According to the doctor today, I am probably going home on Monday afternoon. Though it seems as if the embolization did little to curb the ongoing diarrhea, I should be OK at home with the daily four-hour IV fluids and taking some oral electrolytes, as well as the three daily octreotide hormone shots. For about a week, I will also have IV antibiotics that last about a half hour to an hour every day to avoid getting a liver abscess after the embolization.
One of the radiation oncologists stopped by yesterday and she still thinks there’s a chance for improvement, but I am fairly disheartened. At the very least, if I can get the tincture of opium approved, though my health insurance still deems it unnecessary, I may not have to wear diapers overnight so much. That’s one step towards a little bit more dignity for now.
Yesterday, I was able to look to the future a little bit and hope for some tentative summer plans, even if it’s just a short train or car ride out of the city for a night or two. I can maybe order some flowers for my garden plot if I am able to plant them this summer, and I’ve made some notes about what I’d like to happen to my perennials should I not see the end of the season.
I’ve mentioned that people live for years like this, with the diarrhea and the shots and the IVs. I would not like this quality of life long-term, and my doctor knows that. I am not afraid of death; I am afraid of a life in which I have no part.
If it is the pancreas tumors that are causing all these issues, then I’m not sure how much more can be done. There is the PRRT therapy when it is approved and if I am approved for it, but I’m not very hopeful. Many of the other treatments to try to curb these effects work for other people but not for me: octreotide shots, oral medications, radiation, chemotherapy, and embolization. Since October, I have gone through these treatments one by one. MSKCC is one of the best cancer hospitals, and though there are a few other places like Mount Sinai and MD Anderson Cancer Center, I don’t think there are very many other treatments that are available or that are not known to me. I will do some research into what’s available. If there is a downside to being at a renowned cancer hospital, it’s that it especially alarming when some of the best doctors and specialists can’t come up with something.
I just met with the doctors and it really seems like everything has been tried up until this point, so the next step is meeting with my oncologist to see what the next step might be. It seems grim. People ask if the doctors have told me this is the end, and they haven’t. It isn’t hard to read between the lines. Some ask if the doctors have told me to prepare for the worst, but for me, the worst isn’t quitting this life: It’s barely living at all.
For now, something that I need to come to terms with is that I will probably never have a “normal” life again. After my embolization, during my 24 hours of hope, I thought about trying to take a vacation and seizing some wellness time, but I don’t know if there will ever be a time when I am not tied to IVs and functioning as I once did. I don’t think I’ll be able to return to working out and being a ClassPass devotee. What little muscle I’ve worked to develop over the years is gone and I have trouble even gripping things very hard.
I need to figure out how to function in the world when I can’t function as I once did. People do it all the time. When I got the news in July that I would always have cancer, I knew this day would come, though since I’m young for this cancer and the doctors were hopeful I had years or decades, I thought I had more time. Though my peripheral neuropathy has made me miserable for much of the year, I tried to take advantage of every day as much as I could.
From October through December were some of the hardest months of my life, personally, and there were times when I felt as if I were going to lose my mind. I’m more at peace now, at least, and losing my body doesn’t seem as terrible, but it’s scary. I’m not looking forward to the process. I would trade time for quality if I could. If someone could offer me a week of being well and then the end, I would do it, versus months of this. No one gets a choice though.
The plans I am going to make aren’t going to be the plans that I had thought, but there are still plans to be made. In the meantime, I am finding a way to get through the days with a certain sense of peace.
For now, I’m going to have more breakfast pizza. (I was left with half a pizza to eat, so I’m having pizza for breakfast, lunch and dinner today.) I’m waiting to get transferred to another room so I can avoid my vaguely racist roommate. There is a woodworking class in the patient recreation lounge today, and I am intrigued. After this gloomy post, it’s clear I have had too much time for self-reflection and should get out and interact with people.
I am worried I am being too dramatic and giving up too easily. Loved ones provide much-needed optimism. My boyfriend thinks there is still hope for the PRRT. My mom has hope a miracle will happen. Friends remind me that there are always treatments in the works.
I just don’t know what to do though. Sometimes, I’m overcome with the grief that’s so big, I want to run into the streets and cry for help—for something. At other times, I’m at peace and feel OK about whatever lies ahead.