I’m entering hospice. It’s time, and realistically past time. The squamous cell carcinoma tumors are growing, and the two doses of spot radiation I got on June 10 and 12 have utterly destroyed whatever quality of life I had. This weekend, a nurse came by and did some planning with Bess and me. Our extensive efforts to find and start another clinical trial have turned out to be futile, and I’ve withdrawn from the next-best potential clinical trial, BGB-A3055 in Dallas, at NEXT Oncology, because there’s no feasible way for me to do it (the people at NEXT, however, are and have been amazing: if you’re looking at clinical trials or live in Dallas, schedule a consult). HonorHealth in Scottsdale, where I live, has a TScan slot, but my physical condition remains terrible for essentially the reasons I’ve written about so extensively that there’s no need to belabor them. My days and nights are filled with unrelenting coughing, hacking, and pain. My whole jaw area is numb, likely from tumor growth. I wonder how much (or many?) of the headache I’m experiencing actually come from tumors, rather than coughing and other problems.
Why hospice? Bess wants the support, after I’m done. There are rules and bureaucracy even in death, and although she admits to being bad at asking for help, she feels overwhelmed now, and certainly will be later. Her bandwidth, she says, is only for me. The details about what comes after are too much, and too distracting.
I’ll keep reading messages until close to the end, though I may not have the strength or presence of mind to reply. I exist in a hazy, druggy fog. I’ve heard Tyler Cowen say in podcasts that he finds the fascination with people’s last words to be overblown, because at the end of life people are rarely at their cognitive peaks and often forget the constraints and desires that drove much of their lives (I’m paraphrasing and have probably gotten some nuance incorrect).
One virtue of a prolonged end is that I feel like I’ve said everything I have to say. I don’ t know that I have a favorite, but I’m fond of “I know what happens to me after I die, but what about those left behind?” Same with “How do we evaluate our lives, at the end? What counts, what matters?” I’m tempted to keep citing others, but if you scroll down into the archives you will find them. I meant to turn these essays into a memoir, but that is a project never to be completed by me. Bess assures me that she’s going to complete the project and do her best to get it published. We’ve created so much together in the process of building our life, and Bess says that doesn’t need to stop just because I’m not physically here, and that putting both our baby and our book into the world gives her immediate future the purpose that she’ll badly need.
Though having my life cut short by cancer is horrible, I’ve still in many ways been lucky. Most people never find the person who completes them, I think, and I have. I’ve been helped so much. Numerous oncologists have gone above and beyond. Many people, friends and strangers, have asked if there is anything they can do to help. The #1 thing is to support Bess and our soon-to-be-born daughter, Athena, whatever “support” may mean—the most obvious way is the Go Fund Me, as any remaining funds will go to Athena. I wish she could grow up with her father, but that is not an option. Being a single mom is hard;[1] growing up without a parent is hard; I cannot see what Athena’s future holds, except that I think and hope it will be bright, even though I will not be in it, save for the ways in which friends and family promise to keep me alive for her.
If you want to donate to research, I don’t know the absolute best place, but one good-seeming choice is the Arc Institute: “Arc researchers pursue both curiosity-driven exploration and goal-oriented research. The institute will initially focus on complex diseases, including neurodegeneration, cancer, and immune dysfunction.” They don’t have a turn-key donation page up yet, however, so send them an email and ask: “Why not?” I also got a lot of care under Dr. Assuntina Sacco at UCSD’s Moores Cancer Center, which does have a turn-key donation page. Let’s make the future better in every way than the past. Donations can be made in memory of someone who has passed.
I wrote earlier, in “How do you say goodbye?”,
The gift must be given back, sooner or later, willingly or unwillingly, and sadly it seems that I will be made to give it back before my time. I have learned much, experienced much, made many mistakes, enjoyed my triumphs, suffered my defeats, and, most vitally, experienced love. So many people live who never get that last one, and I have been lucky enough to.
One friend wrote to me: “You did good—when the time comes, I hope that brings you additional peace.” Many of us don’t get what I’ve had: the opportunity to live a full, generative life with people who I love and who love me back. Yet I was able to have all of it, for a time.
[1] Though if anyone can do it, and find a way to do it successfully, it will be Bess.
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