WHAT'S BEEN GOING ON

Not much has been going on this week. Just trying to rest. On Sunday and Monday I felt some weird feelings in my legs and arms from the Decadron. Oh its on the list of side effects along with weight gain, mood swings, hair growth, soreness, swollen joints, headaches etc. I have them all! I spoke with Dr. Dana's nurse coordinator Sue yesterday and Dr. Dana has decided to wait until my next heart biopsy on December 23rd before starting the second chemo drug Valcade. I agree. I want my new shared heart to recover and that will be approximately 13 weeks out from transplant. Originally they said I would not start chemo for 3 months, so this will be perfect. I'm feeling great as for the heart. The side effects I'm feeling are from the drug Decadron (steroid). It is a terrible drug with so many side effects (as I listed above). I rode my stationary bike yesterday 45 minutes and did ball squats for 2 minutes. I'm hoping to increase the bike to 1 hour a day and the ball squats to 4 minutes. I felt great after exercising except I had a bad headache all day. Today it seems fine but I have been up since 3:30AM. The Decadron also wires you up - so not much sleep for the first few days after taking it.

Tonight I am having dinner with Gary, Debbie and Kathy Conley from Youngs Market. She is flying here from Los Angeles to visit me. We will have dinner at John Ash & Company. I called and asked Chef Tom to fix a special dinner for me (no salt) and also to be sitted away from the main dining room so I don't have to wear my mask all night through dinner. It will be the first time out for dinner. I will take pictures tonight and tomorrow at Tommy Toys in San Francisco. I am really looking forward to seeing all my clients tomorrow. It is a special day for them to acknowledge their continued business with Creditor's Trade Association and I do appreciate their business. Although it will be a long day, I am excited!

I also have something to share with everyone. My sister Kathy, as many of you have suggested I do, looked up on the Internet and found information about my donor and her family. I have known about them for weeks but felt out of respect and to be sure of the information I would wait until they contacted me. I did receive a call from the Donor Center who said someone from the family did call and received my letter but that they understandably are in deep mourning at this time but will contact me at a later time. I respect their wishes and it made me feel good to know they accepted my letter and know my feelings of gratitude. Since then Kathy has communicated with a friend of my donor. My donor's name is Jazmin. She is a beautiful 18 year. I have pictures of her and hope someday with the family's approval I would love to share her with all my friends and family. At this time, I want to respect their wishes and give them time to grieve. I promise I will honor Jazmin on this blog when the time is right. For now, please pray for my donor family and ask God to give them his blessings.

I don't have much going on except caring for myself and my new shared heart. I have a Heart Transplant Support Group Meeting in Santa Clara on December 9th. Gary, Debbie, Mom and I will be going. It is a BIG party celebrating everyone who has received a heart transplant and there will be about 250 people. They will present everyone by the number of days and years out from transplant to the group. So I will stand up when 11 weeks is called out. I will be able to see Kevin, Tippi, Phil, John, and all my other transplant friends who have helped me get through these last 4 months. It has been the most wonderful moments in time.

Have a wonderful day and enjoy each moment in time! I will post pictures this weekend of my party at Tommy Toys and dinner tonight at John Ash.

love,
debbie