Wednesday, February 20, 2008
Life is Good
I'd like to start off by asking all of you to say a prayer for my little friend, Dale Inouye. He relapsed and got a boost (DLI) from his donor, which is his brother Derek. He's recently been hospitalized. Please view his blog by clicking on his name on the sidebar.
I visited the City of Hope Hospital on Tuesday. As usual, I started off with labwork, then I went to the Pulmonary/Respiratory Center for my monthly inhalation treatment of albuterol followed by Pantamadine. Finally, I saw my doctor. The labwork was back and I'm happy to say there were no signficant changes in my counts (slight drop in platelets)
WBC 3.4 (norm 4.0-11.0)
RBC 3.82 (norm 3.8 - 5.2)
HGB 12.3 (norm 11.5 -15.5)
PLT 84 (norm 150-350)
Two months ago, he allowed me to decrease my anti-rejection medication (prograf) by .5mg. I requested that we try this because I was having terrible joint pain and could no longer raise my arms above my head. He said the arthritis could be caused by the Prograf, but decreasing this prescription could cause more GVHD or rejection. He was right. The pain in my joints subsided by about 50% in my arms (but had no impact on my knee pain), however I have more GVHD on the skin on my face. So, which is the lesser of the evils??? hmmm.... I guess I'd rather not be in a lot of pain. The skin on my face is super dry and scaly in many areas, but I'm in the process of trying new steroid creams and new moisturizers. This type of GVHD is really minimal compared to other types of GVHD which can affect the liver, kidneys and digestive tract, to name a few.
So, I guess what I'm saying is that I am lucky and blessed to have faired so well following such a serious cancer and bone marrow transplant. It's been a long haul but very well worth it. I feel great and for the most part, I'm living a normal life. The only things that are different are that I'm still taking a lot of pills each day (not a big deal), I can't have any sun exposure because it causes rejection (not a big deal), I can't drink (much) alcohol (not a big deal), I have to stay away from sick people and places that have germs/fungus' like nail salons, (not a big deal ) and I can't eat sashimi/raw sushi (not a big deal). The list of things that I can do is almost limitless...
I'll still continue to get my monthly Albuterol/Pantamadine respiratory treatments, but I won't see my doctor or get blood counts until May 4th. This is amazing! This next appointment will be just a few weeks short of being TWO YEARS Post-Transplant. At that time, he'll do my two year bone marrow biopsy, give me the rest of my immunizations, and sometime just before that I'll have another ultrasound of my thyroid as they are monitoring something, which I think is probably nothing. That's the schedule for now.
My donor saved my life. All of your support has made a huge difference. Thank you so much for being on this wild ride with me. Life is good!
Love, Nancy
I visited the City of Hope Hospital on Tuesday. As usual, I started off with labwork, then I went to the Pulmonary/Respiratory Center for my monthly inhalation treatment of albuterol followed by Pantamadine. Finally, I saw my doctor. The labwork was back and I'm happy to say there were no signficant changes in my counts (slight drop in platelets)
WBC 3.4 (norm 4.0-11.0)
RBC 3.82 (norm 3.8 - 5.2)
HGB 12.3 (norm 11.5 -15.5)
PLT 84 (norm 150-350)
Two months ago, he allowed me to decrease my anti-rejection medication (prograf) by .5mg. I requested that we try this because I was having terrible joint pain and could no longer raise my arms above my head. He said the arthritis could be caused by the Prograf, but decreasing this prescription could cause more GVHD or rejection. He was right. The pain in my joints subsided by about 50% in my arms (but had no impact on my knee pain), however I have more GVHD on the skin on my face. So, which is the lesser of the evils??? hmmm.... I guess I'd rather not be in a lot of pain. The skin on my face is super dry and scaly in many areas, but I'm in the process of trying new steroid creams and new moisturizers. This type of GVHD is really minimal compared to other types of GVHD which can affect the liver, kidneys and digestive tract, to name a few.
So, I guess what I'm saying is that I am lucky and blessed to have faired so well following such a serious cancer and bone marrow transplant. It's been a long haul but very well worth it. I feel great and for the most part, I'm living a normal life. The only things that are different are that I'm still taking a lot of pills each day (not a big deal), I can't have any sun exposure because it causes rejection (not a big deal), I can't drink (much) alcohol (not a big deal), I have to stay away from sick people and places that have germs/fungus' like nail salons, (not a big deal ) and I can't eat sashimi/raw sushi (not a big deal). The list of things that I can do is almost limitless...
I'll still continue to get my monthly Albuterol/Pantamadine respiratory treatments, but I won't see my doctor or get blood counts until May 4th. This is amazing! This next appointment will be just a few weeks short of being TWO YEARS Post-Transplant. At that time, he'll do my two year bone marrow biopsy, give me the rest of my immunizations, and sometime just before that I'll have another ultrasound of my thyroid as they are monitoring something, which I think is probably nothing. That's the schedule for now.
My donor saved my life. All of your support has made a huge difference. Thank you so much for being on this wild ride with me. Life is good!
Love, Nancy
