August 23, 2023

My brother delayed his cancer treatment for over a year. He was convinced his stomach problems were the work of parasites, the result of living in the Georgia woods. It was anal cancer. So it wasn’t much of a shock to either of us when his Portland oncologist said that his cancer was Stage 4, having metastasized into other parts of his body. Unfortunately, Ron still believes that it is possible to shrink his tumor and cut it out. His entire body is now the tumor.

I’ve been split into multiple roles since bringing my brother back to Oregon. One is to help him get the medical care he needs to fight his cancer. But another is to try to get him to be realistic about the prognosis. The doctors get paid to treat so that’s what they want to do. His doctors want to fight the cancer to the bitter end, and this end is very bitter. Last week his palliative care nurse was finally honest with him. That, at best, he had “several weeks” before the cancer takes him. A hospice social worker told me yesterday that, because Ron is severely underweight, “he will live longer off the chemo than on it.” I write this while he is sitting in the OHSU Knight Cancer Institute receiving his second chemotherapy treatment, knowing this cure may kill him.

I 100% get where my brother is coming from. If someone in the medical field told me, “You’ll be dead by Halloween,” I’d say, “Well, we’ll just see about that!” And then I’d throw my spinach smoothie in their face. Ron wants to fight and that’s a good thing. But it’s also time to talk about the endgame and how going out on his own terms might, just might, be better than barfing up endless chemo treatments, praying for it all to end, on the outside chance that a few more months of misery is worth it. This has to be his choice, but my brother doesn’t have a very good track record for making good choices.

So we’ve begun talking about hospice care. The word “hospice” has a specific connotation for a lot of people. Images of terminally ill elderly people on deathwatch, being pumped full of so many narcotics that they don’t know who they are. Hospice care has evolved greatly over the last few decades and is now all about quality of life, not just managing pain. Ron’s already on Methadone and Oxycodine, so he’s got the narcotics covered. But the chemo is not adding any quality to his life. The poison is stealing it from him. Medicaid in Oregon gives you the choice – chemo or hospice. If you want to bail on the chemo, the state makes sure you are taken care of. But you can’t do both.

So this is my brother’s conundrum, to receive the full care that comes from hospice, he has to give up on the (extremely slim) chance that chemo will “cure” him. He tells me he thinks that chemo will get the tumor (again, the cancer is now in several parts of his body) to a size where his cancer will be “manageable,” and I ask him what manageable means to him. His response is that then he can treat it with good diet and live a long life in a cabin in Tennessee. He then accuses me of wanting to “kill him off” so he won’t be a burden anymore.

In the abstract, conversations about death are hard. In the practical, they are nearly impossible. We believe we will exist, in some form, for as long as time itself exists. But we also want to be here now for as long as possible. I’m not ready to die. Are you? But we all do. All of us. There will even be moments when Donald Trump, LeBron James, and Taylor Swift cease to exist. (I’ve got $100 bucks on Trump, massive coronary, DC courtroom, March 2024.) We’re all just sacks of meat with an expiration date. But when that date starts getting close, I get why people try to renegotiate their deadlines.

I want my brother to choose hospice care. I want him to get off the torture train of chemo. I want to take him to the Oregon coast. (He’s never seen the Pacific Ocean.) I want the next weeks to be spent listening to music and laughing about the stupid stuff we did when we were kids in Stone Mountain. But I come off as the Grim Reaper for suggesting this might be the best choice given the bad hand he’s been dealt. He just wants to fight and I’m glad he’s not ready to give up. Sometimes hope can win over science. It’s his choice, but the clock is ticking.

If you want to help with Ron’s care, we are still taking donations at his GoFundMe. Maybe we’ll get to take him to the Oregon coast.  CLICK HERE