Balls and Walnuts
more than you ever wanted to know
Sorrow in the trenches
Luis Vierra (not his real name) came to our clinic thinking he had sinusitis. Sixteen, handsome enough to draw crowds away from a boy band convention, and with a haawt & steady girlfriend back home, Luis had much better things to do than sit around all day in the County Hospital clinic.
He couldn’t breathe through his right nostril. As for the swelling alongside his nose, he figured that “just happened” with sinusitis — that and the pain, a dull, penetrating pain, like brain freeze from hell. The numbness of his cheek skin puzzled him.
It didn’t puzzle us.
Despite what we told our interviewers, very few of us went into medicine because of a selfless desire to help others, relieve pain, or vanquish disease. Some pre-meds wanted to be doctors because they feared death. Others did it because they were raised in medical families and knew nothing else. Back in the late 80s, a few idiots even did it for the money. If wealth is your number one goal, do not go into medicine.
I had several twisted reasons for going to medical school, but more on that some other day. It took me about ten years to figure out the real reason, which is my hatred and fear of illness. I don’t fear death — when I’m dead, I’m dead.
You know something? “Fear” is too weak a word. Illness terrifies me. If you don’t understand yet, read on.
Luis’s odd combination of cheek numbness and piercing pain was one of those paradoxes cancer so dearly loves. Nevertheless, whoever first examined Luis must have felt that twinge of denial we all feel in this situation. I’m going to touch his cheek and it will all be soft tissue swelling. I’ll look up his nose and see pus, maybe a bit of redness. But, no. The swollen area beside his nose felt like granite. His right nostril gave us a window on the tumor that would change him forever.
A biopsy and a CT scan later, we learned it was far worse than what we had first imagined. He had chondrosarcoma, an aggressive cancer. It filled his maxillary sinus and had eaten away much of his cheek bone. It had worked its way up into the orbit, too. We wouldn’t be able to save his eye.
Only four or five years later, we would begin hearing reports of successful treatment with a combination of chemotherapy and radiation. The only treatment option at the time, if I remember correctly, was surgery with post-op radiation. To have any chance of success, the surgeon had to completely remove the cancer with the first operation. You couldn’t go halfway on chondrosarcoma.
I imagine the choice seemed depressingly simple to Luis and his family: agree to the operation or die. His parents signed the consent.
A few years earlier, in medical school, I heard about a child who had an advanced pelvic cancer. He hadn’t responded to chemotherapy or radiation. Surgery was his only option. Unfortunately, the operation would be a hemicorpectomy.
Hemicorpectomy is every bit as vile as it sounds. I won’t distress you with the details; you can google it, if you wish, but be warned: it doesn’t get much worse than hemicorpectomy.
I remember the rage I felt hearing about this. Why would the surgeon suggest such a horror? On hearing an explanation of the procedure, how could the parents do anything but assault the surgeon, or at least scream at him to leave the room?
Back then, I didn’t understand that parents will do anything to save their children. Anything. Even if the odds of long term survival are 5% or worse, most parents say yes, because the alternative is unthinkable.
I don’t know what happened to that child.
Before his operation, Luis’s girlfriend and family stayed at his bedside. On those rare occasions when they weren’t around, Luis would hang out by the chart racks charming the young nursing students. He was a shameless flirt.
I didn’t see his operation, but I know it took all day. His youth and strength served him well, and he got through it without complications.
My job as intern was to change his dressing once a day.
One thing about cutting back to healthy tissue: the surgeon cuts back to healthy nerves, too. Luis required hefty doses of morphine to tolerate these daily sessions. I could have used some Valium, but interns don’t bitch or whine. You bite your lip and do your job and keep your thoughts to yourself.
The main thought, the one I had each time I changed Luis’s dressing: He looks like a Netter drawing. His operation went beyond a total maxillectomy, including sacrifice of the eye, the lateral half of his nose, his upper lip, all of his cheek skin. I could see into his nasopharynx. I could see the base of his skull.
Back then, our head and neck surgeons did delayed reconstructions. The idea was to allow the wound to heal slightly (granulate, for you folks in the biz) so that the graft would stand a better chance of taking. The graft would be a free flap: a portion of flesh taken from elsewhere and fitted in place, artery hooked to artery, vein to vein. Luis’s void would be filled with featureless flesh.
He survived that operation, too, but by then I had moved on to a different service.
I heard bits and pieces of what happened afterwards.
His girlfriend broke up with him.
His cancer recurred. He was told he would have to have the flap removed so that the cancer could be removed. Given that bit of bad news, he locked himself into a bathroom with a rifle. Someone managed to talk him out of killing himself.
I don’t know what happened to the child with pelvic cancer, and I never heard the end of Luis’s story, either. By the time I was back on service as a second year resident, Luis was gone. No one talked about him. I didn’t ask about him, either. I knew better.
I did my job, bit my lip, and kept my thoughts to myself.
Parents aren’t alone in making these desperate decisions. It tires me to think of all the adults I’ve known who have chosen the harrowing, maiming operation in exchange for a glimmer of hope. Now, at last, I have a patient who told her surgeon no. I’m doing what I can under such circumstances: I see her regularly, I make sure her needs are met, and I’m giving her a good understanding of what to expect at the end. I’m not abandoning her, and that’s the main thing.
But it’s one thing to decide such a thing for yourself, quite another to decide it for your child. What would I do? I hope I’m never in that situation. I hope none of you are, either.
My best wishes to you all.
D.
My mom just finished a six week treatment of chemo and radiation for lung cancer. She has (had? we don’t know yet) a tumor in the right lung that had spread to the lymphnodes. Her radiologist was a total wanker who scared the crap out of her describing the side effects, and almost assured her that lung cancer would probably recur somewhere else anyway. He took away every bit of hope she had, and she was enormously depressed after that doctor’s visit. Suicidal thoughts? After essentially being told you’re going to go through medieval torture and it probably won’t work anyway, you bet she had some bad ideas. She had her mind set on surgery, but after an exploratory they said they couldn’t do it. Now she was facing Dr. Wanker and his iron maiden.
The radiation wasn’t as bad as feared, but the chemo was hell. Even though the aggressive treatment is over, and everything looks really good, (her lungs sound clear and her red cell count is high)she has two chemo followup visits that she really, really doesn’t want. I don’t blame her. She had one this week, and is trying to decide if she wants the other. She describes it like this: “You’re laying on this chair, chest totally exposed, arms above your head, while someone pumps deadly chemicals into you. And you just lie there and let them do it; you just lie there and let them try to kill you.”
Believe what you want about religion- cancer is demonic.
Sorry about the long post.
No need to apologize, Robyn.
Cancer is the worst when it comes to the cure being every bit as evil as the disease. I came very close to throwing my whole life into cancer research. I didn’t because I put my family first — the cancer research position would have been low-paying, with shaky job security. Nevertheless, it’s one of those decisions I often think about.
We lost my father-in-law to pancreatic cancer last year. That was a similar situation — the odds were incredibly poor, and yet he and my mother-in-law went ahead with chemo and radiation to catch that sliver of hope. There’s no way of knowing if his life was better for it. Did he live longer? Was it worth it to live longer, enduring that treatment?
I don’t have any answers. My best to your mother.
I need to stop reading your blog in the morning. Because I am curious-to-the-point-of-profound-stupidity, I actually Googled all the medical words you used that I didn’t know, including “hemicorpectomy.”
*shudders*
Do you ever get inured to all the horrors you see/have seen as part of your profession or do you just have icy shakes and screaming nightmares your whole career?
I did warn you about hemicorpectomy. Unfortunately, the horror of it — that’s the point.
I suppose I’m used to the minor horrors, the things other folks might grimace and groan over, like a baby cockroach in the ear (still moving), or a neck abscess that stinks like a rotten tooth. The big horrors, those are another thing altogether.
The irony here (and this goes for those death-fearing docs, too) is that medicine has only served to stoke my fears of illness. I’m aware enough to see that any “control” I have, by being a physician/surgeon, is illusory.
Still. Nothing compares to the satisfaction of having some old lady walk into your office deaf as a post and walk out with decent hearing — lighter by two fat wads of earwax. That’s when you know it’s all been worthwhile. The simple pleasures ;o)
I didn’t need to google it, I have a Pschyrembel, the German Medical Dictionary, and a new one, too. 🙂
I’ve always been interested in medicine, and it helped in the talks my father and I had with the anaesthesiologists and neurosurgeons during my mother’s illness. Of course, they try to explain things in a way a people can understand, but sometimes it worked better when they explained to me and I sorta translated to my father. And I came up with the questions, including the tricky ones. Like when I asked the very first time after the accident, “is it life threatening?”. The doc swallowed but then said, “well, if you ask that plainly, the reply is, yes.” May father told me he was glad I had to courage to ask.
Thus, we were prepared when they told us my her brainstem was afflicted, her fever due to malfuntion of the regulation center, her breathing to irregular to ever work without a respirator, and her blood pressure a mess that reuqired very strong medication, and no chance left to recover. We agreed to stop most of the medication and machines. She would not have wanted to carry on like that, and nor did we.
She died some 24 hours afterwards.
Thank you for sharing these painful memories with us. It’s eye opening to learn what motivates people to go into medicine.
When it comes to cancer, is there a general percentage that’s known of the population that gets cancer (I mean, all kinds combined?) And do those percentages vary from country to country, or are they relatively equal worldwide?
I found it interesting that when I was in my early 20s I had a scare, but surgery proved the growth to be benign. But just before and after the surgery, I was quite amazed at the number of people that had stories of themselves, family and friends who had been touched by cancer. When I “joined the club”, the stories just kept coming and coming and coming. Now I’m in my 30s and already I’ve had friends my age going through the whole experience of surgery, chemo, radiation, etc.
I’ve had a few near misses with illnesses in general (which I think of as kind of ironic because I like to think of myself as pretty darned healthy) where I know if not for modern medicine I wouldn’t still be here.
All these personal and near-personal experiences have added up to make me wonder where the line is for each person that delineates “I’ll do anything” and “I’ve done enough”. I’m also glad to live in Oregon where we have some legal control over choosing the end (well, for the moment, anyway) while meanwhile I hope like hell I’ll never have to exercise that right.
Gabriele: it’s surprising how few people (on the patient’s side) ask the tough questions, and it’s sad how few docs are willing to bring these things to the fore. I hope you’re holding up well.
anduin: you’re welcome ;o)
fiveandfour: this article, which I wrote several years ago, explains that “cancer” is a multiplicity of diseases. I don’t know if there is a meaningful answer to your questions regarding prevalence. Prevalence of individual cancers varies greatly from region to region, ethnicity to ethnicity. A good example is nasopharyngeal cancer, which is exceptionally common among mainland Chinese, yet uncommon elsewhere in the world.
Where are you in Oregon, by the way? I live in Brookings (or will, as soon as we move back at the end of this month!)
Thanks for the article link. For some reason, your description of cancer brought to mind something I read in Bill Bryson’s A Short History of Nearly Everything that was along the lines of “if you think about it, as complex as we are, it’s quite amazing cells don’t go haywire more often” [he obviously put it better than that, though]. Thinking of it in that light acts as a comfort and yet not all at the same time. (But then, I was literally saying aloud “oh man, this planet is doomed” when reading that book anyway.)
I’m in the Portland area more or less – work in downtown and live in the ‘burbs.
You lucky, lucky dog. Why? One word: Powell’s.