A Pain in the Neck

As I noted, I was supposed to be in Pasadena last weekend for the Cure concert and to see my LA friends. I require daily hydration and am not excited about traveling with an accessed Mediport and fluids and possibly faulty legs prone to giving out unexpectedly. So I stayed here. New York City is my favorite place, and it’s the center of the universe and it has my heart, so it’s not so bad. New York and I are a week and a half from celebrating 11 years together. (Well, I am celebrating. NYC likes to play things cool.)

We did a staycation, first one night at the Dream Hotel, then the second night at the Gansevoort Hotel a few blocks over. Most of the time we lounged by the pools, aside from a detour to Memorial Sloan-Kettering for fluids. (To have my port accessed and then de-accessed for pooltime, I went in for fluids.)

I rallied. I went to a backyard barbecue in Brooklyn last Saturday, did some light gardening on Sunday, ate a Labor Day hot dog—a chili dog, in fact—last Monday. This week I went to a storytelling event and comedy show and to the office and to a birthday party. “You don’t look sick,” some people tell me. I notice that my bicep is as big as the chili dog. My guts roil. My insides hurt. Since I am only going to get worse, I’m trying to rally as hard as I can before the end. But I never feel well.

I had fun on my staycation, but sometimes I’m tired of making lemonade from this pile of lemons. At this point, I feel like my hands have been sliced up with a mandoline, and the lemon juice stings. I can’t bear to make or drink another glass of lemonade. I’m out of sugar and it’s sour and makes my cheeks pucker. I’m out of patience. I’m out of metaphors. I wish I were Beyoncé and my lemonade made me millions.

I had my first post-PRRT follow-up with my oncologist, and I brought my health care proxy and my “bad cop” who comes with me to doctor appointments. We were armed with questions about hospice and any possible last ditch treatments. After my New York Times article, people had offered their top health care advocates and services like Cancer Commons to leave no stone unturned. The info was ultimately helpful, but the main downside of having the best doctors at one of the top cancer hospitals is that they’re aware of everything that’s out there, unless there’s a mad scientist on a rainy mountaintop with a bag of radioactive spiders sewing brains into repurposed bodies. Once they say there’s not much they can do, that’s kind of it.

And there’s not much they can do anymore. I knew this day would come, but I’d hoped the PRRT would buy me some time. It didn’t. One thing that came up with the health care advocate and a conversation with someone on the Smart Patients website is Keytruda (also known as Opdivo and prembolizumab). It’s not approved for neuroendocrine tumors because the immunotherapy hasn’t worked for a lot of people. They’re getting a compassionate release.

Right now, my tumors hurt and they feel like they’re spreading. I feel worse every day. I’m tired. I have to do IVs and supplements all day. I rally but it’s harder. The side effects could be bearable, though it also could make me feel worse. It works better with other drugs, like Yervoy and PV-10 (sometimes 19% rather than 3%), but those could give me worse side effects. It’s a Hail Mary pass. It’s unlikely to work.

My first infusion is September 18. I have so much to do before then. I’m wrapping up work before disability. I hate the idea of not working. I can’t do any work at all so I’m frantically writing and submitting before September 17, my last day of work. My mom is in town.

Today I decided where I would like to die. I had plans to tour three Calvary Hospital facilities. My oncologist and I talked about what to do when the pain and side effects when they become unbearable. I have decided to stop electrolytes and hydration when that is the case. The best place would be inpatient care, but I would probably have to do home care first until I declined enough to qualify for facilities. The Bronx facility is nice but far away.

I was told I could just pop by for tours of the Manhattan and Brooklyn facilities. When I got to the Manhattan location on the Upper East Side, I just didn’t get a good feeling from the moment I signed in. When I went to the 15th floor Calvary area, I stopped at the front desk and told them I was going to take a tour. “You’re going to have to wait because we’re in a meeting,” said the nurse. “How long?” I asked. “Ten minutes,” she said, before disappearing back into her meeting. I wanted to joke that I had less time than most, but I bet most hospice-type places get that a lot. Plus the nurse was gone, and there was no place to sit and my bones hurt sometimes. I wandered the hall for a minute then left. If I didn’t like it for the eight minutes I was there, I wouldn’t like to die there.

Next up was the Calvary location at NYU Langone in Sunset Park. Not too far like the Bronx or too rude like the Manhattan location, I decided that was a nice place. I’m still too well for hospice but once I stop taking my hydration and electrolytes, I decline fairly quickly. My main concern is that the side effects of the Keytruda might push me into hospice or my tumor symptoms keep progressing rapidly.

I have so much to do. And this is a deadline. An actual drop-dead deadline. I won’t ever get married or go on another vacation, but there’s a lot of weird little things I think about. I’m afraid to start watching a new TV series. I have a bunch of books to read. I waited too long to buy photo frames for my Spain pictures. I am annoyed I have to buy so many garbage bags in a pack when I will be around to use how many? Six? Ten?

People kept asking when they could drop in to see me, and I won’t be accepting visitors for much longer. I spent this past year saying goodbye. I’m tired. Everything hurts. I am stealing my former neighbor’s “living wake” idea and having kind of an extreme going-away party on September 14. I want to be around for my own party. I know that’s not for everyone, but I think of all the chances I missed to say goodbye to friends who died young. It will be celebratory: a happy time in the midst of a greater sad time.

I Google the hopeless statistics and cry a lot too. I didn’t get an extra few months of wellness. I’m angry. I’m sad. I’m tired. I’m disappointed.

As I spoke to the supportive care people about end-of-life things at Memorial Sloan-Kettering, someone said I seemed very matter-of-fact. Sometimes I am going over something with a friend/loved one and their faces have crumpled and I have forgotten that I’m talking about my death. It’s another to-do sometimes. I’m maybe not dealing with it properly.

Sometimes, when the pain in my right shoulder is too much or I feel too sick or my IV pole has fallen over again or I am taking hateful shots of potassium, I look forward to the end. I want to be free of this broken body already. I don’t want to leave, but the next step is off a cliff into the unknown. It offers nothingness. It offers freedom.