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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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[cancer] NIH Day Five

The mid art part of the forty-eight hour infusion with no sleep. Not smart enough today to describe it well. Imagine sort of like this:

:: meds ::
:: meds ::
:: meds ::
:: piss ::
:: piss ::
:: piss ::
:: what the hell piss some more ::
:: meds ::
:: meds ::
:: harder meds ::
:: brain fade ::
:: vomit ::
:: piss ::
:: piss ::
:: meds ::
:: vomit ::
:: meds ::
:: doze ::
:: piss ::
:: piss ::
:: no sleep ::
:: vomit ::
:: poop:
:: meds ::
:: meds ::
:: piss ::
:: vomit ::
:: piss ::
:: meds ::
:: meds ::
:: more poop ::
:: doze ::
:: vomit ::
:: meds ::
:: way to much fucking poop ::
:: piss ::
:: vomit ::
:: meds ::
:: piss ::
:: no food of any kind ::

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[cancer] NIH Day Four

The first part of the forty-eight hour infusion with no sleep. Not smart enough today to describe it well. Imagine sort of like this:

:: meds ::
:: meds ::
:: meds ::
:: piss ::
:: piss ::
:: piss ::
:: what the hell piss some more ::
:: meds ::
:: meds ::
:: harder meds ::
:: brain fade ::
:: piss ::
:: piss ::
:: meds ::
:: meds ::
:: doze ::
:: piss ::
:: piss ::
:: meds ::
:: meds ::
:: piss ::
:: piss ::
:: meds ::
:: meds ::
:: doze ::
:: vomit ::
:: meds ::
:: piss ::
:: vomit ::
:: meds ::
:: piss ::

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[cancer] NIH Day Three

Yesterday involved some more will-we-or-won’t-we rollercoastering over my entry into the protocol. However, my WBC levels were down from 15 to 12, where 11 is the normal max, so everyone relaxed a lot. I also learned that the new imaging shows about 20% growth in my tumors on average, but no new organ systems were involved. This means nothing has happened which would interfere with the protocol from that perspective, also a good thing.

The main event was having my chest catheter put in by Interventional Radiology. I was on hurry-up-and-wait again yesterday morning, including an NPO order from midnight forward. They finally took me down around 11:45 for my procedure. The team there was very kind and supportive, and Dr. L— apologized for the fast. He was a kind, funny man who took a lot of care in consenting me to make sure I understood exactly what they were doing.

Dr. L— and his team did the procedure with me conscious but sedated on a mixture of Fentanyl and Versed. Normally, Versed gives me retrograde amnesia, but not in this case. And in truth, I’d have rather been unconscious. Hearing the surgical chatter is an interesting if mildly unnerving experience from the patient perspective, and the while time my right shoulder, which was uninvolved in the procedure, kept stiffening up. I guess that gave me a focus.

They went in to my neck and inserted a series of spacers, then went into through my left chest and pushed the catheter up to where the spaces were and threaded it into my left jugular vein. Plenty of local anaesthetic was used, but I still had lots and lots of odd sensations. Probably not a top five weird medical experience in my book, but definitely a top ten.

Afterwards, I was left with a sore neck.

This morning I have been started on IV fluids. Apparently a national shortage of medical-grade saline is affecting even small-scale treatment decisions, so there was some discussion of precisely when to start me. Pending a confirmatory report from the TIL cell lab, I’ll start the first chemo series at five o’clock this afternoon. That is an hour of chemo, followed by twenty-three hours of continuing hydration and very close observation (ie, waking me up every two hours to pee and carefully monitoring my fluid intake and output). This will go on for forty-eight hours. Sunday evening they switch me to the other chemo agent for a five-day run.

So, yay? We are almost at the beginning of the business end of this protocol.

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[cancer|personal] NIH Day Two

Yesterday consisted of a great deal of hurry-up-and-wait. Sometimes NIH remembers that it is a hospital. After the initial discussion about me perhaps washing out of the study protocol due to my elevated white blood cell counts, the doctors temporized a bit. If we could find a clear source of infection, I would wash out. My CT scan showed no evidence of pneumonia. If my WBC trended down, I might not wash out. That was re-tested again the this morning, results as yet unknown. If last night’s MRI shows any sign of infection, I might wash out. Results unknown. Sometimes large tumors release signalling hormones that cause elevated WBC, so I might not wash out.

Blargh!

I still don’t know. The doctors’ language got easier and more supportive every time they popped in as the day went by, but we’re a long way from closure in either event. Or not. This could change at any moment. The issue, of course, is if I do have a real infection somewhere, flat-lining my immune system with chemo starting tomorrow will kill me. This is a suboptimal outcome.

The problem is that if I miss this window for chemo and TIL cell infusion, I miss it all. The cells grow and senesce. We’ve got about two days of wriggle room on this one. Otherwise the washout is total, not “come back in two weeks and try again.”

The MRI last night was pretty tough. They wanted both a brain scan and an abdominal scan, but for some reason not a lung scan. I spent about 140 minutes in the tube. I’ve lain inside a coffin, and trust me, they’re much roomier than an MRI tube. Somewhere in the last third of the procedure I was ready to climb out screaming and run away. Next time they want a double MRI, I will insist on either separate sessions for each imaging order, or sedation. (And yes, I was already tanked up on Lorazepam for yesterday’s festivities.)

Today I am supposed to be having the dual-lumen Hickman catheter implanted in my left chest. No one can tell me when, so I am NPO from midnight until sometime after whenever Interventional Radiology bestirs itself in my direction. Could be outside my door right now, could be three o’clock this afternoon. I will be one thirsty, grouchy bear if this takes all day. The catheter itself is a bit of a commitment, so I suppose it’s possibly my immunotherapy docs will have that procedure postponed until we’ve come to a resolution on the WBC issue.

This is making me very, very crazy. I’ve invested the time since late December in this protocol. To lose it now…

Grrr.

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[cancer|personal] My first day at NIH

Well, this has been a doozie. The flight yesterday was reasonable, and I set alarms to remind me to get up and walk every 30 minutes. This kept me from stiffening up. On arrival, after some delays on the tarmac, I was re-united with Lisa Costello. We went to dinner, then she brought me to the NIH hospital in Bethesda, MD.

I was late checking in, due to the travel schedule, and it took a while to get settled. Then around 10 pm they wanted a chest x-ray. Then an EKG. Then a urine sample. Then a blood sample or twelve. There was a small comedy of errors around trying to set a needle in my chest port. All in all, I did not go lights out until 12:30 am, which even by West Coast time is quite late for me. I slept very poorly, awakening around 5:20 to eat half a granola bar, as I’m NPO from 6 am on due to a forthcoming CT scan.

There’s been the usual cycle of doctors, nurses, dietitians and whatnot flowing through here this morning. The critical conversation was with Dr. Klemen. My white blood cell count is quite elevated, 15 on a scale where 10-11 is the top of the norms. My neutrophils are up as well. This is evidence of infection, which he believes is linked to my cough. Unfortunately, if we can’t get my white count down in the next day or so, I am at strong risk of washing out of the trial completely.

They simply cannot go in and flatline my immune system while I have an active infection. That could kill me. And the TIL cell growth is timed. I have to start that infusion within a pretty narrow window.

We’re hoping the white cell count is already dropping. They’ll be reviewing this morning’s CT for evidence of lung inflammation hopefully on the retreat. But as Dr. Klemen says, whatever I’m fighting, unless it’s already on its way out right now, we can’t suppress it fast enough to meet the deadlines.

So, yeah. Here we are, in March, on the journey that started last fall, and we may be looking at a wash out.

I cannot even begin to describe the bitterness I would feel at that disappointment.

We shall see what happens today and tomorrow.

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[cancer] Dead man walking, wearing a corpse

Saturday I was out and about with my offspring. She wanted some Dad time, and since I’m leaving town tomorrow for a month of grueling last ditch experimental genetically-driven immunotherapy, I said yes.

I drove for about two hours in the course of our outing. Around town, not nothing overwhelming. We popped by my Mom’s house briefly, we got lunch at a Burgerville drive-through, we talked about life and graffiti and urban infrastructure.

When we got home, I hurt. I hurt for the rest of the day. I hurt overnight, sleeping ten hours as my body tried to catch up. I hurt the next day, canceling light duty social plans to concentrate on healing. I still hurt this morning, on Monday.

But then I hurt all the time these days. My old liver surgery scars are stretched by the incessant coughing. Every two or three days I cough myself into wrenching nausea. My new surgery scars ache and sting. That band of pain below my right pectoral nags. I don’t breathe very well any more. Everything wears me out.

The idiot lights are winking on one by one on the dashboard of my body. I am failing. I am a dead man walking, wearing a corpse that hasn’t yet caught up with the not-so-exaggerated reports of its demise.

I will not give up. I never do. I reserve the right to lay down my arms near the very end, when all the battles all over, but the war is long since lost. For now, though, I go to NIH, I seek a treatment that will be at best brutal. It may extend my life, it may diminish my days. But this is my path.

And I am so tired. So very tired. Not hopeless, exactly, though as I read over these words they echo of hopelessness. But hope is something I abandoned long ago when I passed through cancer’s gates of horn and ivory. These words are the breath of someone who has already lived too long, worn out both his welcome and his pity, and continues because there is no other course but forward into the shadows.

I love whom I love, and I am loved by more people than I will ever know. Love keeps me going through the pain and loss. This is not a desert, just a tired landscape overwritten by years of struggle and the footprints of a thousand people who helped carry me.

Thank you.

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