A few days ago, I was sitting in the coffee area of the local AA club while Barry sat in a meeting. To plug in my computer, I had to move somebody’s pictures to a corner of the table. I don’t know who the photos belonged to. I looked at a few of them. They were clearly from different decades, going back at least to the 60’s. I didn’t recognize anyone from the club in them and I didn’t see any descriptions on the back of who these people are/were.
It hit me real hard: is this all that’s left when we die? A pile of pictures that some random relative will have to dispose of? What’s more is that I have allowed few pictures to be taken of me as an adult. I may not be remembered at all.
Life is change. I am accustomed to thinking of things in terms of transitions from one thing to another, but some things don’t really change into something else; they just dissolve. Even Thich Nhat Hanh talks about water becoming clouds and that kind of thing.
Things seemed simpler when I was a Christian and believed in a personal god. A childlike faith can be reassuring, even if it is false.
This past week, Barry was told that he probably had “a few cancer cells down there.” At first, I found that reassuring. Some men, after all, can have slow-growing prostate tumors for twenty or more years. However, I doubt those men have Huntington’s or a previous cancer diagnosis. Is having “a little cancer” similar to being a “little bit pregnant”? I’ve decided to proceed forward from the position of “the cancer is back,” not “a few cancer cells.” When a person first gets a cancer diagnosis, they can get treatment and maybe live another twenty or thirty years. On the other hand, when someone is told that the cancer has returned, the next step is to get one’s affairs in order, starting with a will. We’ve already done a lot of that. I am just living from the perspective of a shortened prognosis. We already have a palliative care plan in place.
Six months ago, I thought Barry could live another ten years—a very possibly ugly ten years. The Huntington’s is slowly progressing and there is the possibility of a nursing home within the next few years. There was no light at the end of the tunnel for me. Now there is. Barry will not likely live another ten years. Palliative care is not treatment; it is hospice. I may outlive Barry after all.
Part of me says, “So what?” Eventually, any meaningful trace of my existence will disintegrate. In the end, the light at the end of my tunnel will be a train.
Pema Chodron wrote a book many years ago, When Things Fall Apart. It is really good. But what about when you fall apart? Not just emotionally, but actual physical dissolution? I am not talking about metamorphosis. I am talking extinction. Very different.
The past few days have been eventful. Knowing that Barry’s PSA was a 7, I was concerned that the obvious next step was a biopsy, which would be painful with a risk of infection. At first, he seemed like he might do it if his sponsor suggested so, and that had me panicked. So…….his sponsor gets to make these huge decisions and I get stuck living with the consequences and picking up the pieces. Great. But Sunday evening he said he didn’t want to have a biopsy.
I rejoiced, not so much from the choice but rather from the fact that Barry was taking full responsibility for it. I had no idea how exhausted I was from making all the decisions and trying to figure out how to handle everything. I feel like I could collapse from carrying that burden for so long.
This morning, we went to doctor’s office. The nurse practitioner said that the normal next step would be a biopsy, but Barry had previously said no and he said no repeatedly today. She said there were probably a few cancer cells “down there” and that men often have prostate cancer for many years and that Barry’s seems slow-growing. We will do the PSA test every fall, just to monitor and see if it suddenly goes up. If Barry has any troublesome symptoms, we have a plan in place medication-wise. She even mentioned “comfort care” which tells me that palliative care is on her mind and that seems perfectly reasonable. I feel like we are all on the same page for once.
Does Barry have cancer? Probably. But his unwillingness to treat changes the next steps.
I feel so relieved. I am not crazy for thinking that a biopsy would be the next logical step. The best part is Barry making his wishes so clear today at the office.
I want to tell people everywhere: take responsibility for your own choices! If you don’t, you lay the burden on someone else, who will likely resent it and may not end up making the choices in your best interest, but, rather, theirs. Sometimes, there just are no good choices. Here’s a good rule of thumb: whoever bears the responsibility should have the authority. Responsibility without authority is slavery. Authority without responsibility is license. If something has a huge effect in your life, take responsibility for it. If you don’t, be prepared to pay a high price.