Bad Ideas and Poor Choices

My dad is dying. I’ve never written about this before and it’s been going on since early 2018 which sounds a little odd when you say it because that’s more than seven years. However, he is, indeed, dying. Slowly.

The initial prognosis was three to five years, leaning to possibly less than that. I heard a groggy voice croak out 18 months but that was before he broke out of the hospital and escaped with the help of his local war game buddy. Don’t ask.

Why did he abscond with himself (it’s called elopement these days)? Because there were three back to back events that were all extraordinarily important to him and he had no intention of missing any of it.

Even if he dropped dead when it was all over? My dad doesn’t think that way. Not even now.

Before I continue, here’s what it is: Myelodysplastic Syndrom, most often refered to as MDS because nobody can ever remember mye-lo-dys-plastic. MDS is not a single form of cancer or red blood cell disease. I had a friend with Lukemia who came through his two solid years of chemo, et al, and has been in remission for nearly three years. It’s called MDS but Lukemia is not what’s going on with my dad. His is a lot easier to explain. I think. Also, he is not elible for any invasive treatments like bone marrow transplants or any other organ transplant should another organ bite the dust. Too old to survive surgery although, with my dad, I find that somewhat dubious. I’d give him pretty high odds. Or I would have five or six years ago.

Essentially, his bone marrow stopped making red blood cells. A drop in red blood cells starts with anemia and rapidly turns into stupid low hemoglobin. Stupid low hemoglobin delivers super low oxygen to the brain. You can probably do the math on the end game. There are several treatments, the second of which is periodic (twice a month on average) blood transfusions. If you do this long enough you build up odd antibodies (so you have to have blood work to identify exactly which antibodies to add or subtract to the blood order prior to hooking him up to a bag or two of Vampire Juice.

Before he agreed to the port catheter (which totally freaked him out) he got stuck with a lot of needles because his veins are no longer interested in being poked. He hates needles. I mean REALLY hates needles and this turned his four hour process into escalating trauma and we thought he was getting close to throwing in the towel at which point he would eventually go to sleep and not wake up. The port was a game changer. Now he sits in his chair and binges Big Bang Theory, laughing his ass off until he decides it’s nap time.

That said, the other issue is an iron build up in his liver. Well, that’s a problem. The next solution is Reblozyl which is an infusion of (something, I’m still not clear) that has a 40% chance of reducing the frequency of his transfusions. He’s only had two of those so far so we don’t know yet.

There are other things going on that make it harder but we just keep going. My dad, my step-mother, and me. It’s good to live just one mile down the same road. The fact that my step-mother has remained even remotely sane is a mystery to me. I think it’s a mystery to her as well. Last December her mother died shortly after her 95th birthday. She’d been taking care of her mother since just after my dad’s diagnosis. It’s like watching your husband and your mother circling the drain together. A shit ton of work and more heartbreak than all that. It helps that I’m here. Not just for the added hands (I do almost all his four hour transfusions with him) but for the fact of family.

My step-mother is from Oklahoma and moved east to marry my dad in 1983. Or 84. That long ago. This means a lot of things (she’s never going back under any circumstances). First and formost, it means that she has almost no family within reach. She has me and I will never leave her short of expiring myself. There are only seven years between us and I’m pretty sure she’s going to outlive me.

As she put it, friends are great and she has a lot of them, but family is something else entirely and she once told me that she was afraid when my father died that we (me and the kids) would all forget her.

Imagine the pain of that. My heart still hurts.

I cried for two days about that, had a come to jesus meeting with myself and figured out how to behave in a way that she’d trust that I loved her as if she were my own. Because she is. We got through that. She’s pretty clear I’m not going anywhere and she certainly knows how much she matters to me. That was a big deal because I tend to wander off the map unless you’re one of my kids or my second husband but he’s dead now (so that sucks) which means I’m down to paying attention to three unless I teach my brain that someone else is as connected as my kids.

So here we are, more than seven years later and my dad is officially two years past his expiration date. Yes, we do think this is funny. We also think Vampire Juice is funny as hell.

When shit just keeps happening and my step-mother just keeps going (as if nothing was wrong at all), this is the song that goes through her head. I highly recommend you give it a listen because it, also, is funny as hell. It’s playing in my head since she shared that little tidbit. The mini banjo is perfect. He’s a standup commedian and, again, this is funny as shit. Have at it.

Well, This is Shit – Thomas Benjamin Wild Esq

This would be a good place to stop except I think it’s important to acknowledge the reasons he broke out of the hospital back in 2018. In order:

The last grandchild graduated from high school. All rites of passage like this are extraordinarily important to my dad. She would have forgiven him. Would completely have understood and was actually a little alarmed when he showed up in a wheel chair (he doesn’t need on except for long walks anymore) looking like death warmed over. But show up he did.

Immediately following graduation my dad and step-mother got back in the car and drove the remaining twelve hours to the beach. My step-mother was a blasted mess at the time. This was all new and I remember her nearly crying out the words, “I just want my husband back”. I drove down for a day and a half to get my own kids settled. They were all adults, OK, the baby was seventeen, but the other two are nine and fourteen years older. At that point they had a tendency to still assume all adults older than they were would take care of everything. My step-mother needed to do absolutely nothing for at least a week. She didn’t even want to talk to anyone and my understanding is they did a passable job.

They left the beach two days early to get back in time for my middle child’s wedding. That one makes more sense, right? I will admit that if he were forced (as if THAT could happen) to pick one event he would choose the wedding. But those other two events are things that root him to his life. We’ve been going to that beach since 1972 and we all pretend there are still only seven rental units and avert our eyes as we walk past those things that house thirty people. We also pretend we don’t see all those other people on the beach and wish massive huricanes and shark attacks on them (OK, not really).

While my father’s long term memory remains pretty much intact, his short term memory isn’t very good. This is fun for me because I can tell him all sorts of egregious untruths and he will believe me because I do it with a straight face, and 99% of the time he won’t remember anything I said during the hour drive to and from UVM. The other 1%. Well, shit. I’m caught.

Things I never tell him: anything related to childhood trauma, mine, my brother’s or his. I made the mistake of talking about one of the most minor events late one night and he cried because he didn’t know. The man was in agony and wouldn’t let me go.

My step-mother happened to be up at the time and I told her what I’d done and I was crying because he was crying and she said, very gently, he will never remember this. And I will never do it again.

Love your people gently.

(damn, that was a long one)