Today it’s two years since my final session at Radiation Oncology, marking the end of treatment less than six months after my follicular lymphoma diagnosis: 6 rituximab infusions at 3-week intervals, 15 days of radiation and that was that. Although, as I noted in a comment to the accompanying picture posted that day, “recovery’s going to take a little longer.”
Well no shit. Rituximab, though antibody therapy and thus not chemotherapy, is a poison that attacks a bunch of things in the body besides the cancer it’s meant for. That’s why I lost almost all my hair including eyebrows, why I had to take such extraordinary care against infection, why I was so weak all the damn time. And though I was lucky to miss out on some of the worse effects, neuropathy and night sweats and extreme sensitivity to temperature just for starters, it certainly was difficult enough. I had and have a strong body – “Your immune system is awesome,” my acupuncturist said after the third or fourth infusion, “I wish I could clone it for my other patients” – but just as it wasn’t made to accommodate a 16-cm tumorous mass in the abdomen it wasn’t made for whatever is required to take that mass down.
And the effects are long-lasting, a lot more so than my medical staff usually lets on. A friend who made it through a very gnarly bout with breast cancer said it was two years before she felt like herself again – you don’t hear that in the doctor’s office. While what she said remains an odd kind of heartening, I want to know when I will too because I sure don’t now. I have been subject to some variety of fatigue through much of my life, yes, but there have been occasions in the last two years where I would almost rather have been dead than deal with it any more. It comes in unpredictable cycles and the last couple of weeks have been the low end of one which perhaps is why, despite the absolutely splendid early fall East Bay weather, I’m feeling meh rather than celebratory today.
Apart from consistently showing NED (No Evidence of Disease, which I like better than calling myself a cancer survivor), what has changed in this time? I’ve noticed I’m more loving with my cat for one. I now have a liking for some prescription medicines, sleep aids and pain relievers, than sometimes I’m comfortable with. There are a lot of activities I say no to that I wouldn’t have before and as time goes by I feel less and less bad about it. I rarely intentionally play the cancer card when speaking up for myself though still make sure those who matter know: I’m not who or what I once was. In some ways these changes make me a drag, in some ways a kinder person. Frequently I suspect only I can tell which is which.
My next checkup is a month from now, too far out to think about apart from making sure bloodwork is done in advance. I try to think instead of anything but cancer, of getting some sleep tonight and going back to work on my novel and having something good to post to Facebook but mostly I end up thinking about how I’m going to pay the rent when much of the time I feel too fatigued to work. Those aren’t good thoughts and they haven’t markedly decreased in two years. Some things really do take a little longer.
(Republished from my personal Facebook account)