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| I woke to a chilly day in Dallas — 27° w/constant freezing drizzle, ice on everything.
Zhora and the boy in hibernation.
Now I'll try to finish this toss-off-turned-beat-down of a blog post started yesterday. FINISHED OUT THE STORY OF MY HOSPITAL STAY 2nd DRAFT DONE AS IT'S GONNA BE (SUN DEC 8) |
"The being whose analysis my task is, is always I myself. The being of this being is always mine. In the being of this being it is related to its being. As the being of this being, it is entrusted to its own being. It is being about which this being is concerned."
—Martin Heidegger, Being and Time (1927)
As all healthy children, I was born a natural scientist, pre-wired to suss out the rules governing my environment, the behavior of others around me, and eventually myself and what odd place I occupied in the chaos. My good luck was being born to a family where such stuff was not unexpected, misunderstood or misdirected. I was always allowed to play and explore and experiment with dirt and water and fire and sharp things and bugs. I never liked or did well in school, but I never stopped the initial program of learning. When something old starts making sense because I learn something new, I get a pleasant little body-buzz of that’s how it works! Or an occasional great WTF. Both feel good. Since the brain tumor diagnosis last January, I’ve naturally turned my attention to learning new things in the service of making sense of the old problem called getting-sick-and-dying-young. I’ve studied cancer in general and my specific melanoma (w/BRAF V600E mutation) closely enough to get the gist. Nasty little beasts. I understand how and why I have cancer in my brain. It’s unfortunate, but it makes sense. It’s unpleasant news to all concerned, but it’s not unacceptable; it’s not a punishment or cruel twist of fate. It’s a fact among many comprising my current state-of-being. My Da-sein (German for "being there") according to Heidegger’s Being and Time, which I’ve only just begun reading:Being is my concern.We must analyze a fundamental structure of Da-sein: being-in-the-world. Da-sein is not a structure which is pieced together, but rather a structure which is primordially and constantly whole. It grants various perspectives on the factors which constitute it. These factors are to be kept constantly in view, bearing in mind the preceding whole of this structure. Thus, we have as the object of our analysis: the world in its worldliness, being-in-the-world as being a self and being with others, being-in as such—etc., he lost me here...
[blink-blink] Where was I? Oh,
Just as anyone who’s lived a reasonably active life, I’ve had ups-and-downs and profound turn-arounds; I’ve bottomed-out a few times and bounced back. With each change of trajectory, the previous path remains accessible only via sketchy memories of things learned up to the point of redirection; the rest is all undifferentiated gray fuzz. The new path ahead is usually a shiny blank inviting further exploration while offering almost no guidance. Life. It is only this wonky assemblage of discontinuous fragments hot-glued with good sense into a self-supporting structure recognized each time I wake from a dream that makes the madness enjoyable—if all things weren’t so fascinating it might be a huge bummer.
BREAKING NEWS:
Nelson Mandela (1918-2013) died today at the age of 95.
Lucky bastard… Where was I? The science behind our latest understanding of cancer and various approaches to treatment is nearly overwhelming in scope. Progress comes from all directions across disciplines, built on over 50 years of rigid research, record keeping, trial and error. Current information technology and data mining/analysis techniques allow researchers to do “meta studies” of past studies, comparing histories, clinical results and previously unrecognized useful minutiae. New findings are so quickly reviewed, published and shared that notable progress seems to pop up monthly. There are well-identified genetic factors contributing both to cause and cure; there are environmental factors from the time of your birth; possibly factors contingent on the quality and location of your birth, definitely the quality of your development, activity, diet and outlook. There are proven physiological and psychological factors constantly contributing to the balance of our health, either boosting or crashing our immune systems; building or crushing our will.
This is a very interesting time to be a cancer patient in the First World. The speed of discovery is driving a flurry of treatment breakthroughs being vetted in successful trials and fast-tracked for review and approval by the FDA. When my treatment options were weighed 10 months ago, I was fortunate to count among a subset of melanoma patients distinguished by a well-studied mutation to the BRAF gene located on a long arm of chromosome 7 (one of 23 pairs of chromosomes in the human genome housed in each cell of the body, cancerous and otherwise… it’s a long story. See below if interested[1]). The BRAF gene is responsible for expressing the B-Raf protein used within cells for signaling and directing cell growth. This mutated signaling is precisely targeted and disrupted by the latest and greatest of a class of drugs called B-Raf inhibitors. The FDA approved the very promising Vemurafenib (the name cleverly cobbled from V600E Mutated BRAF Inhibition) for late-stage melanoma in late 2011, about one year prior to my diagnosis. However, at the time it was not approved for brain metastasis such as mine, so not covered by insurance. The brain is a tricky place for drug therapies due to the very resilient blood-brain barrier keeping most chemicals out in misguided defense of the brain. Luckily, my oncologist had observed anecdotal evidence of Vemurafenib penetrating the blood-brain barrier and benefiting patients like me. My very prominent and easily observed brain tumors combined with my otherwise freakish good health made me a model study candidate. Thus, I got access to a cutting-edge therapy, all bills payed. And the data collected, if positive, would contribute to future FDA approval and access for others in my situation under coverage of their insurance. And it worked for about six months. After that, observed tumor shrinkage became stability, then slight growth, then a population of resistant cells formed a new lesion next to an old one. Then we bailed on the study in favor of some quick radiation to zap all the old spots and the new resistant one at the same time. This route could have been taken from the beginning, but irradiating the brain, even with today’s Stereotactic Radiosurgical state-of-the-art, is undesirable if a good drug might kill the tumors with less peripheral cell damage. Unfortunately, during the few weeks between getting off the study drug and starting the radiation treatment, all hell broke loose. A hires pre-zap MRI showed an additional scattering of new small lesions. Fuck this. Time for scorched earth. We zapped everything with three sessions over the course of two weeks. I felt unwell and spent a week lying on my sofa renting movies on my laptop. Then I got brain swelling due to my robust immune system rushing to the surgical sites in my skull where it really had no room to work. This caused nerve pain from the top of my head down through my spinal cord to the once stretchy bundles in my legs as if a great connecting rubber band was suddenly half its length and brittle to the point of snapping. Then a new right temporal lesion in conjunction with a seeping hemorrhage spent the weekend shorting out control of my left leg, starting at my toes and progressing up past my ankle to my quads. By Sunday night my foot was completely dropped at the ankle and I felt weakness increasing in my knee. Monday morning, with no motor control below the hip, I loaded my backpack with devices, books, clothes and snacks, woke my son and had him drive me to Baylor where I limped into the ER and spent a week under observation trying to head off further functional collapse, such as breathing, heartbeat or consciousness. I had nurses, doctors and pastors stopping by at regular intervals encouraging me very tactfully to complete the "advanced directive" paperwork. This would save everyone the hassle of struggling with conflicting emotional interests by officially stating my personal preference for extended life support in the event that a creeping brain bleed blew my master fuse. This is not a DNR (Do Not Resuscitate)—if my heart stops, please restart my heart; if I stop breathing, put me on a respirator. However, if my brain fries to the point of voluntary and involuntary systems shutdown; if I suddenly can't tell you what I want and two doctors say they can't fix me, you can trust that my advanced directive is "pull the plug", chop-chop.
That was the week before Thanksgiving—the week I was supposed to spend in Jamaica with friends. Ouch. Once again, I recalibrated for the unexpected new trajectory and actually had a pleasantly relaxing time with the wonderful staff of nurses and doctors at Baylor Hospital. They are badasses of care-giving, ninjas of positive attitude. Accepting the situation and focusing on survival, I felt no weight of daily responsibility. They enjoyed my music and good humor and I enjoyed letting them fix me. If I must spend time in a hospital, Baylor is the place for me.
By Tuesday the pain was reduced to almost nothing with the use of dexamethasone, a corticosteroid to suppress my immune response and reduce inflammation. The worst discomfort beyond that point was my lame back getting achey from lying so still. Under normal circumstances, at home, I don't often sleep late because my body begins to ache after six hours in bed. I always get up and get active, go for a bike ride. Twelve to twenty-four hours with only minor pee breaks is a recipe for stiff and grumpy. But they gave me dilaudid on request, so my nights were restful. On Wednesday, one of the rotating internal medicine doctors came by and got my story. She agreed that a fresh CT scan was probably a good idea (I'm constantly asking for additional scans to track activity of the front line battles in my head). The transporter showed up in about an hour, browsing through then stowing my chart as he rolled through the door. I sat up and transferred myself from the edge of my bed to the lowered gurney. He smiled and said, "I'm impressed." "Thank you," I replied, "I'm looking forward to this little field trip." My chauffeur rolled us down a dozen hallways, down two elevators, up another, then through a few quick turns to reach the lab. He matched the height of the gurney to the CT bed and locked the wheels as the tech came out from his control room to help. He began reaching across the bed to drag me over, but the transporter said, "He's got it." I laughed, rose on my elbows, hooked my good right foot under by bad left calf and in one, two, three awkward squirmy side-shuffles got across and up to get the back of my head positioned in the little clamp. The tech said, "I'm impressed."
I enjoy telling my story to the various hospital staff I encounter. They're usually outwardly relaxed and always helpful, but all they ever have to go on is the staccato history laid out in a metal-bound flipchart. My situation was an alarming read in January. The current draft seemed to give people a jolt. When my scan was complete, the tech strolled out and began to unbolt the upper portion of the clamp to free my face, asking how I felt as he did. I smiled and transferred myself back to the locked gurney. The tech asked when all of this started, so I launched into a condensed version covering everything from my 2012 skin cancer excision, all-clear follow-up scans, January's cycling seizure, brain surgery, eight months of experimental chemo, the recent tumor shitstorm, radiation, swelling and my new floppy leg and trip to the ER. He shook his head and shook my hand. I gave him a sly nod-n-wink and asked how my scan looked. I knew the techs never offered up info, that was for doctors. But I'd already engaged this one in a technology discussion as he strapped me down earlier. He was a twenty-year veteran at this job and got to see things advancing so quickly it was hard to follow. He sat in front of monitors and got real-time views of everything inside me. "Did you see the bleed? How big is it?" He grinned, "I'm not supposed to discuss this stuff with you," holding both hands in front of his face, thumb-to-thumb, middle fingertips together indicating a rough circle the diameter of a softball. "I don't see people like you conscious, up and talking, moving around." The transporter chuckled, waggled his head and kicked the wheel locks loose. I nodded as we rolled out the door, "I keep hearing that."
Good news came Wednesday afternoon. My oncologist was sure he'd deciphered and organized the mess we were in: 1) The new big lesion on my right temporal lobe gave the appearance of being radiation resistant (mentioning this to my friend Patrick evoked a quick That's a thing?!—apparently so). It seemed to have grown a few millimeters since the last zap and was at least partly directly responsible for my creeping loss of function. Then, due to its filthy, weepy nature and added pressure from post-zap swelling, the surrounding bleed was wreaking havoc across the surface of my brain; 2) The study drug, Vemurafenib, stopped three weeks earlier in order to promptly deal with a new population of resistant cells, was apparently working a lot better than we'd realized. The surge of new tumor sites was likely due to the environment in my skull suddenly being less hostile to the little bleeding meanies; 3) He had a new drug for me, Dabrafenib (brand name Tafinlar from GlaxoSmithKline). The cutting edge in B-Raf inhibitors, unavailable when things began in January, it received FDA approval as a single agent therapy for melanoma brain metastasis just five months earlier in May. The possible side effects were roughly equivalent to Vemurafenib (which I'd handled with little trouble), the dosage was lower—two little 75mg capsules an hour before my first meal and two more two hours after my last meal for a total dosage of 300mg daily (Vemurafenib was four 240mg pink Centrum-sized horse pills twice daily for a whopping total of 1920mg)—and the objective response rate (OOR) was significantly better. Unfortunately, the drug was still hard to come by and it could take a few weeks for the order he'd placed to come through, complicated by the approaching holiday weekend. In the interim he had a few samples in a personal stash that should cover the gap. He handed me a little bottle with 28 capsules (14 doses, one week's supply) and said he had one more in reserve if I needed it before delivery of the big batch. He was confident, given my positive reaction to the older drug, that we'd see improvement within just a few days, indicating tumor shrinkage and observed as a return of motor function. Science, fuck yeah!
Thursday through the weekend and following Tuesday were considerably more upbeat. By Friday, after only two-and-a-half days with Dabrafenib (5 doses), the drifting weakness that had progressed to my left shoulder and elbow, requiring me to summon assistance for potty breaks, reversed. Before sunup Saturday morning I detected sketchy voluntary control at my hip and some at my knee with concentration. Of course I didn't sleep much after that. I spent hours in bed focusing on the leg, trying to move it at different joints—I think I was doing it wrong, but it's hard to keep focus from turning to frustration turning to straining to being the closest I'd come to shitting myself during the entire ordeal. But it moved (the leg, not the bowel). The recovery didn't come as quickly as the onset, but it felt like I might get back the ankle and toes in just three or four days (that hasn't actually occurred yet, but I'm still hopeful—home health physical and occupational therapy starts next week in earnest, two visits a week from each). Regardless, the mood was such that I forgot to turn in my advanced directive and wasn't bothered for it again.
My oncologist and the great PT/OT staff conspired to get me cleared for release by Tuesday afternoon in time for a much anticipated Thanksgiving weekend with family at my brother's place in Tyler, TX. After nine days in the hospital and several days of progress, no apparent side effects from my magical new drug, a handful of successful cane-assisted trips up-and-down the halls and up-and-down a flight of concrete stairs (iffy at best), I got my walkin' papers. My buddy Cecil picked me up at 5pm and ran us by the neighborhood Walgreens to put in my impressive list of new prescriptions. Taking an hour to fill, we bolted down the street to Burger House for chicken-fried steak sandwiches, sodas and more french fries than we could choke down. Bloated on system-shocking fast food and happy, it was back to the drug store for meds and provisions. I cheerfully flopped my way around the store behind a little grocery cart, impulsively selecting random crap from every isle; miscellaneous art supplies, snacks, light bulbs, tissues, batteries. Cecil helped me get into the house, get the snacks up the stairs and left me to settle in. Three hours later I was comfortable on my upstairs studio sofa with Zhora and a fine tequila. My father would pick me up in the morning for an extended week in the country. The end.
mostly unfinished crap below—maybe more later, maybe not
...
This is still a half-ass work in progress—for anyone interested, I'll finish later. Some friends are swinging by on their snow mobile to give me a lift to the pub. Wish me luck with a floppy leg, cane and ice-covered sidewalks. mission accomplished
DRINK ON!OFF
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What I’ve most enjoyed in my personal research are the recent leaps in genetics and the emergent biochemistry of metabolism, cell growth and mutation. My melanoma is a variety occurring in approximately 50% of the those diagnosed. It’s distinguished by a mutation at V600E, ??? The BRAF gene is located on the long arm of chromosome 7 and is responsible for expressing the B-Raf protein used within cells for signaling and directing cell growth.
???
?????
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[1] There are 46 total chromosomes in the nucleus of each human cell. Proper chromosomes occur in 2 sets (autosomes and allosomes) of pattern-matched pairs: there are 22 different autosomes, each paired with its twin in a duplicate set of 22 for a subtotal of 44 chromosomes occurring equally in both males and females; there is one cross-matched set of two allosomes, or sex chromosomes (known as X and Y), which occur in 2 combinations to determine gender with a set of Xs (X+X) for little girls and a mixed set of one X and one Y (X+Y) for little boys. Individual chromosomes are the larger emergent structure formed by tightly packed, intricately wound single strands of DNA23,000 human genes ???
...
Every human cell consists of an outer boundary membrane filled with cytoplasmic jelly (80% water). Within this tiny, cloistered jelly domain buzzes a team of specialized machines called organelles—they smuggle material through the membrane, juggle proteins around inside, translate, sort, fold, package and transport. Organelles labor tirelessly in the shadow of the alpha organelle, the nucleus. The ??? inner sanctum of every cell, the nucleus contains, protects and utilizes our genetic material’s inherited code for the expression of proteins and a few functional micro machines used for reading, writing, repairing and copying. Every nucleus contains ?????
This article posted 09/30/2013 at 9:13 am offers encouraging news. The Next Showdown in BRAF-Mutant Melanoma "Not only are both GSK agents already approved in the U.S., but GSK has already received FDA priority review for accelerated approval of its combination based on the randomized Phase II data, with a Prescription Drug User Fee Act (PDUFA)* target date of January 8, 2014." Link — http://www.obroncology.com/blog/2013/09/the-next-showdown-in-braf-mutant-melanoma/ *PDUFA Legislation and Background"Since the passage of PDUFA, user fees have played an important role in expediting the drug approval process." Link — http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm144411.htm
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