the same time, we have a new drama: abruptly, I have very few platelets in my blood. (Over the last month, my platelet count dropped from 195 to just 8, and it is stubbornly staying that low, despite several transfusions to top it up.) These are the cells that enable blood to clot: being without is frankly dangerous. After some investigation (including an emergency bone marrow biopsy – yippee), the Drs believe that the cause is “treatment toxicity” – ie the drugs are to blame. So, I’m off treatment (even though it was working) and awaiting a decision on whether we’ll attempt to restart, or try to move on to transplant.
In the meantime I’m tied to the hospital. I spent half of last week in the treatment room, and I am there again now awaiting yet another blood transfusion. For the time being, I think that’s how it will be. My nurse asked me this morning how I’m coping. If I’m honest, I’ve stopped worrying about the bigger picture and the long term. It’s so endless, relentless and unaccommodating that I’ve given up bothering to try to interpret what each twist and turn might “mean”for my prognosis. Whatever we’re fretting about today, it will probably be something wholly different in a few days time. There’s no point trying to read the runes. I’m pretty much beyond caring.
The short term is where it’s at. In the short term, I’m doing my best to accept my circumstances. I cannot make a plan from one week to the next – and that’s been true largely without exception for well over a year now. I waved my kids off to school today, not even knowing whether I will be able to pick them up this afternoon. I make plans and appointments… and then cancel most of them. I have moments of lucidity when I can think ahead, imagining projects I might undertake or participate in. And then I have the rug pulled from under me again, and am humbled by the realisation that I have absolutely no control over my life from one day to the next. I don’t know which days this week I will spend in the hospital. I don’t know if I will restart chemo next week, or not. I still believe that I will, eventually, have my transplant, but whether that is going to happen this month, or next, or whether it won’t be for another six months, I haven’t a clue. I will be out of circulation for several months, but I don’t know which ones. You can probably appreciate how difficult it is to process that kind of information. But unless you’ve been there, I don’t expect you to be able to comprehend what it feels like. I don’t know whose birthday I will miss. I don’t know whether I will be able to witness any particular performance or milestone. Will I be there for your class assembly? Will I watch your next match? Will I speak to your violin teacher? I don’t know. Will we go away for the school holiday, and if we do, will I come too? I don’t know. Right now, I’m waiting for my platelets, and that’s my horizon.
And all the time, we’re heading for this mythical time, post transplant, when I will be in remission and living a “normal” life. But I find it hard to form a mental picture of that phase of my life-to-come. It seems almost implausible. Certainly it isn’t sufficiently compelling for me to use as a mental anchor through the storm. I must navigate the now, accepting simply that it is what it is, and that what will be will be.
So… that’s where I am… There’s not much anyone can “do” – I have the NHS by my side, and they will keep propping me up. Spare a moment for Marisa and the boys, though: they too have to live my uncertainty.