In this blog I have not talked about side effects much because I’ve not experienced much of them. The first rounds of therapy were so easy. I got my infusions in the hospital, got a bit tired in the process, went home with the bottle pump and fell asleep for a few hours until Flucha and the children got home. After that, I was largely restored and feeling fine. This lasted more than a year.
One of the antibodies made spots explode on my face and all over my back and another brought thick calluses to the heels of my feet. There was the increased sensitivity to the cold caused by oxaliplatin and the neuropathy that developed in my fingers and toes with time. There might have been more. It’s all in this blog. None of this was debilitating.
Things changed when I started taking pills just after Christmas. The first, Stivarga, massively messed with my stomach and digestion. I could hardly eat and I didn’t enjoy it one bit when I did. I was dead tired on quite a few days. My doctor asked me to reduce the dosage. The therapy I started on Monday is even more brutal. The first day was easy enough. We went to Bern for administrative purposes and had a good day walking around town. The bears were unfortunately still hibernating. So were the cafés.
The next few days got progressively worse. I was not just tired but utterly out of energy, felt pain radiating out to my entire body from the belly region, ate less and less, and had the hardest time finding any sort of comfort. I walked haltingly because of the pain from my belly. I couldn’t sit in front of my computer for any length of time doing something as simple as responding to emails. I felt as if I were to fall off my chair at any moment. On Thursday and Friday, I didn't even leave the house. Sometimes even the bed wouldn’t do because my back hurt too much to lie comfortably. I discovered the power of multiple pillows. Even so, the nights were marred by frequent waking up, readjusting and hoping my exhaustion would be stronger than the pain.
On Thursday night, I puked dinner out in a number of powerful gushes. This was like crossing into territory I didn’t want to inhabit for any length of time. The next morning, after I had bravely or foolhardily taken the next dose of the drug, I called my doctor. He recommended skipping that evening’s dose. The drug has a curious schedule of administration. Five days with pills in the morning and in the evening, then a break of two days, then another five days as at the beginning. Sixteen days of rest brought the cycle of four weeks to a close. The dose I was asked to skip marked the end of the first stretch of five days.
“See how you feel after the weekend”, the two-day recovery period, the doctor said. “If things are back to normal, continue as before. If you still feel bad, go from three pills to two.” I’m not happy to reduce the dosage and with it the slim hope of beneficial effects but I don’t really see an alternative. It is of course utterly unrealistic to recover in two days. If it took only two days to recover from five days of the drug, there wouldn’t be a break of 16 days after the second period of five days. I live in apprehension.
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