The human skeletal system is a multitasking monster. Think about it. It fights gravity for you as a passively functional infrastructure. It anchors your muscles so you can breathe, play chess, and when you were younger, hammer a dynamite topspin backhand with that tightly strung T3000. It also massively vascularized—packed with blood vessels. So much so that if it is impossible for some reason to get an intravenous drip into your peripheral circulatory system, next option is intraosseous, pumping whatever you need into the circulatory system via your bones. Your skeletal marrow manufactures the red blood cells on which your entire aerobic physiology depends, does the quality analysis on the older cells, and swaps them out as needed.
The latter function means your marrow is intensely metabolically active. Which, as we discussed last year when I being hammered by the twice daily radiation makes it especially vulnerable.
To get the particle beams focused on my tumor, one vector was through my left lower jaw. That’s why they pulled so many teeth before starting my treatment—weak teeth die in place and rot away when they’re radiation poisoned. It turns out a very similar process of osteonecrosis (bone death) can occur in the jawbone itself.
And that’s where I found myself this week. That persistent pain “under my tongue” isn’t really in my tongue at all. It’s at the base of my mandible. A wide swath of the jaw in that vicinity was severely damaged by the radiation. That damage accrued to both the covering soft tissue and the metabolically active bone itself—the blood vessels and marrow. What that damage means is that there’s no good way for my immune system to protect that area—no way to get white blood cells, antimicrobial proteins, and inflammatory responses in place without a functional circulatory component. So now I have a nasty, nasty infection in my jawbone.
Last week, the dentist looked at the exposed bone, diagnosed the infection, and put me on both a systemic and a topical antibiotic. A couple days later, a piece of my jaw bone broke free from its decomposing moorings and rolled around in my mouth. I retrieved it and stuck it in a jar. Photo below.
After the hunk of bone broke off, I noticed increased pain in that quadrant. I started calling the oncology dentist, who is at the moment between offices. Got no call back on Post-Bone Chunk Day 1. By mid-day Day 2, I REALLY hurt and decided it was more than a dental question in any case. I called poor Dr. H, oncology surgeon, and he set up to see me late in the afternoon on a day’s he’s not scheduled at the hospital. I felt bad about dragging him in on a day off, but wasn’t sure what else to do.
He poked around and said the infection was pretty bad and that it was likely I would accidently break the bone and at that point it would have to be removed. He chuckled at the Actinomycin the dentist had me on, and put me on something much stronger. As he pointed out, it would kill everything that moves that isn’t part of me, and likely some moving parts—like my liver—that ARE me. And he said he wants me on it for the foreseeable future. If I managed to not break the bone, Dr. H thought we would try some hyperbaric oxygen therapy. They stick me in a pressurized chamber with a high-oxygen atmosphere and hope the banging on the circulatory system leaks a little oxygen and immune function into the infected bone. But he said he wanted to talk to the dentist.
The dentist had finally returned my call, and I had an appointment with him the next morning. When he saw me, he said it was a good thing the chunk of bone broke off—it was the most infected piece and needed to go. Wish he’d told me that earlier. He also said it looked like I was actively healing and might not need hyperbaric oxygen. Well damn! That was certainly a crack of daylight in the darkness!
So now I’m taking this enormous 300 milligram antibiotic tablet every 6 hours, rinsing my mouth with a harsh medicinal topical antibiotic, and regressed to tube feeding for a while so the swelling can go down and the infection can be controlled.
For all that, I’m not bad. It’s a painful and fussy setback. But the jaw’s not broken yet. With a little luck, I’ll be able to keep it. We’ll see! Thanks for checkin’ in everybody. I love you all. You’re keeping me on the road to recovery. And I sure as hell need the help staying on that track!
And sometimes it gets very messy. So messy it compresses your spirit, collapses your perspective, convinces your intellect that it’s as dark as it seems and there’s no sliver of daylight for a wedge of humor or irony. Basically leaving you whining and bereft of resources. And just about the time you reach that muddy bottom of the stinking anoxic soup that your life has become, you realize someone else is even worse off. And at that point, a spark burns deep inside, because you know the world—or at least said unfortunate individual stuck deeper in the dark goo than you are—NEEDS humor and irony. You rally. Do your job as a human being. And at the same moment discover that you’re not nearly as bad off as you seemed moments ago.
What triggered this Sunday evening harangue? The mother of one of Molly’s high school friends was diagnosed with tongue cancer, much like mine although it hadn’t made it full blown to adjacent glandular tissues—call it Stage 3. She is being treated at Greater Baltimore Medical Center, by the same head and neck cancer specialists who diagnosed and treated me. To save her, they had to surgically remove her entire tongue. They rebuilt it with a chunk of thigh muscle. This woman will have no taste for the rest of her life, and she’ll have to learn to talk by teaching a slab of leg meat to speak English.
And I thought I was having trouble getting my voice back. Jeez.
Anyway. I had an appointment with my oncology dentist (when I say that, doesn’t it sound like I have a whole staff at my command? “Wendy, please ask Charles to come to the Great Hall when he’s finished starching my wardrobe. The Sterling needs polishing…”). Which I figured was a good thing—as my mouth has gotten stronger, my tongue strength and gape improving, I’ve noticed a dull ache in my left rear jaw when I press my molars with my increasingly functional tongue. And last Monday night, as Tim and I finished our three hour class at the university, I noticed my mouth was filled with blood.
I was in for my first cleaning since my diagnosis a year ago, but I mentioned the pain to Dr. C. He took a quick look inside and said “Ooh. Let’s get an X-ray of that.” These are not good words to hear from ANY dentist, much less an oncology dentist.
It turns out I have a naked stretch of jawbone exposed in my mouth. Which is now coated with a nasty microbial film making a good living off the bone surface and microvascularization. The explanation for this contretemps, according to Dr. C, is that mouth tissue surrounding the six (!) teeth they pulled in preparation for my radiation treatment last year didn’t have time to heal before it was devastated by the radiation. When the soft tissue fried under the particle beams, it sloughed off. Leaving a length of my jaw exposed to the bacterial elements.
You know, I KNEW pulling those teeth wasn’t a good idea. But would anybody listen to me? Of course not. It is, apparently, a delicate balance. If your teeth are weak, the radiation kills ‘em and they rot in place. And in my case, if you yank the weak teeth, your mandible bone rots in place.
Sigh. Cancer. If it doesn’t get you coming, it gets you going. For all that, I’m actually doing rather well. My voice and gape are indeed improving apace. We spent the weekend in Atlanta feeding Colin at a high-end restaurant that cooks straight out of monumental encyclopedia Modernist Cuisine (they even put a spiced foam on Colin’s gorgeously crisped and perfectly cooked sea bass, served the rectangular chicken “nuggets” with spiced sauces in laboratory pipettes and a little blob of “encapsulated” blue cheese, and offered bleu cheese sorbet with the dessert assortment. The latter was not bad at all). I ate two whole slabs of chicken, half a crab hushpuppy, and a quarter-cup or so of incredibly rich cauliflower-cheese soup. I was still full this afternoon when we flew home after watching lacrosse Friday, Saturday, and Sunday.
So, in reality, I’m good. And grateful to you all for stopping by. Thanks so much!!!
PS--don't miss my new weekly weblog on Global Sustainability over at http://www.aehsfoundation.org/ . If you have a few moments to kill, I think it's worth a read. But then I would, wouldn't I?
In 1950, cancer in invertebrates was poorly understood. A review article [1] reported “spontaneous growths” in annelids (worms), arthropods (insects, spiders, and the like), molluscs (clams, snails), sipunculids (small rare blobby things), and ascidians (sea squirts, oddly closely related to true vertebrates and thus to people. “Oddly” because ascidians themselves are rather blobby, although not particularly small or rare), but pointed out that evidence of true neoplastic character was nearly completely lacking.
Since 1950, it has become clear that cancers are ancient genetic artifacts and that many invertebrates are subject to malignancies (for example, bivalves, [2]). Indeed, people are hopeful (as ever) that near-magic anticancer drugs will be extracted from the marine environment for applications in human treatment.
I’m skeptical myself. It seems to me that if we’re going to find magic cancer bullets, we’re more likely to find them in our own closely-evolved-in-concert-with-our-cancers physiologies than in the remote genomes of squishy or click-clackety invertebrates. But that’s probably why I’m not a cancer researcher.
I bring this entire arcane discussion up because I spent last week in Fort Lauderdale at a technical conference on managing contaminated sediments. Molly had a long weekend off, and she came down to vacation. On one of our jaunts to the Everglades, we managed to fulfill one of the top items remaining on my life list of things to do: find a uropygid in the wild. Uropygi are vaguely scorpion-like things that manufacture acetic acid which they spray defensively from a tube in their abdomen. They are popularly known as “vinegaroons”.
This little lady is only about ¾ of an inch long (in my browser, if you double click on the photo, it enlarges). When she grows up, apparently she will be the size of the palm of your hand.
Anyway. I ran out of time last Monday before I left for Florida, so I shipped a case of liquid medical food via FedX without strapping it with additional packing tape (which the office was out of, and I didn’t have time to stop at a FedX store to get the damned thing dealt with). It arrived at the hotel minus one can and wrapped thoroughly in packing tape. That’s pretty much what I figured would happen.
However. I pretty much managed to make it through the week without using my feeding tube at all. I stopped at grocery stores and bought as much Carnation liquid breakfast (and, when that was unavailable, Special K Dark Chocolate Protein Shake) as they had. Pounded down 4 to 8 bottles a day. Ate raw oysters, tuna sashimi, a few forkfuls of creamed spinach and wasabi mashed potatoes, and a bite of Molly’s incredible roast duck. Went offshore fishing on the last day of the conference, hiked for two weekend days with Molly, and only lost a couple pounds.
I must confess I fed myself two cans of food on the last night in Lauderdale. Thought I might dehydrate after all that walking in the Florida sun and wind. Still, I left 21 cans in the hotel room. We got back late last night. Haven’t used my tube today, either. My mouth is incredibly sore (I think the thrush is back. The morning after the night I ate a few spoonfuls of clam chowder, the back of my throat was still hiding blobs of chowder. THAT’S not hygienic, although I really can’t figure out how to completely clear things out). I seem to be out of Fluconazole, for some reason—thought I had half a dozen doses left. But, since with the anti-yeast biocides it’s always a toxicology race between your liver and your yeast, maybe it’s all for the best.
My weight was 187 this morning, and 192 before I took my evening meds (still via tube for those) last night. That’s not bad. I was up to 196 last weekend, so lost a little bit. Still, if I can get most of my calories by mouth, the last deep physiological impairment of the cancer will be overcome. Then it’s just working on my voice and getting some frickin’ exercise.
I’m on it. As best I can be. I slept most of today. Two days of hiking the Everglades was more than my shrunken musculature can handle. But I’m on it. Full report next week. Thanks for being here—you are still making my comeback possible. PS—my “singing” voice, such as it is, seems to be returning ahead of my speaking voice. I have half a dozen songs written that need production. If I can follow the Levon Helm model and get back to close-to-in-tune croaking (and I’m not sure why I should worry about being in tune NOW as opposed to the past), I’ll get ‘em recorded and up on the web for you. Thanks again. Love to all!!!
Note Florida pix and some travelogue up over at http://docviper.livejournal.com/ . Take a visit if you have a few moments. Some pretty pix. We packed a lot into two days!!!
Notes
[1] Scharrar, B. and M.S. Lochhead 1950. Tumors in invertebrates: a review. Cancer Research 10:403.
[2] Muttray, A.F., Schulte, P.M., Baldwin, S.A., Invertebrate p53-like mRNA isoforms are differentially expressed in mussel haemic neoplasia, Marine Environmental Research (2008), doi: 10.1016/ j.marenvres.2008.06.004
A Canticle for Leibowitz, by Walter M. Miller, Jr. is one of the greatest science fiction novels…in fact, one of the greatest novels in general…of all time. Miller wrote it after spending part of his World War Two enlistment at Monte Casino in Italy, watching friends and enemy die day after day in the shadow of an ancient monastery. Then he watched the monastery itself be destroyed when the allies got frustrated at their inability to move the German 10th Army out of the path to Rome.
Bombing the monastery proved to be both a strategic (the Germans weren’t using it as a fortress, at least initially) and tactical (once it was flattened, the place became a serious defensive position of rubble piles and deep cellars) error. But that’s beyond our purview here. Canticle closes with a stunning long-latent effect of radiation overdose after the thermonuclear destruction of North America. The punchline comes from the development of a slow-maturing tumor over many years. It turns out, the recovery from therapeutic radiation can take almost as long.
Timelines for cancer recovery—more specifically, recovery from radiation therapy—vary enormously from person-to-person and problem-to-problem. I’m now nearly 8 months out from the end of my treatment. I’ve recovered on many axes. Of the things that were hanging around the longest, that pain under the left base of my tongue is getting less and less. I think it’s probably just a patch of hard scar tissue pasted over the place where the tumor spent its frantic but thankfully truncated life. I have a surprising amount of salivary function back. Considering that my right parotid gland had been taken over by a large mass of tumor cells, I’m very lucky to have any moisture in my oral cavity at all. Indeed, many patients with Stage 4 mouth and throat tumors regain only a small percentage of salivary function after 36 months [1]. Presumably for those folks that is a permanent condition.
I do have that accumulation of mucous in my throat throughout the day and especially in the evening. And, most critically, I still have trouble swallowing. That is likely to be permanent in my case, I’m afraid. I’m gonna have to learn how to eat through the discomfort, dammit.
I saw my new Radiation Oncologist this week. A very young guy who replaced the big-personality woman who started me down the path. Somebody asked me last year when I reported how young Dr. H (Oncology Surgeon) was, whether I was ok with that (his youth). You know, technology and treatment change so rapidly that I’m inclined to think the younger the better. I’m reminded of a teleconference a couple weeks ago with our corporate “Young Scientist’s Group”. We’re transitioning its leadership from the young man who did it for the past couple of years to a younger woman. Her knowledge of communications technology kicked both my butt and the butt of the former Group leader. I’m guessing Dr. H has to struggle to keep on top of developments in his field, and the kids coming out of their residencies are further along the technical learning curves.
Anyway. Young Dr. N (who replaced retiring Dr. Z) peered around my mouth and throat. He said “Man, there’s a lot of swelling in there.” And he said “I don’t mean to be rude. But do you notice that foul rotten-meat smell from your throat?” I told him only sometimes. He says that’s from the radiation- and chemotherapy-killed tissues yet to be resorbed. He says given the size of my tumors, it could take years. And that for some patients it takes three years for the swelling to go down.
Icky. I guess I’m in for the long haul. Hopefully not as long as the Second Coming in Canticle for Leibowitz. And I suppose I need to do my part—start getting more exercise and learn to eat by mouth. For all that, a casual web search suggests that for many mouth and throat cancer patients, immune system function takes at least 12 months to come back and the throat mucous problem can take five years to forever.
Turns out I’m lucky. Not just to be alive, although that’s certainly a matter for gratitude given how advanced my cancer was. But to be as healthy as I am at this point, less than a year after treatment. And to think, I remember when a year was a long time… .
Notes
[1] http://www.ro-journal.com/content/6/1/125
Parotid gland-recovery after radiotherapy in the head and neck region - 36 months follow-up of a prospective clinical study
Jeremias Hey, Juergen Setz, Reinhard Gerlach, Martin Janich, Guido Hildebrandt, Dirk Vordermark, Christian R Gernhardt and Thomas Kuhn. Radiation Oncology 2011, 6:125 doi:10.1186/1748-717X-6-125
