My name is Donnie Chadrick and this is a brief recall of my five-year battle with the beast we all have come to know as GIST.
It all started shortly after my 36th birthday in February 2001. I was working for a small oil company as a tanker driver here in Medford, Ore. I began to develop severe pain in my lower right quadrant and lack of energy that I ignored until I could no longer justify not seeking medical attention. I spent three weeks or so seeing my general practitioner. He finally sent me to get a CT scan. From there it was off to see the gastroenterologist, who set me down and told me those dreaded words: “You have cancer.”
He told me that I had a football-size tumor growing out of my intestinal wall and that I needed surgery right away. Within two weeks, I was under the knife of a very good surgeon. When the surgery was over, he told me he was only able to debulk the tumor down to about the size of a grapefruit because there was a main artery and my urinary tract running through the center of it. They also removed some of my small and large intestines and a whole gob of grape-sized tumors they found throughout my abdominal cavity. (I wonder why they always use sports equipment and fruit to describe tumor size?)
I was given six months to a year to live. As I was recovering, my mother brought me a copy of Time magazine. On the cover was an article describing the “golden bullets” referring to the new breakthrough in cancer called STI571 aka Gleevec. I took this information to my local oncologist and she referred me to Dr. Charles Blanke at Oregon Health & Science University (OHSU). At that time, Gleevec was still in trial phase and I was prescribed 800 mg. Within a couple of CT scans, my once-growing tumor began to shrink and shrink until in about a year of starting this miracle drug my tumor was barley visible. I WAS STABLE! I had been so blessed, I wanted to shout it from the top of the highest cell tower.
Gleevec kept doing it’s magic until the middle of 2004. My CT scans showed three new tumors in my pelvis. In October 2004, I had surgery again but it did not do much good. Within a couple of months, as I stared into my doctor’s eyes, I could hear the words from the little girl on the movie “Poltergeist” —THEY’RE BAAAAACK!
So now it was time to take my treatment into my own hands once again, and with the help of the Life Raft Group and others like Emerging Med, I found a Sutent trial close enough that I could participate in. I started Sutent on two cycles last spring in Santa Monica, Calif. and then switched trial sites to Portland. Within a couple of cycles, I had minimal shrinkage and there after stability.
A few days into a cycle I feel fatigue and weakness that increases to the point to where all I want to do is sleep, my appetite decreases, I cannot even taste food, and there’s occasional vomiting, mouth sores, and dry skin to the point of cracked and bleeding feet. My facial hair has turned white, I get bloody noses, and acid reflux that prescription Nexium won’t help. My liver enzymes have to be consistently monitored as they run too high at times. Also, cuts and abrasions won’t heal — they seem to get better during washout but only to return once the next cycle starts.
Alternatively, my washout period when I’m off the drug is great! I almost feel like myself again, so I try to cram all my honey-do’s into that two weeks of bliss.
As far as working, I went on disability in January 2003 when I was prematurely kicked off Gleevec. I was all lined up to go to Dana-Farber for the Sutent trial and had been told I would be there for six months. I was there for only a week. When I got back, I was scared to give up my disability because I had no idea what was around the corner with my health. If something went wrong again, I would have a six-month waiting period for assistance.
I have a great boss who still pays for my insurance and in return I work about three days a month as a relief driver. It’s OK with the folks at Social Security as long as I do not make more than $580 a month. In retrospect, I’m glad I made the decisions I did because I don’t think I could hold down a full-time job now.
I do not know how long it will last this time but I do know how grateful I am to be here with you all. I have just finished my eighth cycle with Sutent and although the side affects can be pretty harsh, they do not outweigh the gift of life. If someone asked me advice on living with cancer I would have to say “Never give up! Be in charge of your own health care, and keep supporting the Life Raft Group — they are a port in the storm.”