A couple of observations. I didn’t expect whole blood to be so…well…red. And you gotta love a wiry Oriental woman physician like Doctor T, willing to show up precisely when needed to grab your hospital gown lapels, head butt you, look deep into your eyes, and tell you to “Stop. Being. A. Baby.”
Which leaves just this question. How the hell did we get HERE?
Basically, I miscalibrated. By light years. Enough so even the photon torpedoes won’t leave fingerprints on your Space Time Tomography plots.
And what I learned is not to get a smart-ass swelled head thinking the war is won when it’s just another day in the cold, barren trenches. Lincoln had to balance immense risks over selling the equivocal outcome of Gettysburg as the mission of the War. Of course he got his costs and benefits spot on. Last entry, when I declared I was on top and the cancer was now fighting for its life instead of mine? Dude, I was so, so wrong.
In fact, I was so wrong that the irony didn’t hit me until I woke up in the Emergency Room where they finally got the pain and vomiting stopped with massive doses of IV medications. And I didn’t realize the full-on irony until today, 3 days after being admitted to the specialty cancer ward.
While I was performing my bad imitation of the Sioux Destiny Dance, the chemotherapy and radiation were plotting their revenge. They got it Saturday night, when I could feel waves of what I could only hope were terminal nausea alternating with Abandon All Hope tides of pain in my throat and thorax. Cathy had to bail me out and buzz me to ER where I passed out in the wheelchair only managing to mouth the word “dehydrated”. OK, under the circumstances I could have picked a better word to try to communicate my issues, but I was distracted.
Anyway. 3 days on and I’m still here, and still not righted. Took quite the debate among docs to decide to issue me 2 units of whole blood to try to stem the anemia and associated weakness, shaking, and generally unsteady approach to life. Which I’m pretty sure was because the memory of “life” over Saturday night is burned into my forebrain and if that’s where it’s headed, I’m getting’ off the train.
But not yet. I’m slowly coming around. Tim arrived with guitar magazines, Bite Me, and Genome. Dr. Dan sent me off with graphic novel treatments of Do Androids Dream of Electric Sheep prequels. The very very red whole blood (Nurse K. swears it’s from an 18 year old athlete) is transfusing itself.
It’s just that I panicked a little earlier today when they bagged up serious drips of nutrients and electrolytes and pumped them into my port. All of a sudden, mucous membranes that had burned dry weeks ago under the assault of combined chemo and radiation suddenly let loose. My nose ran. My lungs wheezed. I started having a major stress incident at the memory of acute incidents of childhood asthma. And because I mentioned “lungs filling with fluid” to the nurse in my call, they had to send the portable chest X ray unit up for appropriate hospital risk control.
That’s when Doctor T showed up to slap me around. Oh, and get me back on Xanax (a little pharmaceutical love to go with the tough love).
I’m better now. Really. At least, getting better. Slowly. Slowwwwllllyyy. Not fast. Not in any over-testosteroned war metaphor. Just fighting my way back out of the black.
Oh yeah. Alice Cooper’s stone classic Love It To Death remains criminally unremastered and rereleased for the digital age to this day. Doesn’t matter. I’m buying a copy on my way out of here, whenever that turns out to be. Since Saturday night, I’ve been singing that verse in Ballad of Dwight Fry: “I was gone for 14 days, but…I coulda been gone for more…wound up in a cancer care ward…lyin’ on the floor…”.
Diagnostics and treatments come in rhythmic sequence. Week by week by week in daily measures we count off the accents: radiation, blood drawn, radiation, visual exam, radiation, chemo infusion, radiation, see the nutritionist, radiation, see the oncologist, radiation, see the social worker, blood drawn… . The routine is comforting, especially when it comes with the positive feedback of Dr. Z’s eyes lighting up when she palpates the tumors and find they’ve shrunken and softened and with the kindness of the facility and the nurses who let me invade their space to use quiet corners as my office.
This week, my overall pain pattern changed. Not sure why. My tongue is covered with volcanic-looking lesions that are the second-degree radiation burns. But they don’t hurt as much as they did. Maybe I’m just getting used to it. Certainly the blunt, pounding pain of the tumors themselves is less. It’s easy to feel that the tumors are smaller and softer. Now I have a very specific and intense pain. It feels like there’s some kind of sore dead-center on my epiglottis. When I swallow, it feels like there’s a lump going in and out with the valves, like somebody super-glued a #2 buckshot covered with sand in my throat. Makes it almost impossible to talk (which isn’t that easy in the first place). But it’s apparently very important that I practice swallowing so that when the entire mess is cleaned up I can still do it. All 4 of the senior docs working my case gave me that advice independently, so, weird as it seems that you could “forget” how to swallow, I’m following it. Despite the bumpy “ouch” I get every time.
Emotionally, it’s not really been a roller coaster ride—more like a long hike through dull and difficult country to get somewhere interesting. But something snapped on Tuesday. I could feel it change. Not that the destination was in sight—although the first stop, end of radiation and chemo—is indeed this week upcoming. Something changed inside. Took me a while to place it. But it finally crawled through my thick hide, the pain, and the drugs—I’m winning. I’m not fighting for my life anymore. The cancer is fighting for ITS life. I don’t know how or why or what altered the hormone balance that kept me in equilibrium through the past couple months, but something sure as hell did, and tipped that balance my way.
Not that the war is over. In the completely pointless land battle for Berlin in spring 1945 that could not have changed the outcome of the war no matter how it went, more than a million people--hard-bitten Soviet infantry and German children and retirees dragooned into launching Panzerfaust rockets into the the Russian armor—died. And that only accounts for nominal “combatants”. Add in the civilians, and you can see that “winning the war” doesn’t mean the end of the battles or the pain or the complications.
Things aren’t pretty even at this point in the game. The radiation has made my 35 year old beard a cosmetic liability (and lord knows, I have enough of THOSE without adding to the total). The big tumor under my tongue has, in what are hopefully its death throes as it readies itself to face the surgeon’s scalpels, flopped itself into a big flabby mass on my throat. That’s the one that Doctor Z thinks is decomposing into the sore on my epiglottis.
That’s ok. I’ll take it. With a little strength returning (Colin and I went for a nice little hike on the Catoctin Ridge yesterday, photos to go up at docviper), and Dr. H sharpening his surgical tools for slicing me up next month, I’m starting to feel like the armistice will be something I can live with. We’ll see. Key word being “live”!
For some reason, in the 70s and 80s, we (by which I mean “systems ecologists”) were shocked and awed to learn that biology was just as hierarchical as the rest of the universe. Man, we were mesmerized. Books, papers, presentations, beer-and-pizza nights, were devoted by the jillions to hierarchy theory. We just couldn’t get enough of the organism/environment interaction from molecules to organelles to cells to organs, organisms, and up the chain to the biosphere.
The whole thing turned out to be sort of illusory—it was kind of a “fun while it lasted but not going anywhere” path, a rather masturbatory experience. The only person who made real headway was a guy named Conrad at Wayne State University, of all places. He published a fabulous book, in which he laid out a series of equations that linked ecology and evolution at all levels from molecule to biosphere. It was a work of art. Far as I know, he published one other book and is still at Wayne State. He was the one person who jumped on hierarchy theory and rode that horse somewhere helpful.
The only thing I got out of it ultimately was a quirky chapter in my dissertation. I took Conrad’s equations and re-wrote them to describe the ecology and evolution of chigger mites. It was a fabulous chapter. I submitted it as a speculative manuscript to a journal editor. He said “well, this is pretty cool, but I can only publish it if you take all those damn equations out of it.” And since the equations were pretty much the entire point of the piece, that didn’t make any sense. So it lived and died in my dissertation.
I just went back and looked at it. It still looks pretty cool to me. But I can see why the guy didn’t want to publish it. It really doesn’t go anywhere.
General theory on cancer is that it is a rigorously Darwinian phenomenon. Eukaryote (for the non-scientists out there, eukaryotes are higher organisms—like human beings, for example) cells arose as cooperative colonies of multiple species of prokaryotes (which are simpler cells, like bacteria). It is generally accepted now that the cells that make up human beings are composed of multiple kinds of bacteria-like things that came together to form the cells themselves. Yeah, you heard that right. Our cells originated via cooperation among microbes that form the nucleus, flagella, cilia, mitochondria, and other parts. It seems perfectly logical to me that competition among cells would be an ongoing thing. Cancer cells are doing their Darwinian thing successfully. They “win”.
Only for a short time, of course. But evolution is messy. Many diseases and parasites miss their mark and kill their host, which, if you are an evolving pathogen, is a dead-end path for you. But cancers come in many forms. Viruses, bacteria, pieces of DNA, pieces of RNA, other structural forms, are all potential escape routes for cancers. And they are being actively explored and exploited by various kinds of cancers. It turns out that several kinds of childhood leukemia result from delayed responses to infections. These cancers have already bypassed the cellular dead-end trap. They’re at large in the world, trolling for victims.
I’m back in the hospital now after having had a week off from the two-a-day radiations and once-a-week-all-day chemotherapy infusion. I didn’t heal as much in that week as I thought I might. The third-degree radiation burns on my tongue got better, but the nasty third-degree-er at the corner of my mouth just scabbed over. So I’m still not able to actually eat. I managed a couple tablespoons of ice cream the other day, and a splodge of instant chocolate pudding. BUT. I told you this place, Greater Baltimore Medical Center, is the best, right? My insurance company balked at paying for food and feeding hardware for me. Somehow, the nurses here got a waiver. Now I own one of these cool poles on wheels and a bunch of IV bags I can load up with liquid food and let it drain itself into my GIT. Here’s a shot of my United Nations Refugee Camp food supply. The stuff’s not bad. Which I only know because even if you dump it directly into your gut, you still burp it… .
Apologies for that. I’m guessing that was too much detail for most of you. But what the hell, since we’re on a roll here. First, here’s a shot of “dinner” ready to eat.
Here’s a photo of the feeding apparatus in “travel size” mode—skip the bag and pole, just dump the stuff into a 60 ml syringe.
And here’s the actual portal-to-my-gut. Behind the gauze pad, the pipe runs right into my stomach.
Oddly, I can’t feel anything in there, either by palpating or during peristalsis. I’ll have to ask the surgeon what the internal plumbing is like. He’s gonna hack out the tumor remnants a couple months after the radiation/chemotherapy torture is halted for good. Everyone seems confident he’ll be able to clean up the mess and the prognosis remains good.
Anyway, I haven’t been having much trouble from the chemo, at least in the nausea department. It DOES leave me intensely tired and weak, and the weakness went away during the week off. The nurse says I should feel pretty good this week, because it takes a week for the rad and chemo to catch back up and start to slash-and-burn. I hope so. At the moment, things hurt but not like hell. I could use another week before I get back to the pits of Dante.
I’ve got new material to go up across the board, so check all the sites along with this one:
http://theresaturtleinmysoup.blogspot.com/
http://sustainablebiospheredotnet.blogspot.com/
http://docviper.livejournal.com/
Thanks everyone. I much appreciate the support and I’m pleased you stopped by. With a little luck, I’ll be back in the kitchen soon, cranking out the appetizers. Can’t wait!!!
And it is definitely painful. The Discovery-slash-Science Channel network has an excellent hour-long show on lethally toxic Australasian jellyfish—several species of box jellies and the tiny Irukandji jellyfish. During the filming, one of the researchers is stung on a minute spot of skin exposed through her wet suit. The result is hard to watch—despite maximum doses of maximally efficacious opioids, all she can do it hold on and rock herself through the incredible pain of the first couple days of healing.
Given how important pain-sensing infrastructure is to animal life, and how psychologically complex it can be in humans, pain actually operates via a relatively simple system. The sensory neurons themselves have only a thin myelin sheath, and the sensory ends are exposed. There are two neurotransmitting chemicals, one for intense pain, one for less. The thin myelin assures that the pain signal is transmitted rapidly to the spinal cord, where specialized pathways get the message to the brain.
Except for a few acute acts of pure stupidity (mostly when I was younger), the most pain I’ve experienced in my life was a couple years ago when my gall bladder was packed full of cholesterol nodules and playing havoc with my pancreas and liver. That was pretty serious pain. In the emergency room, waiting my turn for the harried docs and nurses to get the psychopath in the room to my right (including an armed guard with weapon drawn) and the broken leg in the room to my left under control, I ended up laying myself out on the concrete floor because the cool, smooth surface helped. Next NP that passed gave me a big-ass shot of morphine (actual, primitive morphine! Upstairs in the room, they went for the more sophisticated Dilaudid). Morphine and morphine derivatives handled the pain of both the dysfunctional glandular system and the surgery itself, no problem.
Which means the radiation burns in my mouth (I was gonna give you a photo, but believe me, you do NOT want to see them) are officially beyond help. I got opiate patches in multiple doses, opiate tablets and capsules, sedatives, liquids, and big buckets of every over-the-counter pain product available. These handle the “big” pain—the pounding ache of the rapidly-degrading tumors themselves, and the inflammation of the chemotherapeutic drugs—with aplomb.
The radiation burns are a whole different category. The pain of the burns is sharp, hard-edged, and intense. It feels like a high-strength acid drip on each of the most charred spots (I know this because…well, remember those “acute stupidities when younger”?), constant and debilitating. Which has cascade effects, of course, on the remainder of my physiology and psychology. I find myself getting wound up and tense for no reason other than the grinding burns. I need to meditate deeply to get through the claustrophobic experience of being bolted to the radiation therapy table twice a day, and it takes several minutes of hard emersion in the pure mind to get past the mouth pain so I can still my panic.
Starting tomorrow, I got a week off from both radiation and chemo. The docs take things right to the limit, and they know when you’re gonna snap. I’m hoping that the burns heal enough with this week off so I can speak coherently and eat and drink via mouth rather than gut-stuck feeding tube. Then it’s back to treatment with a vengeance. First day back is two radiation doses and a full day chemo infusion. But I’m getting there. I think the docs are a little worried that two of the tumors—the basic big one at the base of my tongue and the parotid gland on the right side—haven’t shrunk as much as they’d hoped. They remain happy with progress—apparently their theory is that the tumors are so large that their loss requires necrosis and shedding of substantive quantities of dead tissue while they break down. I gather this is going to complicate the post-chemo-post-radiation treatment, add to the pain burden, and surgery will get a higher priority than they originally thought.
I’m good with that. Morphine takes care of surgical pain. Nothing takes care of radiation burns.
I leave you with this photo of my meds, essentially all of them intended, one way or another, to help alleviate pain. It’s a pretty impressive lineup of pharmaceutical products.
Once again I thank you all for stopping by and urge you to pass my information along to anyone who might give a rat’s ass. I got sucked into the maelstrom (how often do you get to use the word “maelstrom” in a sentence?) of 24/7 fight-for-life that I’m afraid I’m behind on letting people know what’s up. Give ‘em this blog address http://endoftheworldpartdeux.blogspot.com/, and if people need me in real time best bets are my google email address doctorateviper@gmail.com and texting my cell 443.812.8836. It is virtually impossible to talk on the phone…or even in person for that matter. Although I’m hoping I can use a phone for at least a few days during this week off when the radiation damage my partially heal. Remember if you’re interested to give a glance to http://docviper.livejournal.com/, http://theresaturtleinmysoup.blogspot.com/, and http://sustainablebiospheredotnet.blogspot.com/. I’ll get new material up on all the sits before this coming weekend.
Thanks again—I love you all!!!
Notes
Nice descriptions of various sensory receptors are available here:
http://www.innvista.com/health/anatomy/osenses.htm
although the site does not provide references.
The Wikipedia entry on pain is authoritative and well-referenced.
