Michael's Story - A Funny Thing Happened to Me on the Way to the Gastroenterologist
by Michael Kosmin
On January 30, 2007, I knew about UNIX Servers, Oracle Database 10g, data integrity, Elizabethan lute music, Karl vonFrish's studies of honey bees and how to prepare lobster. I didn't know about being married, because I've only been married for twenty years and I did not know about GIST.
I did not know about tarry stools. I knew about internal bleeding, but I thought you needed some affliction like stomach ulcers or the Ebola virus to bleed internally.
I awaked at about 4:00AM on 01/30/07. I sat up. Mistake. Everything in the room, mostly bookcases, were moving up and down liike a charter fishing boat in 20 foot seas, but faster. I knew I could not walk down the stairs standing, so I sat down on the top step and intended to get myself downstairs on my bottom, one step at a time. Even this was overambitious under the circumstance. In retrospect, I was down over three units of blood and my blood pressure was "zero" by my reckoning. The sensations were like triple strength morphine. Like breathing and not breathing; like flying and not flying; like hitch-hiking to Saturn.
My wife called 911 directly after I blacked out and rolled down fifteen steps making a fair racket. I didn't scratch a fingernail in that event. EMT guys came quickly. (Why is there always an EMT guy named 'Jim'?) Don't the police in Morgantown, PA, have anything better to do at 4:00AM? No. So I get to be half strapped to a board and carried down another flight of stairs into the 25 degree Fahrenheit nght with only a pair of Jockey shorts on. No, 62 year old guys don't really get embarrassed that much any more, but they are subject to hypothermia. You don't see guys on the National Geographic Channel climbing K-2 with only Jockey shorts on, or if you do, you don't see them for long. Maybe Elverson EMT should take some mountain rescue courses. Yeah, I know they're the ones doing me the favor, but I'm the one without the clothes.
After a not brief enough but entirely unskilled drive to The Reading (PA) Hospital, I got to add to my hypothermia. I saw my wife who drives faster than Evel Knievel waiting. The hospital had me down for tests in a few minutes. A pretty bright gastroenterologist, Dr. Winn, had an endoscope down and found the GIST on my stomach wall in short order. In retrospect, and having since read a lot on the GIST-SUPPORT website, Dr. Winn was really fast in the diagnosis of something he may have seen only a few times in his life.
I was given over to Dr. Kurt Bamberger, a senior surgeon. He explained the GIST details well. I knew when I first heard the sound, "GIST" it was bad -- it was the tone. I challenge anyone reading this to say the word, GIST, in a pleasant or reassuring tone He stopped at his knowledge of adjuvant Gleevec use, but he is a surgeon by his own description, not an oncologidt specializing in GIST and other sarcoma.
Now it's time for the fifth rarely referenced segment of Disneyland, Resection Land. I have never before seen the surgery staging room where 20 patients are next to walls with big identifiers such as "1B" etc. It looked like the surgical equivalent of the Battle of Midway. (The only previous time I was in a hospital eas the week of October 22, 1944. My mother was there too.) There are greater than 100 surgeries performed daily at The Reading Hospital That's good because the doctors are really, really used to it.
An intern working with Dr. Bamberger, Dr. Tim Platz also worked on me. For the next week, Dr. Platz came to visit me at 5:00 AM on the dot to see how everything was working / progressing. When you resection a stomach, you shut it down for a week. I lost 35 pounds, wound up at 170 lbs. I thought to myself, "Hell, some people would pay a zillion dollars for this weight loss and I got it for "free". I could do without the 8" clipped together Frankenstein incision from my chest to my navel .
The worst thing for me was that previous to my surgery I had always slept on my front. With the Frankenstein clips, suction tube down my nose to my stomach and four intravenous lines, you do not sleep on your stomach. I am describing 62 years times 365 days here.
Dr. Bamberger told me to get a second opinion. I did. I found Dr. Marget vonMehren at Fox Chase Cancer Center. She saw the mitotic slides and first CT scan. She and an intern working with her concluded "adjuvant Gleevec." I am now, 04/30/07, on my second container of Gleevec. Dr. vonMehren is a 7x24 GIST person.
I decided to use Wal-Mart as my pharmacy for a few reasons uncompelling to the remainder of the Universe, but I do things like that. One reason is that if any pharma customer can put pressure on a drug company, that customer is Wal-Mart. I was right about that. They do not pee in their pants looking at a 30 tablet container of pills worth $3,400.
Today is 04/30/07. Just got the results of my second CT scan taken ten weeks after my primary GIST surgery. Nothing bad visible. Can't ask for more than that.
I wish all who read this no Gleevec side effects, no Sutent side effects, and the as of yet unannounced drug that will wipe out GIST to free you from future concern.