I stand by the comment, “Give me a bed and a bucket, and I’m good.” But things have gotten harder. And even though a friend warned me, I had no concept of how tough immunotherapy would be. It sounds a lot nicer than chemotherapy, but unfortunately it’s not.
Strange to think that the tumors in my brain are gone, yet I’m sicker than I’ve been this whole time (nausea, weakness, fatigue). They doubled my doses AND doubled the frequency that the immunotherapy is administered—so no wonder. On the flip side, this is what might help me beat this thing!
Anyway, I had a fever all night and dreamed that Mike and I were floating in a freezing ocean where all we had was each other and the occasional flip of a nefarious tail. I called in sick to work, which totally sucks! Before this cancer business, I hadn’t called in sick since 2014. I slept most of the day. Honestly, unable to do much else.
After I finally woke up, I tried to find someone else online who’s been through exactly the same situation. It took a while, but I found a man from 2018 who had melanoma tumors in his brain that went away after numerous immunotherapy treatments. But he had some other stubborn tumors that wouldn’t leave—and they just happen to be in the same places as mine (spine, neck, etc.).
So in 2018 he responded to a thread about melanoma, saying how terrible the side effects of immunotherapy were. He got massive rashes everywhere that itched like crazy. He couldn’t hold anything down, until he only weighed 120 pounds. The doctors eventually made him take breaks on his treatments for fear that he’d lose too much—and there was a comment saying how the side effects from immunotherapy almost killed him.
I read this entire story with complete interest—until it just stopped! I had no idea if the man lived or died. What a terrible feeling to not know....
But I did have his name and his wife’s name. So I immediately looked them up on Facebook. To my dismay, his wife had been put in an assisted living home in 2019. And the man himself, well, the trail went cold on his Facebook page, and I worried that maybe he hadn’t made it after all.
It might sound crazy, but I started scrolling through his stories, wanting to know more about this man who suffered from the same thing as me. It was odd because he’s also a writer. And I just couldn’t shake the feeling that I understood this person because of everything we’ve both gone through. I saw a book giveaway he’d held, some posts about cancer, and other things.
After a while, I decided to send him a message. It wasn’t a very hopeful message. And I waited most of the evening, to no avail.
Early the next day I grabbed yet another bottle of water to drink. Seems lately the main thing I can keep down is clear liquid—which totally sucks because I could really go for a hot dog with green peppers and onions right now.
More time passed, and I really started to lose hope not only for this man but somehow for myself. This type of suffering, it’s just hard to put into words. And just when I had completely given up, my phone binged.
“Yes, I am still here, “ he responded.
I know these stories might sound silly, but when something as small as this propels us through each day, well, it’s actually something quite big. I’m so grateful for miracles.
It was fun to talk with that man. Like so many other people I’ve spoken with, he gave me hope. And you know what, I just might buy one of his books.