Well the boxing gloves came out between me and Dr. Schrier. As always before he comes to visit I meet with a fellow (medical student doctor). He quickly asked me if I had any problems and quickly stated that Dr. Schrier was aware that I hate Decadron. I told him the side effects and felt my quality of life was poor. I'm so depressed, sick, sore and really tired 5 days out of 7. I'm really starting to stress about taking Decadron for so long. I fell again last week and know that sooner than later the next time will be serious.
So he took his little notes and left us for about 20 minutes.
The door swings open and quickly Dr. Schrier says "ok, I'm increasing Cytoxan to 300mg and I'm giving you a break from Decadron every other week but you will still be on Velcade every week". Wow Mom and I just looked at each other and smiled. I was just asking for one week off Decadron (don't tell him that) but every other week is GREAT! Now next week will tell. I have never been off Decadron and still taking Velcade. So which drug causes the side effects. I really and have always thought it was the Decadron but next week will tell. I hope and pray now that it is and not the Velcade. When I had my stem cell transplant in 2009, they gave me Decadron and not Velcade and I had the same side effects. Please Please be the Decadron!!!!
Dr. Schrier is concerned about blood counts, kidney function and bladder function increasing my dosage of Cytoxan to 300mg. He is monitoring it weekly before each chemo treatment. My numbers are low 70 and he is happy about that. No new occurrence of Amyloid in the heart. This was big news to him. He was very happy about that and felt the Cytoxan is working to protect the heart. I had a multitude of tests on the heart for the last few weeks. Every thing has been perfect!! I'm so blessed to have been given this second chance at life to receive a beautiful gift like this.
Looking forward to my trip to Pittsburgh next month. A little disappointed that we can't see a hockey game but we will have so much fun. Our good friend Jeff is coming with us. He just loss his girlfriend this year and needs to have some time away. It will be so fun!
I have this beautiful quote hanging from my wall next to my bed. It is about LIFE. Smile often. Be grateful. Be the change you wish to see in the world. Try new things. Work hard. Don't count the minutes count the laughs and above all... make every moment count.
Love,
Debbie
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