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.