This is the member story for Ronald Newburger.
My name is Ron Newburger. I live in Grayslake, Illinois, and will be 66 on 11/13/2008. I am married, with 3 children (all grown) and five grandchildren. My 88-year-old mother-in-law lives with us, as well as my divorced son. If that was not enough, my life as I knew it came to an end 4 years ago. I relate this story, not because of anything miraculous that I did to further the advancement of a cure for GIST, but in hope that my experiences and journey may give some insight to someone else who may in some way relate.
At age 60, I decided that I would get a “baseline” colonoscopy for my birthday. Taking you back ten years prior, my good friend and PCP (primary care physician) had been after me to have a sygmoidoscopy. Every year, for ten years, I refused. After my wife had had two colonoscopies, I told my PCP that I would do that if he would recommend it. He said that there was no basis for such an expensive test that insurance would not approve. At age 60, I told him that as I was in a PPO, I was going ahead with my test with or without his approval. I went to my wife’s GI doctor, Dr. Robert Hadesman at Condell Hospital in Libertyville, Illinois. We met with him for the pre-procedure office visit. We went through my medical history (including diabetes and high blood pressure) and he told me what the procedure would be like. We made an appointment and as we were about to leave my wife told him that my grandmother had died of a stomach disorder. I knew I was getting old but never remembered such a diagnosis. He said he would add an endoscopy to the procedure. I agreed by jokingly saying that he had to promise to do the endoscopy first. Keep in mind that my follow-up with my aunt confirmed that in fact my grandmother did not die of a stomach disorder; thus, there was no reason to have had an endoscopy. As you will see, something else was at work here.
The procedure was done and upon awakening, the doctor told me that the colonoscopy showed no evidence of disease (NED). That was the good news. The bad news was that the endoscopy showed a shadowy “something” on my esophagus. He did several biopsies and would have the results in 72 hours. I made the mistake of asking what he thought it might be. He said, “Anything from benign to cancer.” He sure covered his butt.
I went home and spent the most traumatic 72 hours of my life. I was dying! There was no other explanation. I worried about my family. I planned my funeral and burial. I don’t think I slept for 72 hours. And then the day came. He announced the biopsies came back “benign.” What a relief. What a wasted 72 horrendous hours. He pulled me back to reality by saying that the problem was that he still couldn’t accept that it was nothing. It had to be identified. He wanted to do another biopsy. I agreed and it was done. This time however, I had promised myself that I would never ever put myself through the mental anguish I had previously gone through. This time I was fine. He called me in to discuss the results. Again it was “benign.” Doing fine, weren’t we? He, though, was still not satisfied (persistent little bugger). He recommended that I have an endoscopic ultrasound. He sent me to the Robert H. Lurie Cancer Center at Northwestern Memorial Hospital in Chicago.
I think you can already guess the results of that procedure. Wrong! It too was benign. I then met with the Chief of Surgical Oncology at NWMH, Dr. Mark Talimonti. He explained that although all of the biopsies were benign, the tumor should be removed in case it was a GIST (as he expected) and only a subsequent pathology would reveal the truth. It turns out that my mitotic rate is 4 of 50, which may explain all of the benign results. We spoke of Gleevec, which was still in its infancy and being trialed there at NWMH. He suggested that as long as the tumor appeared to be quite operable, he would save the Gleevec for when it became necessary. I asked, “If I were your father (assuming he loved his father) would you still recommend the surgery?” The answer was yes.
The surgery was in July 2003 and took 5 hours. I was in the hospital for 2 weeks and at home recuperating for another 4 weeks before returning to work. Surgery was certainly not a pleasant experience. The only thing that stands out though is that when I woke up I had asked the nurse in recovery to stay with me a couple of minutes until I could get my bearings. She said she would be right back; but never did return. Being unable to ask questions was very disconcerting for me. I felt totally lost and out of control. The other two things were the tape that was used to hold the morphine drip bothered me and the removal of the catheter changed my voice to this day. I now sing soprano. While in the hospital, I was asked to participate in their blind study of Gleevec. I asked if I would know if I had the placebo or not. It was a blind study and I would not know. Not particularly wanting to add to the plethora of pills I was already taking I told them to pretend that I had gotten the placebo and study me in that manner. They looked confused and let it drop.
