Learning

Every day I continue to learn new lessons, which should be old stuff to me. I am continually humbled by the memories of old and even new tender mercies. I reflect daily of my life and the joy it is to live. To interact with my family. To feel well for the most part, and now, sometimes even feel like I am offerring something to someone. Why is it that I don't feel of worth unless I am able to do something for someone or help someone? I do know I am a daughter of God and I should feel worth, but I "feel" a worth and happiness as I am able to help others.

I tried to help a new friend and her husband as they were preceding to have chemo and transplant for Amyloidosis. I talked more with the husband as he had many questions and fears. They went to a different facility than I did for care. They were nervous about the care but I felt that they weren't confident in their physician. They had a physician change after beginning treatment since their original physician left the facility and went East. I tried to help them understand that a patient always has the right to seek a second opinion at any point in their care. I told them if they weren't 100% confident with their doctor to get a second opinion but if they were ok, to proceed. We all get very nervous prior to treatment.
They stayed in touch with me until she was 6 days out from transplant. I spoke with her husband 2 times that day and after speaking to him, I felt very impressed to call him back and bear testimony of a few things. I called him back and shared my testimony with him. He thanked me.

Four days later, I received a call that she had passed away. It felt like a hard gut punch. I've never really been punched in the gut though. I felt like I had let her and him down, that somehow I should have pushed harder for her to get a second opinion. I had felt that she was just so sick and weak. Her heart was even more involved than mine . I was a big if for a while about being a stem cell transplant candidate. Perhaps she was just too sick to handle a transplant, but there is chemo treatment available. This other facility is very, very aggressive in their treatment and they don't customize it like my facility did.

I feel I am learning what it feels like to mourn with those that mourn. I should already really know this lesson, but I feel it in my heart and soul. I am so grateful for the impression I had to share my testimony with him.

Saturday of this week I attended an Amyloidosis Support Group meeting in Denver. I am having a wonderful time with Lindsay, just being a mother and a daughter together. This year we are having fun together, where last year she was one of my caregivers. What a difference a year can make. We went to the meeting together. We were able to meet a physician from Mayo clinic in Phoenix that came to speak with us and answer our questions. The physician comes at his own expense and spends about 5-6 hours with us. There were about 25 of us. He taught us, answered questions for us and then just mingled with us. The support group is amazing. THIS is what I am trying to get available for people in Utah, Idaho and Wyoming. We would meet in Salt Lake or possibly Logan once a year. The main support group arranges for the speaker and then the local point person, which be me would arrange for place and food, but the food would be paid for from the main support group funds.

I met a man who had stem cell transplant 10 years ago and now his heart and kidneys are actually improved. Most everyone there has had stem cell transplant and then gone awhile then the disease "awakens" and more treatment is needed. I did hear there are actually a few people who had initial treatment and hasn't had any further treatment and are out several years.

We learned about new treatments out now and some that are actually being worked on. There is a big symposium in the Netherlands this summer where alot of the oncologists go and compare notes and cases and research.

I get the feeling there aren't alot of us Amyloidosis patients out there. But I also see a future for us which is very encouraging.

Conference has been so wonderful. Again, it feels like so many talks were just for me, or they remind me of some lessons I have learned this last year. How blessed we are to have the restored gospel with its fulness on the earth to bless our lives and to have a living prophet to teach and instruct us.

I had it reinforced in my heart and soul that I am a miracle, after speaking and listening to so many people. I acknowledge the Lord's hand in my life. He truly does give me daily bread. I know He loves us and wants us to help one another. Perhaps that is why I feel of worth and feel happiest if I am trying to help someone.