Decadron Has Kicked In

Well its 2:00AM and I'm up. I took my weekly dose of Decadron yesterday and it has kicked in. Every week it is a different side effect. This week it seems, I'm wired. I can't sleep and decided to get up and post on my blog. I wrote two emails to friends already and will read the newspaper and do some paperwork.


I think I have some things on my mind that have kept me awake also. I keep thinking about my first infusion of the chemo drug, Valcade. The thought of a poisonous drug going into my blood stream gives me an awful feeling. I hope I won't be too emotional on Friday. Mom is concerned and decided to be with me that day. Mark will be in Toronto with Max or else he wanted to be there. I'm trying to be the big girl and not worry everyone, but my feelings (and the look on my face) cannot be hidden. My family and close friends, Gary and Debbie, know when I'm not myself and something is bothering me. I know in my shared heart that this is good and that the two drugs together will put my disease in remission and I can be healthy again. I'm still waiting to hear about my Amyloidosis Kappa and Lamba light chain count. The lab results still have not come in from Kaiser. I hope they are here soon because I have an appointment on Tuesday with Dr. Shriver at Stanford and he needs those results. I'm hoping they will be down to under 100 but don't want to get my hopes up. The last test was 206 on 11-14-08. I have been on Decadron for 2 months now and hope it has done something. In the mean time I wait.


Tippi is spending the weekend with me and I'm so excited. The world better look out for the "million dollar girls". We call ourselves that because between the stays in the hospital, heart transplant, drugs, labs, doctor visits etc., the cost of our care at this moment is over one million. My heart meds can be $3,000 per month, Decadron $6,000 and Valcade, they have told me is $12,000 per month. That is insane! Thank God for insurance. That reminds me everyone
should look at their insurance coverage and be sure you have appropriate coverage. I did not have prescription drug coverage, until my social worker, Janet Stevenson review my coverage. I almost had a heart attack before my heart transplant. I immediately changed my coverage to include drug coverage but have to pay more money up front each year ($3,000) before the coverage kicks in. As you can see by the cost of the monthly drugs that won't take too long to meet the deductible of $3,000 per calendar year. So please check your coverage. I never thought I would be sick and need insurance coverage.


Tippi gave me a beautiful poem to our donor family. I want to publish that on my blog but have asked the family for some more pictures of Jazmin with her sisters (there are a total of 5 girls), Mom and friends. I want to be sure my family and friends keep them in their prayers each day. Jazmin is such an important part of my life now and seeing her and her family makes me happy. I wish I could have heard her voice. But for now I have her family and friends who help me know Jazmin. Sonia, Jazmin's fiance Marco's sister will be coming to visit for the first time on the 24th. She was very close to Jazmin and I'm looking forward to meeting her. She will be married in August and sadly Jazmin was a bridesmaid. Sonia is sad that she will not be there physically but has asked me to be there. I feel this is an honor and I will honor her wish. I told her Jazmin will not be there physically but in spirit. Her heart will be there to feel the joy and happiness of the day. I promised her that. I hope each day, that meeting me and the things I put on my blog to honor Jazmin, brings comfort to the family and friends. I never want to hurt them in anyway. So look for my pictures of Jazmin and her family and the beautiful poem.


I have a link to Dr. Kevin Anderson's blog and alot of you have heard me talk about him. He is a doctor with the same disease Amyloidosis. He received a heart transplant on 8-15-08 and is currently receiving treatment for Amyloidosis ahead of me. So Dr. Kevin is very important in my life. He was there through the gruelling 3 months before Stanford said "yes" to put me on the transplant list and I will never forget the support he gave me. Look at his blog, http://www.kevinandbarbie.com/. He went to Tahoe with his family and the pictures are breath taking. That is what I have been talking about. There is a picture of him on a snow mobile and my first look at the picture was, "He is living his life and that is what a heart transplant
gives us - LIFE". When I speak of making memories that take your breath away,
that is what I'm talking about. Please take a look at his blog. It will take your breath
away! What memory are you going to make today that takes your breath away? I have been thinking about that alot lately!


Well its 3:09Am and I'm still awake, so what to do now. I'll read the yesterday's newspaper and do some paper work. I don't think I can go back to sleep yet. Have a wonderful day and enjoy this moment in time. Sorry for the lenghty post and the extra spaces above(sometimes this blog goes crazy) but the drug kicked in and the thoughts are just flowing out.

Love,
Debbie