“ In my heart, I will always be the girl without the metal, and you will always be the boy with all his bits.” – Quote from an old friend of mine, on our respective surgical experiences
It’s a very surreal thing to know how you’re going to die. Most people my age don’t know what’s going to do them in, ultimately. That type of thing can play havoc with your psyche. I should know, since I have a rare, and in my case incurable, type of cancer.
But let’s pause for a second so I can explain why I’m writing this before we get too deep into it. I’m writing this because I have a lot of friends who I don’t always see often, don’t always know what’s going on with me, and often wonder how I’m doing. I’m also writing because I just lost a good friend to cancer, and I owe him a voice. I’m not doing this for accolades, platitudes, or recommendations that I read a bunch of goat-ball-licking nonsense about positive thinking. I’m doing this for a lot of reasons, but mostly because I need to.
And now we’ll go back to the other thing. The cancer.
Almost exactly two years ago, on May 5th of 2012, I woke up in immense pain in the area where my appendix used to be. I don’t have it anymore, but I did then, and it hurt like a sonofabitch. Doctors always say that pain is pain, but if it wakes you up out of a cold hard sleep that’s a really bad thing.
Being the guy that I am, I decided to “take it easy” and work from home that day, thinking all I really needed was to relax. After a full morning of pain coming in waves, however, in something I can only describe as being as close to labor pains as I ever want to come, my wife drove me to the doctor. That doctor was pretty sure I had appendicitis and told me to go over to the hospital immediately. Asshat that I am, I was making appendix jokes on Twitter all the way there.
Things improved immensely at the hospital, but that was mostly due to the copious amounts of liquid-I-don’t‑give-a-fuck they were pumping into me. I don’t think my wife was as relaxed, though we both still thought it was my appendix at that point. Looking back, it’s kind of funny what kinds of things seem like a big deal when you really have no idea what’s actually going on.
The first inclination we had that something was going on besides my appendix being a stubborn little crab-ass (he got his eventually) was when the doctor came in and, doing his very best imitation of a very worried doctor trying not to look worried, told us that he wasn’t sure what he was looking at, but if it was what he thought it was he wanted me immediately admitted to the University of Washington Medical Center.
UWMC is a very prestigious medical school and hospital here in the Seattle area, and also runs the only level one trauma center for a multi-state region in the Northwest; Harborview Medical Center. It is the best known hospital in Seattle outside of Seattle Grace, which is really just a local news station’s building and a Hollywood studio set. But I digress.
As it turned out, UWMC was full that night so the doctor had me transferred by ambulance to Harborview. Now I don’t know about you, but when you go to the hospital thinking you’ve got some routine thing, so routine you’re making jokes about it, and a couple hours later you’re on a fucking ambulance to one of the most serious hospitals in the country, the night has seriously gone off the skids.
The ambulance ride was fairly uneventful, as was the check-in to the emergency room (pro tip: if you ever want to get seen quickly at the local E.R., come in an ambulance on a gurney). Except for the random screaming in the curtained-off area to the left, the strapped down and guarded prisoner directly ahead, the guy having epileptic seizures also across from me, and the homeless dude urinating on himself in the next bed over, it was almost peaceful. Again, strong doses of mainlined Dilaudid and Morphine have that effect. Not quite enough to cover what came next, however.
I had, by this point had multiple imaging runs, exams by varying types of doctors, and answered the same questions multiple times. I think every sample of every fluid in me had been taken and sent off to secret government run death-squad ninja sheep-cloning labs, and the verdict on at least the immediate problem was proclaimed by a very somber looking Aussie Doctor. “You’re going to die” she said, then walked off.
Okay, I made that last part up. She actually said, “We think you have cancer” and then went on to explain that they thought I had a very rare type of cancer called neuroendocrine tumor cancer, or NET. She said the type I have is often referred to as Carcinoid, and tends to be somewhat indolent—usually. Of course I didn’t hear shit after the cancer bit. All I heard was that I was going to die, and then there was a buzzing in my ears, my eyes watered up, and I felt my wife squeezing my hand.
Fast forward through a bunch of imaging studies, consultations with different doctors, and invasive tests (colonoscopy anyone?) and I had the humdinger of all humdinger surgeries, at least in my life: a right hemi-colectomy. And no, that’s nothing to do with shitting in a bag, so let’s not go there for all of our sakes. It’s a surgery, which—in my case—involved surgeons taking out part of my small intestine, illeocecal valve, appendix (bastard), and about a third of my large intestine. Then they duct tape it all back together, leaving you and your insurance a couple hundred thousand poorer.
In my case they also had to remove a rather large (4cm) cancerous tumor, and a whole bunch (36) of lymph nodes. Here’s the humdingiest part: they cut a large vertical incision a few inches above and below my belly-button, pulled out all of the intestines, plopping them on my chest, then manually went through all of it just to make sure they found all of any kind of tumors hiding there. I wasn’t awake for it—good for all of you, since I would have live-blogged the whole thing—but I’m told I was out for 10 hours or so.
Since then I’ve had one percutaneous radio-frequency ablation (RFA) to remove a metastatic tumor in my liver, and am about to go in for another one because they found another tumor. My cancer is stage IV, which means it’s spread out to remote areas—the liver for sure, at this point—and so these tumors are likely to keep cropping up with some frequency. “Distant metastasis” is the doctor-approved term for that particular behavior, the route-66-like wandering and then popping up suddenly for a cheeseburger somewhere unexpected. At least RFA is kind of cool, though, because they use radio-frequency waves to burn the holy living bajesus out of any tumor they find in my liver. The bad part is it kind of hurts.
The problem with having cancer is that people tend to have an idea what it looks like on a person. I’m supposed to look weak and maybe lose my hair. Or I’m supposed to die, and then someone can have a charity walk-a-thon in my name. If I’m really famous I might get a really, really bad televised concert. In any case, NET cancer doesn’t always fit that preconceived notion, often because the thing that makes it so insidious—moving slowly—is the very thing that makes it almost incurable, and keeps you alive longer. So you don’t look too bad, all things considered, even as your tumor burden and surgery familiarity grows. Three surgeries in two years, and I’m just getting started.
NET cancer is largely untreatable by anything other than surgery—the gold standard for any cancer. Most cancer treatments involve having chemo to shrink tumors enough that you can have surgery to get rid of what you can get to. Rinse and repeat. NET cancer that is indolent doesn’t respond well to chemo, however, so instead you’re left in a surgery-wait-surgery approach vis-à-vis treatment. You surgically remove a tumor, then you wait, then you surgically remove the next one. Eventually there are two tumors, then five, then twenty. Eventually, surgery won’t work.
Am I luckier than my friend Clay, who died a couple of weeks ago at the age of 37 from an aggressive colon cancer? Certainly I am. I’m alive and he’s not. He fought cancer and lost, all at a hyper-fast pace and writ large across his social media channels and the faces of his friends who watched it all happen. I can’t imagine what kind of anxiety he had at the very end, but I drive myself crazy imagining nonetheless.
Neuroendocrine cells are found in many organs in your body. At a layman’s level, what they do is take input from your nervous system, and based on that they put out different hormones, like, say, Serotonin. As a computer guy, I can appreciate a nice, simple, input/output system. And as long as these cells are normal and healthy, that is exactly what you have: a clean, simple, well-functioning system. C’mon, no whammies!
On a related note, I’m told by many reputable sources that we all have cancer cells in our bodies. All a cancer cell is to begin with is a cell that goes all wonky, gets hit in the noggin a bit too hard one day and is suddenly like that weird cousin we all have…the one we only see at holidays and who makes everyone uncomfortable, the one we keep the large knives hidden from. Normally our immune systems can deal with these little malcontents by dispatching little assassins to take them away and beat them to death. Sometimes, however, there are too many of them, or they find a place to hide, and eventually our body simply can’t deal with them. Then we have a problem. Then, we have cancer. The type of cell that mutates or goes bad determines the type of cancer we get. Liver cell? Liver cancer. Prostate cell? Prostate cancer. The cancer cells also inherit the behaviors of the cells they used to be. Cells that grow quickly become cancer cells that grow quickly. That’s one reason why some cancers are more dangerous than others. The adaptive behaviors of the cells they used to be works against us in trying to treat what they have become.
In my case, the neuroendocrine cancer cells can still take inputs from the nervous system, and still output harmones, but they do it on their own schedule, on their own time, in their own quantities, and according to their own volition. So, nervous system says you need one pint of beer? Too bad, you get five shots of high-test moonshine instead, or maybe a steak, or here, just forget the last five minutes of whatever you were doing. Starting to see the picture now?
People ask me all the time why I don’t write more often, or consistently. Sometimes it’s because I have nothing to say, but usually it just comes down to the way my brain is functioning at any given time. My doctors have me on a variety of different medicines. Some for depression, some for anxiety, some for other things, and some to counteract the effects of the other drugs they gave me, all in an attempt to keep the hormones in check. All of that makes it often difficult to write with any sort of style, grace, or indeed point.
It also makes it difficult to keep it all pulled together at all points of the day. Sanity, I’m finding out, can be a bit of a high-wire act. Mornings are good because I’m focused, excited, and can do my job pretty damned well. Afternoons it takes a bit more effort, but I’m still all good. I may not laugh at your inane jokes as readily, but I can still usually manage at least an effete, if not totally sincere chuckle. Evenings are a crapshoot. Evenings are harder, I think, because I’m more tired and possibly more removed from a variety of drug effects. I’m also told that hormone releases from my cancer can be highly varied, and possibly evenings are just their time to party.
I like writing in the evenings. It’s late as I type this. At night my brain wanders like an under-utilized whore on a busy Friday evening. I don’t have to worry much about forgetting what I’m talking about because it’s all right there in the historical record. Unfettered creativity meets a personal narrative and capture device. Just don’t expect as much out of a conversation.
Talking to people late at night is tricky. On a bad night I’ll forget what I’m saying after two sentences. On a good night it might be more. I’ll wander, jump subjects, and generally segue like nobody you’ve ever met. The best part though is that I often won’t remember our conversation at all. Alcohol glues it back together a bit, but doesn’t do much for the memory—probably not great for the cancer either, though my oncologist doesn’t seem to mind.
Sometimes the cancer I’ve got can progress more rapidly, though mine is not. Sometimes it gets more aggressive, or starts more aggressive. Steve Jobs did not have pancreatic cancer as is so often reported in the media. He actually had something called a pNET, or pancreatic neuroendocrine tumor cancer. That type is more aggressive than mine is today. Dave Thomas of Wendy’s fame had NET cancer, and so did Audrey Hepburn. Our cancer is so rare, however, that those are really the only three famous people I know who’ve had it. We don’t have a walk or celebrity spokesperson. We have surgeries, and annoying symptoms, and more surgeries. And we slowly get worse.
I said at the outset that I know what I’m going to die of. That’s not entirely accurate as I could die of anything at all between now and whenever the cancer gets me, thereby robbing the cancer of its victory—I often fantasize about being killed by a coconut falling from the clutches of an African Swallow, for instance. But barring that, I know that all of these tumors are pushing chemicals into my body that cause damage… chemicals that if left untreated will cause massive heart and liver damage. So we remove them when we find them, and treat them with drugs for all the in-between times. It’s not a perfect system by any means, but I’m still alive after two years, so I’ll take it. And since this disease leaves me with what doctors say could be an “almost normal” lifespan, I’ll probably have a chance to test my luck in myriad different ways.
Monte Carlo Baby!