I’ve always measured my years from the autumn. I think it comes from school, of course, which was until way past conventional “school” age (and remains to this day) a huge part of my life. The awkwardness and excitement of September has kept up with me, although more recently the holidays, kicking off with preparations for Thanksgiving, have taken a lead position.
Anyway, if change is gonna come to my life, autumn is when I’m primed to deal with it. My cancer, which was diagnosed at the close of the holidays last year, bridged autumn and winter, and I managed to keep up with it. But it’s autumn now, and time for things to sort themselves out.
My swallowing still sucks, and every evening thick ropes of mucous form in my throat. But over Thanksgiving I got hooked on the turkey gravy. Managed to chug quite a bit of it over a couple of days. Well, a couple of half cups, at least. More oral “food” than I’ve managed over the past weeks.
And this seems to have triggered something inside. I actually woke up hungry the other day. Pounded down a big glass of Instant Breakfast (made with whole milk to maximize calories, of course). I’ve been hungry at some point every day since. Can’t do much more than thick liquid (tonight I had some egg drop soup from the Chinese take out place), but on the other hand, at least I’m doing thick liquid!
Also, my chest drain pulled out last night. Two photos following show it. The white plate with the holes in it was inside my chest. To travel to Boston a couple weeks ago, I had to cut off the balloon collector from the end of the train and tie off the drain (traveling was hard enough without having to empty a balloon full of liquid every few hours). Apparently, the drain was superfluous, and let itself be yanked out as I tossed in my sleep last night. We’ll find out on Wednesday when I see Dr. H (for a drain removal!).
Finally, following is a photo of the wonderful linocut print Janice M. made to honor her brother’s conquering his throat cancer, this is the proof she sent me. It’s the apparatus needed to get him his meds when his throat closed up shop from the radiation. Looks a lot like the apparatus I used for the same purpose! I hope she doesn’t mind my posting it here (Janice, just let me know, I can pull the photo if you want).
Anyway, Thanksgiving was fabulous as usual, albeit exhausting. Thanksgiving photos and a bit of text up at http://docviper.livejournal.com/ so be sure to check in!
I had to travel last week. For the whole week. Those of you whose first thought was “dude still has in and out drains, can’t eat or drink, can’t talk, and is too weak to carry a briefcase, much less a suitcase, this must’ve looked like a bad Marx Brothers movie” are spot-on. Between the big toxicology meetings in Boston, and a client meeting tied to same, it was rather professionally required that I attend. Thanks to the tolerance of the research sponsors and the foresight of the project manager, I didn’t have to muddle through a formal presentation at the conference. But I am coauthor on much of the work and responsible for a bunch of it. Had to be there. Slapstick or not!
Among the key comedy-script themes is the Butt Problem. I used to weigh 276 pounds. I now weigh right around 190. My hip bones spent the first 57 years of their life amply padded. Now, they stick painfully right at whatever I am sitting on.
Oh, did I mention I took the train to Boston? I couldn’t see facing airports in general, much less trying to get my peg, port, and extra drain through security. Besides, the train ride is relaxing and pretty, running from the upper Chesapeake, along Long Island Sound, and past Back Bay. Only thing is, even on the Acela it’s more than 6 hours of sitting. And even with the nice, comfortable Acela seats, my butt hurt after an hour, and was pretty well bruised after the full trip.
Then there’s the Food Problem. I’m supposed to be on a routine of pouring a couple of cans of UN emergency rations into my feeding peg several times a day. This engenders several contretemps. First, there’s not really opportunity to peg-feed on a crowded train. I suspect the discomfort level is not unlike a woman breast-feeding a child, with perhaps the addition of a little general public disgust for the fact that the tube sticks straight out of my abdomen. So, first, I gotta carry enough cans of food in my luggage to eat as soon as I arrive somewhere private. Under no circumstances am I able to swallow actual food in meaningful quantities. Which means I also need food for the entire week. So I fedX’d a case of ration cans to the hotel. Which worked ok, except for a) the conference venue being 600 or 700 meters from the hotel, meaning a lengthy hike to get my several-times-a-day rations, and b) I had to switch hotels mid-week, meaning I had to carry even more cans of food across town with me. Feeding also requires that I have with me 60 ml syringes (which serve as the funnel to the peg), and plenty of water to flush the feeding apparatus with so it’s not stuck full of milky canned rations. Oy. I’m guessing I lost a little weight over the course of the week!
There’s also the Temperature Problem. Since the radiation really started to whack my physiology, say around April, my thermal response mechanisms have been out of kilter. Basically, I’ve been freezing since then. I spend almost all my working time at home in front of a blasting space heater, at the office right underneath a main heating vent. First night at the first hotel, the heater was not working. Called for maintenance. Took the guy not-too-long to arrive, but by the time he got there I was in the middle of feeding—had a syringe full of goop, cans on the coffee table, bottle of water at the ready. Had to answer the door to let him in. While he was futzing with the heating unit, I had an accidental decoupling of the syringe from the tube and associated spill of liquid rations. Fortunately I had a towel ready for just such an emergency. Unfortunately, the towel didn’t catch the first half pint or so, which poured onto my sweat shirt and sweat pants. And while I’m fighting with my hydraulics, the maintenance engineer finishes up and is ready to leave. So now I have to a) cover the goop running down my front, b) hide as best I can the syringe (now back attached to the tube), c) find cash for a tip, and d) get the guy out of the room. Did I mention the word “slapstick” in conjunction with this trip? In any case, when I finally had things under control, I set the heater on “deep fat fry” and spent a cozy night!
Anyway, I survived the trip. Saw many old and good friends missed others who I know were around. Thanks much to the former, apologies to the latter but maybe this blog entry will help explain why I wasn’t hanging around the booth much—I was probably hiking back to get some “food”! Thanks also to all of you reading this. Special thanks this week to Janice M. for the wonderful, wonderful gift and uplifting letter.
I love you all—have a great Thanksgiving, everybody. I just finished making a huge pan of tomato sauce with meatballs and sausages for the baked ziti. I can just about smell that turkey and the seven-rib rack of beef cooking!
Parasites and parasitic life styles seem sort of simple-minded and brute-force on their face. For many parasites, a simple balance between taking what they need from their hosts while making sure not to take so much that the host population is affected (after all, not only do you gotta eat, but all those generations of little parasites to come gotta eat as well!) defines things.
But of course that’s just one end of a spectrum of evolution that gets incredibly complex. The creepiest parasites, and there is a surprisingly large number of them, take over not only the host’s physiology, but its psychology and behavior as well. There are fungi, for example, whose spores land on insects, and the mycelia—the “roots” of the fungus—burrow into the insects’s body (often these are ants or roaches of various kinds). While the insect is in the prime of its life, the fungus is careful to avoid the ant’s vital organs and feed only in nonlethal parts of the body. As the ant ages, though, the fungus takes over part of its brain. The fungus adjusts the chemical messages in the brain so that the ant crawls to the very top of a stalk of grass or weed, and then clamps its jaws tight on the plant. At that point, the fungus completes its job, consuming the brain and vital organs of the insect. Then the fungus produces spores, which are now nice and high in the wind and can spread good distances to find more hosts [1].
There are many other examples [2]. Toxoplasma acts like a sedative to rats, not only keeping them from panicking when they smell cat urine, but making them seek cat-favored places to hang out. Certain kinds of worms with partial aquatic life cycles get back to the water by triggering suicidal psychosis in grasshoppers, causing them to drown themselves and allowing the parasites the swim away.
Cancer isn’t usually viewed as a “parasite”, nor are its neurological effects generally considered major aspects of its pathology. But I can tell you this—one of the most devastating outcomes of cancer and its treatment is the fact that you, the victim, are not in control of your life. Or death. Or pretty much anything except how stoically you can take the pounding from both sides.
I realized this a few weeks ago after my first round of surgery. Doctor H scraped out all the lymph structure in the area likely to have acquired stray malignancies. This was done really as a precaution—there was no evidence at that point that my lymphatics were affected. But the cancer was large and advanced, and the odds were good that it had reached out and touched tissues beyond the obviously impacted right parotid gland.
That surgery was supposed to be a landmark on the road to recovery. At that point, the cancer was gone from my body, and the future should have been under my control.
But it wasn’t. The failure of the surgery to stem the flow of lymph into my chest cavity meant I couldn’t get enough nutrition—particularly of the goopy gut-tube liquid—to get stronger. And I could feel it. Moving out of bed took serious effort, taking a short walk required Spartan commitment. Like one of those grasshoppers headed for the nearest farm pond, I was helpless in my own body.
So I went back in for another try. That was the surgery a couple weeks ago on a Tuesday. I knew by the time the anesthetic wore off that evening that we had failed again. I could feel that I was still fighting to keep myself from going for that swim.
That was why it was so important for Dr. H to come in that Friday with a fresh approach, an old hand, and a willingness to tackle the problem again right away. This time, by Saturday mid-day, I could feel a huge shift in my reality. Basically, I could feel that the flood of lymph had stopped, meaning that the last ongoing manifestation of the cancer and its treatment had been taken care of. Life—and recovery—were back under my control. The sense of panic—panic that there was nothing I could do to help repair myself—was gone. Oh, I still have the serious voice impairment, and the trouble swallowing, the inability to eat or drink by mouth, and the weakness that comes from 10 months without serious exercise. But those things are mine to fix now. Now it’s up to me to exercise, and straighten my voice out, and get myself eating real food. And maybe there are limits to how far that recovery goes, and for sure it’s going to take massive effort. But the worms no longer have my brain. I’m not hopping toward that pond, helplessly putting one leg in front of the other at somebody else’s bidding. I’m on my own and it’s up to me.
Sure feels good!
Notes
[1] http://neurophilosophy.wordpress.com/2006/11/20/brainwashed-by-a-parasite/
[2] http://www.livescience.com/7019-mind-control-parasites.html
So the docs came up with a slow-and-steady response plan to the failure of Tuesday’s surgery to stem the flow of body fluids from the lymph vessels to my chest at large. Concept was to stop using my gastrointestinal tract completely to let the physiology heal itself, in the meantime reestablishing my devastated nutrition via intravenous (vs. gut-tube) feeding. After a few days, the theory was, the exploded lymph system, decoupled from the forward pressure of the gut, might start to knit itself together enough to slow the tidal flushing.
For mostly logistics reasons, this plan went immediately awry. The scrip for the IV nutrition, apparently dangerous if not meticulously prepared, precipitated a kick around between the pharmacy and the docs. The potential for several days invested in mostly waiting with a fairly high potential for little therapeutic return seemed to be on everyone’s mind. The docs didn’t seem all that confident, but were reluctant to move immediately to more drastic and intrusive fixes.
That all went down over Wednesday and Thursday. Friday was now the day to begin to implement the attrition strategy. So it was something of a shock when Doctor H walked into my room at 9 o’clock Friday morning to say “Listen, I got an idea. How would you feel about going in for another round of cutting. Like, say, now. We can get an operating room on an emergency basis at 10:00. I think this will work and we should do it.”
This is one of those moments that patient advocates, patient advisors, and patients with any rational concept of risk management decision making would have a million detailed questions, starting with the basic “what do you want to do while you’re back inside there?” I’m sure we had time for at least a few inquiries and answers, a few moments for reasoned consideration and risk/benefit balancing.
I didn’t bother with any of that. I told Dr. H that if he thought there was something he could do by hacking his way back inside my chest within the hour, I was on board and ready to rock. He said he’d go scrub, I could sign the releases while they wheeled me downstairs, and he’d see me in the operating room in half an hour.
Next thing I knew, I hurt like hell again, Cathy and Molly had dropped everything and hotfooted it to the hospital, and nurses were injecting me with pain killers in the recovery room.
On his way home for the weekend Friday afternoon, Dr. H stopped by my room. He’d come to apologize, he said, for the way I got slapped into another round of surgery with zero notice and minimal technical justification. But he said he’d been waking up in the middle of the night all week worrying about the inability to stop my fluid losses and growing increasingly ticked off about a passive response strategy. He said he finally snapped, figured he knew which way I would prefer to go, and essentially over night lined up his department head, graybeard faculty guy who had more thoracic surgery experience than god, to participate in the operation. He said they dug into my chest until they found three cryptic lymph vessels leaking way in the back corners and tied them off. Then he glued me back together.
I not only told him not to apologize, I thanked him for having the courage to take a hard-core aggressive path and to cover details like getting his department chair on board.
Status? I hurt like hell, especially my mouth, which has big-ass inflammation from, I think, the breathing tubes, and parts of my neck. But it looks like they cut the flux of lymph. Hell, if my mouth heals and this weird IV feeding bag stuff works, I could be a functional human being in no time.
You gotta love a surgeon not only willing to trust his own instincts but enterprising enough to make it work when he had to line up an emergency operating room and staff and engage a busy senior colleague and courageous enough to suggest to me that I trust his instincts as well. A professional masterpiece on Dr. H’s part that I can only admire and humbly learn from!
10,000 years ago, when the Wisconsin glacial epoch was at its peak, what is now the southwestern U.S. was cooler (duh) and moister than it is now. Not like a swampy Siberian forest, mind you, more like a tall grass prairie—say, Iowa before corn and wheat. The big marshes and shallow lakes of what is now Los Angeles were attractive water sources for the flotsam and jetsam of ice age wildlife. But it turned out that the ponds were teed up on pits full of sticky petroleum goop—the La Brea Tar Pits.
When a wooly mammoth stepped off the bank and got stuck in the goo, the more it struggled, the harder it got to escape. Since failure to escape was often accompanied by a back full of dire wolves and saber tooth cats (which contributed to the sinking of the entire biological ship), finessing your way out of the increasingly difficult trap, finding a way to spend less time glued to the cartoon-concept landscape, were important.
For me, hospital stays come with a large measure of time-in-the-tar pits analogy. It took me two separate sets of multi-night visits to get my gall bladder excised. After my chemo and radiation, my quick visit to stem the dehydration and anemia ran most of a week. And this week’s trip was scripted as an hour of surgery in the afternoon, overnight observation, out of here first thing in the morning.
Now running into third night here, with more already added to the schedule, and about to start the odd procedure of being issued some sort of individually designed food mixture via intravenous drip. It is apparently customary to start such drips at bedtime.
I’m guessing that’s not a good sign for the culinary quality of the stuff….
Ray Davies wrote “gotta stand and face it…life is sooo complicated”… . Hard to argue with at the best of times. Ray wanted to “get away from…the complicated life son.” But you run afoul of a complex pathology like cancer in a structurally and functionally intricate area like your throat and, and the odds are good that things are gonna be complicated.
You also know from all those late nights watching syndicated re-runs of The A Team that “Plan B” is the funny one with, as Gimley the Dwarf points out toward the end of the Return of the King “near certainty of death, small chance of success? What are we waiting for?”
Here’s the deal, from day 2 in the hospital. Yesterday’s surgery was intended to plug fluids leaking into the spaces in my neck and chest where they cut out the lymphatics last month on a more or less prophylactic basis.
Once they got inside, they found what looked like the source of the leakage. But the tissue was too beaten up by the radiation to take sutures—they just kept ripping out. They improvised a fix with some sort of geotextile fabric stitched to the leaking vessel, but didn’t sound real confident in the post-op briefings.
Today it’s clear that things are still leaking. Thus the A-Team Plan B. In this one, they stop feeding me by tube into my gut and bring in some specialist team that hooks me up to get nutrition intravenously. Apparently the thinking is that if we can give my beat-to-shit GIT and lymph system a vacation, they will recover with less travail.
The whole thing sounds sort of wackily complicated to me. But I keep this in mind—in the A Team, Plan B ALWAYS worked.
I’ll keep you updated. Thanks for being here for me, everyone. I’m not sure what the hell Plan C might be at this point, but it’s a sure bet it’ll be fun given the reality of Plan B. We’ll see!
