Last week I went to Salt Lake and spent two long days of testing. They checked my pulmonary function, did an echo of my heart. During this test I asked that the technologist show me what Amyloidosis looks like in the heart. It looks like little clumps of white scattered around. I had every bone in my body xrayed from head to toe from front to back. I had a whole bunch of blood tests drawn, probably around 20. Then I had a bone marrow biopsy done.
I spent Monday night at Eric and Lisa's and was able to play with little Ellie. Oh we did have fun. She loves me. The best part was that she wanted "nama" to read her a bed time story and rock her to sleep. Oh, I finally got to experience being a grandma. I took this memory with me the next day when I had my bone marrow biopsy and told them I wasn't going to have any medicine. I drove myself to Salt Lake because Dave had to work. I thought about my sweet snuggling rock a bye with Ellie and did just great during the biopsy. The PA that did it had done 3 others on me and she is wonderful!!
It was a long two days and very exhausting.
Yesterday I went down for results of all of the tests. I was told I wasn't going to be able to meet with Dr. Finn Petersen. He is the head oncologist, medical director of the Bone Marrow Transplant Unit. He was my main physician along with his 5 partners and 9 PA's. I asked if I could at least see him to give him a hug goodbye. He came in and gave me a big hug and told me this wasn't goodbye for good. I told him, yes it was that I had no plans on returning there, except when I get the support group up and running and then I would call him to speak. He said, you know me, I'll do it! I love that man. HE was the reason I went there. I was prompted by the Spirit that he was the one to do my care. I'll never forget that day.
I met with Dr. Hoda. He told me that I had a very good partial response. In all honesty, I was a bit disappointed. I truly thought I would have a complete response, but they were all thrilled with my response considering where I had been. The very best news of the day was that the ECHO actually showed my heart walls weren't as thick as they were a year ago. The Dr's were amazed by that. They really did not expect this. It takes years for the amyloid to slowly absorb and for organ function to improve. This finding was unexpected and extremely good. It makes up for the partial response. I was also exited to follow with my local physicians. They usually keep patients until their 100 day check and here I am a year out. I finally made it. I will miss all of those wonderful people but it does feel good to think they feel I am well enough to follow my local Drs.
On the drive to SLC, I had so many thoughts going through my mind. I was on my way to meet a lady who is 3 months out from stem cell transplant. She also has AL Amyloidosis of the kidneys. What a sweet woman she is and she was so happy to get to talk to someone who gave her a brighter hope for the future. I had received the nicest card from another lady I have been talking with, and then I am trying to meet with a surviving spouse of a sweet friend who lost her battle to Amyloidosis because of too late diagnosis. My heart is so full of gratitude for all of my blessings and for the opportunity to try and help these other people.
I got the feeling during my drive that I would be around for a few years to get this group up and going. It is going to take alot of work, but it is something that is needed so badly. I am also going to still try and get the word out about Amyloidosis not only in Cache Valley but Ogden, Salt Lake and Provo areas. Keep the diagnosis fresh in physician's minds.
My doctor told me yesterday that 18-25% of patients don't make it through transplant . If the heart is involved it is even higher. The statistic that 40% of AL amyloidosis patients die in the first year after diagnosis shows that half of them don't make it past the first few months. Everything that I went through.......and I am still here.
I am reminded of the many, many prayers offered in my behalf, of the many temples my name was on the prayer rolls. Family, friends, coworkers, .extended family and their friends. I will never know how many people actually prayed for me, but this I do know......I felt their prayers and...their prayers were answered!!! My prayers were answered.
God is a loving Father. He knows each one of us personally as His child. There is a plan for us as we come to earth. We have a mission to complete. Mine was not done, but I also feel that I was given extra..I just really feel a gift was given to me because of the deep wishes of my heart and I placed my life in His hands but asked to please, if possible be able to live.
My whole heart and soul feels different. I am filled with a love that encompasses me. I have no ill feelings of any sort, only love and concern. I feel a great need to serve and try to make a difference in people's lives. I also feel a courage and need to share my knowledge that God does live and that there are miracles that happen around us. I am one. Jesus Christ is our Savior. He not only atoned for our sins, but all of our pain and sorrows. He is there to ease our burdens, to give us courage and strength when we can't do it any longer. I know He's there. I felt Him. I know that angels attend us. We may not always be aware, but they are there. Some of my angels were my parents and others who have died. I have learned that those on the other side of the veil, pray for us.
As I continue to feel better and get to where I am able to do more things, I want to make sure I never forget those very tender special moments. I don't want the busy times to interfere with my moments of reflection and meditation.
I have seen our family grow closer. Immediate and extended. I also know that my family on the other side have been influencial in helping that happen. I am truly blessed to have the parents, grandparents, aunts and uncles, cousins, nieces and nephews, brothers and sister, husband and children that I do. I love them with all my heart. They all stepped up and supported me so much.
I plan on celebrating on June 14th when I turn one year old. I got 5 immunization shots today. I am on my way. I go back in 2 months...just like a baby, to get more. The weight is coming on as fast as it fell off. That's a bit disheartening, but ok. Must be a good sign. I just need my 3 inches back that I lost in height.
The fatigue, the backpain, the total body joint pain, the femur and shoulder pain, the dizziness that comes and goes.....well I continue to puzzle the Dr's. Fatigue and backpain is explained...the others aren't. I decided that if I hurt, it's a nice reminder that I am alive! I can do it! The dizziness is probably just a loose marble. My bad days now are better than my best days a year ago. Life is good. I have come to understand what Hope really is. This is my quest, to share Hope.
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