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Fourth Anniversary
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Today is the fourth anniversary of the day my brother, Gary Stout, died of pancreatic cancer at the age of 55. He fought for 13 1/2 months after he was diagnosed on his 54th birthday in April 1996. His surgeon was trained at Johns Hopkins and thought he could successfully remove my brother's tumor. However, as we find so often with this disease, the tumor had already invaded the portal vein and surgery was deemed not to be an option.
He was a big guy--about 6'4"--and you would think he was sturdy enough to handle chemo, but in fact he had a very low tolerance for chemicals. He tried 5-fu via a continuous infusion pump, plus radiation, and had to stop both the radiation and the chemo early because he just felt so bad all the time. He only used the pump from Monday-Friday morning so he could build back up again for the next week, but even that didn't give him the break he needed to finish the treatment.
After the treatment stopped, they did another ERCP. The doctor was surprised and happy to find pink tissue in the stomach, where before they had seen the tumor pressing up against it. We rejoiced for him, but our celebration was short-lived.
A few weeks after his diagnosis, Gemzar was approved for use with pancreatic cancer patients. Only about a month after treatment stopped, his pain started to get worse. His oncologist tried Gemzar. As with 5-fu, the full dose of Gemzar knocked him out of commission. After some experimentation and discussions with the doctor, they settled on a treatment of about 2/3 of a normal dosage of Gemzar. This gave him about the best combination of relief from symptoms and quality of life.
In the early part of 1997, my brother wanted badly to participate in teaching some seminars about economic development to government officials in Europe. When both his wife and I asked him about the advisability of doing this, he responded, "If you can't do what you enjoy in this life, then what is the purpose of living?" He stopped his Gemzar in order to go, and did not receive any treatment for about 5 weeks. He read several books and rested as much as possible in between chemo sessions.
When he got back home and resumed treatment, even the reduced dose of Gemzar knocked his blood counts too low. Gemzar was stopped.
We had been looking around for some alternatives, and found hope in an experimental oral drug called 9-NC being offered at the Stehlin Clinic in Houston. That drug was subsequently renamed RFS-2000 and is now known as Rubitecin. We had some fears that he wouldn't be admitted into the clinical trials because he'd had bypass surgery. We knew others had been rejected for that reason because the doctors thought the surgery interfered with the ability of 9-NC to work at maximum effectiveness. My brother went anyway and presented himself as a "willing victim". Although the doctor hesitated, he finally allowed my brother in the trial. As luck would have it, he was given the highest dose of the drug. It wasn't long before he started having fevers and some pain. When I encouraged him to talk to the doctors at Stehlin about reducing his dosage, he said he wanted to hold off as long as possible in order to give himself the best chance at fighting back the cancer. About a week later, the doctors had reduced his dosage not once, but twice in the same week.
After being on the drug for a few more weeks, in May 1997, my brother began bleeding from his bowels. He could have bled to death right then, but we were lucky. We got him back. Because this was a known possible side-effect of 9-NC, it was stopped. At the end of May, I got the call that I needed to come out to Minnesota. I spent the last week of his life with him, trying to help him get his estate plan finished and implemented, taking care of loose ends, helping give his amazing wife a respite from time to time, and just being there.
One week before he died, he learned that a small pond in the business development he'd been working on as a consultant for the City of Anoka was going to be dedicated to him. The city erected a plaque at Stout Pond explaining the remarkable accomplishments that had been made for their city in just a few years.
My brother wanted desperately to live long enough to attend his youngest daughter's wedding on June 20. He went into a coma on the afternoon of June 6 in an ambulance on his way to the hospital for a procedure to drain fluid that had accumulated in his abdomen. His wife, oldest daughter, and I were with him that night after he came back home. He died at home on the morning of June 7.
A few minutes after he died, I called his youngest daughter and told him that her dad was gone. She said she wasn't surprised, and told me that she'd just gone in to wake up her daughter, who at that time was not quite 2 years old. As she walked in the room, the little toddler told her, ""Grandpa go bye-bye."
I miss his incredible hugs. Because he was so tall, his arms didn't just hug you, they enfolded you. What a warm and comforting place that was, wrapped next to his heart.
I miss his incredible laugh, with its melodic bass sound. With his great sense of humor, we heard that laugh often. Rarely did too many moments pass before humor got injected into the conversation.
I miss his incredible wisdom. He had a remarkable ability to guide a discussion between two people, lead them to the same conclusion, and have each of them think it was their own idea! He was my sounding board.
I know that each of you have your own memories of your families and their struggles with this disease. For those of you who are battling the disease today, you have my utmost respect and support. I am heartened by the fact that, although we are still losing too many of our loved ones to this horrible disease, we WILL keep fighting until we prevail. In the meantime, as one of the former listmembers who succumbed to this disease used to say, "Keep kicking the beast!"
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