A few weeks ago, I pulled my clothes hamper on wheels behind my back from the laundromat, and my pants fell down. They were jeans that fit when I bought them out of necessity about nine years ago when I got nearly all the way to Montauk (during an overnight escape from our old Clinton Hill apartment that had flooded with storm sewage water) and realized when I rifled through my bag in the parking lot of Cyril’s Fish House that I’d left my jeans I meant to pack neatly folded on a dresser. At one point, these J. Crew jeans had even been a bit snug. Now they were at my knees as I shuffled up my stairs.
With the VIPoma compromising my digestive system, it’s sometimes like I’ve been granted a wish to eat and not gain weight, but it’s at a terrible cost, like in The Monkey’s Paw.
On Wednesday, I went to see the doctor and had another round of Dacarbazine in an attempt to control the symptoms caused by these hormones the tumors are producing. The doctor lowered the dosage a bit, since I felt pretty bad after the first round. Though I’m far from better overall and they acknowledge that I’m not where I need to be, there has been some improvement, so they’re going to continue with the chemo every three weeks and the three shots of octreotide every day. (Unfortunately, I’m running out of non-bruised places to do the subcutaneous injections.) I no longer have to take the phosphorus or sodium chloride, so I’m down to the lomodil every six hours, Zenpep for digestion with meals, gabapentin when needed for my neuropathy and twitchiness, and Levothyroxine for my thyroid. My potassium is low, so they gave me a boost and I’m taking four of those every day. It’s a marked improvement from when I was getting out of the hospital, and though I have been discouraged at the hours of daily home IV fluids and the injections and the diapers and just generally not feeling that great, at least there has been improvement—and getting me out of the hospital and home has been a great feat.
The doctor and nurse said something along the lines of, “We don’t want to alarm or scare you but…” Thankfully it was in the context of the past with an eye to the future. VIPoma symptoms can be fatal, and I get the impression I was a little closer to death in January than I realized. At one point during an early part of my hospital stay, I told my boyfriend that I really felt like I was dying, and there was something in my voice that alarmed him. (It was, I’m sure, different from my tone when I say I’m going to die of boredom when I’m suffering through a singer-songwriter performance or when I asserted that if it were possible to die of jealousy about his upcoming work trip, I would.) Someone who had been a paramedic said that part of the training he received was to listen for that in the field; when people say in a certain way that they feel they’re dying, they know something. It felt different. That night I called my mom, and I don’t remember through the hospital haze, but she says that I said, “Maybe you better come and visit,” and her heart sank. She’s coming again next week, and I don’t plan to be in the hospital this time, and while we won’t be zipping around the city, hopefully we can have a more normal visit.
I also got my PICC line removed, and my Mediport was used for the chemo, hydration and potassium. It’s nice to have my right arm free again, though I have to leave the needle in the Mediport for my daily IV hydration infusions and it’s a bit bulky. Plus it’s not particularly conducive to the more crowded trains during rush hour, when a crowd surge made me worry it was going to get pulled out, but I’ll probably get used to it. My needle needs to be changed once a week, just like my PICC line dressing.
No makeup, modeling my new port during chemo.
The plan, for now, is to continue with the hydration, octreotide and the chemo. I asked about the PRRT therapy that was just approved in late January, and it looks like it’s another month out from being available. I also asked if it would be a good fit for me, and there’s good news and bad news. My tumors have the receptors and that would make me a good candidate, but there’s a 1 percent risk of bone marrow issues/leukemia and I’ve already had a blood cancer with the Hodgkin’s lymphoma. It seems like if there’s a slight risk of something not working or being negative, I’m often in that category. On the other hand, would the VIPoma kill me before the risks would even present themselves? It’s not really completely up to me, of course. I’d like to do anything that could help to relieve these symptoms.
For now, I’m doing OK, but not great. I would love to be a little bit closer to “normal,” whatever that is. I make it to work and back. I have been able to venture out now and then for lunches and dinners, and that is progress. I’m sick, but I’m not as frail and sickly as you might expect. During all this time spent at home, I’ve managed to catch up on a few things, but I will never run out of things to do. I baked a cake, made some crafts, reorganized some things, done some garden blogging and planning, updated my freelance clip section of my website, got some reading done, put some clothes up on Poshmark, and have started about three longer blogs that are always sidelined by other things—mainly cleaning or dishes. I may have also taken the occasional cat photo or two. At this point, I’m a little bit hopeful, at least, that I can buy a little bit more quality time.