This Machine Killed Cancer |
| Shayne Miel's magical journey through cancer. Includes commentary by his wife Rebekah. Download the Friends of FKON CD Donate to medical and moving expenses. Purchase "This Album Kills Cancer" |
We landed safely back in NC this evening and returned to a clean apartment (thanks Deb!). It was great to spend some time in San Fransisco, visiting with family and friends as we pondered the chemotherapy vs. radiation decision. In reality, the decision was made as soon as Dr. Rubenstein told us that he recommended strongly against radiation. When a brain specialist tells you not to stick your head in the microwave, you should probably listen. I spoke with Dr. Richards (our primary oncologist at UNC) and she said that she supported the decision whole-heartedly and was eager to begin the new course of treatment. We were very lucky to get to see Dr. Rubenstein when we did. His protocol will become the new standard for treating lymphomas that have relapsed in the brain soon, but the studies have just recently been completed and the updates have not taken effect across the country yet. I guess that’s why you go see a specialist. So, beginning sometime next week, I will go in for another round of the Methotrexate that I have been receiving all summer and then a week or two after that, I will go in for the more intense chemotherapy regimen. I will be in the hospital for about three weeks afterwards to recover. Then there will probably be some sort of break (perhaps a month or so) before I go back in for the bone marrow transplant. Somewhere in there we will also have to finish the radiation on my chest that began last spring. While there are possible complications associated with getting radiation to the chest, including heart and lung disease as I get older, they are minuscule compared to the dangers of radiation to the brain - dementia, memory loss, etc. In Rebekah’s last post, she mentioned that the intense chemotherapy carries a 5% mortality rate as one of its dangers. That made me realize that we haven’t talked a lot about the numbers that the doctors have been quoting us all along. I think that is partially because they are scary and we don’t like to think about them and partially because it is hard to tell how much they apply to my situation. Statistics are taken over a large sample of people. Some of those people were not as healthy as me or as young as me when their cancer began. Some of them don’t have the incredible support network I have. Some of them don’t tolerate chemo as well as I do. And then some of them have advantages that I don’t have. What I’m saying is that it’s hard to tell where I fall in the sample set. I don’t want these statistics to bum you out or scare you in any way, but I wanted to share some of these numbers with you so that you can understand the issues that we’ve been struggling with and will continue to struggle with in the coming months. - As mentioned above, the chemotherapy that I will be undergoing in lieu of radiation carries a 5% mortality rate. So does the bone marrow transplant that will follow. - On the other hand, we recently read that of the people who were treated for brain lymphoma with radiation and survived, more than 50% became brain damaged. - When I was first diagnosed with primary mediastinal large B-cell lymphoma, I was told that the survival rate was 60% - although the advanced nature of my disease lessened that number somewhat. - The recurrence of that lymphoma in my brain has lowered the survival rate to only 30%. As I said, it is hard to know where I fit into those statistical sets. There are always outliers, people who don’t fit into the graph that our scientists predict. I plan to be one of those people. I had a friend tell me once that everything in life is 50/50. Either it does happen or it doesn’t. No matter how hard I tried to convince him of the fallacy in his logical reasoning, he maintained his position that everything was 50/50. I’m beginning to think that he may have been right. I believe with all my heart that I am going to live to be a crotchety old man who embarrasses his children, spoils his grandkids, and still holds hands with his wife. Because I believe that, it will be so - no matter what the numbers say.