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.

Update

I was discharged on Tuesday and instructed to monitor everything closely and if fever should reappear, back to the ER. I had blood work done on Wed. and the scores were great. While in the hospital for 8 days ,I had IV antibiotics, 3 neupogen shots to stimulate the production of stem cells, and 4 IV's of immunoglobulin over 4 days to shore up the antibodies. The net result, the infection seems to be gone, and no temperature for several days. I lost upwards to 23 lbs and the appetite is still not back. They have included an antidepressant to help cope with mood and a sleep aid to get rest and physical therapy for rehab and we will seek out a support group to help me get over this. It is quite a wake up call. We will keep you posted and thanks for all the support and prayers.

Back To Good News

It is 10:30 am and the Dr. said I can go home. What a relief!

I Got Knocked Down

It seems like it should be different. It should look a whole lot rosier, but it is not. I have totally lost my appetite.  I have lost 20 pounds in the last 3 weeks.There is just no hunger. I also cannot sleep. I have used sleep aids for 3 nights now.  One night it never phased me . Last night they switched  to another brand and I did get some deep sleep for about 3 hours. I have been having headaches and at 4 this morning I had to take something for it, it was so bad. I am scheduled for my last of 4 immunoglobuulin infusions today. I have no temperature, but still have a runny nose and a cough. The neutrophil count is still low despite 3 neupogen shots. They hope it is all headed towards my system handling it with all these boosters. I got to tell you it doesn't feel that way. The doctors have assured me the stem cell transplant is doing well. So why am I so down? I should be celebrating new life. As I thought about  all of this the other day I began to think of Josh. Remember his line?

I get knocked down, but I get up again
You're never gonna keep me down

 It was his mantra. The gift of life should have been his and not mine. I thought I had cone to terms with this survivors guilt, and yet it all seems to fit that I don't deserve this chance. And it all gets pretty raw. Rationally I know I do not need to feel this way. I also am not a totally rational being and it is amazing how deep the feelings and emotions can control behavior. Weight lose, appetite lose, insomnia, an infection, despondence ,severe headaches - it's time to get some emotional support. Isaac has been pushing for that for some time and Lynne agrees  that I get some help in this area. If I were to look at myself as though it were a case study, it's a no-brainer. I tend to want to handle it myself. So Josh's mantra has a lot to commend itself to me, to get up, to keep going .

This blog has been several days in the making. I came into the hospital on Aug. 21st. Today is the 28th. Maybe today. Maybe tomorrow. It has been a long haul.  "It's time to get up again". Lynne has spent her birthday here at MD Anderson the last 3 years, once with Josh and  now 2 years with me. It's time to change this.

Bad News - Good News - Bad News

In the last blog I wrote that was struggling to fight off this cold or flu. Well, Tuesday the temp began to go up and about noon and one o'clock it hit the 100.5. So I called Isaac and I started packing. I am again a patient at MD Anderson. The lungs are clear. Tests have been taken. Blood samples drawn and the neutrophil count is extremely low, they are those first responders in there to defend when an infection sets in. There is not enough of 'em, just not enough. So here I am in the hospital, IV pole is crowded, and "Mash" is on TV.
I had so hoped for better. Maybe this will be the last time.

Bad News - Good News

It's the bad news - good news story. Let me explain.
It started about 10 days ago, a little sniffle, a slight runny nose, nothing more, no elevated temps, probably allergies, take some Claritin. It didn't help and persisted for 4 to 5 days and I had an appointment so they ran all the tests and put me on Tamaflu and Levaquin and see you in a week. After that I had some reactions to the Levaquin and got that settled. Then I began to have some temperature rises. The last thing Dr. Khouri said to me in the office was, "If you get a temp. Go to the ER"! For me that is 100.5. I am still immune suppressed and it is always a question of "How much can I handle?" For the last 6 days I have been taking my temp frequently, watching it go up and down. I has been at 100 on at least 2 occasions. Yesterday it was 98.7, last night 99 and this morning back to 98.6. Isaac has been listening to the lungs and they have stayed clear. Pneumonia is one of my biggest threats. Isaac put it into perspective. "Any other time you would have been in the hospital and this is a big step that you have held your own." I DO SO NOT WANT TO GO TO THE HOSPITAL I have another appointment tomorrow and will get an infusion of Pentamidine to prevent pneumonia. Sometimes I have forgotten how vulnerable I am because I have done so well. This is a reality check and with flu season coming I have had to renew my diligence to caution and not become careless. In Sept. I will have the 6 month post transplant tests and should reveal how the transplant is functioning and being able to produce the cells to fight infections and all the assaults to which we are all subject. You have an immune system, mine is still compromised and getting stronger. To have handled this seems to indicate it is getting stronger. I guess since the temps have gone down I am starting to exhale and celebrating Isaac's assessment that it is all working like it was planned. The bad news - I am sick. The good news - I'm handling it so far.