[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.
Posted: 5:52 am Fri March 07 2014 | Comments(11) |
[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.
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…
Posted: 5:04 am Thu March 06 2014 | Comments(5) |
[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.
Posted: 7:31 am Wed March 05 2014 | Comments(7) |
[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.
Posted: 8:42 am Mon March 03 2014 | Comments(16) |
[cancer] Comparing pain cards just makes me want to go for my thankfully nonexistent guns
Yesterday, I read a blog post where someone was describing their struggle with depression in earnest, heartbreaking detail. Then they said something I found very strange. They described cancer as a “physically evident” disease, in contrast with depression, the very clear implication being that somehow people with cancer were better off compared to people with depression.
This irritated the hell out of me, and I spent some time trying to figure out why.
It certainly wasn’t personal. The writer wasn’t trying to put me down, or cancer patients in general. I think their point was that invisible illnesses are harder for other people to understand. Which makes sense as far as it goes. I’ve said the same thing about cancer, and cannot even begin to count the number of times I’ve been told, “But you don’t look sick,” or some close variation thereof.
Except suffering is not a contest. Suffering is not a race to the bottom. It’s not a competition to see who has the worst, most unspeakable affliction.
Not to mention, many people with cancer, and I suspect most people with metastatic cancer, struggle with crippling depression right alongside their disease. As is true of most chronic and fatal illnesses, I should think. Given that depression often accompanies cancer, the idea that people with cancer somehow have it better than people with depression is a ridiculous one on the face of it.
Also, for whatever it’s worth, as I said above, cancer is also largely invisible. I’ve been ill for six years as of next month, and for most of that time, unless I was in surgical recovery or deep in the throes of chemotherapy, you couldn’t tell it by looking at me. Even then, I mostly looked like a gaunt bald guy. I could just as easily have been a meth head as a cancer patient.
These days my disease visible, but not as cancer. I get mistaken for my father’s brother, my mother’s husband, my partner’s parent, my child’s grandparent. But what I look is old, not cancerous. To the casual eye I’m 49-going-on-60something, not 49-going-on-tumorous-wretch.
I appreciate that the blogger was writing from a place of deep personal pain. But what read like an expression of envy for visible disease such as cancer was very hard for me to interpret with good will. I’ve done the chronic clinical depression thing, from my childhood into my mid-twenties, complete with suicide gestures and hospitalization. I know that world intimately from the inside. Now I’m doing the terminal cancer thing, starting at age 43 and going through an awful downward slide that has carried on for years. I know that intimately world from the inside. They don’t compare, they’re both beyond awful. One is not luckier than the other.
Really, truly, it’s not a contest. Claiming that people with some other terrible disease are better off than you is a strange form of reverse privileging. Assuming that cancer patients don’t struggle with depression as deep and crippling as chronic clinical depression is simply thoughtless. I mean, I could just as easily say, “Hey, you depressed people, with proper treatment you can lead rich, full lives, but I won’t live out the year. You have it way better than me.” Which would be about the stupidest, most pig-ignorant thing I could say to my friends who struggle with depression.
Really, truly, cancer patients do not have it better than the depressed. We’re all struggling here. We’re all suffering here.
Posted: 8:39 am Mon March 03 2014 | Comments(5) |
[cancer] Some details on my NIH schedule
I fly back to DC next Tuesday, and check into the NIH inpatient facility that evening.
Wednesday I’m getting a CT, a brain MRI and an abdominal MRI. I’ve asked for an Ativan to help me be still for two hours inside the MRI tube.
Thursday I’m getting my chest catheter put in.
Friday (3/7), the chemotherapy starts. It will be in two phases. The first phase will last 48 hours, with twice daily infusions of about two hours each. This phase will require me to be awoken and have my urine output monitored every two hours during that entire period. I have been told not to expect to get a lot of sleep those two days.
The second phase will last five days with twice daily infusions of an hour or so each. During that period, I will be allowed to go out on a pass if I want to lunch with family or friends, or just be out of the hospital.
The cellular infusion will occur on 3/14, and it’s a one-time event. The variable days after that are the number of times I can tolerate the thrice-daily infusion of the helper drugs intended to activate the TIL cells. Those occur at 7 am, 3 pm and 11 pm. Very few patients have lasted all five days, to maximum dosage.
I’ll then be in recovering until my immune system is sufficiently robust for me to be released. That can be as little as seven days, but that patients with a lot of chemotherapy history usually take longer. I pointed out to the nurse I was speaking with that I’d had 1,600 hours of IV chemotherapy over the past five years, which seemed to surprise them. They said, “That’s a lot.” Figure at least ten days for me, possibly two weeks.
I can have visitors whenever I’m willing to tolerate them, but while I’m neutropenic I won’t be allowed flowers in my room.
So there’s two points of variability in my stay length, but if I had to guess, I’d say three-and-a-half to four week inpatient experience.
Return followups will be on a monthly basis for at least the first two months.
Posted: 7:16 am Sat March 01 2014 | Comments(7) |
[cancer] The cough is finally diminishing
The cough, while still present, is finally diminishing. This makes an immense difference in my quality of life, minute-to-minute and day-to-day.
Posted: 8:40 am Thu February 27 2014 | Comments(3) |
[cancer] Field notes from Cancerland, symptomological edition
I continue to feel as if I dropped a few tiers in baseline health in about the past three weeks. My overall levels of energy, physical integrity and so forth simply aren’t what they used to be. I am listless, and activity tires me out quickly. This is to be expected as I continue through my terminal decline, but I dislike it intensely.
I have at most minor discomfort from the surgery sites, and even that is intermittent. But the pain stripe on my chest, below the pectoral muscle, continues unabated and deeply annoying. Beyond that, my breathing has not felt quite right since the surgery. Given that there are about two dozen tumors in my lungs, perhaps this is not surprising.
The cough, which didn’t emerge for more than week post-operatively, continues to bedevil me. It’s gotten a big bigger and deeper, and is definitely bronchial. I continue to not show any other signs of infection, there is no phlegm produced when I cough, I have no post-nasal drip. Just a cough. For which I am taking tesselon perles and using an albuterol inhaler, to no apparent effect. Twice in the past few days I’ve coughed so hard I’ve become nauseous, and barely avoided deep unpleasantness. Last night I coughed so hard I developed a very painful stitch in my right side, along the line of the open incision surgery scar from my last two liver resections. So, yeah, this sucks.
I am beginning to develop small sores which do not heal. Right now, one in my left armpit, one on my left hip. They’re sort of like infected pimples, except they don’t get any better. This is a minor annoyance in the grand scheme of things, but definitely an annoyance all the same.
Sleep is elusive if I don’t medicate. If I do medicate, I sleep too much most of time. At this point, oversleeping is better than undersleeping, but it’s another bit of evidence for decline.
Oddly, my GI, usually the first of my bodily systems to grow unruly, is currently behaving. But this is the dying process. Little things going wrong, and big things creeping up.
Posted: 9:12 am Tue February 25 2014 | Comments(4) |
[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.
Posted: 8:11 am Thu February 20 2014 | Comments(3) |
[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.
Posted: 7:16 am Sat February 15 2014 | Comments(6) |
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