The chicken Hawk and I made the long trek back to Palo Alto and the Stanford Cancer Center to do the final checkup before we do the last step in the process that I have been working on all summer: the actual transplant. Thus far the process has been much harder on me than it is on most people. I have ended up in the hospital and feeling really sick for the two rounds of apherisis (removing the stem cells that they will put back into me next week.) Most people do all of that as out patients but I have not responded as well.
However, on this last cycle we have figured out why that is. My kidneys are much more damaged than most people. That causes me to have sever electrolyte shortages. The symptoms of these electrolyte shortages look a lot like a violent reaction to chemotherapy; extended nausea, diarrhea and general sickness. This imbalance is called Fanconi Syndrome. Since the last time I was in the hospital we have learned how to control the symptoms of the fanconi syndrome really well with me taking about 70 electrolyte tablets a day. As a result I have been feeling better and better since the last time I was in the hospital.
So we went to Stanford, I did a series of blood tests, a chest X-Ray, and an EKG. All of those as well as several test that Stanford asked me to get through Kaiser including a 24 hour urine test and yet another Bone Marrow biopsy (I hate those) show that my Fanconi Syndrome has improved and that I am doing better.
After doing all the tests we met with Dr. Miklos, my BMT doctor. Both the chickenhawk and I were expecting a surprise from him, he always seems to have a surprise for us, this time he didn't disappoint. He told me that based on my tests, I still qualified for the procedure, however, he wanted to inform me that he was very concerned that it was going to be particularly hard on me with increased danger to my recovery. His opinion was based on my performance thus far. He reminded me that I do not have to continue with the treatment, but...
BUT now that I have developed a blood clot in my leg, I am no longer eligible for the most popular other medicines that they would treat me with. There is basically only one medicine left that I can take that is safe for people with clots. Furthermore, when I start the BMT I will have to go off of the anti clotting medicine that I'm on now, so I have an increased risk of a pulmonary embolism (very bad).
I am faced with the choices of going through with the transplant or waiting indefinitely while trying that one med (over the course of many months). There is a chance that that med would work and put my cancer into some sort of remission. There is also a chance that during that period of time I will get sicker, ie: fanconi gets out of control, I get another blood clot or the cancer progress so much that I no longer qualify for the a transplant. The transplant on the other hand is going to be really, really hard. Potentially life threatening. I really don't think that the doc would allow me to go forward if there was a good chance that transplant was going to kill me.
I feel like I am on a difficult Class V river run and am scouting a big, bad rapid. I can get out of my boat and walk around the rapid, or I can run the rapid and face the dangers that are there. It feels that if I choose to walk (wait, take the meds and do the transplant later) that I am wasting time. I have been sick for a long time and am really tired of it. I want to take the quickest path to good health that I can. I want to move on and find out what is on the other side of this transplant process. That means that my choices is to run the rapid. To go in and do the transplant on Friday. It will probably be hard, I will be really nauseous again. I will loose all of the 20 pounds that I've put back on the the last 20 days. I'll feel terrible. I'll loose all the hair that I have grown back. I will have excruciating mouth sores. I'll be exhausted. I'll be stuck in the hospital for about a month (maybe longer). But that is what I am going to do.
I will not feel like writing blog posts for a while when I am recovering so all the news will come from Sarah and our LotsaHelpingHands, Loco Care website. I am intentionally keeping that private, so if you know us and want to be in the loop just call or email Sarah and she will tell you how to sign up for that if you haven't already. If you don't know us personally, just know, I'll be back and writing a post as soon as I am able.
Thanks to everyone for your support and good wishes. It means a ton to me. I will be reading the comments below so keep me posted about the cool stuff that is happening in your life.
Thanks for reading.