Next Step

This week I return to Salt Lake for my 100 day check up. I spend about 8 hours in testing on Wednesday. This includes another bone marrow biopsy. Oh yeah. They repeat all of the tests they did previously to treating me and then early October I go back and find out how the treatment worked. It's kind of an emotional time for me. My sweet friend Janette Lundstrom is driving me down and I will be staying with my Aunt and Uncle again until Friday when Dave will bring me home. It you would be willing to say a little prayer in my behalf for Wednesday I would appreciate it.

After all of this they will give me an exit visit and then I will be under the local physicians care and not the BMT. They have been my 24 our support team. What a team!!!!! If anyone has friends or family that end up on a journey like my I totally recommend the LDS Bone Marrow Team. They are amazing, smart and so kind. I am hoping when I am well to start a program locally that will help physicians and people of the community to become more aware of Amyloidosis. It is rare, but I fear there are more undetected cases because it is so complex. It is a mean, mean disease but hope is there with treatment. I am thinking of starting a support group also.

They used the most powerful chemotherapy there is on me. They had to use a reduced dose because of my impaired kidney function. Considering that they used the reduced dose, I would imagine the full dose would have killed me since the reduced dose tried to kill me. It was really only this past week that I am not having symptoms of adverse affects from the chemo.

Life is good.. because I am alive.

I was told by the doctors that I needed to be aware that my energy level would be very small. One physician likened it unto a box, a very small box. As time goes by my box will be bigger . She told me I can choose to use all of my energy box in one activity and then I'll be pooped for the rest of the day and worthless the next day; or I can use little spurts of energy throughout the day. Well, you know me. I had to try out pushing the box. Yup! She was right.
I am learning to not use up my entire energy box before noon.

I continue to rely so heavily on my Heavenly Father for support and my wonderful friends and neighbors. I honestly don't know how people survive situations like this without the belief in a God.

I have full faith that the testing will prove that I am in remission. I plan on becoming a lively full of energy person again. There are many people I still have to torment, and....help. I want to be of service. I have learned so much and have so much to give back.

I think of the funny things that happened in the hospital and the wonderful staff. I have foggy brain about most of my time. My children say I was very loopy. Glad I don't remember that. It is interesting how the horrible nightmares caused by the toxic build up of medicines remain totally clear in my brain. I have visited with some other people and have heard they also remember their nightmares and it has been years. I find that interesting. The brain. I don't understand the brain.

I thank everyone for their continued support. I look forward to giving or paying forward very soon. Most of all I love my family so very much . Sorry no pictures today.