Round 2

True stories are always in retrospect. Fiction you make up as you go along and bring it out any way you wish. Since these blogs are nonfiction, they develop as we go along and  grow in segments as the events  unfold.  It all started a week ago Friday. I had an appointment with Dr. Khouri and he was somewhat jovial when he came in, a big smile on his face. He said everything looks good and we can cut the steroids in half. Lynne asked about the results of the Bone Marrow Biopsy. "Oh yes, the results of the Bone Marrow  Biopsy are good. There is no cancer evident". "Do you mean it is in remission?" asks Lynne. "Yes ".  " We can use that phrase, remission"?  "Yes you can".  We were ecstatic, shaking his hand and repeatedly saying thanks and I remember telling him he was a healer. We left there on cloud nine, the one below ten and above eight.

As we are walking towards the skywalk to the parking lot we are celebrating and I said again how I wanted to do one of those ads that show actual patients saying, "MD Anderson helped make my Cancer history, Leukemia."  We had talked about it many times. Now I could.  My cancer was gone, history. And then we talked about how Josh had wanted to do that, to do one one those ads, MD Anderson helped make my cancer history, Thymic Cancer  . And he couldn't. I recall so clearly falling from cloud nine and crashing to the ground in no time flat. This was to be Josh's, not mine and it wasn't fair. I DID NOT DESERVE THIS. Those of you that have read earlier blogs know of my struggle with "survivor's guilt". This hit 10x worse than any time before because my remission was real now. I crashed.  I could not bring myself to tell Isaac, nor my brother Dirk about the news of the remission when they called. I had crashed. I also did not want Lynne to tell any one either. When I went to bed at night I dreamt I was preaching at one of the churches I had served and it was a wonderful worship service and all were celebrating. After I awoke  I started thinking and began to have very bad feelings again about the guilt and began to think there was no way I could get to celebration and all thoughts moved to guilt and Josh was the one that deserved to live, not me. If you recall I was taking Cymbalta, an antidepressant, and a side effect warning is listed as, having suicidal  thoughts or notions. So that next day I discontinued that medicine along with the sleep aid. My appetite dropped and I was listless. The next night I had another dream and again I was guest preaching at one of the churches I had pastored. During the sermon I told the story of  the cancer  and the remission and we had more cheering  arms raised in that sanctuary than at a Texans' football game in Reliant Stadium. In the morning I was nauseous and still crashed. I could celebrate in my dreams  but not during consciousness. I began to vomit two to three times a day, no appetite and really down. Finally Lynne told Isaac and we talked and I have promised to seek professional help within the next week. The other thing that was going on is the itching was getting worse along with the stomach problems. We finally got into the Clinic on Thursday. Yvonne the Physician's Assistant concluded that the reduction of the steroids last week has allowed the GraftvsHost Disease to emerge and thus the itching and the rash and the stomach problems and all was the result of the reduction of steroids at the last visit. She ordered an increase in the steroids even higher than the earlier prescription for awhile. It was amazing, the itching stopped, the vomiting stopped and at 4am I had scrambled eggs with brisket and sausage. I'm beginning to get strength back. There is a consult with psychiatry next Tuesday on the schedule. It seems this story is not finished yet but I will publish what's here. Unraveling all this has been a nightmarish challenge.

Hi Y'all

It's time isn't, for an update that is. I am beginning to make head way again. I have been gaining some weight again, up to 153. The blood counts are holding steady. The CT scan was clear. Today I have the Bone Marrow Biopsy and will get the results next week. This is the 6 month mark after the transplant. This last stay in the hospital left me feeling weak and I'm doing both occupational and physical therapy to counter that. Appetite is slow to return. I'm still working on the support. Some of this feels like after the SCT, maybe not that bad but it felt like starting over. As far as the Transplant is concerned it is still okay, it's just going to take some time. On Wed I had trouble keeping food down. Patience is what it's taking now. Each month it is a little better like watching  grass grow.