Welcome to the Order of Battle. So after reading all about my first month or so of life with cancer, you’re probably curious about what happens next…
So about my final bone marrow transplant schedule….
I got my final schedule for the transplant on Thursday. I move in to my apartment at Duke on September 24. That same day I will have my final round of tests to make sure I am fit enough for transplant. The tests consist of a heart test, lung test, endurance test, and some other things. I do not anticipate any problems there. I begin the transplant process with 4 days of chemotherapy on September 25 to kill of my immune system and bone marrow. This will be a terrible time and I am not looking forward to it. On September 30 I will get the donor marrow. I will take pictures through out the process so everyone can feel like they’re there. From September 30 on I will be in Durham for daily visits to the doctor. I am slated to go to my parent’s house in VA for the remainder of my recovery in late November or early December. When I actually leave will depend alot on how I do during the first 60 days. If there are no problems I will be released in November/December. If there are problems, it could be alot later. Your continuing support and encouragement is appreciated during this time. I will need the support of everyone more than ever during my transplant and recovery.
So I have undergone 3 treatments of chemo so far. I have tolerated chemo fairly well. The last round was July 23. It was by far the roughest round yet. I felt tired, sick, and all around worn out. More so than after previous treatments. But I am lucky. I have just one more round to go before my big hurdle. If you read Lance Armstrong’s books, or read about many cancer patients, you’ll know that chemo is often a major hurdle in recovery. For me, chemo has been the easy part. The next phase of treatment for me is a bone marrow transplant. This will take place at the Duke Adult Bone Marrow Transplant Clinic in Durham NC.
Apologies to all for dragging my feet on updating this page. In many ways it is the most important page after the MAIN PAGE. So again, sorry for being lazy.
Now for the good stuff. I felt very positive after my visit at Duke last week. We are still going to do the Allo bone marrow transplant. Since Tom is not a match, we are looking for a donor from the National Bone Marrow Registry. We discussed an approximate time line as well. The hope is to have me in to Duke to begin the bone marrow transplant in September. between now and the time I get a donor, I will continue with chemo. I will begin my short term disability in September and not work. My immune system will be destroyed in the days leading up to the transplant to allow for the new marrow to take hold. Once that is done, the donor marrow will be put in through an IV and it will go directly in to my bones through some magical process that is really scientific. From there I will serve 60 days as an outpatient. I will have to be super careful about where I go and who I see since I will have no immune system and the new marrow won’t be strong enough to do anything. It’s sort of like sending in a squad of Marines to take over Russia and run it for a year without reinforcements.
So if all goes well, I will be able to leave Duke in November. I will return to my parent’s house in VA at that time. I will still be very weak and need alot of help. I won’t be able to live on my own. I am hoping to make a steady recovery throughout the holidays and into the new year. During the entire time, I will be seen weekly by either my oncologist or at Duke. In April my disability leave will end, so it will be back to work. We will see if at that point I can go directly into the field or will need to remain in the office. My immune system should be up and running fairly well by that point and I will be through the most dangerous part of the transplant (more about that later on). I hope to begin doing Crossfitaround December or January. Exercise is an integral part of the recovery phase and I plan to use that to really get back into shape as a part of my overall recovery plan.
So, this sounds awesome huh? Well there are some risks involved. The biggest risks come in the first 6 months to year after the transplant. During the first 6 months, I will have no immune system. This is when infections, illness, and other fun things could do their most damage. I could also fall prey to Graft vs. Host disease. According to the doctor, this is often temporary but can become chronic if it is bad enough. I will be on anti-rejection medication to prevent this, but that only goes so far. There are other complications like the donor marrow attacking ym healthy tissue, the donor marrow attacking it self, and other things that I am forgetting at the moment. I want to avoid all of these things, so I won’t be very adventurous probably for the first year after the transplant.
I am excited to get started on the transplant. I’m tired of being the only 25 year old in the world who has the health of an 80 year old. It is a risky procedure but it is a risk that I am willing to take. I have a very real possibility to be a totally healthy, “normal” person for the first time since I was about 8. I would be the world’s biggest coward if I didn’t go for broke on this. If I avoid any long term complications from the transplant, I can pursue opportunities that were previously off limits to me because of my medical problems. In summary, risk of death: elevated; chance of success: high; reward: being able to do anything in the world. You’d make the same choice too.