Last Thursday, Julia and I attended a Leukemia Lymphoma Society (LLS) dinner which included two speakers. The first speaker was Dr. Rafael Fonseca, who heads up the Multiple Myeloma area at the Mayo. When I was first diagnosed, Julia contacted the Mayo and was told that we could not get in to see Dr. Fonseca very quickly which led us to Dr. Mikhael. I’m certainly not upset about the course of events as we love Dr. Mikhael, but it was interesting to hear another viewpoint.
It seems that Dr. Fonseca does not view stem cell transplantation as the cure-all. It is a tool that is available, but he is more likely to utilize other means of chemotherapy to battle the disease. This seems to be different than was our understanding and certainly different than what we have experienced ourselves. I have four other friends that have Multiple Myeloma and all four have undergone transplantation, one twice.
This just drives home the belief that there is no one way to battle this disease. It is a field that is widening rapidly as the researchers learn more about MM, but it shows that there is no one best way to attack the problem. It also drives home the fact that MM is as different as the people it attacks. Of the four people that I have close contact with, we are all different. One has had it for nearly 10 years. It took forever to diagnose it and he had to continue to bug his doctors to continue to dig until they finally discovered the problem. He has had two transplants and went into complete remission after the transplant.
The second individual did not have very good results with the early chemo but went into complete remission after the transplant, but no longer has kidney function. The third went into remission before the transplant but also has to battle Amyloidosis. The fourth also went into remission before the transplant which he received just three weeks ago.
We are all different but we are all the same. Others utilize a maintenance drug before and after transplant and I have not. It seems there are numerous answers to the problem, but none complete.
The second speaker, Jim Bond, was flown in from Ohio to talk in both Tucson and Phoenix. Jim is a miracle; he has battled MM for 19 years. His original oncologist suggested to him when the cancer was discovered that he quit work and enjoy what little time he had left. Jim and his wife disagreed and started researching the problem on their own. He decided that he wanted to live and not just fade away. Three transplants and numerous medicines later, he still survives.
Survive is probably the wrong word, Jim flourishes. For the last four years, he has participated in a four day bicycle tour that travels the 300+ miles from Cleveland to Cincinnati. Lord, I would get tired driving from Cleveland to Cincinnati and he rides a bicycle. Jim is a true survivor, one that has made sure that he isn’t voted off the island.
Read the Jim "James" Bond story of survival.
When you have an incurable cancer, it is very easy to get discouraged. It is very easy to wonder just how many more birthdays you will see. Yet, when you hear experts explain options and see a 19 year survivor ride a bike for four days it makes the journey just a bit easier. We will know in about a week if my journey has taken a detour or not. I will go in on Thursday for my follow-up blood test after the no so great blood test of last month. If I am lucky and can get someone to send me the results on Friday, I will have a better idea if my cancer GPS is pointing me in the direction or not.
The good thing is that if the results aren’t better, I know I have alternatives. But I have confidence. Just like Joe Namath guaranteed a huge upset before Super Bowl III, I told Dr. Mikhael when we last met that I would have better results. Let’s see if that winning trophy can come my way.
No comments:
Post a Comment