Let Us Pause

I’m enjoying a week between before and after, lots of dog time, music, reading, and writing. Aside from discovering that the dogs pulled apart some of the ductwork under the house1WTF, it’s only money., it has been a lovely way to spend time before I surrender to the cruel intentions of a cabal of mad scientists. So while I have a minute here is what the next 4-8 weeks look like. For all you folks keeping score

Come Saturday the Igors and Redferns Renfields (mea culpa) of the Bone Marrow Transplant unit will begin zapping me with a six-day chemo course called BEAM, a regimen designed to come as close as possible to eliminating all of my bone marrow, platelets, red and white blood cells, and pretty much anything that we more or less recognize as biological necessity for staying alive without actually putting me on the wrong side of the grass.

Once they have me at the edge of expiration, another crew will tag team in to give me back the 3.3 million stem cells they extracted from me last week. Transplant day is slated for August 30. My new birthday. The hoped for end game is a brand spanking new immune system, preferably one that has no trace of the lymphoma.

The first weeks after transplant are critical. With no immune system, the most benign bacteria or virus could be catastrophic. I do not use that word lightly. There are tight restrictions on what I can eat and drink, how (and how often) I brush my teeth and shower, and who can enter my room. I know of at least three people who made it through transplant with flying colors only to be felled by pneumonia. That shit does. not. play.

My digestive tract is apparently in for a doozie of a time. Chemo attacks the body’s rapidly dividing cells, and pretty much all the cells after the teeth and down through the areshole are the rapid division kind. Extreme weight loss is likely. I’ll take that, though I’d recommend the latest Oprah/Dr Oz macroketotic fad over this approach.

My sense of taste and smell are apparently going to be altered exponentially and inversely: I will have no sense of taste, yet my olfactory acuity will make the mildest little whiff of anything smell like a well-ripened durian, or a sewage discharge line gone a-plugger.

They will track every calorie and ounce of liquid that goes in. They will track every ounce of liquid and scat that emerges from my various agonized orifi. They will track the differentials between these values.

They will also monitor all the various chemical and mineral levels in my bloodstream to ensure I do not drop too low on the essentials like calcium, magnesium, potassium, &c.

Because my platelets will be essentially zero, I have to be especially careful about nicks and cuts. No flossing, for example. And especially: No walking anywhere (even the potty) without a guide because, were I to fall and hit my head, I would likely pass beyond the mortal coil before they could get me into surgery.

Hey, if the thunder don’t get ya then the lightning will.

Somewhere between 2-4 weeks after the new birthday they will discharge me to the Cancer Halfway House a few blocks from the hospital where several dozen of us malignancy malingerers will gather for conviviality and comparison of sufferings. For the following 2-3 weeks I will go in for blood and other tests to be sure I’m doing okay. If at any time I run a fever of 100.2*f or higher, I am to go directly to the ER for admission. Eventually they will send me home. They tell me to expect a good year to get back to whatever normal might look like.

Easy peasy. I could do it standing on my head if they allowed gymnastics on the ward.

In the meantime, I’ve been having a slurry of dreams of extreme ridiculosity. Impossible travel situations, missed connections, getting separated from traveling companions. Finding myself alone in a familiar city that looks nothing like anyplace I have ever been before. Getting lost. Getting accused of a crime I did not commit and chased like I’m Number Six.2No big balloons following me. Yet.

Look, ya don’t need to be Seigfried Shadyfreude to figure this stuff out. Clearly, lots of anxiety about my current situation bubbling up from the depths where Grindel’s dang momma hangs out. This is new.

I have never really experienced this anxiety in my waking hours. Sure, I get worn down by the physical insults of treatment, but I’m mostly optimistic that the Dr. Caligaris on my case know what they are doing and that everything is gonna be alright. I haven’t been afraid, not really. No fear of the great beyond or anything like that. And not even really sad about the whole shebang. It has just been a really intense endurance test and one hell of a learning experience.

Until this morning.

We have been getting up way early the past few days, just because we can. Next week, I can’t. So a little extra time with the Stanwyck and the hounds, time to listen to a few more albums per day than normal. More time to read and write. Good damn stuff.

Today, Stanwyck was up ahead of me. I roused around 5.30 to the smell of strong coffee. I woke up, got out of bed, dragged a comb, &c. I walked down the hall distracted by a recent earworm that I cannot escape nor identify.3I believe it is a scrap of some obscure comedy album from my tender years, maybe even some kind of church distributed Don’t Do Drugs propaganda. The Google has been no help. But I digress. I walked into the kitchen ready to roll.

And then it hit me. I saw Stanwyck and the dogs, our little kitchen table waiting for me to join them. It was so beautiful. And all of a sudden I got really sad and scared about everything, about how when I leave here Friday there is a fair odds chance that I will not come back. That everything I have, and had, and might ever have might be lost forever.

Fuck me, mate. That was hard.

But it passed after lots of woman love, and dog love, and a few hours of really good music. And coffee, which cureth all things. But still: Slap me silly and call me Trump. I did not see that coming.

Later in the day I received access to the upcoming Ken Burns docu about country music for an article I’m writing. It is really, really good, and filled with the kinds of plaintive songs that can salve a troubled man’s heart. It is also fucking superb.

Anyway, here’s the point of all this, if there is one.

The opening music for episode two is Mavis Staples’ version of the Stephen Foster classic “Hard Times”. I had to rewind and watch the first five minutes again because Sister Mavis had taken me somewhere else. After the episode I listened to it again, and then to another half-dozen versions of the song ranging from a 1928 string band to Bill Frisell jamming on it with Elvin Jones and Dave Holland.

But none of them hit me like Mavis. I went back and listened to it a few more times. I’m downloading it to iPodious to take into hospital with me. (Correction: It is not available for download. YouTube it is.)

Tis the song, the sigh of the weary
Hard times, hard times, come again no more
Many days you have lingered around my cabin door
Oh hard times come again no more

I’ll post again when I can. Stanwyck is keeping those who know and are known informed. Shout out to her if you want in on those updates. And as always…


It matters a difference.

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