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[cancer] Still not much improvement

I continue miserable, and thus does everyone around me. Been home for a week, still have not managed to either have visitors or go out. Next week is the sixth anniversary of my onset of symptoms. We will not be celebrating.

There’s a bunch of medical stuff going on, as usual. Don’t know where it leads, as usual. Will report more when there is more to report. For now, bleh.

Also, I continue to be off almost all social media including email.

[cancer] Still here, still overwhelmed

Some basic nutrition and lifestyle issues got in the way of well, everything. They still are, but things get better. I had a major rebalancing of my medications, which has made me even more listless and goofy but has restored (more or less) my ability to eat.

Tomorrow I have CT and MRI appointments at NIH. I never mind CTs, but MRIs are the soul of tedium.

Tuesday morning I have a follow up apheresis appointment, my last I believe, then in the afternoon I see my NIH doctors in clinic for an initial analysis of the trial results.

We already know this won’t be a full and final declaration of whether the trial was a success or not and my status going forward. There are number of possible data artefacts both positive and negative. But we hope to get a trend. I’ll come back in mid-May where we should nail it down better.

My anxieties are easy to imagine, though mostly masked by the medication right now. Sorry to be so low-bandwidth, it’s very hard to focus lately.

Jay

[cancer] Which way am I going?

Just had another slo-mo meltdown with the gracious Lisa. I am having a very hard time.

Part of the problem right now is we can’t tell which direction I’m going in. Most of my current health issues (other than the food, which is both dominant and a special case of conditioning and attempts at deconditioning) could point to either me slipping further into my terminal decline, or to me responding to the recent experimental immunotherapy protocol. Or both. And we won’t know for sure until mid-May, though it’s possible negative evidence will emerge in my consultations on 4/14 and 4/15.

So, yeah. Am I living or dying? What does all this exhaustion mean? How tired can one human being be?

Hence the lack of blogging and email. Fragile hope is under great duress, and my energy levels are similar to late chemo after six months of treatment. And we just don’t know…

[cancer] Quick update re email, comments and social media

As recently discussed here, both my body and my mind are fully occupied with some fairly serious food issues, post-treatment. As such, I am very dilatory about responding to email, blog comments or social media chatter. My apologies. When I am back to full functioning in body and mind, I’ll return to my usual online response times.

[cancer|food] How I spend my days

The lead suit slowly improves. So does the giant clamp on my brain. The problem is and continues to be food.

The protocol I was on at NIH had the incidental effect of deconditioning me from being able to eat. Right now we spend most of my waking hours preparing me to eat, tricking me into eating, calming me down when I react to food, and planning how I will eat.

It is a freaking misery. Everything is about food right now, and not in a fun way. I feel ill at my stomach most of the time. And hardly anything works.

This is one reason I have not resumed regular blogging. My entire life right now is focused around managing enough food intake to try to switch from a starvation metabolism to a fat metabolism. You have no idea how all-consuming that can be. Not to mention miserable.

[cancer] Struggling with the lead suit, body and mind

I continue to not return email and avoid online chat. This is not a permanent state of affairs, but it will continue for a few days yet. I plead for continued amnesty.

My body continues to be a lead suit, albeit with a few of the plates falling off. This is much like emerging from the back end of months of chemotherapy. That’s not the hard part.

The hard part is the lead suit which encloses my mind. I can still barely single-task. My usual level of everyday multitasking feels like a moonshot project. Focus is a stone bitch. The medications I received on this protocol kicked my mind hard, and I’m still not up off the mat.

Which is scary and sad and difficult to cope with. Especially while the meat-and-and-bone part of me is also so afflicted with lead. I’m trying hard. I’m coming back, I swear. But each step is like climbing a mountain.

[cancer|personal] Slowly coming back

That was easily the most brutal medical experience of my life. This I say from a life well populated with brutal medical experiences these past six years.

I’m so physically deconditioned from three weeks in bed and some deeply weird medications that just walking around feels like I’m wearing a lead suit. My thoughts are still slow and single focused and erratic, hence the lack of blogging. But I am back, and I am working my way up.

Hopefully this blog will resume its normal schedule sometime in the next few days. I’ll try to blog retroactively about my experiences on the study protocol, though frankly some of them are already lost to medication haze.

At any rate, it’s me, and I am here once more.

Jay

[NIH Day 15]

Buy here but winding down now int recovery period. I’m still fat fingering most f what I try to type. This post absolutely included.

Friday midday I received 43.3 billion of my TIL cells infused back to me. A while raft of helper drugs came with, notably IL-2. I lasted 4 doses of iL-2, and was willing to tolerate more, but the doctors thought I was already at risk of serious lung and kidney issues from drug.

More to come I have it, not to mention recovering some of my writing skills. This post took over 30 minutes to compose on a full sized keyboard. Ah, cancer.

[cancer] NIH Day 10

Getting overwhelmed fast here. Yesterday was busy and spoon-burning both. An hour of deep science talk with Dr. Tranh about how the genetic selection of my TIL cells was done, and why, was sort of like a Masters degree in a bottle. I will report that when I can. (Notes were taken.) A 75-minute EMDR session to deal with my aggressive emergent food aversion gifted unto me by the cyclophosphamide. Likewise to be described. The massage therapist turning up. And the intensity of treatment dialing up sharply last night, half a day ahead of what I had expected.

Oddly, I got a good nights sleep.

The dance begins in earnest at noon today, with the TIL cell infusion. I do not expect to be able to blog or function on social media effectively after today for a while. I will either be silent, or possibly have Lisa make posts if need be. Expect erratic posting until further notice.

Overwhelming.

[cancer] NIH Day 9

Yesterday was a weird day. Very tough in some ways, easy in others. I was quite discouraged to jump from a one-hour infusion to about six hours of infusion due to reduced electrolytes, but since I have been eating almost nothing, well, duh, I guess. It was supposed to be sort of a day off.

The food aversion problem continues to get a little better, but not soon enough. And I accidentally gave myself a setback. Also, spoke at length to the EMDR specialist here, who is going to start working with me today to see about reconditioning me back to being able to take solids and fluids by mouth easily. Right now it’s very tough, a result of last weekend’s cyclophosphamide infusion being so terribly hard on my upper GI. I’m pretty sure Dad was fascinated by the EMDR guy and the intake process, which he witnessed almost all of.

Also, a rocking rash all over my chest from the adhesives in the dressing. I tell people and tell people I react to medical adhesives. but nobody ever does anything until after the problem presents. This happens with every new clinical. Sort of like my eternal conversation about why I really, really don’t tolerate opiates well, and no, I’m not crying “wolf”.

I walked outside the ward more, which was as much about boredom as anything else. Various of us had some good chats, but I’m mostly too unfocused to read or watch Netflix or hop on the phone.

Meanwhile, this morning was the last of my kamikaze chemo sessions. One of the doctors reluctantly confirmed that the cyclophosphamide which knocked me back so hard was basically mustard gas. That gave me a whole new perspective on WWI, I can tell you. I start the TIL infusions tomorrow around noon, and the IL-2 infusions tomorrow evening.

I am still afraid.

[dreams|culture] My chemo-addled mind on pop culture

Weird have been my dreams of late. Ah medication and stress, those twinned servants of the entelechy of dreams.

Last night I didn’t just get a few postcards from my subconscious. I got a whole truckload 70mm CinemaScope reels shot on expired TechniColor film stock, complete with house posters and lobby standees. (Hmm, when I die, maybe I should continue going to conventions as a standee. Anyone want to take on carrying me around?)

At any rate, I enjoyed an hour long series of linked dream vignettes that was rather like watching Heavy Metalimdb ] by way of Moorcock’s Eternal Champion cycle. Sturm und drang, world-ending battles, dead peasants everywhere, myself in various guises, genders and ethnic modalities struggling to save the world over and over again, and mostly losing. All the way through, I always knew that I had lost or was going to lose. People implored me to stop.

On the plus side, my late uncle-by-marriage Big Jay McMinnis made an appearance as a Cherokee centaur. That would be Big Jay as I knew him in the early seventies, loose, wild and free, before he divorced my aunt and that bitter, judgmental form of churchiness ate his brain. The younger Big Jay would have approved. The later Big Jay would have been appalled. (And no, I was not named for him, my aunt did not even meet him until some years after I was born.)

So yeah, pop culture filter through the chemo-addled brain. Another funny bit popped up yesterday as well. Many years ago, I was a happy member of the Slug Tribe writing group in Austin, Texas. We met two Tuesdays a month in a community center conveniently located not far from my then-house. The room next door to ours was occupied by a Latin dance class. They would begin dancing to Santana’s version of “Oye Como Va”, and stop after the first few bars while (presumably) the teacher fussed at people. I have forever associated the opening of that song with delivering and receiving writing critique.

Funny, the things that come back to you.