Well, another notch in the belt. Another Doctor visit behind us. These visits always leave me thinking that I really just don't know how to feel. Mac's regular oncologist is Dr. Hiatt. Dr. Hiatt used to be so good at giving us the big picture. He would tell us how the disease was working and what they were trying to accomplish, goals for each step of the process. He would tell me what to watch for. If this happens or if that happens or most importantly, if you have questions, call. We had been told that if all went well, they (Iowa City) would turn Mac back over to Dr. Hiatt two months after transplant. Transplant was last July 31.
He had a very good visit yesterday with Dr. Silverman, who we are fond of, and he is to go back in four weeks. I try to get additional information. While I know that Dr. Silverman is very smart, she doesn't give me the information that I crave. I always leave Iowa City not knowing if the ground I am standing on is solid or not.
Mac has GVH. GVH stands for graft versus host. The graft is the stem cells from bone marrow from the donor. These stem cells basically create a new immune system that attacks the cancer cells. In this case it is the leukemia cells. But since these cells don't know that they are no longer in their original body, they can perceive the whole body as a "foreigner" and attack it. The goal is to have a little GVH so you know that these new cells are also going after the cancer. You know it's working. You do not want so much that it is going after an organ, organs or the whole body. Most people get a patch of GVH on their skin. In Mac's case it is inside of his mouth. It seems to be limited to that location right now. We're okay with this because we have been told that a little GVH is a good thing. So, yesterday, when I asked how is this shaping up? Is he ready to start having his visits moved out further? Is there a timeframe for moving him back to his regular oncologist? Then we are told,"He has GVH. This is serious." WHY!!? Why am I not getting the same message each time we see a doctor? Why do I keep getting cryptic bits of information? Why is it that what I am told one day isn't the same information that I get on another? What is worse... how do I take care of my husband when I'm not being given the information to adequately evaluate what is happening with him? When do I need to call the doctor? When do I pack him up and take him to the emergency room?
I feel adrift. I hope I know enough. When Mac left the Dr. office yesterday, both the Physician's assistant and Dr. Silverman said he looked great. They wished all of their patients looked as good as he does. This information didn't cheer us up at all. After all, it is a stark contrast to "He has GVH. This is serious." Now I don't know if a little GVH is a good thing.
For four weeks at a time his life and well-being are my responsibility. I miss Dr. Hiatt. I miss Bridget, his nurse...Bridget, the wonder nurse. I hope that what I do to take care of him tomorrow, and the next day, and the next day, are the right things to do. I hope things get better. I hope..... I hope.... I don't know, I think I want a "do-over".