This CMV will not go away

My CMV level has been low positive for the past three weeks. That might explain some the diarrhea issues that I have been having. They are going to put me back on the Ganciclovir for at least two weeks. The good thing is that I can do it myself at home. The bad thing is the cost - my insurance only pays 80 percent and the drug is expensive and the drug is rough on my blood counts (as will be the Gemzar).

My adrenal glands are not working

The test results came back today and my Adrenal glands are not working. This does explain the fatigue - or some of the fatigue that I am having. They have put me on Hydrocortisone. This isn't a high dose so I shouldn't have any bad side effects. Unfortunately there is no was to know how long I will have to be on this and if my Adrenal lands will start working again. It was due to the Prednisone that they stopped working.

Started Gemzar today

I started chemo again. We are trying Gemzar alone. It is possible that now that I have have the transplant my cancer may respond to this drug. In 2006 I took Gemzar with Navelbine. It was tough on my blood counts and took me 6 month to get through 4 cycles. It was right after this that I had a routine scan and my lung mets were found - so we don't think it worked the first time. We will try two cycles and re scan to see if it did anything. The people at NIH/NCI have seen some positive response with this drug post transplant.

slight fever today

I had a slight fever today 101 - 102. I called the doctor this morning, but it took several hours (and an email to my doc) to get a response. I have a very mild headache. I had a little bit of diarrhea early this morning. I went in for my CT scan at 1:30pm at the specialty center in St. Paul. They were then able to get me in to see a doc in St. Paul. My fever was gone by the time that I got there (3pm). They looked me over and sent me home. All these medical appointments are getting annoying.

Back home again

I got home Thursday night. I don't have to go back out there until the last week in January. We are going to try to get all of my labs and one CT scan done from here before then. There is a question about how accurate the lab here is in testing the drug levels in my blood and my CMV levels so we are going to have both labs do them for a couple of weeks and see if they are the same.
I am feeling much better. I am done with the antibiotics and should be off the antiviral in the a couple of days. I met with the Rehabilitation doc and physical therapist at NIH. It turns out that the muscle weakness that I am having is actually in my hips - especially the left side. I guess the Prednisone can really affect your shoulders and hips. The gave me some exercises to do and some energy conservation tips. One of the recommendations is to lay down for an hour each day to rest (Margaret - is my bed ready? I think it will fit in my office) The transplant team is excited that I'm going back to work on Monday. They think the sooner the better even though I will probably get some kind of crud at work. Flu season doesn't peak until Feb or March, so maybe I will be ok for awhile. It's kind of frustrating that I can't have any immunizations. The live vaccines would be harmful and the other vaccines would be ineffective.
It looks like I will probably start some chemo when I go back in January. I should be off the steroids or close by then. They have used some specific chemos on transplant patients that have had the result of jump starting the immune system to fight the tumor.The chemo itself can also be good. Since I have been on the steroids I am not getting a very good response. The other option is to have some Donor Lymphocyte infusions (these were taken with my brother's original donation). The risk is that it could cause GVHD (the skin and gut stuff that I have finally recovered from). We will make a decision after my next CT scan in early January. I better enjoy the little hair that I have while I can.

Testing at NIH

I had a full day of testing on Monday. Early this morning they called to tell me that my doctor would be out sick and I could have the day off. I will be seeing the doctor tomorrow after my bone marrow biopsy (looking forward to that). I was able to talk to the infectious disease doc on Monday. He looked at my CT scan and said that based on how the pneumonia is healing it was bacterial. That is good news because the antibiotics are working and we don't want a viral pneumonia. I am feeling a lot better due to the antibiotics and my CMV level has also dropped enough for my drug dosage to be cut in half.
The trip out here was exhausting. Dulles is a huge airport. By the time I made it to the baggage claim (I took a couple of breaks) everyone was gone and just my suitcase was on the turnstyle. Somedays I feel like an old lady.

Lounging at home

I have been spending the week at home napping and watching TV. I feel pretty good as long as I am sitting still. I get really tired when I go out or do a lot of walking. I'm still trying to recover from all the muscle weakness in my legs caused by the steroids. I am not having any symptoms from the pneumonia so that is probably getting better. It sounds like they caught it early.
I am going back to Bethesda on Sunday. I am flying out alone and renting a car. I really hope I have more energy by then. I should be back on Thursday. I am planning on going back to work on Monday the 17th. Now that I have a return date, I can think of a million things I need to do there. I am going to try to work only part time for at least a couple of weeks.