Welcome to the club?
In the spring of 2006 at the horseshoe courts, a good friend named Elbert, said to me Dean, it looks like you lost some weight. I replied , Im sorry to tell you, but I have cancer. He said, Welcome to the club. Elbert had prostate cancer surgery four years ago. We exchanged a few pleasantries, and he wished me luck. I thought afterward that the club he was referring to was not one that I wanted to join.
After I retired from 31 years of teaching in 1995, I worked for one of my former students for a couple years in the printing business. When he was setting up shop at a new location, I told him I wasnt going to work any more because I didnt feel very well. I was downing aspirin, Tylenol, Aleve, and whatever else, thinking I would feel better. I had joined a local horseshoe club and the Wolverine State Horseshoe Pitchers Association and was having good times. Horseshoes was a sport where I could meet new friends and get some great exercise. Before long, I was the secretary of two horseshoe clubs.
I had an episode of unexplained anemia in mid-1997. My wife, Diane, still has a copy of my doctors order for a blood test that said, R/O GI bleed. But the anemia resolved in time, and no further tests were done.
My first horseshoe state tournament was in 1998 over Labor Day weekend. I pitched in the morning, and I remember apologizing to the tournament director, after completing my round robin, that I was going home because I felt sick. I drove home, about a two-hour drive, and sat down and shivered the rest of the day. My wife couldnt find enough blankets to keep me warm. But I was determined to pitch again the next day, and off I went. I didnt stick around to see much of the remaining tournament, though, because I felt so sick. When I saw my doctor, he thought maybe I had a prostate infection and gave me an antibiotic.
In late fall of 1998, an unusually heavy nosebleed took me to the hospital emergency room one night. In February 1999, after a fever of 104, shaking chills and another visit to the ER and being told to see my doctor the next morning, my doctor suggested that I have an abdominal ultrasound. The technician, after just a few passes, pressed the button for a read-out and ran down the hall to see the doctor. He immediately ordered my admission to the hospital, where an abdominal CT scan was done. Two days later, surgeons removed a smooth muscle tumor the size of a cantaloupe from my abdomen. After a 10-day hospital stay, I was sent home to recover, and the pathologist described the tumor as being of uncertain malignant potential. The pathologist was convinced the tumor was benign. The surgeon was not. He sent me to a local oncologist, who said I didnt have cancer and to go home and enjoy my life and be grateful that I did not have cancer.
Scans showed everything normal for the next three years. But exactly seven years later, February 2006, I had a painful intestinal attack. A CT scan showed a mass in the liver. After a liver needle biopsy, it was discovered that I had GIST and it had metastasized in the liver. Cancer is most threatening when it metastasizes or spreads to additional locations beyond the primary tumor site. In GIST, one of the most common sites for metastasis is the liver. I had never even heard of this type cancer before and was amazed to have a metastasis when I had been told in 1999 that I did not have cancer!
As you know, GIST is not one of the common cancers. Most cancers are carcinomas arising from skin-like epithelial tissues, but GIST is a sarcoma. Sarcomas arise in the connective, or supportive, tissue (including fat, muscle, blood vessels, nerves, bone, cartilage). Sarcomas account for only about 1 percent of all adult cancers. Carcinomas are treated with chemotherapy, radiation, etc., but this treatment does not work for the sarcoma called GIST. GIST is a very unpredictable sarcoma, and its treatments are very new, and on the cutting edge of medicine. Fortunately for me, Gleevec was approved for treatment of GIST by the FDA in 2002. One doctor at a university hospital here, who is now at Dana-Farber in Boston, said that cancer treatment in 1999 was like ancient history compared to the knowledge today.
On March 1, 2006, I started taking 400 mg of Gleevec – after consulting a local oncologist and getting a second opinion from a medical oncologist at a university hospital, because local surgeons recommended immediate surgery instead.
My wife started researching GIST on the Internet and found the GIST Cancer Research Fund and Life Raft Group websites with many related links. She was the one who started educating me on the type of cancer I had. Through her research, she found a friend in Tania Stutman, who knew some of the best GIST doctors. Tania told my wife that she would assist if we ever decided to see one of them for treatment, which she encouraged us to do.
Gleevec started shrinking the liver tumor immediately from 12 cm x 12 cm in March to 4.5 x 8 in September. The university hospital oncologist then said that Gleevec had done its job and probably wouldnt shrink the tumor anymore. My case was presented to the universitys Tumor Board , which recommended surgery as my chance for a cure. The university surgeon was well trained, but had limited experience with GIST liver surgery.
After ongoing contacts with Tania, attending local Life Raft meetings and Life Fest 2006 in Dallas in September, and reading everything she could find on the Internet, my wife had a good idea of who the best and most experienced GIST oncologists and surgeons were. She decided that it was time to contact Tania. We were lucky that Tania knew Dr. Ronald DeMatteo at Memorial Sloan Kettering Cancer Center in New York, and an appointment was set up for the next day! We flew to New York, and Dr. DeMatteo worked us into his busy schedule. We knew when we met and talked with him and his team that we were at the right place. We also found out that Dr DeMatteo was the pioneer in resuming Gleevec after surgery for metastatic GIST, and that people come to him from all over the world. Surgery was scheduled for November 7, 2006.
We arrived back at MSKCC on Sunday and checked into a nearby hotel. On Monday, I started my prep. Tuesday morning at 5:30 a.m., a cab drove us to MSKCC. By 7 a.m. I kissed my wife goodbye, walked into surgery, and bounced up on the table. The operating room looked like a room you would see on TV during a space launch. Everywhere you looked, monitors for everything were staring at you from the walls. My wife had read that MSKCC opened 21 brand new operating rooms in May 2006. The nurses were preparing me for surgery. I heard one say to another, Is the doctor in the room? Then she said, OK, breathe into this. And it was lights out for me.
During surgery, my wife Diane, was in the waiting room, alone. Much to her surprise, the liaison nurse came up to her and said that Tania Stutman was there to see her! Tania stayed with Diane during the surgery, offering constant support – she even brought a bag of homemade cookies! When Diane told me about Tania being with her in the waiting room, a little tear came to my eye. It was a great deed!
Dr. DeMatteo reported to Diane and Tania that the surgery went smoother than he anticipated. My right liver lobe was removed (about 40% of the liver), along with the gall bladder, an innocent bystander that was just in the way. Dr. DeMatteo said that the left lobe was already growing and compensating for the part of the liver that was dying because of Gleevecs work on the tumor. He also said that the right lobe would grow back within a couple of weeks. He said, Livers are smart!
Of course, I had given Diane a list of my horseshoe buddies (oh, yes – and family members) to e-mail after the surgery, so that was her project for the afternoon!
After a night in Recovery, where the nursing is one-on-one, I was sent up to the 16th floor to recover. Everything was going fine. I was receiving phone calls, including almost daily ones from Tania, and was in good spirits. I kept asking Dr. DeMatteos team when I could go home. They said when all my connections (nasogastric tube, etc.) were removed. I asked, When can they be removed? On Sunday, Dr. DeMatteo said that if I insisted, he would release me. He said that I left the hospital quicker than any of his patients. I told him I had to get in shape for horseshoe pitching, and he said that I would be ready in the spring. He said I should follow up with a local surgeon to have the surgical staples removed. I knew that my surgeon from 1999 would do that. My local surgeons eyes bugged out when I pulled my shirt up. He had never seen the type of incision used by Dr. DeMatteo. He was surprised that I had no drainage tubes and said he still always uses tubes. He proceeded to take out a few staples and then said the incision looked so good already (8 days after surgery) that he could remove all of the staples. He said he had never seen someone doing so well so soon after liver resection surgery, much less having traveled from New York to Michigan.
The next week, I saw my oncologist. We told him that I was off Gleevec just one day before surgery and back on it again in 9 days. As before, I havent had any adverse reaction to Gleevec. Although I get tired pretty fast, which Dr. DeMatteo and my oncologist said is normal after this surgery, I have not had a single complication.
My next CT scan will be in mid-January 2007. When the oncologist wrote the scan order, it said, Check disease free status! It was wonderful to have the words disease free used about me. I have never been anxious about the results of previous scans. But when I get the January scan results, I will be on pins and needles. I dont want to be in the cancer club. I have six grandchildren that I would like to see grow up – and a whole lot of horseshoe pitching to do! So, I want to be in the cancer survivors club.
You can see why the GIST Cancer Research Funds wonderful work is so important to me!
Thanks to everyone who has been concerned about my health. I know all the credit for communications and my care goes to my wife. She has made many friends because of the GIST Cancer Research Fund and the Life Raft Group. She will keep everyone posted.
December 11, 2006