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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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[personal] Lacuna of wit and erudition this day

I slept poorly on Thursday night, so yesterday was very low-and-slow. Still managed some socialization when [info]mlerules came over bearing pizza and we all watched Despicable Me 2imdb ], a household favorite in these here parts.

Having a family gathering at midday today, again here at the house so I don’t have to strain myself going out. I’m capable of driving, but it exhausts me, so I do as little as possible, and only where there’s a strong value associated with that investment of my time and energy.

At any rate, I grew neither irate nor inspired about anything, so today is Banal Blog Post day. Feel free to ask questions in comments, if you wish. About anything that strikes your fancy.

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[cancer] Field notes from Cancerland, another West Coast edition

Headed to the doctor yesterday, twice

Yesterday I saw both my primary care physician and my palliative care physician. I wanted to bring them up to date on our NIH adventures, and also seek help for this stupid persistent cough, as well as discuss my general fatigue and lassitude. They were both productive consultations. Amusingly, each doctor had a very different approach to the cough. My palliative care doctor was most concerned with symptom reduction, prescribing Tessalon Perles. My primary was most concerned with addressing the root cause, and ordered a chest x-ray and an Albuterol inhaler. We eventually determined that these medications played well together, and I’ve gotten permission from my NIH doctors to proceed with treatment.

Back to NIH on 3/4

I have my new schedule schedule in hand. I’m flying back to NIH on Tuesday, 3/4. I’ll check into the hospital that evening. Wednesday 3/5 I have a CT scan mid-morning, and two MRIs that evening. One for my brain, the other for abdomen. MRIs are a pain the neck, though not especially painful in an objective sense. Having two in a row is going to be a real treat. Thursday 3/6 I am having my central line put in, a dual-lumen catheter that I believe will have a left subclavian placement. I suspect that will be rather painful in an objective sense. Friday 3/7 I commence seven straight days of kamikaze chemotherapy. (I’ve been asked by my doctors to gain some weight before I come back, which given that I am already medically obese is a strong commentary on what they expect to happen during treatment.) Friday 3/14, I commence the TIL cell infusions. At that point, the schedule becomes unpredictable due to possible variables in my response both to the infusion and afterwards as I recover from being profoundly immunocompromised.

So game on.

Will I be too sick to resume treatment?

Anent the above items, one of the things I worry about is whether I will be too sick to resume treatment. I have felt terrible this last week and half, in some sense worse than I felt even in the immediately post-operative period. My palliative care doctor thinks it’s not unreasonable for me to expect to get better in the next two weeks before I return to NIH, but at this point in my disease progression, nothing is certain. All I know is that there will have been an enormous amount of time, trouble and money spent on not much outcome if I wash out at this next step.

I’m pretty sure that’s an emotional fear on my part rather than a reasonable clinical expectation. Nonetheless, it’s real and powerful.

On the plus side, I feel better this morning than I have in the better part of two weeks. So maybe progress is being made.

Weird ideas about living through my own death

Even now, as I feel my body winding down and my mind wandering further and further away, I still marvel at being alive. Sometimes an odd fantasy occurs to me. It’s actually a trope I’ve seen in science fiction now and again, a form of solipsism. In effect, sometime I wonder if I cannot experience my own death, or perhaps I’m already deep in the midst of the experience, while my mind continues to create a simulacrum of reality around me. Logically, I’d eventually be the last man on the empty Earth if this were somehow true.

I don’t think it’s an escapist fantasy on my part. I’m escaping nothing. More of a weird fillip of my literary brain. Like my occasional expectation of a deus ex machine sweeping in at the last moment and saving me from the grave. An odd twinge in my thinking, to say the least.

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[personal] Five things make a post, I think

Let’s see if I can count.

1) Dad, Lisa Costello and I are flying home this afternoon. This because NIH pushed back the start date of my immunotherapy by about three weeks from what we originally expected. I can’t really complain, as the reason for this is the genetic selection phase they added to the protocol in order to leverage my Whole Genome Sequencing data and optimize the TIL cell infusion, but it adds another layer of financial cost and logistical complexity to the whole business. Frankly, instead of waiting here to start treatment, we’d have gone home two weeks ago if we’d understood the schedule. Such is personalized medicine in this age of miracle and wonders.

2) I am increasingly interested in seeing the The Lego Movieimdb ]. This film seems to fall into the category I call “movies which are much better than they have to be.” A good example of this is 2012’s ParaNormanimdb ], which was an animated kids’ comedy about a zombie attack on a New England town. But it had a clever, well thought out script with an ending far more humane than one would ever expect from a zombie movie, which made watching ParaNorman a much more rewarding experience than one would ever expect from the film’s subject matter, genre or marketing. So perhaps with Lego. Maybe this week.

3) The persistent pain knot in my chest has faded a bit. I have recently started taking gabapentin for it. I’m not sure if the connection is causal, as gabapentin has a titration period before it becomes effective. In reading up on gabapentin, I discovered that it can be recreationally abused. Which amazed me. I guess people really will try anything.

4) I have been trying to compose a post about Kansas House Bill 2453, which is a profoundly senseless, cruel effort to enshrine wholesale persecution of gay and lesbian citizens into law, masquerading as a defense of religious freedom. I just can’t figure out what to say that doesn’t make me sound so shrill and angry that I can’t even stand to read it myself. This is the apotheosis of the Republican religious-conservative axis into Poe’s Law, in which their extremism has transcended even self-parody. I have only one question for the religious conservatives of Kansas: “Would you do as you would be done by?” Sadly, we already know the answer to that one.

5) After that number four, I don’t have the heart for a fifth. I guess I can’t count.

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[cancer] Slipping over the horizon

Lately, I feel as if I’m dissolving.

This morning, I recalled the plot of a story, and couldn’t remember if I’d written it, or read it as someone else’s work. (I still don’t know, as of this writing.) That’s literally the first time I’ve ever done that. I used to be able to recount the title and plot of every story I’d ever published, hundreds, but it’s been a long time since I had even that much grasp on my own memory. But this type of confusion? This was new.

Also this morning, my liver pain is back. I suspect it’s never left me, but has been subsumed into the surgical recovery process and that nagging knot of pain in my rib. I suppose in a sense this is a good thing, as it means that the other pains have receded enough for me to notice the difference.

This entire week, I have been off. Substantially fatigued, easily further tired by much activity, mentally vague much of the time. Uncharacteristically petty of emotion and quick of temper, though I’ve mostly managed to keep my trap shut at those little surges. There’s the small, persistent cough. There’s the rib pain. There’s the declining appetite. Both Lisa Costello and Dad have been worried about me.

Every bit of this is reasonably consistent with the intersection of post-operative recovery and me entering my terminal decline with the advance of my cancer. Like I said, I feel as if I’m dissolving. Bits of me are growing weaker and thinner, or vanishing altogether.

This is what dying means from the inside. Not some big, dramatic personal Götterdämmerung. Not some noble, long-suffering, Hallmark Movie of the Week struggle complete with sappy occasional music to cue the tears. Just a slow dissolution, slipping over the horizon. A quietly frustrating fade to black.

I dissolve, wishing it were otherwise.

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[cancer|travel] An unexpected brief trip home

We received another email from my NIH doctors yesterday afternoon. Due to the extra time required for the genetic selection process, they will not be starting the first steps of my immunotherapy treatment until March 7th. Given that we’d originally expected me to be going back into the hospital about now, that’s a significant gap. So we’re going home.

As you might imagine, this led to something of a logistical fire drill yesterday afternoon and evening. We got everything sorted out, but it took a bunch of time and energy.

Had we understood this timing back when I had the surgery, we’d have gone home a week or two ago. While the extra time and expense spent being here in Maryland is more than a bit frustrating in retrospect, in the end it’s all good. Genetically personalized immunotherapy isn’t exactly a standardized process, seeing as how I am literally the first person in the world to be treated this way.

I’ll probably be coming back around March 5th, as I assume they will want to redo many of my lab tests, CT imaging, and so forth, before commencing treatment. Plus I need to have the subclavian catheter inserted. So Dad, Lisa Costello and I are flying home tomorrow. I’ll spend a couple of weeks sleeping in my own bed and hanging out with [info]the_child. I will also be At Home to family and friends in Portland (or from elsewhere if visiting or passing through), so I can renew some of my social connections.

Unexpected, all the same.

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[cancer] Field notes from Cancerland, gearing back up for the hospital edition

Where’s Jay

I am back in Rockville, MD, with Lisa Costello and Dad, waiting for the call to go back into the hospital. We had a lovely week in Ocean City. At this point, given the extra step of the mutation-driven selection of my TIL cells, I don’t expect to go into the hospital before next week, but anything is possible.

The weather outside is frightful

Not really. Though it’s been mighty cold almost the entire time we’ve been in Maryland, including the December/January trip for study enrollment. Not one, but two polar vortices. Meanwhile, back in Portland, snow accumulation yesterday was about 10 inches. With up to an inch of ice atop that by tonight thanks to freezing rain. This in a metropolitan area with no snow plows, salt or sand trucks, or (except for the winter sports people) much experience in snow driving. [info]the_child has been home from school since midday Thursday, and I’m pretty sure is getting cabin fever.

Restarting my routines

This morning I spent ten minutes on the recumbent bike in the hotel gym. That’s the first time I’ve exercised (other than incidental walking around) since the surgery. My legs and lungs were doing fine, but I was starting to get pain in my right chest, associated with the surgery site, so I stopped. I also resumed my formal meditation practice this morning, albeit at a shorter time than usual. So I’m getting back to what passes for normal these days. Until the hospital interrupts it all again.

The chest pain

No, not in the heart attack sense. Post-operative pain and discomfort in my right chest. The actual surgery wounds vary from inert to uncomfortable to mildly painful, depending on my body posture and activity level. Lying in bed reading Facebook, they don’t bother me at all. However, the knot of pain in my rib (number six, I think) persists with annoying consistency. The pain knot isn’t actually at any point directly affected by the surgery. I believe, based on my prior experience of my left thoracotomy back in 2009, that I’m experiencing referred pain from the surgery site.

To be clear, everything I have now is low-grade pain, falling somewhere between discomfort and two or so on the pain scale. Irritating and distracting, but not debilitating. Given that I’m only seventeen days out of surgery, that’s just fine with me.

The intersection of surgical recovery and terminal decline

All of the above being said, my oncological hypochondria persists. I should be moving along nicely into my terminal decline about now. So I wonder, is this chest pain a symptom of larger issues? Am I not going to heal completely from the surgery due to my body’s depleted ability to respond? Why is my GI doing [whatever it’s doing today]? I’ve been oversleeping, by my standards, but I know that’s perfectly normal for post-operative recovery. I keep wondering if I should be doing better than I am. It’s a lovely place to be, inside my head.

Attitude

I’ve had a number of occasions to recount my medical history recently, ranging from abbreviated casual conversations to my recent visit to the urgent care center in Ocean City to have my stitches removed. Almost without exception, people compliment me on my attitude. You know what? My attitude sucks. It’s terrible. I’m always torn between rage and grief and fear. But I don’t wear that around. I don’t lead with it, and I rarely follow up with it. Not because I’m suppressing or in denial. Rather, because angry and depressed is no way to live. So I choose otherwise. But the hard, bitter reality is never far from the surface. Whenever someone tells me I have a good attitude, I can feel the monster flashing a fin.

Still looking at death, every day

In the car driving from Ocean City to Rockville yesterday, Lisa Costello talked about what we refer to as “cancer thoughts”. Mine and hers, though mostly mine. It’s not a frequent topic between us. For one thing, most of what needs to be said has been said. For another, it’s a godawful buzzkill. Most of the time you just have to live your life. Even now, when I’m a giant sack of tumors with a punched ticket, we still have to live our lives. But it’s always there. Breathing in my ear. Freezing my heart. Talking to me in the twinges and cramps of my body. There is no escape.

I miss my willful innocence.

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[personal] Happy Birthday to Mother of the Child, with bonus sports snark

Today is Mother of the Child’s birthday. She does not have a social media presence, so I mention it here to wish her well and happiness.

I believe there may also be a significant-to-some-people sporting event somewhere today in honor of her birthday. I wish the contestants well with the same majestic indifference both Mother of the Child and I have always applied to all sporting events not involving [info]the_child herself on the field of play.

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[travel|cancer] Maryland, My Maryland

Dad and Mom (who has been visiting) are checking out of our Rockville hotel today. Lisa Costello works today, but tomorrow we’re off to Ocean City for a week of quiet. We’ll back here in Rockville a week from Saturday. I expect to be called back into the NIH possibly sometime the following week, possibly not til the week after.

Originally it would have been early that following week, but the business of using my Whole Genome Sequencing data to provide genetic screening of the TIL cells is adding to our wait time.

Meanwhile, my side hurts a lot. Some ill-advised movement the other day set my recovery back a bit, and I have a wicked, painful knot in my chest which I’m pretty sure is a result of me favoring the area around the surgery wound. Still I am healing well enough that when I sneezed twice this morning, it was not mind-shattering agony. And I am finally able to sleep a bit.

Progress is made. Tomorrow, it will be progress headed eastward to the shore.

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[cancer] Recovering from surgery

As surgeries go, this most recent thoracotomy has been by far the least difficult of my six resections. Which is an entirely relative statement. Given my extreme aversion to opiates, my only pain control is a combination of Tylenol and ibuprofen. I twice refused opiates as a takehome medication, to the amazement of my NIH medical team, but I’m utterly serious about staying off opiates wherever possible.

And yes, it hurts like crazy.

Of particular annoyance is the fact that I’m mostly a right side sleeper. The resection of my left lung in the fall of 2009 left me with a permanent, painful knot on that side of my body. I’ve not been able to sleep comfortably on my left side since then. I’ve never been a back sleeper, except when very ill or heavily medicated. My right side is now impossible to sleep on due to the healing surgical wounds.

The astute reader will note this leaves me with a paucity of comfortable, or indeed, even uncomfortable-but-viable, sleeping positions.

Not sleeping is not so good for the healing process of surgical recovery, nor of health in general. Of such small challenges is life made.

Today we have to deal with a minor mechanical problem in the rental car, and possibly go shop at Target. I need to catch up on a week’s worth of mail and email, mostly of the paying-the-bills variety. Mom flew into town yesterday and is visiting friends, but Lisa Costello and I are having dinner with her and Dad tonight.

Life goes on. Just painful and exhausting.

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