I'm writing this on June 1, 2006. By the time I realized I should be blogging, a lot of good stuff had already happened. So everything before June 1 is recounted with a bit of hindsight; from here on, it will be more ignorant, more truly bloggish.
Greg is my nurse. Greg isn't gay, and he doesn't care enough about me to be charmed or not charmed by my winning good humor. He's a corn-fed redhead, who idly jabs and re-jabs the needle in my hand, looking for a vein. I'm in an emergency room in suburban Chicago, having flown in from SFO a few hours earlier. I'm in town because my stomach has been hurting for a couple of months, and I want my mom to take care of me, and my friend the GI doc (Dr. L) can do an endoscopy much sooner than the fancy folks at Stanford Hospital. But by the time I arrive, I'm a slow puddle, and a family friend and physician (Dr. G) tells me to go to the emergency room, so she can order up some tests and rule out any bad stuff.
The evening's main event is the CT scan. A CT scan is a slow sled ride through a doughnut, which sounds pretty fantastic, except for the "IV dye," which the hilariously butch CT tech with the short sleeves and deep voice tells me might make me feel "flushed." She also tells me that it might make my heart do strange things. Given that I have an occasional arrythmia, this makes me nervous, and I tell her so. She leans over my hospital-gowned, prostrate, tied-down body and says, with gnomic meaningfulness, "We're just going to get through this test." I decide that this is comforting.
She leaves the room to get away from the radiation, and to man the sled controls. She slides me in, has me hold my breath, and slides me out. A few of these, and I'm doing pretty well. Then she says the dye is going in. I thought it had already gone in, and that I was manfully impervious to its effects.
It doesn't make me feel "flushed." It makes me feel, as an experienced friend put it, like my body is turning into molten copper. And my heart starts to flip-flop. I freak out, in a somewhat less than manly way. "Ma'am, ma'am, I need to get out." I try to sit up so I can fidget my insides enough to make my heart calm down. Sitting up in the tube is dispreferred. She's mad at me. She tells me to calm down, and not to move. It turns out that the rest of "get through this test" wasn't "together, babe" but "no matter what, bitch."
I'm wheeled back to my room. I have a new nurse, an even bigger, but very friendly non-gay guy. When I ask for stuff he can't give me, he says things like, "No, there's no love for you, man." He also says, "I hear you got a little anxious." "No, I totally freaked out."
A couple of hours later, all the results are in. Blood tests are normal, CT scan is normal. It's 3:15am, and I go home.
My endoscopy went well. The endoscopy went well. I showed up at Dr. L's office and played petulant child and wouldn't let anyone stick a needle in me until my friend showed up. I realize now that I just misunderstood "start your IV," and thought they were going to shoot me full of drugs, but really they just wanted the needles in place. Whatever! I want my friend-doctor!
Now that, by most measures, I'm fully an adult, there's a new "Had he and I but met" quality to visits to the doctor. A few of these people--nurses, secretaries, even some of the residents--are younger than I am, and they seem like real people to me, and I to them. This is nice in some ways: we can chat, they can be charmed, I have some idea how to communicate with them. But in other ways, it only makes the fact that I'm far from my best self when my stomach hurts and I have needles sticking out of me all the more acute.
In any case, this was the camera-tube-down-the-throat test and my stomach is nicely pink and ulcer free--they showed me the pictures. Maybe there's a bit of inflammation--mild gastritis--which would explain my symptoms. Taking an antacid for a couple of months should fix me right up, and in fact, since they pumped me full of antacid at the hospital, I was feeling pretty damn good.
Today I'm a big fan of big pharma. I've been doubled over in pain for a couple of months, and just a pill or two a day promises to make me all better and let me get back to normal life. This is why it's important not to give destitute Africans affordable medication. Woot!
Dr. G calls to follow up the ER visit. Stomach looks normal. Hooray! The pancreas, which is what she was worried about, also looks fine. Hooray! But the CT scan shows a "shadow" on my left kidney. Umm.... We should do an MRI to make sure that it's nothing to worry about. Ok.... Renal cysts are very common, so I shouldn't worry. Alright.... And if it is something, they'll just take out the kidney and lots of people lead normal lives with just one kidney. Uh....
This is the first of what will be several "And by the way, POW!" moments where normal life, or what's come to pass for normal life, gets spun around dizzy. It's also the beginning of "my poor mother." She'd been married for about five years when her husband, my father, got cancer and died. Then seven years ago, she probably saved her own life by finding a lump that turned out to be cancer. She's a worrywart by nature, and hearing that her son has a suspicious growth in his kidney isn't news she takes particularly well.
Dr. G made some calls and pulled some strings to get me a next-day 8pm MRI appointment. The CT scan was a good ride spoiled, but the MRI machine is an instrument of torture masquerading as medical equipment. You're unlikely to encounter anything else in normal life as claustrophobia-inducing as being strapped down and slid into a tube that's a few inches away from your face. And when the machine is taking an image, there's an "Is this really necessary?" loud banging sound. You, of course, are wearing headphones so that you can be told by the techs when to hold your breath, and that you're "doing great."
Actually, the MRI didn't bother me at all. I'm not claustrophobic, I'm used to holding my breath from swimming, and I was so damn tired that I was happy to lay down for a while.
Then I went home and went into suspended animation. Even when everyone tells you that it's quite unlikely that you have anything in your body worth worrying about--like...CANCER!...a word that no one would use, even though we were all thinking it--waiting for results is like carrying around a big planet. Jupiter, maybe. You feel real, physical pressure pushing you into the ground, and your thoughts can get away for brief little flights of fancy before--slurp slurp gravity--they're sucked back down into portentous waiting. I must have played a few hundred games of Tetris that weekend. Reading was too hard, television wasn't sufficiently distracting. I just wanted to leave my mind alone, and let it get on with the tricky of business of hoping and preparing.
Cancer?!
I so should have known. Dr. G was playing me, and I didn't even realize until later. I had the MRI on Friday, and on Monday they still didn't have the results. I called, I called again. They hadn't even looked at the results. Same on Tuesday. We were decrying the callousness of the medical establishment. Don't they know I'm waiting to find out if I need to have my kidney removed? Can't they bother to look?
Dr. G called me on Tuesday and said that the best thing to do was to go to the hospital together and raise a little hell. I wondered why she didn't just go over there herself, raise hell, and report back. But I met her bright and early on Wednesday morning, and we marched into the radiologist's office, where the radiologist seemed to be, well, expecting us. A wisp of a flicker of suspicion blew through my mind, but the radiologist had such a fancy monitor, and those were my insides on the screen, so I looked.
And by the way, POW!
Of course, Dr. G had known, and hadn't wanted to tell me over the phone; wanted me to see and understand for myself. She also knows my mother, and knew that we'd need a plan for telling her. Most people don't understand, until they see it for themselves, what Old World freaking out is like. I'll spare my mom, and withhold the details, but it involves making a not-very-Midwestern spectacle of oneself. I told her, and relatives were called in for reinforcements, and by early evening, we'd all come around to the view of the linked post: manageable, could have been worse, pretty damn lucky, in its way.
A few weeks before I came to Chicago, I was at my doctor's office in California, getting my annual physical and a referral for my stomach trouble. By way of asking him to examine me double-good, I said, "I'm about the same age my dad was when he died of cancer, so I'm kind of paranoid about getting cancer this year." Father's kind of cancer? Lung. Smoker? Yes. It didn't exactly light the examining fire under my doctor, but then again, how is he supposed to respond?
But I have always expected to get cancer this year. A friend said that I seemed relieved when they told me about the kidney cancer, because I'd finally gotten it, and it was so manageable. At least when our deepest fears are realized, we can get on with dealing with them. So, just a few hours after the initial "do you mind if I sit down?" of the diagnosis, I felt good. Not only had I been proved fucking right, but I'd gotten off easy.
Aren't there any cancer rules? Here's one I would have thought would be near the top: you can't tell a guy he has cancer twice in one day.
We'd calmed down my mother, noted my luck in the tumor being found, and were on to making a plan to find the best kidney surgeon in Chicago. The phone rang, and it was my friend, Dr. L, who said he was outside my mom's place, but didn't want to come in. I figured he was in a hurry, and met him outside.
"You have got to have another endoscopy."
"I'm tired, Dr. L. Is it really so urgent?"
"The pathologist thinks he sees some suspicious cells in the tissue samples we took."
"Suspicious? Cancer suspicious?"
And by the way, POW!
I think I actually fell back against the wall. I knew enough about stomach cancer to be scared. It wasn't any fun for Dr. L either, since we've known each other for almost twenty years. He told me we'd found it about as early as medically possible, and that the prognosis was much better than a typical case of gastric cancer. That helped. Then it was back inside, where I wasn't going to speak a word of it to anyone; not until we had confirmation.
I had another endoscopy the next day, and began what would be a week of waiting--for the results, and then for a double-check from the University of Chicago.
Being diagnosed with two cancers, one of which takes you to some unhappy places on the internet, can't help but bring you around to thinking about death. You imagine your funeral, wonder who'll care, who might be devastated, where you want to be buried, how they'll get into your apartment, whether you left it a mess, whether there's anything embarrassing on your computer, who you might want to get in touch with, how much you'll waste away before you die, whether it's time to move to Oregon and off yourself early, how quickly you can train a replacement at work, and about your poor, poor mother.
And I found, not to my complete surprise, that though I'm afraid of plenty of things--going blind, losing mental clarity--I'm not particularly afraid to die. The thing about expecting to get cancer is that you have to more or less make your peace with death. No one lives forever, the light goes out, and then you're dead, and don't care anymore. That's what I thought, anyway.
Cancer turned me into a massive liar. There was the developing public narrative of great good luck and the commonness of kidney removal, and there was my secret knowledge that the kidney was the least of my problems.
Americans are reluctant to call or write, because they don't want to be a bother. Iranians call constantly, because they don't want you to feel alone. As one friend said, they're both right. But in this case, when people called it was all, "Yes yes, of course you're right, this kidney business will be just fine. Yes, I'm feeling great. Quite lucky. Oh, your aunt has just one kidney? Terrific!"
And I could see my mother slowly reconciling herself to the kidney problem, sleeping a bit more, eating a bit more, and I kept thinking about having to break news to her all over again.
You know those insufferable people who point out all the impossible science in Star Trek movies? I'm going to spend the rest of my life loudly scoffing when any godless character suddenly turns to prayer. Prayer is a skill, and I doubt anyone's a natural.
With two likely cancers, the doctors thought I should get a PET scan, which is an all-body check for cancer, to see if we were dealing with two independent early stage cancers, or a much more ominous spread. Dr. G said she'd try to schedule me for Monday, the 15th, and by the time I was in bed on Sunday night, even what's turned out to be my relentlessly optimistic and resilient self was a little bit worried. Time, surely, to get my prayer on.
That turned out to be a lot like going to the kitchen and deciding to make palladium. I was pretty sure that I couldn't just start asking for stuff. I was pretty sure I didn't even believe in god. I looked up prayer in the dictionary. I looked up prayer in the Catholic Encyclopedia. Interesting, but I didn't feel down with submitting myself to the will of a being I probably didn't believe in.
Finally, I decided that I would just try to say things that were true. The main problem with even this strategy is that it's just about impossible not to be disingenuous when you think you might be talking to god. It's all about making a good impression, and it takes a while--I think it took me a good 30 or 45 minutes of trying to slyly bullshit god--to turn off the part of your brain that's always calculating, the part that makes you act humble to get more dessert, or less cancer, or whatever.
But finally it happened, and I was saying true stuff--and you get into a space where it becomes impossible not to know, immediately and surely, when you're not being true--and it turned out to be like the most intense therapy session ever--except that I was alone in bed, whispering in the dark--alternately laughing out loud, crying, hating myself or feeling pretty good.
Then I said "I want to live." Wait. What was that? That was the infallible prayer bullshit detector. "I want to live." It went off again. "Do I want to live?" Answer hazy, ask again later. I tried it from different angles, in different ways. But I couldn't honestly say whether I wanted to live. Maybe "always expecting to get cancer" isn't so different from "would just as soon be dead." I kept trying to puzzle it out, but eventually I was just exhausted, barely keeping myself awake and I gave up. Or I submitted myself to the will of a being I probably didn't believe in. "I don't know. You tell me, God. You tell me."
As it happened, Dr. G wasn't able to schedule the PET scan for Monday after all. So I woke up after all my praying only to hear that I'd have to wait a couple more days. But I felt oddly great, like I had a strange new power.
Meanwhile, it was time to see kidney guys. I knew that the tumor in my kidney had to come out, but there was still some question about whether I'd have to do a "radical nephrectomy," where the entire kidney comes out, or a "partial," where just the chunk containing the tumor is excised. And of course I wanted the best possible surgeon to be doing the cutting, no matter what.
On the day I was diagnosed, a small army had gathered at our place, and a few of them set about finding the names of prominent urologists in Chicago and making appointments for me. The first one turned out not to be a surgeon himself--an orthodox Jew who met me at his office early on a Sunday morning in a grease-stained doctor's smock. I probably could have skipped that one, but he knew the surgeons in the area, and confirmed that one on my list was very good, but that another had left the tumor in a couple of times. Good to know.
Then I met with a surgeon who almost everyone had mentioned as Chicago's king of kidney removal: "fantastic surgeon" "beautiful hands." An Iranian, as it happened, and friends with friends of the family. My sainted cousin, who's accompanied me to almost every single appointment, and I made the trip downtown to see him.
He charmed us, he impressed us, he was arrogant and casual, he does this shit all the time, it's no biggie, and best of all, even though even then I knew that he was more or less talking out his ass, when we told him about the cancer cells in my stomach, he just waved his hand and said, "Bah, I see a lot of overreading of stomach biopsies."
That, it turned out, was God telling me. Even that thin bit of hope was enough to make me smile the rest of the day. Holy shit, did I ever want to live.
You end up doing, saying, and thinking a lot of unexpected things when you're diagnosed with cancer, but I really never expected to say this: I enjoyed the hell out of my PET scan. It's another slide-through-the-tube test, but where the MRI belongs at Gitmo, you could easily sell the painted ladies of Ritzy Address on monthly PET scans. I was greeted in the waiting room by a short guy named Joe, and surely his last name was Addams. He had a wandering eye, and a bizarrely soothing way of speaking. "Hellooo Mr. ----. Follooww meeee." I think he really said that too, except for calling me "----."
I changed into a gown, and we walked past an Exam Room, and a Break Room, until we came to the Quiet Room. The lights were low, there were a couple of instrument trays in the corner, a little office chair, and a big easy chair. Joe put me in the easy chair and explained the test: they would inject me with radioactive glucose, and because cancer cells metabolize things much faster than regular cells, we would find out, by tracking the glowing glucose, where they were. And because we were measuring metabolism, apparently it was important that I be caaalmmmm. In fact, after I was injected with the glucose, I would be forbidden to speak, because we didn't want to activate my brain.
Then Joe got out the "syringe." Except that this "syringe" was slightly larger than a Pringles can, and he had to lift it with two hands. Encased in lead, you see. "This is really more for my protection that yours, since I have to deal with this stuff day in and day out." I laughed. There's no sense protecting me from it, since it's about to be INJECTED INTO MY BODY.
The injection was quick and painless, and then Joe leaned my chair back, put my feet up, got me a pillow and a warm blanket, turned out the lights and literally tip-toed around the room, verrry genttllly picking things up and putting them down, and verrry slooowlyyy wheeling the trays away. The door quietly clicked shut, and I had 45 minutes to doze.
Joe came back to get me and took me to an Exam Room, and I'm sure I was high on the radiation or glucose, or maybe just in a newer wing of the hospital, but the exam room was so big and airy and there was a cool breeze blowing, so I didn't mind that when I was on the sled they velcroed my arms tight to my sides and slid me into the tube. I was unnvervingly happy, just...smiling.
Dr. G called me later in the day. "I wanted to give you some good news, since you haven't had much of that recently. Preliminary results of your PET scan are that everything is clear; nothing is lighting up."
Such good news! The PET scan could have shown cancer creeping anywhere in my body, and until those results came back, "I'm a goner" was an unlikely, but real, possibility. But even my stomach wasn't lighting up, which meant that even if there was cancer there, it was in its very early stages, and probably amenable to cure by surgery. Woot!
Lots of people had been waiting for these results, and I spent the rest of the day making happy calls.
Only a tiny bit of doubt leaves room for a lot of hope, so although two endoscopies had already come back positive for cancer cells in my stomach, I wasn't going to act like that was real until the University of Chicago confirmed or disputed the pathologist's reading. Today they confirmed it.
I had to do two things: figure out what the hell that meant, and plan to tell my mother. I called two cousins, told them the news, and told them that I'd need them that evening. One of them wrangled a same-day appointment from a well-regarded Iranian GI specialist, and I picked up the ex at the airport, and she and I and my cousin and his wife all met at the doctor's office that afternoon.
"I'd like to examine you," he said, looking around the room meaningfully. All four of us had squeezed into his office, Third World style. "It's ok, they're all family," I said breezily. "I'd like to do a rectal exam." "Everybody out! Family stops at the rectum!"
I was actually surprised by how unpleasant the rectal exam was. They're so paradigmatically unpleasant that you almost expect to secretly enjoy them. But no.
They came back in, and the doctor explained. Yes, this is a very unusual case: the average age of diagnosis of stomach cancer is 71. This type of stomach cancer accounts for only 1% of all stomach cancers. I have none of the risk factors. That said, it's very early, and surgery should cure me. The surgery in this case would be a total gastrectomy.
And by the way...
All four of us reeled; you could feel it in the room--dead air, shock. A total gastrectomy means that the entire stomach is removed. The esophagus is reconnected to the small intestine. You have to re-learn to eat, finding what you can tolerate, in much smaller portions, supplemented by vitamin pills and monthly B12 injections. I had hoped that catching it early meant that most of the stomach could be spared. But apparently not with this type of cancer, which is "diffuse" and hides out in the stomach, and often doesn't even show up in biopsies. I was enormously lucky that it had been found at all, since it wasn't responsible for my stomach pain, and is so hard to detect even when they're looking for it.
We came out of the room looking walloped. "Come on people, you look like hell! Suck it up. I don't want to make my mom suspicious. She has to have dinner before I tell her."
"You don't look so great yourself."
Dave Denniston is a world-class swimmer who lost the use of his legs in a sledding accident early in 2005. A few months ago, he wrote on his blog,
Attitude is everything, or so Ive been told, but when you arent allowed the chance to have a bad attitude, you soon realized that the people around you are everything. I know there is a tendency to forget about tragedys that other people experience, but in one years time I dont feel like anyone has forgotten about me. I would have to guess that I have more fans now than I ever did while I was competing.
There is so much Ive learned about myself this year that I wouldnt have traded the experience for anything. Im honestly reporting that the last year has been the best year of my life. My character has been tested, my body has been tested, and my spirit has been tested. Im a much better person now because of my paralysis.
I remember reading that, especially about the best year of his life, and thinking "That's really good of him to say. It's also gotta be bullshit."
But it's not. They haven't cut me yet, and I can't know in advance how I'll react to the ways my life will change when they do, but I can imagine that a better, stronger person would look at this experience and be thankful for it. I've seen instances of decency and love and community that I think a lot of people go their whole lives without seeing. Is that worth losing a stomach? Maybe. Relatives in Iran got on a plane and went to a shrine to say prayers for me; people are lighting candles for me in church; the phone hasn't stopped ringing; friends are crying when I tell them the news, and flying in to see me; nurses juggle schedules and twist arms to get me in to see the doctor; we have to stagger the visits from people who want to fly in for my surgery. I know it's cancer, but it feels like love. More than I ever would have known, I think.
And maybe things like this diagnosis remind us all of what we most care about, and stay with us long enough to keep us good and true when "normal life" is going on. Or maybe these are the little rips that communities gather around to mend. I really don't know. But when people say "That's awful," I think yeah, it's awful, and I'm fucking scared, but it's also amazing and wonderful, and part of you should envy me, because I've seen a beautiful world.
Having become a "complex case," I decided to find a first-rate cancer center and let them coordinate my care. It seemed too complicated to try to find and coordinate a kidney guy and a stomach guy and an oncologist on my own, going on nothing but recommendations from people I know personally. With some pleading and an extraordinarily helpful scheduling nurse (thanks, Teresa!) I found myself talking to a stomach surgeon at the U of C. He seemed sharp, and asked me if I had questions, and actually listened. "And who would do the surgery?" He would, of course. "And how many gastrectomies have you done?" Two.
Two?
I was on my own again, letting the U of C do their tests and guide my decisions, but finding surgeons on my own. It seems petty to note, but I didn't have moments of real depression until I had to get and coordinate tests and appointments. Most surgeons see patients on one, or maybe two days a week. I'd been told that I had to "take care" of the stomach within "a few weeks." So getting appointments seemed to be literally a matter of life and death. I would call and simply beg. I pulled every imaginable string. Then they'd call back and offer me the exact same time that someone else had just offered me. More calls, more begging, more favors from acquaintances. Out of everything that's happened in the past few weeks, it was the scheduling that nearly broke me. As one sympathetic oncologist said to me,
Hearing what it's like for you to have to choreograph all these appointments reminds me yet again what an absurdly chaotic mess we're in. It's like a chess game where someone forgot to instruct anyone what the rules are.
But people came through for me in a big way. One surgeon said to me, "Do you realize that three different people called me about you? Do you know that every Iranian physician in Chicago has called Dr. S about you? Is your dad some kind of bigwig?"
"When the network goes into action, it's out of my hands."
The surgeon has a pornstache. In fact, I'm confident that if he weren't a cancer surgeon ("surj-onk" is what doctors call the specialty), he would be a porn star. His demeanor is comically practiced Alpha: he's solicitous, but condescending; he talks about surgery the way small-time businessmen talk up the parking lot they're investing in; he gives me phone numbers I need like he's bestowing gifts, and he inhales deeply and impressively through his nostrils, as men are supposed to do when discussing matters of great moment. I ask him how many gastrectomies he's done and he says, "Well, ---, do you mean here, or internationally?" I dunno, Dirk Diggler, how about in a fucking operating room?* Then, as a final gift to the blog, when I tell him what I've been thinking of eating after the surgery, he looks a little surprised that I've considered it all, and says, completely without irony, "That would actually be very good, if you can stomach it."
But I've been told that you don't have to like your surgeon, he just has to be good, and this guy is supposed to be good. And he draws diagrams of the procedure, which is in fact very helpful.
Of course, choosing a surgeon is an absurd endeavor. How should I know who should operate on me? I spend my days on Pubmed, trying to find the preferred method of gastrectomy, and find that there are about four major ones, and a dozen minor variations. I have to take my frighteningly limited knowledge, their reputations, and my impression of them, and somehow decide that yes, this is the guy who should do the thing the consequences of which I'll feel in every moment of the rest of my life.
But there's only comedy. I ask pornstache what will happen if I go into atrial fibrillation during surgery. "The important question is what happens if I go into atrial fibrillation, which has been known to happen." I ask the second surgeon the same question. "Hey, you go into a-fib too? [He shakes my hand.]" First surgeon who doesn't have heart trouble wins.
* Of course, the social answer to this is "[Chuckle, of course I understand that you are The Man]." I was a little surprised to remember that my actual answer had been "Both, and recently," which told me how little I feel like fucking around about this. Of course, I didn't get a straight answer.
There's something about saying "they want to take out my stomach" that makes most of the people I say it to start to cry. They think, and I think, everyone thinks, "the stomach is what you eat with." The background thought in my head these days is "Holy shit. My stomach."
But I have a new mantra: "The stomach is just one part of the entire digestive system. It neither digests food nor absorbs nutrients. Its functions can be performed elsewise, and it's possible to live a normal life without it."
This is even true. It's like this:
The stomach:
1. Stores what you eat and releases it slowly to the intestines to be digested.
2. Mashes up what you eat so your intestines can go to work on a semi-liquid goop called "chyme."
3. Kills bacteria in what you eat.
4. Produces something called "intrinsic factor," which allows you to absorb the vitamin b12 that you ingest.
Without it, you:
1. Eat smaller meals throughout the day, rather than a few big meals.
2. Chew like hell, and avoid foods that your body has a hard time digesting.
3. Keep your fingers crossed, because you're SOL on this one, as far as I know.
4. Get monthly B12 shots.
Simple, really. But it's a mantra for a reason; I'll let you know how many times you have to say it before you believe it.
"You have to prepare yourself: we might take out your stomach and find no cancer."
Do they even realize how that sounds? The thinking is that this has been found so early that the microscopic bits found by the biopsy were all there was, but when a stomach makes cells like this, you don't leave it in, because it will make more. But there's no way to "prepare" for the thought in the back of your mind for the rest of your life that maybe you didn't need to have your stomach removed.
I always thought that a cancer diagnosis was straightforward: there's a tumor, or your blood count is way off, or something else obvious and scary. Instead, I have pathologists saying, essentially, "those look more or less like cancer cells." One surgeon said, "They might even be naturally occurring, we don't really know; no one's had the guts to leave them in."
The kidney is the same way, even though there is a tumor. The doctors talk about renal cell carcinoma, but every now and again they'll remind me that there's a 15% chance that when they take it out, they'll find that it's benign. But that tumor has to come out, whether it's benign or not, so I don't worry so much about it, except that I'll be a bit embarrassed if it turns out that I didn't have cancer.
The stomach is a different story, and a bit of a bind: the cells they found were "suspicious" and doctors have told me that I have gastric cancer, and there's no way to "unfind" those cells. But the kind of cancer those cells make is notoriously hard to detect, so if test to confirm the diagnosis come back negative, it won't necessarily mean that I don't have cancer. I might actually have to decide, without being anywhere near certain, whether to have my stomach removed.
It's hard to fall asleep. I don't mope or cry, I see friends, I research things to eat after surgery, and ways to take care of myself and feel well, but when I get into bed and relax a bit, I think "Holy shit. My stomach."
Usually, in the wee hours, I give up on sleeping and pick up the handheld computer next to my bed, and type something into Google like [gastrectomy diet -bypass] or [gastrectomy "quality of life"]. What I desperately want is someone my age, to whom "quality of life" means something I would recognize, to say "Hey, I did this, and your life won't necessarily suck."
Last night, I was reading messages in a gastrectomy support group, and suddenly there it was: a woman, almost exactly my age, found cells by accident, stomach removed--she sounds smart, and at least well enough to be leaving messages on the internet.
It feels intrusive to email a stranger about a trauma, but, like I say, the world is more full of love and caring than you'd ever guess. She responded, and responded, and responded to my questions. She put me in touch with a doctor who's an expert in this type of cancer, and most best of all, she sounds like she's truly thriving: she works, she goes to school, she's married, she travels, and she swims! Mercifull god, she swims! I'd been too terrified to even ask my doctors whether I'd be able to swim after the surgery; I couldn't stand to hear the answer.
Of course, she also told me that everyone's experience is different, and some people have a much harder time than others, and that, even in the best of cases, it's a long and brutal road back to normal life. But it is possible. More than anything I'd read, or anything anyone had said, the simple fact of her existence, and her extraordinary generosity in giving me a peek into it, made me feel like things might eventually be ok. Thank you.
I know people are reading, and concerned, so though I had posts planned, let me jump to the present day (June 6) and total confusion. I've had two endoscopies with biopsies that were read as what's known as signet-ring cell stomach cancer. The second of those readings (with more extensive biopsies) was confirmed by the University of Chicago. But no one is going take out a stomach based on what amounts to one thorough endoscopy. So the University of Chicago did their own, third, endoscopy with biopsies and ultrasound (signet-ring cancer often causes a thickening of the stomach wall). Today, the U of C surgeon called and said, "These are preliminary results and we won't have our multi-disciplinary meeting where we present your case until next Tuesday, but based on what we know so far, we don't think you have stomach cancer."
I think it was the first time in human history that someone heard that and answered "I was afraid you'd say that." Lemme explain: diffuse gastric cancer, which is what I might have, is often missed by endoscopic biopsies. It doesn't grow in a tumor, but in little clumps of cells, either on the inside of the stomach, or in the sub-layers of the stomach wall. It's not really surprising that one, or even five endoscopies would miss it. So endoscopies that don't find cancer don't get me off the hook; what needs to happen is for someone to look at the slides that were read as signet-ring cells and say "Oh, those look like signet-ring cells, but in fact they're something else." That hasn't happened yet, and now begins the third major search: for a pathologist or group who specializes in diffuse gastric cancer. Clearly, this isn't bad news, but if I do have a cancer that just wasn't detected the third time, I'm not thrilled about leaving it in me. But surgery is postponed for the moment (it might have happened as early as next week), and I might actually go elsewhere to be examined.
The sympathetic oncologist says: "This is the first lesson: you're not in control."
The University of Chicago multidisciplinary committee met about my "case" and the consensus was that I don't have stomach cancer. They can't be completely certain, given the original finding, so they want me to do a follow-up in a few months, but they're confident that they won't find anything, and that I'm ok. Wow. Shaking. Explanation later. Thanks so much to all who called or wrote.
Americans apologize for calling, Iranians apologize for not calling enough. I appreciate both approaches.
Americans ask questions, Iranians give advice. USA! USA!
First, it was people who are in no way doctors calling to tell me whether to have a partial or radical nephrectomy. (The considerations are: save some kidney if you can, because you just might need it vs. be totally sure that there's no cancer left in your body.) Unfortunately, there's a raging debate among urologists on just this question, so there really are points on both sides--in fact, visiting surgeons wasn't much different from fielding phone calls, with each person hitting the same talking points . Here folks, let me, and my several hours of Pubmed research make the decision! (Partial, for those keeping score.)
I understand what the Iranians are thinking: they don't want me to go astray and harm myself, and there isn't the same emphasis on "respecting autonomy" in Iranian culture, so it doesn't occur to them that they're crossing a boundary, or being meddlesome. But the excesses of the Iranian approach are hilarious breaches of any culture's norms. The latest round of advice-giving concerns which surgeon I should have do the surgery, and tonight someone actually said this to me: "Look, Dr. S was a general surgeon, and then became a urologist. I guarantee you that if the urologist accidentally cuts your aorta, he's just going to put his finger on it until the general surgeon gets there, but Dr. S will take care of it himself!"
Everyone told me I had stomach cancer because the original pathology report from my stomach tissue samples said that there were "foci of signet ring adenocarcinoma." The University of Chicago reviewed those samples and and confirmed "apparent signet ring cells," though it did also note that all the samples were "artifactually distorted."
Those results were really the second time they thought they'd found cancer, since I'd had a previous endoscopy--the one with the "suspicious" cells. But, with much-appreciated caution, no one was willing to do any surgery until they had confirmed the results themselves. I had a very thorough endoscopy done at the University of Chicago, which added ultrasound and dye to the regular "white light" endoscopy. I waited a long week for the results, but they found nothing. No signet ring cells, no lesions, no thickening of the stomach walls.
But I knew that in diffuse gastric cancer, it wasn't unusual for one endoscopy to simply miss the small clumps of signet ring cells. What I didn't know were two things: 1) "artifactually distorted" would turn out to be pretty important and 2) there are such things as benign signet ring cells in the stomach.
The University of Chicago decided that, given the distortion in the original slides, and the fact that their own endoscopy showed no signs of cancer at all, "on balance," the evidence suggested that I don't have stomach cancer. Put that way, it doesn't sound so very convincing, but I had a spy in their multidisciplinary meeting--well, there was someone there with whom I'd spoken in an unofficial capacity, and who could report things to me more informally, without the surpassing caution that has to accompany their official recommendations. I found out that the debate hadn't been between those recommending a gastrectomy and those favoring a follow-up endoscopy, but between those favoring a follow-up endoscopy and those who wanted to send me home and tell me to forget the whole thing. The latter group was convinced that the original findings were just a strange anomaly--not a mistake, exactly, but not worth worrying about. Older, more cautious doctors eventually brought everyone around to the consensus that they couldn't take even the small chance that I do have cancer lightly, so a follow-up is warranted. But even the doctor I talked to "officially" said "we don't expect to find anything."
A few days after that, I heard from the other cancer center in Chicago, where I've been pursuing the case in parallel. Their pathologist was a co-author on one of the very few papers which recognizes that not all stomach signet ring cells are malignant, so he's one of the very best people in the world to have looking at apparent signet ring cells in your stomach. His opinion is that the original slides don't show signet ring cells, but only seem to show them, because of the artifactual distortion (which I take to mean that something happens to the samples when they're collected, or put on slides). Their multidsciplinary committee made the same recommendation as the U of C: we don't think you have stomach cancer, but you should have a follow-up in a few months, just to be sure.
Though no one can say (either scientifically or legally) that they're 100% sure that I don't have stomach cancer, they've come as close to unfinding the original cancer as they can. I'm not so unconcerned that I won't be relieved if the follow-up also shows nothing, but this time, nothing is what we all expect.
A sampling of communications from my employer.
--After I was diagnosed with stomach cancer, and emailed to make arrangements for someone to fill in for me, from one of the firm's owners: "You shouldn't be worrying about work now. Why don't you call us when you're up to it?"
--After I was undiagnosed with stomach cancer, from the other owner: "The next time you want some time off to visit family in Chicago, a less elaborate excuse is needed."
--From the office manager, a couple of days ago: "Your paid-time-off ran out at the end of May, but we decided to keep paying you anyway."
I was so happy basking in love that I didn't notice that what feels like love to me is pain for the person I'm feeling it from. After we heard that I probably don't have stomach cancer, everyone was giddy for a while, then all the people closest to me collapsed, haggard and spent.
I'm allowed to mentally check out, to stop worrying, to be silly or even happy. That's called resilience. But the people who love me think that being happy means they're callous, so they guard against it. Even if worry wanted to leave them, they'd chase after it. I always have something to do, because being resilient is considered an accomplishment; the people who love me feel like they can only do things at the margins, by listening, bringing food, or hugs. And if the worst comes to pass, I'll be dead and done with it all, but they'll just have a gaping wound that won't go away. So they're haggard and spent.
We tease my mom, and tell her she's not tough, because she's not what we think of as stoic--you can see the weight pressing on her, her nerves are frayed, she can't sleep, she doesn't laugh, her hands knead whatever's in them, and sometimes she'll just start to cry. Of course, we tease her because we can't help her; we wish she'd be ok, but we can't make it happen.
But I realized something about worry when I was the only one who knew about the suspicious stomach cells: it's work that needs to be done. I don't understand why, and things about "feeling in control" don't quite hit the mark. Whyever it is, when something's wrong, it demands worry. When my mom didn't know about the stomach, she wasn't worrying about it, and I was. It's like an acid that won't be still inside you, slowly singeing as it goes. But as soon as I told her, she took on the worry, and I relaxed, consoling her, thinking of the best case rather than the worst. And I realized too that she's been doing the worrying for all of us, embodying the worst that can happen, so that we have some place to go to try to make it better. We consoled ourselves by consoling her, and let go our worry because we knew she wouldn't let it go unworried.
She bore the worry for all of us, and not just our worry, but her own maternal worry, and her own thoughts of my dad's cancer, and her own cancer from not so many years ago. So silly that we would tease her, when she was tougher than all of us. But we don't have good ways of saying "thanks for doing my worrying for me," even when we find out that it's one of the things to be most thankful for. Maybe teasing is just an acknowledgement, but such a paltry and twisted one. Another reason to live: to say "thank you"--to everyone, and to my mom.
The Iranian surgeon, who we saw again yesterday, says, "The entire city knows this guy has a little tumor in his kidney," and threatens to make me run stairs the day after my surgery.
I can't resist that, so we're on for July 6th.
"Inspection!" I say, and stand aside so that my mom and my ex can look in the toilet bowl to judge the clarity of my stool. Yes, seriously, and yes, clarity. I've had about 3/4 of a gallon of GoLytely, the purpose of which is to clean out one's intestines to the point at which one is, forgive me, shitting clear liquid. I can't be trusted to judge it myself, because if I see one more drop of GoLytely, I'm going to cry.
"That's not clear!"
I pout, and go back to the couch for the few minutes I have before I have to run back.
Yes, I'm a grown man. There's no such thing as a grown man doing "bowel prep."
Today, I lay in bed for a while, reaching around my side with my fingers, trying to imagine the scar, thinking about whether they'd have to take off one of those little bottom ribs. I'll find out early enough tomorrow. I'm to report at 5:45am.
Thanks for all the good wishes. They tell me I'll be in the hospital for 4-7 days after surgery, but I'll try to get someone to post an update here as soon as possible. See ya!
Ouch! But alive. It was cancer, but hadn't gone anywhere, apparently. More in a few days.
Still in the hospital, as my blood count keeps falling. Since I'm young, they're giving it some time to recover on its own. If it doesn't, I'll get a transfusion. Not feeling too bad, but super low energy. Thanks for the gifts and good wishes.
No transfusion. My hemoglobin is creeping back up, so it'll be a week or two of feeling like I have altitude sickness, but that's manageable. Might even go home tonight.
So sweet.
In the past week, I've been in derationalizing pain, immobile, nauseated, lightheaded, sleepless and basically miserable. But for me, all this will pass. Tonight, think of the people who endure these things as part of normal life.
Later this weekend, maybe gory photos.
This is the first time I've been able to sit up long enough to type on a real keyboard; all the other post-surgery posts were pecked out on my phone. So it's a milestone of sorts. Of course, the screen is swimming and I'm breathing hard. Red blood cells: you need them!
For those of you into the gruesome, here's a picture of my incision scar (the black spots are where they had attached the "drain." For some reason, surgery bloats the abdomen, so I look about twice as thick as I normally am. Apparently, it was all much more gruesome a week ago, but no one thought to take a picture then.
Still alive! I have a couple of posts percolating, but the brain isn't working the way I'd like just yet. I'm getting a bit better each day, and even managed to shave with a razor yesterday, so look out world.
In March, when I first had stomach pains, I called my friend Dr. L, who said, "It's not like you have cancer, ok?"
My cousin's wife accompanied me and my mother to my MRI, and said to my mother, by way of reassurance, "The worst thing it could be is cancer, and he doesn't have cancer."
We all do that, mistaking luck for protection, or thinking that the most awful thing won't happen, precisely because it's so awful. It's as if we believe in justice, and believe that it sees things by our lights. When I tried to pray, one thought that tripped me up was "What if I do deserve this? What if I deserve it and don't even know it?" But I had to leave that behind, too. Like the man in the movie says, "Deserve's got nothing to do with it."
Today, three months after surgery, and after all those tests, I, more than most, would qualify for a USDA Tested & Approved, 100% Cancer-Free stamp. That's a good thought, but what I feel is that the happy bubble of protection has popped. I don't think anyone will say to me again, "I'm sure it's nothing."
This isn't a very heavy burden, and I can't complain, since I've learned something. Namely, that no matter how much you think you've thought through your mortality, there's no way to pre-imagine the terror of its specificity.
