A Pain in the Neck

Aside from my body actively trying to kill me, everything else in my life has been going pretty well. I just need to stop dying. I’ve focused all of my energy on trying to get the last cycle of the PRRT treatment that helped me last time and had given me a year of wellness.

Throughout these past months, when it was clear the tumors were returning and spreading, I didn’t allow myself to think one thing: The PRRT might not work.

I have more tumors this time: They’ve spread beyond the pancreas. I was sicker going in this time. I don’t know. All I know is that I was feeling a bit better for a few hours, spiked a fever, was given antibiotics and now I’m almost back to where I was. My only hope is that it’s the antibiotics that are making me so sick, since taking IV antibiotics for my pneumonia last year landed me in the hospital for three days last November. I have a blood infection again, according to the tests. I hope I don’t have to get my MediPort taken out and then re-placed again.

My cancer is aggressive and it’s spreading and it’s doing its own thing. I have an extremely rare subset of cancer within a rare cancer. Most people get 30 months of relief with this treatment and the estimate for me was an accurate six. Yesterday, I clicked on a link posted by the Neuroendocrine Tumor Research Foundation about a dying young father who wrote a book for his son as part of his legacy. His tumors, too, didn’t act like they were supposed to act. He died at age 36 in December.

It was a feel-good story but it was also sad. I wonder sometimes if I’d rather have no story to tell. When I read Cutting for Stone by Abraham Verghese, this quote stuck with me: “’Another day in paradise’ was his inevitable pronouncement when he settled his head on his pillow. Now I understood what that meant: the uneventful day was a precious gift.”

I feel like I’ve made some sort of devil’s deal or a Monkey’s Paw deal where I’ll be happy for a year but the price is my life. I don’t remember this deal. I keep expecting an old crone to show up to remind me.

Still, I would have rather had this year than nothing. I just want more.

Yesterday I felt triumphant, and today I feel defeated. Yesterday I was planning on what to do with my few possible remaining months of wellness, and now I might not have them at all. Granted, a few months aren’t much either, but they were better than nothing, which is now could be what I am left with.

On Monday, I was too weak to make it into the office so I worked at home then took a Lyft to MSKCC in Brooklyn for fluids and bloodwork. Then I had to take a Lyft into an attorney’s office in Manhattan to sign something, a settlement of an old debt someone owes me. (So that is a good thing, plus I’ll have a tiny bit of cash coming in after my death either for the cats or for keeping my blog up for a bit.) On my way into the lawyer, I got the call from Sloan-Kettering: My electrolytes were too off for PRRT the next day, and could I come to urgent care?

And I’ve been here since. Yesterday they pumped me full of fluids and did the PRRT, my final dose, in an attempt to buy me a little bit more time. I was so happy. Very sleepy, but happy. My oncologist popped by to see me afterwards. This could cause bone marrow damage and I may not ever be 100% but I want to have a little bit more time.

This past year has been bittersweet, and I always know that when I see someone, it could be the last time. I’ve tried to visit my far-flung friends across the globe (Dublin, Copenhagen, Nashville, Los Angeles, Washington D.C.) and traveled with old and new friends (Cuba, Spain, Holland, France) and still barely made a dent. I made it to Ohio only once, to Cleveland. Columbus still holds too many memories. Most of them are good, but I’ve found myself unable to return. If I had more time… But I don’t.

When I was finally done with my fluids and a flurry of blood tests, I had my last PRRT. As a graduate, I got a “Fabulous” and superhero sticker. I finally did it and felt triumphant, even though all I did was beg and plead. I felt a little better, but then I had a temperature and I’ve been taking some antibiotics, and now I don’t feel much better. I’m still holding out some hope that stopping the antibiotics once this blood infection clears will help.

A lot of people came together to make this last treatment happen, and I’m extremely grateful. I think at the very least, it will help a little while I prepare for the very end. I’m grateful for all the research and hard work and kindness from Memorial Sloan-Kettering. They’ve kept me going for six years while my body has been actively trying to kill me through cancers. It’s been hard: chemo, radiation, stem cell transplant, Whipple procedure, ablation, embolizations, Mediports and PICC lines in and out. I’ve collected my own poop. I’ve coughed up pieces of my esophagus. To be free of this body will be a relief, but I’m not quite ready. Not quite.

Now I wait to see how the PRRT did and to clear the infection from my blood. All isn’t lost quite yet.

As I shuffled back from the bathroom to the room where I was being prepped for embolization, I heard my friend/former freelancer/catgodmother tell the nurse, “She means a lot to a lot of people, this one.”

A year ago, I remember crying in the same room as the doctors re-placed my MediPort after a blood infection. I’d felt abandoned, despite being surrounded by people. I burst into tears when they asked me who was picking me up. My new healthcare proxy picked me up that day, and she was there after this procedure too. We’d forgotten who I’d named my healthcare proxy, and I’d narrowed it down to three people. “I’ll use that to get in,” she said, adding she’d thought about telling the doctors she was my domestic partner or fiancee. But that position had already been taken. “I told everyone I was your fiancee,” whispered my boyfriend after I woke up from my procedure. “I didn’t know if they would let me in otherwise.”

From now on, I encourage everyone who visits to claim to be my fiancee and leave the hospital staff wondering.

I feel so different from a year ago. I had been surrounded by good people then too, but I had been alienated from the good for awhile.

I wish I didn’t feel so physically terrible. I’m back pretty much to where I was the January before last and the ensuing months, when I needed daily fluids. On Tuesday, I spent the night at urgent care for low electrolytes. I had been trying to wait until my IV fluids, but my heart had felt funny, and I was more lightheaded than usual, and I didn’t want to die at my desk, because not that many people sit around me and no one might notice until the web requests started piling up, unanswered.

On Monday, I got a call that I was slated for my last PRRT dose. (Through a spectacular misunderstanding on my part, I didn’t get it weeks ago, as I’d hoped. I also had to wait for insurance approval, which takes weeks.) “All I have to do is get through the next week,” I thought. It’s proven to be more difficult than I thought.

I also need to keep my platelets up, and they dropped after this embolization. The hope is that the embolization would relieve some of my symptoms, but so far, I feel worse. Part of it is because of post-embolization syndrome, which causes nausea and fatigue, and the other part is because I am on post-embolization antibiotics. Antibiotics tend to make me pretty sick, and I had to go to urgent care in November after a few doses.

If I can’t get the PRRT, then it’s just my time to go. I have to sign some legal paperwork on Monday and publish some calendar events for work and wrap up a freelance piece, but then I think I am free to go. I was hoping for a few months of wellness and some time to organize my affairs. But if it’s time, it’s time. I fought, off and on, for six years. I’m tired. I feel awful all the time. I’m ready to go if my platelets are too low for this last dose. I’ve had a good run.

As a writer much better than me once began a famous novel, “It was the best of times, it was the worst of times.” I don’t know much of the story beyond this, because A Tale of Two Cities is one of the few high school honors English required reading pieces I didn’t finish, even though I am a goodie-goodie. (Sorry, Charles Dickens.) I didn’t follow the stories of London and Paris during the French Revolution, but the book had a good opening line, and I feel like it has applied to my life the last year.

I have a picture of me from last July, smiling, floating lazily in a pool. Upon closer inspection, you can see that my pool float is actually a poop emoji. I feel like it was a visual representation of the time. I’d been going through a lot of crap and I was trying to stay afloat and upbeat. For the most part, I think I succeeded. By then, I had received PRRT and was feeling better than I had in months.

One year ago, they told me I had about a year of wellness left. I look back on that post and realize I couldn’t predict what was in store the next year. Last year, I seemed like a different person. I was so naive, in some ways. I was so worried about missing the Game of Thrones finale. How could I have known it would be so disappointing?

I had been hoping for more time, but almost exactly one year from my first PRRT, I started feeling sick again. My time is up. A year passed so quickly. When I had my first treatment, I felt like my life had been turned upside-down. I felt betrayed and alone and after months of being hooked up to IVs and feeling constantly sick and like a burden, I was ready to die.

Then I was given the gift of a year. At the time, I was in a haze, sad and defeated. Now that I’ve tasted life again, I want more time. Death is coming for me again, and I’m not ready. I recently tried a chemo drug that made me feel worse, and now, almost as a last-ditch effort, I’m getting one more round of PRRT, at a half-dose, now that my blood counts have finally come up a bit. I think it will buy me some months. And then, that’s it, I think.

The PRRT is slated for this Friday. I just have to stay alive and keep up with my potassium and pass my blood test tomorrow. Then, when (hopefully) I get the treatment, either: 1. nothing will happen, 2. my blood counts will drop and I’ll feel worse or 3. I’ll feel better. I need to feel better. The stakes are higher this time, because I want to live as much as I can while I can. And there’s nothing after this, it seems. It’s just a precipitous drop back into illness. I am scrabbling at the sides of this cliff. I’m clinging to the face of a rock with dirt-stained tear tracks on my face, begging for just at least a few more months, as my fingers lose their purchase and rocks pelt me from above.

People who love me are confident I have more time. I am less confident.

I find myself saying probably what most say when death comes. It could probably be engraved on most tombstones: Wait, I’m not done. I had more to do. I’m not ready. Just give me a little bit more time.

You can’t tell that I’m dying now, because I’m trying so hard to keep living. My mom recently visited for a week, and she said that she couldn’t tell I feel so sick.

I asked a year ago: What would you with one remaining year of life? I know the answer now, for myself. I tried to cram the rest of my life into it, the years, the decades I feel will be stolen. I worked. I wrote. I took a memoir-writing class. I resumed working out. I traveled: I went to Ireland, Denmark, Holland, France, Bermuda, Cuba, Spain, Los Angeles, Nashville, Cleveland, Washington D.C. I spent time with so many of my favorite people. I visited with friends, from Copenhagen to Dublin to L.A. to Nashville. So many friends visited me. My bathtub is lined with shampoo bottles from so many visitors.

I reconnected with people who had always been there for me and will always be there for me. When I went in for a scan recently, someone gave me a hug and reassured me, “You’re not alone.” I realized then that though I had started the year feeling abandoned and alone, I hadn’t really felt alone at all this past year, surrounded by so much love and support. I had felt lonelier and more isolated before this past year, as it turns out. I have been enveloped in goodness.

Along the way this past year, I met new people and made new friends. I fell in love.

I probably wouldn’t have done the last thing if I knew how limited my time was. Sometimes I get angry at myself for allowing myself to be optimistic, to hope that I had more than a year. I had started looking beyond my year, and then the curtains abruptly closed. It’s bittersweet.

This past year I healed, if not from the cancer, then from the inside. I hadn’t realized how broken I had become. It’s been one of the best years of my life. While I recovered from my first PRRT last June, as I watched Under the Tuscan Sun at more than an arm’s length from my friend whom I had to stay with while radioactive, I wondered aloud what to do. “I can’t be sad,” I said. “I have only a year. I don’t have time to be sad.” I couldn’t mope about the breakup. I couldn’t waste more time being angry, because I’d been angry for more than a decade already.

In February, I experienced a loss so devastating, I could barely get out of bed. But the clock was ticking, so I had to pick myself up, dust myself off, and keep going. If it would have been a physical manifestation of how I felt, I would have had teeth knocked out, bleeding, with a black eye, limbs askew. “I’m OK!” I reassure everyone, dragging myself forward.

I tried to find inner peace at meditation centers, in church pews, on yoga mats, in hypnotism. I allow myself to be sad, but I also don’t have time to wallow. I still find moments of peace. I watched the Fourth of July fireworks with some of my favorite people on a friend’s rooftop. Yesterday, I walked along the Brooklyn waterfront, the sky a sunset lavender behind the Statue of Liberty. I was heading back to my blanket to meet my friend and boyfriend on a beautiful summer night for an outdoor movie. I felt at peace.

I’m so happy. I’m also really sad. I’m scared for the possibility of disappointment that lies within the next few days and for the coming months.