I feel guilty not letting people know how I’m doing, especially given all the support I’ve received. The least I could do is keep in touch, let you know what’s happening.
I went through a pretty intense period of depression. I think it comes with the time of year — my recurrence was diagnosed at the beginning of July, and instead of basking in the warm weather and long days, I just get really really sad. Like, couldn’t stop crying sad. Secretly (or maybe not so secretly) crying in public sad. I went to my psychiatrist and he got me back on anti-depressants and it’s helping but I still can’t talk to him really. I don’t know what to say. I sit in my sessions watching the minute hands sweep around the clock, crying, or just sitting silently.
I’m still in the clinical trial, still going to Detroit. For awhile, I was going every two weeks. But I just had a CT scan and if it shows things are good, and good means stable or maybe even slightly smaller, then I only have to go once a month. That makes me happy. Going to Detroit is hard. It’s hard mentally and emotionally and physically and financially.
I’ve been a shut-in, too. Part of that is the depression. Part of it comes from physical side effects from the treatment and the disease. The drugs I take causes fluid to build up in my abdomen at a much faster rate than before. Once a week, I was having two litres drained. Then I got a blood clot and had to go on blood thinners and my doctors wanted me to get drained only every other week, but that’s left me in so much pain and discomfort that it’s all I can do to just sit at my computer and work and lie on the couch and watch hours of Netflix or read hundreds of pages of books. So fuck the blood thinners, I’m getting drained once a week again.
My blood protein levels are really low, too, maybe because of all the ascites I’m having drained from my abdomen, maybe from the drugs, maybe from malnourishment because I can’t really eat the way I’m supposed to, but that means I get really tired and sometimes my legs swell up with edema and it’s really painful. Traveling makes it worse, which is one of the reasons Detroit is physically challenging.
I throw up a lot, too. Just randomly. Sometimes right after eating, because my stomach is compressed by who knows what, tumor, fluid, intestines floating where they shouldn’t be, but sometimes just randomly for no reason. It makes it hard to go out when you’re never sure if you’re going to need to puke suddenly. The heat and humidity makes it worse (not that there’s been much of it, for which I’m grateful).
For awhile, I was ready to just quit the trial. I’m so uncomfortable so much of the time, it’s hard to know if it’s worth it. Especially because it’s hard to know what discomfort is from the disease and what is from the drug. Being on an antidepressant has made it easier for me to just sit and wait for the scan results and make a decision based on that. My last scan was good, stable at least, and my tumor markers are lower. But it’s hard to feel like a drug is doing something good when physically you feel just as bad as you did off of it. Maybe not just as bad, just bad in a different way.
I’ve been lonely, too, I guess because of the shut-in thing and the not going out and the depression and not telling anyone about it. I need to learn how to socialize differently, to ask people to come to me because it’s just too hard to go out right now. So you know, if you want to come over and watch movies with me or just drink iced tea and hang out, let me know. I’ll be gone for a couple weeks, but when I come back I want to try to start living like a person again, at least a little. And I live in a nice new apartment now that’s beautiful and cool even on the hottest of days. You can even bring your laundry if you want.