I have been out of touch for a bit, and N and Mom/Jim state pretty clearly that the Woodchuck Post of the other day does not leave sufficient evidence that things are going well. Here is another try.
Tomorrow is day 12 post-transplant. Usually (and that’s a wide array, but it is where the experience points), engraftment of stem cells takes place somewhere between days 12 and 21. So we are headed in the right direction. I will fight with everything to get there. Do all of my part. But right now my part isn’t very interesting.
Things are rough. Really really rough. But that’s OK, because that is all that is being offered on this menu right now. I barely remember the Woodchuck Post; only that I hoped it got some laughs.
Part of the problem is that I’m trying to write standing up just because of comfort, but more often than not I start to miss keys and/or nod off and the post cracks. I’m amazingly tired in a huge and overall way.
‘They’ said that radiation fatigue was a different kind of tired. And they were right. Divinely, awfully right. But somehow not clear. It’s not ‘their’ fault.
The problem is that I think the truths are so elemental, so base, that to describe them feels disrespectful to their power. So you don’t define them. You just fall asleep while walking. While spitting. While sleeping–guarantee I’ve done that between twenty times today.
I’ll try to explain:
You know when your blood is so insubstantial that running it through your veins doesn’t even help you stay alive?
You know when the gestural border between being asleep and awake is a parting of the lips, a glance to the side?
You know when it is so impossible to create the energy required to think about the energy required that you don’t, and instead keep standing, swaying, in the room, until your wife kind of has to call out your name and ask you, in a deeply serious, quietly frightened tone, if you were about to nap? And you were. But didn’t know until you were asked?
It’s like that.
All the time, with no connection between sleep and wake.
I’ve been in limbo, the real purgatory, for I think 5 days.
It took me fifteen minutes to type the words from ‘I’ll try to explain:’
To here. And I haven’t gone back to check mistakes. There will be a total of: 24.
And that is OK. Fine. All good.
Bone marrow transplants have this huge reputation as being the worst. I have had a pretty impressive list of horrible things happen to me since original diagnosis. I’m not getting macho, it is just what you go through. Your body is actively confused and so trying to die, using the mechanisms it has perfected (that are now broken) in the most efficient form of living we’ve found so far.
People who survive these little adventures don’t all come out the other side looking like they’ve just made it through something intense. But they have. And during it I think we all are not OK with failing, not at all OK with dying, even a little bit.
It just seems so…likely. You look at what the Drs are doing to and with you, you track your numbers, you watch everything starting from the tip of your tongue from your lips on back and deep into your body rot and, hopefully, you start to regrow.
You have no choice but to start seeing it from the POV of ‘other’ because everything has blurred and you are the protagonist in a drama that seems so clear: I’m watching someone disappear. I wonder when it’ll happen. There’s “non-gluten German chocolate cake,” N tells me. Well, the bit of bacteria (in my CVC lumen, or line, not in my body) has a Graham strain of Streptococci. So maybe through N’s involvement I will become a Gluten-free German ex-cancer patient. That guy would have the energy to sit here and write this. That would have a nice roundness to it.
But you’re OK. That is what I want to convey to you, today. I don’t want to paint this grey picture like the description of a bird dying gently in National Velvet. I am reading it now: ‘reading’ is a barely respectable word for that: I have been reading it since our arrival over Memorial Day, so almost exactly a month: six chapters behind, and it is lovely, and dying, but not because of anything morbid or bad.
And I have these emotions, and I have photos, and I have N’s bullet-point list. The emotions are the pre-cancer set I arrived with, quite altered by the final-ness of why we are here in Texas. It works or it doesn’t. I’m raging against the dying of the light, don’t doubt that: it is just that I have a small set of jobs right now to hold up my end, and I am doing that, so everything is OK, just…weird.
There are pictures on a digital frame next to my bed. They are the photos N and an intrepid aunt grouped, photos from dear friends and family, plus a large selection from our own files–nothing fancy, just pix. And ‘it looks like this today’ stuff. Pals or relatives or whomever were hit up for a cross-section of what people perceived to be my/our life. Just a random sorting that would, hopefully, when un-sorted and laid somewhat randomly in the digital frame and displayed on ‘shuffle’ non-stop by the bed, stand for something.
There are so many dogs. Horses and music and motorcycles and cats and stone, sure. But mainly dogs.
Ours, others, smart, suburban, mountain, ranch, badly trained, quiet genius, mostly mutt–the only dog, really. They define me, us, in the refraction of all the complex vast weakness we are,
and because they exist, at all. I will, too.
Because they exist, at all. I will, too.
They won’t be in here because getting them off the picture frame in the hospital room isn’t feasible. Just know that they are there, and that, when I awaken in the night because the back of my throat is turning into gristle crystals of drying meat, I look to those pictures and resettle.
I have mucositis: all the mucous membranes in my body are dying and sloughing off because they are fast-growing. This is by far the most horrible and painful part of all of this. If you want a silent and indefatigable enemy, pick yourself. Then: you’re fucked.
That is not a lozenge, that’s me. The radiation and the one-day chemo are designed to bring you to the point of mucositis. That is the indicator that you are ready for colonization by German non-gluten Graham-negative chocolate.
The actual ‘transplant’ is a boring transfusion of shit that looks like any other blood product, dripped into you. It takes a Lenscrafter, and hopefully you have been medically gutted enough that you can start to linger too long in the chambers of the sea, by sea-girls wreathed in seaweed red and brown. Throw in TS Eliot: why not? It means that in about an hour you get a delivery of life or failure to thrive. Throw in Nixon; why not?
But mainly, it’s boring. My white count hit .2 again today. That is a RISE to .2, the second time it has risen to .2. It has gone back before. That is all OK. If we get 2 days at .2 or, god forbid, more increase tomorrow or in the coming grey days, we will know we have passed out of the opening phase of lingering, and then it is just a perfectly pleasant awful wait to hopefully keep improving.
I saved a piece of me to dry and show the Drs. I doubt they would have been impressed. But I was. This is Holter Jerky: Pen Cap for Size Comparison Only.
Mucositis requires Dilaudid for the pain. This is administered through a happy button. I hate Dilaudid. It is the first drug I had to take the first night ever of having Leukemia and it haunts me still. I live in a very lucid terror of being addicted, of having to even have that battle with me over “I want that.” “You shouldn’t have that.” “I want that.” “Fuck you.”
And Dilaudid also stops your bowels totally. Mucositis makes eating (hell, swallowing) extremely painful. So between it hurting so badly I don’t want any food of whatever consistency, and taking in so much IV nutrition or fluid, I have neither eaten nor shat in more than a week.
There is a lot of drool. Plain and simple: when your mucous membrane starts to rot and die and refold and slough and then regenerate, you drool like a mother. You can choose to fight it with a drug that super-dries your mouth region so when you wake up suddenly when “vitals” are taken at midnight-ish and 5am-ish, you rip your lips trying to open your mouth…there’s only so much Vaseline you can load on your lips before sleeping. You can fight it with a suction machine that takes the drool away like at the dentist but even on low it has a lot of power and eventually is hurting you also. Or you join it by just drooling all day every day, learning the specific atomic weight of drool so you can spit cleanly into passing trash cans as well as your own so as not to make a mess.
None of it works, though. Regardless, you are drooling. And that is gross. I’ve spent two nights trying to get a little sleep around not drowning myself. I have failed.
No biggie. If I had hair to tear. I might.
But there are all these dogs, so I am
Dogsitting a digital frame.
Eating is almost impossible. I am on day 11 I think since transplant and just ‘put away’ four teaspoons of organic corn soup in about 40 minutes. Champion. Nathan’s, here I come. I’m gonna stop trying to eat again even though I got to the point two days ago where the concept of not eating seemed viable. That is supposedly a good thing, a good moment. yeah, well: lemme know when it shows up willing to work for my supper.
The food difficulty is usually shown by single eruptive hiccups, followed by a strong silence, and then the sound of me thumping my feet and making faces and noises. Thump, “aargh, wh-wuhn!”
Oh, and I have cankles!🙂 These, apparently, are cankles!!
I have radiation burns gone past fresh and meaty to a more pitted and freckled now across the top of my shoulders and back and head.
I have been doing very VERY half-assed union work of the NEWYORKCOALITION4UNITY (Eventually I hope it to be referred to as ‘The NYCo’ or at least Staten Island Chuck, but we’ll see). I’m working my butt off to help lead the union, but as you can maybe see, my butt probably isn’t much help right now. But I try.
N and I have completed one 500-piece puzzle. Shocking subject matter.
We’re getting some great cards from near and far–though mostly far. There have been a lot of aunts and cousins on this part of things. Cool, caring aunts and cousins are fucking fantastic. Just plain old fucking fantastic. I’m having eclectic Bowie-reference throwdowns with people: they’re doomed! Doomed!
At some points some nights I try to use Remeron as a sleep aid, but I found myself drawn into a dream/hallucination of having killed, assassinated, or simply silenced NBC’s Mike Taibbi in some sort of British Bourne Ultimatum-esque trick double-cross killing. Pretty sure I didn’t do it, but you never know. Besides, he’s likely NY Union, so why would I try to take out one of my own?
Day 7 was Day 1 (Doctor Math!!!) of Neupogen, which tries to raise white count. It’s a little wonky start if not by design then by pharmacology, so engraftment stepping up and staying off the floor isn’t guaranteed, but we are at that point–the first day of progress when the white count creeping from 0 to .1 or even, god forbid .2, may be lurking. And supposedly things pick up pace a bit after that. And because that is a medically upped pace, there is often bone pain in the extreme once or twice.
The trick, N found on The LLS sites but posted there a while ago through an MDAnderson hook, is to take a Claritin, which somehow mitigates the horror of adding bone pain to the land-fill I’ve just taken you through.
But Claritin only comes as a pill. So right there: you’re fucked.
Everything else I take now is IV. Physical swallowing has been too hard for days. But if you are sent your Claritin, in you go, face first. You may find your tongue has fused to your hard palate since the last time you were in the neighborhood. Every Dr and Nurse and Aide has a goddamn LED flashlight and are just OVERJOYED to get right up in there and say “Hmmm, ok, now under the tongue.” And when the flesh-web you had been developing rips right open with an audible ‘tink’ and then this tearing-paper noise like “snftilktrt!” and every MD or whomever with their leering mug stuffed up in your grill rears back at the same time making this squeegee face, you know you’re at one of the best facilities.
There’s just nothing at certain points to stop it from sucking.
And it sucks.
I hear leash jingling. Let’s get moving.
Because of the dogs, we’ll see.
I have been revisiting Methotrexate, and Decadron, and Tacrolimus–the actual engraftment drug put in there specifically to get your bone space and the German guy’s now-my marrow to make nice-nice forever. I forget why but I think it may have something to do with transplant. Methotrexate was a four-set infusion and today was the last day. That also left me feeling mildly ‘final.’
Food is great when you can eat it. They feed patients free, so you can try your luck at any of the many orders that dwindle in desirability and/or ability to be eaten. I ordered lunch three times I think on Thursday. And had one sky-cleaning set of farts that meant that my bowels were not blocked, merely unavailable for more than comment, and awaiting input to allow them to speak their mind. Their expansive, imaginative, sweeping fart-mind.
I have to ‘shower’ every day, not a strong suit for me in health, but especially tough when I have the CVC wound being kept actively open with a less water-proof covering. But I have done it and will keep at it.
NYSTOP is a dust-like product for areas where one may have recently gone through something like rapid hair loss and maybe also a little more sweaty and strained than usual: I’ll leave that one right there.
There is a toy we call the Inspirational Lungs (originally called an Incentive Spirometer) that keeps you working your lungs so they don’t give you pneumonia to make recovery difficult. But I’ve walked at least a mile in here, trapped in here, just about every day since getting in, so the lungs are getting their work, and I will not leave it be, goddammit!
And then there’s Salt and Soda–what sounds like a mildly quaint beer Gastropub somewhere here in Houston–is actually a mixture of sodium fluid wash and baking soda. And you have this damn schedule that you are supposed to do inspired lungs and salt and soda every two hours, not necessarily the same two hours and then some sort of jelloshot thing to momentarily deaden the throat pain and remember up above about falling asleep while you’re typing and you get the idea…not a lot of sitting around in this place but it’s all good and I’ll do it dammit!