Monthly Archives: August 2024
“No Salt”
This is by my brother, Sam.
I arrived to Arizona late Saturday, after learning that my brother has only a few days left before cancer ends him. Jake’s wife, Bess, confessed that she had neither the willpower or the energy to take care of the post-death rituals—in this case, cremation, followed by a celebration of life at some point in the future. Likely at a memorial bench at Stuyvesant Park in New York City, where he and Bess built their life together, met their core group of friends, and made their fondest memories.
I do a lot of research, and finding a funeral home for my brother’s remains was and is quite a bit different than looking for, say, a great sushi restaurant. What should I look for out of a funeral home? Do they have five stars on Yelp? Do they seem “nice?”
Several funeral homes that had good reviews online. The folks on the other end of the line seemed nice. They said the right things, which makes sense because they’ve got a sales funnel. And then they asked for a credit card. I get that funeral homes are businesses that need to make money, just as most of us do. It still feels callous and transactional. Send me an agreement, or something. I’ll DocuSign it. You’ll get your money. I’m barely functional at the moment—sleepwalking through my days as if I will somehow wake from this nightmare, watching my brother and his wonderful wife fall into despair.
Prior to his illness, Jake and I had been at odds for many years. I didn’t understand him, and neither did he. Both of us lacked the emotional maturity to form deep, meaningful relationships with other people. In my case, this manifested in self-destructive behaviors like drinking, partying, womanizing, and things of that nature. For Jake, he withdrew from most of society, finding more comfort from the pages of a novel or the many works he himself has written. He eventually found meaning in teaching, and focused on his relationship with Bess.
In turn, I eventually found a partner and a wife who made me a better person. Somehow, both of us found our way to psychedelics as a way of dealing with reality and exploring the deeper, more esoteric corners of the world. Over the last two years, Jake and I have talked extensively about our experiences with these substances. Therapy has never worked for me. As Terrence McKenna once said, “The real truth, that dare not speak itself, is that no one is in control. Absolutely no one.”
This is not meant to disparage therapists, advocates, or grief counselors. Each person must find their own way to deal with the reality that we perceive: what works for one may not work for others. Changing your life is difficult. It requires hard work. But your life may depend on it, so stop procrastinating and find something that works.
Besides psychedelics, Jake and I have discovered over the past year that we share a love of cooking, particularly using modern gadgets like Instant Pots, sous vide, and interesting spices. Jake loves his plug-in induction stovetop, and thinks it worthwhile despite its cost. At one point I was supposed to go to the final auditions for a show called MasterChef, which pits amateur cooks against each other behind the gentle coaching of Gordon Ramsay. I foolishly accepted a job offer instead, but perhaps I’ll try again someday in honor of my brother.
Which brings me to the title of this essay. When I arrived at their home yesterday, I observed Jake in the worst condition I’ve ever seen: emaciated, with obvious tumors rampaging throughout his neck and jaw. Bess is seven months pregnant, worrying about the impending death of her soulmate, clinging to what seems like an irrational hope of a miracle turnaround.
I noticed an extremely uncharacteristic lack of food in their home—usually, when I walk in, Jake offers something to eat even when he knows I just ate—so I immediately went to the store to at least ensure that Bess had some food. Jake can scarcely take a sip of water, but says that “normal” food feels more wholesome going through his PEG tube than the brown, yet nutritious, Liquid Hope that gives him most of his daily calories.
Jake still has a larder of dried goods, spices, and gadgets that would be the envy of even a professional chef. Fenugreek sourced directly from Egypt. Fermented locust beans from Nigeria. More forms of masala and curry than most Indian restaurants. I had ambitions to use these spices for what Jake labeled as “possibly his final real meal,”1 only to realize that antibiotics have ruined his gastrointestinal system to the point that making anything exotic might bug his stomach.
So I opted for something simple: a shakshuka. Tomatoes, vegetables, sauce, and mild flavorings, topped with feta cheese, eggs, and basil. I reached for the salt, and found the bottle empty. I’m not sure why, but I started weeping. No salt. No salt means that he’s not cooking. He’ll never cook again. Salt is the most basic ingredient. Food is (was, I guess) so important to him. He cooked for Bess throughout the summer of 2023, when he couldn’t eat anything except by PEG tube.
I’ll go over to their house again later today, and make sure I cook enough food at least for Bess to be able to eat, and hopefully for Jake to eat via the tube. I’ll stop for more salt on my way.
If the salt is gone, then Jake is too.
- Jake’s wonderful friend Tracey Dempsey also dropped off a plethora of baked goods. Everything she makes is incredible, but I’m partial to the cheesecake. ↩︎
Starting hospice. The end
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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