It Might Get Messy
Actually, at this point there is no doubt remaining. It IS going to get messy. In fact, it’s beginning already. But before I override my whine-prevention chip, let’s start 50 years ago or so.
My Mom’s best friend was staying over one night at the cottage in Pompton Lakes. Given that it WAS an actual, tiny cottage, the poor woman was relegated to the couch in the living room. Which was the same room as the television set, just around the dining room corner from the kitchen. To this day, Ms. BJG (as we’ll call her) recalls awakening to what she has since described as “the most disgusting smell I’ve ever had to put up with.” Mind you, Ms. BJG had spent considerable time living in the Philippines, where every second or third smell fits easily into the “disgusting” category. But it turns out, my sister and I were parked on the living room rug, watching Rocky and Bullwinkle and eating cans of Campbell’s Cream of Chicken Soup straight out of the can—cold and with no dilution. That concentrated canned soup aroma was more than Ms. BJG could handle.
Actually, cold cream of chicken soup was one of my favorite quick snacks when I was a kid. For a real treat, I’d smear a can over a hot omelet, which made an actually delicious lunch. I passed my taste for cold canned soup on to my sister. Pushing Ms. BJG past her tolerance limits.
I bring this up because the taste and smell of my now radiation-cooked tumor region now tastes precisely like Campbell’s Cream of Chicken Soup, cold and undiluted, with a heavy sprinkling of onion salt straight out of the pantry. Now that I’m trapped with the smell, I find it unbearably disgusting. What goes around comes around, if you’ll permit me the cliché!
But that’s not why things are getting messy. They are getting messy because a) the radiation treatments are starting to kick in. Doctor N says he can see radiation burns at the tumor site. I know I can FEEL radiation burns all through the right side of my face and especially on my palate where the tumor is. Also, the radiation is sapping my strength. Some days it is all I can do to break my day-long sleep enough to try to get my calorie ration and get awake enough to take my second (afternoon) treatment. And the problem with the energy drain from the radiation is that sleep, while feeling absolutely impossible to resist, doesn’t really help. I’m just as exhausted when I I’m awake as when I’m napping.
The hospital has helped me out with this problem. They’ve moved me into an actual private office all my own, with a door that closes! See photo below.
Last week I worked hard editing a major book manuscript and getting some work done on our urban ecosystems book. So the office was very helpful. When I was awake. Still, it’s a nice gesture by the hospital to help me keep working while my physiology is taking a beating.
They’ve also initiated my chemotherapeutic infusions. On Tuesday, via freehand IV, I got my first treatment. The active ingredients of the chemo infusion for this round are two. One is Carboplatin, whose side effects include immunosuppression, anemia, fever, “very bad belly pain”, trouble breathing, loose stools, spontaneous bruising and bleeding, weakness and tiredness, nausea and vomiting, skin irritation, hair loss, and potential for serious anaphylaxis, among others. Attempting to get around these contretemps, the IV cocktail includes a long list of substances designed to suppress the ill effects of the drug. One of which is a high-powered steroid that thankfully hits my physiology like an IV of high-powered opiates. Almost makes the 3 hour chemo session worthwhile!
Did I mention they want to do MORE surgery on me this week? The medical port in my shoulder is nonfunctional, they want to remove and replace it to avoid freehanding my IVs. So this week is logistical hell. I gotta drive to GBMC to get my morning radiation, drive back to my GP for pre-op, go back to GBMC for evening radiation and to get blood drawn, next day I go in for surgery between radiation doses. I expect I’ll be quite the mess.
Really, the most annoying thing at this point is the production of really thick, sticky mucous in my sinuses and throat. I can cough some of it up, some of it needs to be blown out when it builds to a large volume. If I tip too much the wrong way when I sleep, I feel like I’m drowning. Actually, I probably AM drowning.
Anyway. The other chemo drug is Paclitaxel. Side effects are bone marrow degradation, fever, anemia, vomiting, mouth and lip irritation (my lips are like shredded tissue at this point), hair loss, numbness, muscle and joint pain, and inability to get pregnant.
Clutching at straws, I’ll go with that last side effect as a good sign. And hope they keep piling that steroid into the cocktail to suppress the rest of the list.
OK, sports fans. That’s it for this week, all. I am just too sick to do any more beyond this flagship column. I'm going to leave the rest of the weblog empire right where it is for this week, and get caught up on it during the week and ready for next weekend. So hold off a week before you check on the cycle of http://docviper.livejournal.com/ , http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/ , http://aehsfoundation.org/ (go to the lower left on the home page and click through to the blog), and don’t forget to check DAC Crossley’s wild west blog.
I am also behind on emails. I’ll make that my special target this week, to get emails out to all. Special shout-outs must go to Ms T in rural Alabama for the FANTASTIC gift package. Not only stuff to entertain me, but I am called out by name in her church’s prayer rounds. Given what a delightful person she is, and how much she cares, it may be that she can single-handedly (along with her church compatriots) help me find the road to recovery from the branching paths that lead to oblivion. Thanks again and love to everyone!!
It Might Get Messy
War between Greece and Persia began in the mid-500s BC when Cyrus I of Persia captured Greek cities in Ionia, on what his now the Turkish coast. Over the next 50 years, Ionia revolted several times, with support from Athens. By 494 BC, revolts were suppressed by Darius I operating both at sea and on land. Despite the successful outcome, Darius was thoroughly pissed off at Greece, especially Athens, for supporting Ionia.
In 490 BC, Darius expressed his dissatisfaction with the Greeks by invading the mainland, specifically heading for Athens. At the Battle of Marathon, an alliance of Greek city states defeated the Persian expeditionary forces, as announced by Pheidippides right before he dropped dead from exhaustion after running the 26 miles from Marathon to Athens.
Darius passed his affection for the Greeks along to his son Xerxes. Xerxes tried again to invade Greece, this time with a massive army of hundreds of thousands of troops and a large navy. Delayed at Thermopylae by another Greek alliance, Xerxes broke through after three days of intense battles with Spartans under Leonidas. The time lag was sufficient for the Greek navy to hammer the Persian fleet. Xerxes made it to Athens, but was thoroughly defeated at Plataea. Having tried three times to conquer Greek city states, the Persians gave it up and never again threatened Greece in any meaningful way.
And why am I subjecting you to this ridiculous historical abstract? Because there are layers and layers of lessons here for those battling cancer. Basically, cancer victims are a defensive crowd, putting us in the place of the Greeks over centuries of war with Persia. First thing to learn is that just showing up is important. After all, if 300 Spartans and a backing force of several hundred Phocians, Locrians, and Lesbians (the latter from the island city state of Lesbos, no reference to sexual orientation) hadn’t shown up, the combined Persian army and navy would have had free access to the Greek Peninsula and a straight shot at Athens.
Second lesson is: once you show up, fight like hell. Military operations have options for retreat and regrouping, cancer victims have no such viable alternatives. Best analogy here is with the Spartan expeditionary force. They knew fighting to the death was what was needed, and they did what had to be done. Cancer treatment is complicated, scary, and painful. Like having your own little Thermopylae Road in your physiology. You’re going to die anyway, you might as well die fighting.
There are other lessons we could glean from the history of the Greco-Persian wars, but this column is a cancer diary update, not a historical ramble. Well, not a ramble beyond those paragraphs above, anyway. Here’s this week’s report from CancerLand.
Monday they bolted me down under the radiation generators and attempted to align my malignancy with the radiobeams. Took almost an hour of frustration by the technicians and nurses. Finally we worked it out so that when I’m strapped in for real, it’s my responsibility to “relax your shoulders down, tilt your head back into the table, push the left side of your head hard against the mesh, and raise your chin to cram up against the mesh”. Oy. Being bolted down in a cage like Winston Smith waiting for the rats to be released is stressful enough without having to remember to squash my face into the mesh at the proper moment.
Radiation treatments started Tuesday, and then went to two-a-days (0830 hrs and 1500 hrs). Between treatments, the hospital is kind enough to let me use a corner of the waiting area as my office (photo below).
Anyway, on Thursday, the chemotherapy staff discovered that they couldn’t access the medical port that was inserted into my chest a couple years ago. So they sent me to another department—“Interventional Radiology”. Sounds like something out of 1984, maybe the sign on a single door in a long, dark hallway as they drag Winston Smith in for his “treatments”. IR tried mightily to access the port. After 30 or 40 minutes of hammering, they discovered via injection that the port is physically broken—stuff injected simply leaks out into my chest cavity rather than feeding into my circulatory system.
This means my chemo infusions will be done via freehand IV. The drugs they’re proposing are nasty, but you’ll have to wait until next week for a drug briefing (I sound like some marginally competent field agent for the DEA working a remote border road say between North Dakota and the middle of nowhere Canada). Because this week, the radiation already has already taken discernible hold on my physiology. The right hand side of my face is showing signs of radiation burns. And I’ve been barfing a couple times a day, despite eating low volumes of benign liquid medical “food” via my GIT tube. They gave me a scrip for enormous amounts of liquid Ondantsetron and a scopolamine skin patch to try to quell the vomiting. Once they start the chemotherapy (next Tuesday), part of the infusion brew is even more massively powerful anti-vomiting drugs. Hopefully despite the beating the rest of my body is taking, chronic vomiting won’t be part of the repertoire going forward.
Anyway. With the fussy positioning I have to do to keep my tumor in the radiobeams, I wonder what tissues are ACTUALLY being cooked. Oh yeah, one more thing. Despite my missing tongue, I can smell and taste the tumors as they deep-fat-fry. It’s a cooked-meat flavor, with a dash of really gruesome Limburger cheese and a whiff of rotten fruit. Yum. Hopefully I’m smelling “tumor” and not just some fleshy part of my mouth cavity!
New stuff around the weblog horn this week. Starting Sunday night, check out http://docviper.livejournal.com/ (which, in addition to pre-publishing the next chapter in the urban ecosystems book, has cool photos of fish in the hospital aquarium and some plants from the hospital grounds), http://theresaturtleinmysoup.blogspot.com/ , http://sustainablebiospheredotnet.blogspot.com/ , professional blog at http://www.aehsfoundation.org/ (go to lower left on the home page and click through to the blog) and DAC Crossley’s wild west blog at http://daccrossley.typepad.com/ .
Thanks for being here, everybody. Once again, it’s important for me to tell you that knowing you all are out there in the world rooting for me makes me much stronger and better at fighting the cancer and its painful and difficult treatment. Love to everyone, let anybody who inquires know how I’m doing and send ‘em to this blog. Talk to you next week!
Ever go into a tourist shop in D.C., maybe one of those in Adams Morgan where authentic foreign antiques and trinkets mix with fakes made everywhere from Hong Kong to Hackensack? What’s the first thing you see in front of the store? Of course, it’s Matryoshka dolls, traditional Russian nesting wooden carvings that start with a large mother doll, with smaller and smaller dolls inside. Actually according to Wikipedia the “tradition” goes back to 1890, when the first set was carved anticipating an international exhibition in the early 1900s.
Still, even a century old “tradition” can be an effective metaphor. As in, every time I go near a hospital, somebody peels away another layer of doll and finds a hidden medical problem. First there was the trip to Baltimore to close out the surgery by removing the last few dozen staples. At that point they found a blood clot in my lungs with potential to generate a heart attack, and put me on so much blood thinner that a few days later I started to bleed like a second-rate bull in a small-town Andalucian fighting ring. Out of the hospital from that, and they stuff me into a very tight, dark claustrophobia-inducing MRI tube to locate the best way to irradiate the known tumor on my palate. At the same time, they find something the radiologist thinks is “suspicious”. So then they send me back to the hospital where a guy with an ultrasound unit and a microscalpel slices up the raisin-looking “suspicious” item, vacuums its little pieces onto microscope slides, and sends it in for analysis. Which comes back “non-malignant”. Great news, no? A possible cancer that’s not cancerous! Yeah!!
Except, it turns out the raisiny spot isn’t totally clear. According to the radiation oncologist, the cells are “reproducing funny”. He says “funny” means definitely abnormal but also definitely not malignant. I assume he doesn’t mean funny haha. And what whatever he means, the hilarity is not going to interfere with the treatment plan the docs are cooking up as we speak.
We’ve already made the form they use to bolt me to the table so the radiation burns are confined to the desired tissues. Which, I remind you, doesn’t mean they don’t hurt. In fact, the radiation burns hurt like hell, in a stinging, constantly painful way. Anyway, the next thing to do is figure out rad dosage, number of applications per day, what chemotherapeutic drugs to use and how often, shit like that.
Radiation is now scheduled to begin 14 May at 1400 hrs. The doctors say they “hope” the plan will be “ready” by then. There are only three of them, I’m not sure how long it can take them to cook up a plan to…uh…cook up my tumor. But that’s where we are. There may be more layers of matryoshka dolls to peel away in the interim, but at the moment they’re thinking we’ll be ready to go by mid-May.
At that point, you’ll REALLY start getting the whiny weblogs. For the moment, there will be material around the weblog horn by Sunday evening. See important stuff at http://aehsfoundation.org/ (go to lower left on home page and click through to blog), http://docviper.livejournal.com/ , http://www.theresaturtleinmysoup.blogspot.com/ , and http://www.sustainablebiospheredotnet.blogspot.com/ . Also, see DAC Crossley’s wild west weblog at http://daccrossley.typepad.com/. DAC was my major professor at UGA, and is one of the liveliest and funniest people you’ll ever meet. He’s also gone one better than the rest of us—he’s written and published novels. Dammit. I gotta get my ass in gear… .
It Might Get Messy
There are two dichotomous approaches to engineering design: “fail safe” and “safe fail”. “Fail safe” devices are intended to never fail—to be “safe” from failure. The classic example, of course, was nuclear weapons systems during the Cold War. The odd doctrine of “Mutual Assured Destruction”, coupled with use codes that were essentially impossible to bypass proved, in retrospect, to be fail safe. Of course, the idea of fail safe is that the alternative—failure of the system—would be so gruesome that the entire complex of physical and social parameters that make up the system were devoted to non-failure.
At this point, all of you should be picturing Slim Pickens in Dr. Strangelove, riding earthward over central Russia on the single warhead that managed to penetrate the fail safe bulkheads. Note that the Washington Post this week, in an otherwise exemplary story on public health, stated that “social isolation increased the likelihood of death among the elderly by a stunning 26 percent”, implying, it seems to me, that social interaction renders humans “fail safe” from death. Hmmm, I said to myself. Clearly I need to figure out how to join that remaining 74% who apparently don’t die even if they DON’T have “social interaction”.
Reality, of course, must as always rear its ugly head. Humans are a “safe fail” system, designed via evolution to survive many engineering insults up to the approximate level of being hit by a Peterbilt semi on a high-speed roadway.
One problem with being an enormously complex safe fail system is in the number of non-lethal things that go wrong. What keeps the system safe fail is that these less-than-catastrophic contretemps are repaired before they reach the total failure threshold.
And why am I subjecting you to this rambling discourse on the philosophy of risk management? Because every time the doctors think they have a grip on my physiological problems (and therefore necessary treatment planning), something unexpected pops up. Last week I showed you a photo of the enormous hematoma draining from my thigh. While I was stuffed into the claustrophobia tube test getting my MRI to delineate the known tumor, a shriveled, ugly-looking lymph node showed up. Given that I’m not supposed to have lymph nodes in my neck any more, having one growing to visible size is intensely disturbing. Monday I head for the hospital to have this raisinous lymph node biopsied in case it needs to be factored into the treatment plan.
Meantime, the MRI yielded some interesting pix of my throat. I’m not precisely sure where the tumor-of-concern actually is, and I won’t have a chance to ask the doctors until later in the week. However, if you will examine the following MRI images and look along the curved inner edge of my oral cavity (the back side of the dark hole niftily labeled "A" for "anterior"), you can see what looks like a coating of light-colored, slightly swollen tissue running along that edge. I think that might be the tumor.
It’s diffuse, and weak, and at the moment looking less than vigorous. The idea of starting radiation and chemotherapy treatments immediately is to catch the malignancy while it remains in a weakened, incoherent condition. Hitting it hard while its down maximizes the opportunity for successful treatment.
Unless, of course, there’s another failure point hiding elsewhere in the system. Like a dried-raisin lymph node, rising from the dead to threaten to spread the cancer throughout my body. At that point, the image of the Peterbilt on the highway, or of Slim Pickens riding the bomb, take on a whole new level of reality. A level I don’t like.
Anyway, this week in addition to this cancer blog, there’s my professional piece at http://www.aehsfoundation.org/ (lower left on the home page to click through to the blog) which is reprinted for your convenience at http://www.sustainablebiospheredotnet.blogspot.com/ . The next draft chapter in the urban ecosystems book—8th street, I believe—is up at http://docviper.livejournal.com/ . Some brief music commentary—regarding the Be Good Tanyas—is at http://theresaturtleinmysoup.blogspot.com/ . Have a good week, everybody. I’ll be in and out of hospital, having various tests and getting ready to have my ass kicked by the radiation once again. And finding out if the radiation can be confined to the edge of my palate, or if it has to be expanded to include a treasonous lymph node elsewhere in my neck.
