Waiting! I was never the kind of person who would wait around for anything! I'm really, well I don't want to use the word "excited", because how can anyone be excited about a stem cell transplant. But I am. I want to get it over and begin my "new normal life".
This past week I realized for the first time that Decadron has been making me feel sore and tired on Friday and all weekend. Last week I was not able to take Valcade on Friday because my liver tests were elevated. Dr. Akthar said no and I would have to wait until this week. I took Decadron on Wednesday and by Friday evening I could feel the soreness coming on. By Saturday I felt terrible. I couldn't even touch my skin, it hurt so bad. Of course, the doctors have never heard of such a reaction - only me. I thought all this time it was the Valcade but I didn't take it on Friday and the soreness was there. So it's the Decadron.
The best thing about the stem cell transplant is that when it is successful, I won't have to take Decadron and Valcade. I will feel much better. I have had a taste of how it will feel when I have the two week break from these drugs. I felt TERRIFIC!
That's way I don't want to wait any longer. I want to get the stem cell transplant over and begin to feel better. I will still be fragile and have to be careful not to be around anyone who is sick, eat the proper diet and exercise to build strength. The doctors say it will be another 6-9 months before I can feel close to normal.
My lambha light chain count went up again this past week from 190 to 234. What a crazy number it is? Well so is the disease! I still think I'm ok because I have been stable around the low 200(s). I will see Dr. Akthar on Thursday for a checkup and discuss this more but I know he will say let's not worry about the numbers until after the stem cell transplant.
Dr. Kevin is doing well. Please view his blog for updates at www.kevinandbarbie.com or click on the link on the right side of my blog. He is such an inspiration for me. I'm so lucky to have him as my friend and support. Say a prayer for him.
This Saturday is my Amyloidosis support meeting in Walnut Creek. I'm excited to see everyone and let them know I have decided to go forward with the stem cell transplant. Dr. Ng will be there to discuss the disease and new treatments for remission. She is very knowledgeable about this disease and worked at Boston University in the Amyloidosis clinic.
Tomorrow I will visit clients in San Francisco for our monthly media group meeting. Unfortunately, most of the radio, TV and newspaper clients have lost their jobs and our group is slowly dwindling down to nothing. What a sad situation we have gotten ourselves into.
Have a wonderful evening! Tonight is Dancing with the Stars results night. Did you see Dante without a shirt last night? Did I say that! HAHA
love,
Debbie
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