Wednesday, April 29, 2015

ONT-10/Varlilumab Clinical Trial & Coming To Terms With Being A Fat Old Lady

I'm one month in on a clinical trial of cancer immunotherapy. Every week, I fly to Denver and have four subcutaneous injections (plus a blood draw, natch') and then every three weeks, I also have an infusion. You can read the details here ( Immunotherapy has been in the spotlight of late, and some people have been on the maintenance regimen following this trial for a long time, so it's very exciting for me to be involved. It's not a traditional chemotherapy that kills all fast-growing cells. Rather, it is an agent that encourages my own immune system to attack the cancer. The only discernible side effect I have experienced (other than owies at the injection sites) has been fatigue, although I'm guessing the researchers would argue that I'm tired from traveling across the country and back every week. It could also be cancer fatigue. We won't know until I get scanned.

I used to place a lot of faith in my ability to sense what's happening in my body, but now, I'm less sure. Before the last scans, I felt a lot of pain in my liver and thought for certain the carboplatin and gemzar regimen I was so seldom able to actually receive was not working, when in fact, it had decimated the tumors to sub-centimeter size. At least I know I have that regimen in my back pocket if this trial doesn't do anything for me.

For now, I am enjoying a life off chemotherapy. What does that mean? When I cut myself, it clots. My bald spot seems to be filling in, and I am nowhere near as winded as I was when I hardly had two red blood cells to rub together. 

Now, I'm just a regular old fat lady and that's hard for me to find peace with. We went skiing in Utah three weeks ago and I twisted my knee, so I've gone to various  care providers for help. They all ask me terrible questions like, "Are you an exerciser?" The fuck? Maybe that doesn't seem like a terrible question to you, but when you have lived most of your life as a very fit, active person, realizing that someone has to use such a delicately phrased question when talking to you because they literally can't tell if you spend your days sitting on your ass eating donuts stings. A lot. Compound having to face this incredulity every time I enter a doctor's office with the reality that, now that have been neutered, I have to restrict my eating to a fraction of what I have always eaten, and you have a very dysphoric individual. I am sure anyone over 60 is laughing at my anguish, but I never got the opportunity to go gentle into that goodnight that is full-blown menopause; it was lights-out on my ovaries less than two years ago. I think I'm just feeling very sorry for myself at the moment, too, because with this messed-up knee, I have not been able to be an "exerciser" at all. I am also realizing that I must look really pathetic trying to get involved with any dance, and that hurts my soul, too. I don't want to be some irrelevant, gold-shoe wearing, thirsty-ass old lady everyone is rolling their eyes at. The problem is that I am unskilled at being a 40+ year-old woman. I don't know how to be normal or what that even looks like. My life has been thrown so far out of the orbit of normalcy, that I don't even know which end is up. I'm bored and spinning. I'm uninspired to right myself. I feel lost. 


Your mother said...

When your knee is better, you need to forget about being an old non-gendered person and get out there and take a dance class. Look around, you are genetically in better shape than about half of the other women in the class. Even if you have to wrap your knee for the class, do it. (I don't agree with the therapist who says "don't wrap the knee", do your exercises unwrapped but to function securely, wrapp.

You have never been just normal, Paula. According to the book that I am reading, you, Dina, I (and yes, Nicole,) are definitely and always will be peculiar. Don't let the Hollowgasts get you down. Don't stay in the bog, keep dancing.

Anonymous said...

Are you still on the ONT 10 & Varlilumab trial? I'm interested in joining it. I am also near Chicago - sure would be nice if they had it closer.