Yes its 2:30Am and I'm still up. Started chemo drug Decadron yesterday and this is what it does. I'm wired and having some leg pains that kept me up. Just took Tylenol hoping that will help with the pain so I can sleep. No luck!
Today I have an appointment with my Santa Rosa oncologist, Dr. Akthar at 10:00Am. Mom and Debbie will be coming. We got bad news yesterday. My lambha light chain count went up from 155 to 311. That is a big jump. I emailed Dr. Dana, heart doctor. She is concerned next week with the biopsy and thinking maybe I will have a heart rejection. Not because of the light chains but the pneumonia I had two weeks ago. We will see. They will treat the rejection with Presdiosone 100mg and possibly IV infusions too. She also stressed I needed to plan for the stem cell transplant due to the numbers not being stable. I meet on Monday with the Stanford Bone Marrow Transplant team and I'm sure they will discuss dates. I want to wait until Dr. Kevin is completed with his stem cell transplant. He will begin harvesting stem cells next week and his stem cell transplant is scheduled for March 14th. So hopefully I can wait until April or May for mine. In the meantime, I will continue with the chemo treatments of Decadron and Valcade. I had a two week break from them and hopefully that didn't cause the increase but I will discuss with Dr. Akthar today and Dr. Schrier Stanford on Tuesday. It is what it is and there's nothing I can do but considered moving on with the stem cell transplant. Even that doesn't have any guarantees. I could still not reach complete response and have to consider another stem cell transplant or stay on chemo. The drug Decadron is very bad for me. I can't stay on it for my whole life. It was described to me as "it burns your bones". So I don't want to be face with hip replacements, bone fractures etc. So hopefully something will work so I can get off this drug soon. Honestly what scares me is being sick, bleeding from everywhere, nausea, hair loss, pain etc. I know it is only for a few weeks but it is nasty! I feel so good now and think why put myself though it but realize I have to do something to put this disease into complete response. There is no cure but only stop the factory from making Amyloid. Friday I will do chemo Velcade and hopefully next week the numbers will come down again or stay the same.
Please pray for me. I really need your prayers now!
Now more that any time I want to go out and do the things I haven't seen or done. I plan to go to Los Angeles next month to use my two nights free at the Montage in Beverly Hills. Gary and Debbie will come too. Gary will drive since I can't fly yet. It will be fun and relaxing! I then want to plan a trip to Carmel and Monterey in April. I haven't been there for years.
Update on Maxwell too. He has been asked by the Tampa Bay Lighting, an NHL hockey team in Florida to attend an NHL Scounting camp in May in Boston. Also, a scounting team is interviewing him on Tuesday in Innisfil. Maxwell is #3 in total points for his league and #1 for total assits. He is doing so great with hockey. Most of the kids in the league are at least two years older than Maxwell. We are so very proud of him. I'm kinda sad that he won't be coming home in April but will have to wait until after the camp. This is ok because its what we have been working so hard for. I mean Maxwell has worked so hard. He is maintaining a 3.5 grade point average in school and will graduate this June. Keep up the good work, Max. Love you.
Don't wait to make those memories that take your breath away. These are the years to do it. You don't know what life brings you each day. Make it worthwhile.
Love,
Debbie
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