When I have been in the hospital, I have been seen by a variety of teams: the dewy-skinned dermatologists, the inexplicably large neurology group, the gastro doctors. In August, the kidney doctors visited me several times. “We just have to stop the diarrhea,” they said matter-of-factly. It made me laugh because that’s all we’ve been trying to do for years. If it were that easy, we would have done it.
The PRRT helped a lot for a year, until it didn’t. Now I’m reliant on daily IV fluid for hydration and balancing electrolytes, replacing all the potassium, magnesium and sodium bicarbonate I’ve been losing. My type of neuroendocrine tumors are not only particularly aggressive (my ki-67 markers are 40% when most other people have 1% or 10%), but they also are a rare subset that produce VIPoma, a hormone that causes Verner-Morrison syndrome, which has a cholera-like effect.
It’s a particularly humiliating way to go, but I’m constantly reminded when I see other cancer patients that there’s no such thing as a good way to go. Every cancer is uniquely horrible: the brain cancer patient who had to have things manually expelled from her chest, the head-and-neck cancer person whose facial bones were painfully eaten away. People holding bags of bodily fluids, oxygen tanks. There’s no beautiful Hollywood death where you just get a nose tube or an IV bag. Cancer is messy and disgusting and like snowflakes, uniquely terrible for every single person who has it.
I actually read an article about how neuroendocrine tumor patients, who often have pancreatic tumors, don’t have the weight loss of the pancreatic cancer patients. People often say I don’t look sick. (Though now that I’m down to 86 pounds, I do look a little gaunt.) Steve Jobs, Aretha Franklin, and Rainè Riggs (Bernie Sanders’ daughter-in-law, who died two days after her cancer diagnosis), all seemed to look OK up until the very end. I mean, Aretha Franklin had three outfit changes at her own funeral and looked better than most of us while we’re still alive. So at least I look OK for now?
I had a CT and a dotatate scan on Monday, and I met with the doctor to discuss it yesterday. My lymph nodes and tumor sites have been hurting, and it seems as if the Keytruda (pembrolizumab) hasn’t been working. The scan results weren’t quite ready for review, but it looks as if things are kind of holding steady. It’s not the “cancer everywhere” report I was expecting. This would be good news if I felt better. But my quality of life is just OK at best.
So what now? I’m slated for another Keytruda appointment in two weeks. Something’s happening. I just don’t know what. Last night, I had to take a oxycodone in the middle of the night because my tumor sites hurt so much. Are they just inflamed because of the immunotherapy? Are they growing? Are they shrinking? No one knows.
I’m in pain. The doctors are trying to manage my electrolytes and balance them so I’m not so fatigued. I don’t know what to do. The other day I was so miserable I was ready to go to hospice right away. My plan was for hospice in mid November; I even started packing up my stuff to give away.
I wish it would it were to stop the diarrhea. It’s what we hoped to do with the last dose of PRRT. It seems impossible to do with these tumors.
I know that my cancer is aggressive and that any time purchased may not be of good quality or for very long. I just want a few months of normalcy, but I don’t think I’m going to get it. I would eat radioactive spiders. I would go to a creepy mansion on a hilltop and be sewn into a new body. I’m in the process of hanging on and letting go.