Pedal Another Mile

Bicycling, death, life after death.

Two weeks (a.k.a. another thousand worder from old Dave)

Not the type of anniversary you want to mark, but it has been two weeks since Billy Jo's last bowel movement. Two weeks of absolutely nothing. Even in the hospital they got a few grains of rice and a rabbit turd out once or twice. Now? Nothing at all. The building pressure in her abdomen comes and goes but she claims it's not pain - it is discomfort, and hitting the button on the pain pump doesn't help it.

She hasn't eaten a calorie today and it doesn't seem she will. I know this scares some of you - it scared me too at first. But I've read the information provided by the hospice care and I'm over halfway through a book titled Dying Well, by Dr. Ira Byock. He was one of the first people to look at dying from a hospice-type perspective.  It is a collection of stories of the final months/weeks/days of some of his patients. The fears I had about starvation that were somewhat subdued from the hospice guide were fully quelled. From the book, about a patient named Michael, an 8 year old boy who needed bottles and feeding tubes, but those were causing more problems. When the Dr. suggested cutting back or stopping, Michael's aunt Kathy responded "You mean starve him to death?":

I explained that the reality did not match the gruesome image the word starvation brings to mind. Kathy, like most people, harbored understandable misconceptions about this way of dying. People imagine that malnutrition and dehydration are painful, horrible ways of dying. But with an advanced illness like cancer, heart, or lung disease, kidney failure, or AIDS, the reality does not match the awful image. Over the years I have seen that malnourishment and dehydration do not increase a terminally ill person’s suffering, and can actually contribute to a comfortable passage from life.

Hunger disappears after a day or two of withholding calories, and dehydration in someone terminally ill is usually experienced as a dry mouth and throat, which we can easily relieve with tiny sips or a spray of fluid. Although there’s no way of knowing exactly what Michael is feeling, my experience with other patients has been that this is a comfortable way to die. Often people even experience mild euphoria, probably because of the change in their chemistry from not taking in calories. For years hospice people have avoided this subject, fearing that it might be misinterpreted as encouraging suicide. But it is not suicide to refuse an operation when one can no longer swallow, nor is it suicide to decline food when hunger is a distant memory and death is one’s immediate future.

Each complication that is treated merely shifts the physiology of the person’s dying, it does not halt it. A patient who is artificially fed and hydrated may live longer but is more likely to die with episodes of acute pain or breathlessness.

Byock MD, Ira (1998-03-01). Dying Well (p. 178-180). Penguin Group. Kindle Edition.

This is about where we're at with Billy Jo. She hasn't been "hungry" in over a month. She's eating some just for pleasure (and sometimes I think to make 'us' feel better), but lately it's a crap shoot as to if it's going to make her worse. Well, not a crap shoot. Bad choice of words there, Dave. It's a puke shoot. The solids or liquids are not going anywhere, and a good day is when she's able to keep down a bite or two of something and any liquids she's had for the whole day.

Now, onto the rest of the day. We got a visit from Robin, the head nurse from Billy Jo's palliative care team at CDH. She brought us two more hand mould things so we can try again. Hopefully the "I tapped my fingertips on a belt sander" look won't happen again. It was good to see her and we discussed how Billy Jo has been lately, especially the last week.

We also got a visit from Pastor Hein, the Chaplain for the Lockport Fire Department. Billy Jo had many interactions with him during her time as a dispatcher, and called him last week to ask if he'd oversee the memorial service the day after her wake. We are not going to have a traditional funeral in a church. We're not very religious (I'm much less than Billy Jo) and never bothered to find a church since moving out here over a decade ago, so having an actual funeral service at a church seems silly. I enjoyed our visit. I'm not dropping to my knees and praying constantly as a result of it, but I did not get the "it's part of God's plan" answer typically said to me either. My faith has been pretty much reduced to nil over the last 13 years and it's not going to magically reappear overnight, and especially not solely because Billy Jo is dying and I need that "quick favor from God."  I'd feel like a total fraud. No - I'm not going to rush back into something I still have serious issues with because of what faces Billy Jo in the near future. He challenged me on my thoughts and concerns and it was a good debate. He's a decent man, well meaning and easy to talk to, and he understands where I am coming from. I look forward to some more talks with him - he'll be visiting us again.

To those who have faith - please do not be offended at how I feel. I have never really though of labeling myself an atheist or agnostic or anything... rather just not labeling myself as anything.  I never put my beliefs (or I guess, lack of) above other people's beliefs. I do not mock or deny people who want to pray for Billy Jo or I. I welcome those prayers. They do no harm to me and they help the person doing the praying as well. If I do find my faith again, I may at that time realize they did help. If I don't, they have never harmed me. Again, I'm not looking to get into a religious debate with anyone else... here, on Facebook, in person, etc...- I'm just putting out how I feel. I'll stick with continuing the debate with the Pastor :). Yes, he's well trained in what he does but I am one stubborn son of a bitch :)