A GIST Chronicle
by Ken Saladin
Part 1: Friday the Thirteenth–My Lucky Day!
It was 8/13/10–my son’s 30th birthday and the last Friday of summer vacation before the start of fall classes for me. Otherwise I was expecting a pretty ordinary day. My wife Diane was already up and in the kitchen when I rolled out of bed about 8:00. By 8:15, I was in the shower. While rinsing my hair, I felt a sharp pang in my stomach and thought "Jeeze, I’m hungry! Better get out and get some breakfast." Then within a minute or so, I started to feel a little light-headed, then a lot light-headed. "What the hell’s going on?" I wondered, leaning on the shower wall and thinking I could pass out in there. I decided I’d better get out rather than risk falling in the shower. So I did, leaned against the bathroom sink, and tried to towel off. But I was too dizzy to do that and thought I’d better get over to the bed so if I were to fall, I could have a softer landing.
I got to the bed and wanted to get in, but then I felt nauseated and in a moment, I knew I was going to throw up. I knelt before the toilet, retched a bit, and then brought up about 100 mL of red blood and mucus. "Diane?" I yelled. "Diane??" (louder). I looked at the blood in the bowl. The mucus was especially thick and wouldn’t fall from my lips; I had to tear off a bit of toilet paper to wipe it off each time I vomited a little more. A wave of profound sorrow came over me and a sob escaped my throat as I thought, "Oh God, I’m not going to make it to my daughter’s wedding (April 2011). I’m never going to see my grandchildren." Honestly, that’s the first thing that came to mind.
Diane appeared in the doorway and I said, "I’m vomiting blood!" She looked and said, "You sure are." But I was finished vomiting by then and my stomach had settled a bit. She helped me to the bed and got a towel and dried me off. I didn’t have that hungry feeling anymore. We speculated that I had a peptic ulcer. Even that seemed strange enough; I never thought of myself as the type to get an ulcer, if there is such a type. I pulled the sheet over me and fell asleep.
About 10:30, I woke up and I knew I was going to vomit again. I went to the toilet and brought up another 30 mL. We debated whether I should go to the emergency room. Diane (my wife is an R.N.) said they probably wouldn’t do anything but give me I.V. fluid, tell me to see my doctor, and charge me a whole bunch of money. I called the office of my primary care physician, and couldn’t get through to him. I called Diane’s gastroenterologist (soon to be mine as well), and his office was closed for the day. His answering service paged him and told me the office would be open Monday. I decided Diane was probably right, and since I didn’t feel any nausea or stomach upset by then, I decided that I’d just keep trying to reach my PCP and waiting to see if Dr. Garnto, the gastroenterologist, called back, and I wouldn’t go to E.R. unless one of them recommended it or I started to get worse. Garnto never called that day, but we did reach my PCP’s physician assistant and told her what was going on. She said she would speak to him, they’d review my file, and she’d call me back within half an hour. She called back an hour later and just said, "He just said to see a GI doctor on Monday. He says you can go to the emergency room if you want to, or you can come to the office and we’ll do a CBC (complete blood test) just to see if your blood work is ok." It all sounded pretty lackadaisical and unconcerned to me, so I decided to wait it out until Monday and go to E.R. only if things got any worse over the weekend.
I felt tired out and worried but otherwise stable. While waiting to see if Dr. Garnto would call back, I sent the secretary at work an e-mail titled "Well this is a fine how-do-you-do," telling her what was going on and apprising her that I might have to start classes late. I sent essentially the same to my publisher, in case this was going to affect staying on schedule with production of the 6th edition of my anatomy and physiology textbook, which was in the page proofreading stage. When it became apparent that Dr. Garnto wasn’t going to call, I decided I’d just call him first thing Monday. I cancelled my first day of classes, figuring I would be elsewhere with bigger things to attend to on Monday. We adjusted the anatomy lab schedules of two other instructors to delay the start of labs by a week so their sections would be in synchrony with mine.
I spent the weekend fairly normally–tired and a little light-headed at times, but I rested a lot, ate normally without discomfort, finished a novel I had been reading, and e-mailed the news to some of the family. I even proofread three chapters of galleys of the book, and drove to campus on Sunday to set up things for one of my classes and notify my students that class would start late. I passed the weekend just thinking I had a peptic ulcer and I’d be examined as soon as possible the next week.
Two weeks later, I would learn that I most likely had stomach cancer. I had been referring whimsically to my Friday the 13th as "Bloody Friday" in e-mails to my friends. I also think of it now as Lucky Friday. If I hadn’t vomited blood, I wouldn’t have gone for an endoscopy or suspected that anything serious was wrong. It might be that morning of hematemesis that saves my life by getting me to the doctor.
Part 2: Down Endoscope
8/16/10–Among e-mail friends, I used to start letters "Up periscope" if I had been away quite a while, immersed in work, and sign off "Down periscope" if I expected to be submerged again for some time. But Monday, August 16 was "Down Endoscope Day" for me.
Friday was hematemesis day, and after a weekend of "watchful waiting," Diane reached Dr. Garnto, our gastroenterologist, early Monday. He and his wife Nancy have been friends of ours for 30 years. We used to be neighbors and our sons grew up together. His son was my student in anatomy and physiology a couple of years ago and played a small part in getting him into a master’s program in physical therapy. Garnto also mentored one of my best premed students, Jared, over this summer, before any of us suspected I would soon be Garnto’s patient.
Garnto said I could come to the hospital in about 2 hours for an upper GI endoscopy–an EGD (esophagogastroduodenal endoscopy). I know that word is a mouthful, but the endoscope itself isn’t; it’s a noseful. I’ve always recoiled at the thought of anyone sticking a long tube down my nose to look into my stomach–and here I was about to be subjected to exactly that. So at 11:30, I checked into Outpatient Services. Garnto’s staff knew me well and kidded a bit, "Take good care of this one. That’s Jared’s professor."
A long time ago, I had such a phobia of needles I thought I’d almost rather die than have an I.V., but this day I got stuck in both arms–one to take blood for a CBC and one for the anesthesia. Nice of them to pump something in to make up for what they sucked out. I don’t think my bank account will receive the same thoughtful consideration. My first I.V. and my first endoscopy–what a day! I laid on the examining table, they put chest electrodes on me, and they hooked up the anesthesia. Garnto came in and I found him to have a very comforting bedside manner. I told him I probably had an ulcer. (I hear doctors appreciate it when patients diagnose themselves; it saves them the trouble, right?) I also said to check for any sign of Barrett’s esophagus, because I’d been having GERD for the last five or six years and I knew that that can lead to this precancerous condition.
On a wilder hunch, I also pointed out that I had been to Ecuador in May and eaten a raw fish dish, ceviche. Over the
weekend, thinking about that and about my doctoral training in parasitology, I brushed up on anisakiasis, a gastric roundworm (Anisakis) infection contracted from raw fish and which attaches to the stomach wall, with painful results often requiring gastrectomy (at least back when I was in grad school). I never thought I’d be at any more risk of anisakiasis from ceviche than from sushi, since the fish in ceviche is "cooked" with lime juice. But I learned to my surprise that there are four world hotspots for anisakiasis and one of them is coastal South America–precisely because of the popularity of ceviche! If I ever make it back to Ecuador, I think I’m going to pass on the raw fish. One article said that while the lime juice kills almost any potentially pathogenic organisms in the fish, it doesn’t kill Anisakis larvae! I suppose this is because their cuticle protects them from the acid–something microbial and protozoan pathogens don’t have going for them. Garnto found this quite interesting and I told him to watch for white 1-centimeter worms on the mucosa.
A nurse rolled the ECG machine closer to the table and I laid there watching the traces of my heartbeat, expecting to start feeling drowsy. She asked me what day I was born. "May 6, 1849," I joked. She said, "Gooood." The next thing I knew, I heard Diane saying my name and felt her squeezing my hand a little. I opened my eyes, and the procedure was all over. I never did feel drowsy; I didn’t feel a thing from the endoscope; I didn’t even have any throat soreness in evidence that my gullet had been invaded. It was wonderful. Alas, they wouldn’t give me any of that stuff to take home.
They had found no ulcer. No worms. No little endogastric troll with sharp teeth. For now, the word was "proximal gastric mass." Oh wait–that’s three words. But scary words. Four years ago, Ellie T., the wife of my colleague Tom, died of stomach cancer (an adenocarcinoma), in her 40s I think. She was diagnosed only about 2 weeks after earning her Ph.D., and it took a couple of long miserable years for the cancer to do her in. Tom said in a faculty meeting a year or two later, "I’ll always remember those words–We found a mass." Now I had a mass, and I didn’t even have to turn Catholic to qualify. But neither did Ellie.
Dr. Garnto said there was no sign of Barrett’s esophagus, but there were traces of recently healed esophageal tearing, which might have been the source of the blood I had vomited, or the blood may have come from the gastric mass. He said the epithelium overlying the gastric mass looked fragile.
I was scared. I thought, figuratively speaking, "Is it time to clean out my desk?" I thought again of my daughter’s wedding, of imaginary grandchildren I might never meet. I wondered if I should set up a college endowment fund for them while I still could, something from the grandpa they never knew. I thought of Ellie’s beautiful, wholly secular memorial service where they ran a Powerpoint slideshow of photos taken over the years of her too-short life, and played her favorite music, some of it on an old Edison cylinder gramophone from their antique collection. I considered whether I should compile some photos of my life on a CD for that purpose; save Diane the trouble. Leave a CD in my sock drawer labeled "For my memorial service."
So that’s how I passed the next two days, half expecting to pay a visit to Ellie, teaching my classes and not saying anything to my students or colleagues yet. I had an appointment to go back on Thursday for ultrasound and CT scans.
(To be continued)