Jay Lake: Writer

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[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

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[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…

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[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.

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[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

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[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.

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[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.

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[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.

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[cancer] NIH Day Eight

Not so much to report today. We’re in the lull between the main chemo and the TIL infusion/IL-2 therapy. All the things I was grousing about yesterday got fixed except the toilet problem, and I have hopes of that being fixed today via a supplemental seat.

And while yesterday I was grousing about infrastructure and small things, I want to emphasize a point I’ve made before. The patient focus here at NIH is excellent. Different individuals approach it different ways, but my confidence in my doctors and their medical associates is absolute. These guys are great. I know even as terrible as I’ve felt, there’s a reason for everything. We’re advancing the frontiers of science and working on possibly extending my own life. That’s good enough for me.

On the downside, my chest catheter is giving a lot of difficulty. Infusions work just fine, but blood return has proven almost impossible to achieve. The current thinking is that the lines are twisted, or pressed against the vein in some fashion. Several solutions have been discussed, all of them varying degrees of alarming. It’s possible I’m going to have a quite unpleasant day. I have already requested sedation if we have to go back in and dig around. A lot of sedation.

Other than that, calm before the storm. I’m not over the cyclophosphamide-induced food aversion, but it has been reduced through careful management. The cough has backed off a bit more, too. My research fellow is leaning hard toward the cough being the tail end of a long, slow post-operative infection. To which if true I say “Hallelujah” if true, because it means I don’t have to put up with this crap for the rest of my life.

As always, we shall see.

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[cancer] NIH Day Seven

I am now in my seventh day here. (Eighth? Not sure where the count begins.) I’m still a bit addled from the Cyclophosphamide dosages over the weekend. (Just typing the name makes me feel ill, via the mighty power of suggestion. And I am still retching horribly from time to time.) But it’s pulling together. I had a good night’s sleep, albeit somewhat interrupted. Today through Friday they;re dosing me with Fludarabine, which is considerably less ugly. Friday or Saturday I start IL-2, which will probably be the toughest med I’ll ever encounter. I am more than a little afraid. In fact, I am very afraid.

I’ve made some observations here, which I offer in no particular order except that the one with the somewhat triggery and gross medical photograph will be under a cut at the end,

Toilets in the patient rooms

Whatever healthcare architect specified the toilets in the patient rooms here had obviously never used one. They’re the kind that stick out from the wall, and oval of the seat is longer that the usual American toilet design. And they have a very high waterline. Like so:

NIH toilet

Note the red line. Think about it for a minute. Lisa Costello says when she uses the one in the visitor bathroom, she often gives herself a finger bath whilst cleaning. Me, I dangle. As most men due to some degree. Little Elvis is of a felicitous size and shape, but my cremasteric reflex is in good working order, so he’s usually safe. However, my testicles drop right into the soup every time.

I’m sure I don’t have to draw you (another) picture. Let’s just say my management strategies for this are annoyingly kindergarten-like, as I’m not normally in the habit of clutching my junk while I poop.

Why in the hell anyone thought this was a good design, I cannot imagine.

How best to pee in a handheld urinal (if you’re me)

I have discovered that the best way for me to pee in one of those little plastic urinals is to lean my forehand against the bathroom wall, tilting my weight forward, and use my two hands as God intended them to be used in that situation. I have no idea why this should be true.

Hot water? In a hospital? What hot water?

As long as we’re on the subject of plumbing design in a healthcare facility, the hot water at the tap is very, very slow. If it hasn’t been used for a while, I’m talking two-rounds-of-Happy-Birthday slow. I understand instant-on hot water isn’t practical from an energy efficiency point of view, but maybe they could have put a few more boilers in the architecture. I mean, it’s not like I have any reasons to need to keep washing my hands a lot.

The saga of my hospital bed

Oh, the bed. It’s a perfectly good bed. All the mechanical bits work just fine. Up, down, et cetera. But the light controls and nurse call built into the flip-up side panels did not. I asked about this on checking in. “Just use the remote”, I was told. The remote, btw, provides no visual feedback such as an orange light or something when you press the nurse call. I pointed out this was a significant safety hazard, because if I awoke confused or seizing or something, the side panel nurse call was much more obvious and easy to reach, and I might night be able to hunt for the remote. A non-functioning emergency call button is a hazard, period. “Loop the remote around the side rail.”

I’m sure Risk Management would love to hear all that.

So we kept asking. And asking. Nurses, doctors, maintenance guys, the ward administrator. The problem, it quickly devolved, was the bed’s data output cable had a head that was incompatible with the data input on the utility wall behind the bed. We asked for another bed. No.

The problem with being in a hospital is that if you’re trying to accomplish something that doesn’t flow up through your nurse to your doctor, that’s very hard to do. Administration, infrastructure, physical plant and so forth are deliberately invisible to the patients.

Finally a guy came in to change our clock battery for DST. He was a hospital electrician. We asked him about the bed. No, not his job, but he knew who’s job it was. Meanwhile, I think the ward admin had finally gotten hold of someone. (Bed services apparently not being available over the weekend.) The bed mechanic showed up in due course, agreed with our diagnosis, and said he’d fix it. He came back half an hour later with a cart full of tools and equipment and tore apart the utility wall to swap out the bed data interface.

All ended well. But we must have asked literally fifteen people. It was just weird.

My footlight

Speaking of physical plant, there’s a small footlight in my room next to the bathroom door. I suppose it’s intended for night use. It’s inside the wall, and provides a corresponding glow on the other side. Except the filter or whatever on my side has slipped. So when I turn the footlight on, it shines directly in my eyes in bed with an unmediated glow of a bulb. I have asked to have this fixed as many times as I’ve asked for the bed to be fixed, but we haven’t yet found the vice-president of footlights at NIH, apparently.

Little roly-poly bits on the floor

I am attended by two nurses per day on 12-hour shifts. The odd medical assistant wanders through to do vitals. Episodically doctors appear like Canadian trap door alligators. And they leave behind a trail of syringe caps and similar small plastic items on the floor. I find this an astonishing fall hazard, as small round things may as well be ball bearings if you hit them at just the appropriate angle. Another item for Risk Management I guess.

Using the incentive spirometer to bring down a fever

One of my least favorite medical devices in the incentive spirometer. They feature prominently in post-operative recovery regimes.

incentive_spirometer

I have learned a new use for them which surprised me considerably. If I measure a low to moderate fever, the nurses here will sometimes have me use the incentive spirometer for several minutes. It can bring my temperature down by a degree Centigrade or more. Weird.

The fifteen-minute Tylenol

Yesterday, NIH implemented a new medication management system. Literally every pill or dosage has to be scanned before it can go into me. This has obvious applications for both patient care and inventory control. It’s also, like all new release software, buggy and strange.

Last night, my nurse was trying to give me 650 mg of Tylenol. For some reason, my orders were written as two separate 325 mg doses. This resulted in fifteen minutes of exasperated effort on her part, and that of another nurse, before they just gave me the damn Tylenol and went off to work this out somewhere else. Given that I was on the edge of falling asleep at the time, and really wanted the Tylenol so I could go lights out, this was frustrating as all get out. Ah, progress.

My inoperative lungs

The bottom third of my lungs are silent now. I no longer have use of them. The tumors have crowded out the healthy tissue and blocked air access. So when a doctor or nurse listens to my lungs, they sometimes comment on this. I am always on the edge of short of breath, and find this somewhere between creepy and terrifying.

The twisted pair inside my chest

Astute readers will recall that last week I had a dual-lumen Hickman catheter installed in my left chest by Interventional Radiology. It hasn’t worked worth a damn since.

image

Inputs are fine. They can pump stuff down all day long. And if they’re pumping down, they can extract. But right now I’m only on the infuser about 30 minutes per day. And after a while, output shuts down. No blood draws. Apparently I either have excellent clotting factors, or the lines are twisted in my chest and pinching one another. The horrible, whole-body spasms I’ve been having with the wrenching and coughing can’t be helping that either. Right now I’m waiting out a TPA push to see if that clears. Otherwise I’m afraid they’re going to put me on KVO (Keep Vein Open) orders with a continuous drip. My real terror here is that they’ll decide to take this out and put another one in.

Meh.


Images copyright their respective holders.

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[cancer] NIH Day Six

It’s Monday morning here at scenic NIH. I haven’t eaten anything since Friday afternoon but two soda crackers, of which I thrwe up. My dreams have been filled with strange chowder, including the realization that I own a Black Knight pinball machine. In point of fact, I do not, though I’ve long coveted them. They’re spendy to buy and spendy to maintain and where would I put one anyway?

They started me Friday afternoon on Cyclophosphamide as my first stage chemo agent. My mind and body both went to tell. Since then the longest stretch of sleep I’ve had is about three hours, and my total across three nights is ridiculously low. Plus all the usual stuff like diarrhea and vomiting. Uncontrollable in my case, which is unusual. Plus some unusual (for me at least) stuff like all 32 of my teeth aching at once, and my face browning hot to the touch.

I’ve run a series of low grade fevers. The chest port they put it keeps clogging. One of my nurses believes the lines are twisted inside of mu chest. Some of the vomiting was so severe that afterwards my forearms ached for an hour so, something I’ve never experienced. Dad, [info]tillyjane (a/k/a my mom) and Lisa Costello have been magnificent.

I have been magnificently miserable.

Things are a bit better today. The chemo I’m on until Friday, the name of which escapes my right now, is much more narrowly targeted and shouldn’t leave me feeling so oppressed. I need to lose the Cyclophosphamide-induced gag reflex before I resume eating, but hopefully that will be today.

When I start the IL-2 on Friday or Saturday in order to supplement the TIL cell infusion, I’ve been told to expect a weight gain of 20-30 pounds in less than a handful of days. It can do weird things to your metabolism. I’m also told I’ll lose that weight before they discharge me, presumably by pissing it away, but wow… That also puts me in mind of ascites, which I expect to be a feature of my terminal decline.

Meanwhile, I suffer for science. Please excuse any weird mistakes in this blog post, my brain is not fully back on line yet.

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