In June this year I will be coming upon my 4th year since stem cell transplant. At the time of transplant survival numbers like 2-5 years were tossed out. I often think back to the words that came to my mind prior to my stem cell transplant. "You will live but it will be a long hard road".
It has been an eventful road thus far. I have had multiple health issues connected to affects of the amyloidosis on my body. I feel like I may have tried out most of the complications that were possible. I have learned so very much. These problems have made it impossible for me to even think about working as a nurse. I have decided the problems have been a blessing in disguise. I was so passionate about my profession and loved working with the Dr's and staff that I did, that I would have pushed to go back if there were a possibility. There wasn't. Because of my challenges my life was directed to where I should be. I have adjusted to being at home. I love being at home now. I started physical therapy a few months ago which has improved my quality of life immensely. I am working on sewing projects. I read. I am available to talk to my children when they call. I am home when my husband comes home from work. I have a mostly clean house. I am available to serve others. I have a great life.
Recently I was contacted by a dear friend who she and her husband reached out to me in the early days of my diagnosis. They were a bright spot in my life and provided such strength. She told me her little sister was recently diagnosed with Primary Cardiac Amyloidosis. My diagnosis. My RARE diagnosis. She even lives within Cache Valley. It reaffirmed to me that the disease is missed or misdiagnosed more than it is rare. Another interesting fact is that Dr. Garg who I worked for was the physician who diagnosed it. She went in for a follow up colonoscopy. Dr. Garg is amazing but this really touched my heart that my dear Dr was instrumental in getting this patient to correct care. He has studied and learned so much about amyloidosis.
I was asked to call and speak to Kaye. As I spoke with her she shared her fears, and questions. I felt as if heaven had given me a gift opportunity to begin to give back some of the love and support that was given to me. I had flashbacks of the feelings I felt at the time I was first diagnosed. My heart ached for her. She was in a place that no one could really help her. We can offer verbal support, physical hugs and spiritual prayers, but she was on a section of road that only she could walk. The only one who could help had already walked that road and felt our pains and agonies. Jesus Christ could walk that road with her when no one else could.
I have spoken with Kaye a few times,offered some advice, loaned a wig did what little I could. The thought came to me," am I helping bear her burden?" I sure hope so. In those first days when I could remember how I felt my world had been tilted off it's axis and knew things would never be the same; feared about surviving and if I did, what would I be like? Feared of dying and leaving my family. As I remembered these thoughts I truly wished I could help carry some of her agony. Again, I was reminded someone had and would again as she reached out to Him. I can offer what I have to offer and just the fact that I actually know how she feels and have been through the treatment AND am still here, hopefully gives her hope.
I have been grateful for the medical connections I have because of my treatment. They came in handy to help her. Truly a blessing of me having been through this. She is preparing for stem cell transplant.
The last couple of weeks we were informed of a dear previous stake president who is fighting for his life against metatstatic liver cancer. His sweet wife has already fought and won two battles against breast cancer. I love this dear couple. Dave and I went to visit them. I told him, "why is it we wait until someone is sick before we tell them of the great influence they have had on our lives and how much we love them?" I found myself reaching out to hold his hand to hopefully let the great love I felt transfer physically from me to him. I believe in the importance of touch, especially when someone is ill. After visiting with him, as I bent to hug him gently, with tears in my eyes, I found my hand resting on his temple and whispered into his ear how much I loved him and would pray for him. I could see him respond. As I hugged his wife, I could sense a strength in her. She was receiving strength and yet they were both so grateful for our short visit. I truly want to help bear their burdens.
Another friend was recently diagnosed with CLL (leukemia) and lymphoma. He is younger than me. His wife is a friend of mine and a fellow nurse. I prayed and wondered how I could possibly help them. One evening as I was driving home and passed their house I felt a deep need to stop right now. Dave wasn't with me and he really wanted to come visit but I needed to stop now. The thought came to me that I had been down a similar road, that I had something to offer. I just wasn't sure what it was other than to encourage to have hope and seek the Lord. They are a very religious family so I was certain they already had. As I rang the doorbell the wife answered. She took me into their front room and for the next 45 minutes just talked and asked me questions. She said, " I am a nurse. We are insured and yet I don't know where to go. I don't feel like we are getting the help we need." As we visited thoughts were brought to mind about where and how they could get care. It is amazing how difficult it is to get to out of town doctors. You need a referral and sometimes local Drs aren't willing to send you. I learned early in my illness to not worry about hurting doctors feelings. Not purposely; but to insist on getting second opinions and keeping copies of all tests and visits.
As I spoke with Michael later, I felt to tell him, "you can never ask for too many priesthood blessings. I learned this along my journey. I felt a special feeling for the picture of the Savior at the door knocking, and the door has no doorknob. I KNOW He is always there. He is willing to answer whenever we knock. He will wait for us to use our agency to ask, but He is there." Michael told me he had had a priesthood blessing from his son and in it he was told to "not hesitate to knock." He like me is very independent and it is extremely hard to as for help. As I left I hoped that somehow I was helping bear his burden.
I have had these people and others on my mind and heart. Perhaps they are also part of the reason I was allowed to stay. So I could learn more of charity. To be more of the person I need to be to face the Savior worthily.
The past year my oldest daughter has been having multiple tries with invitro. Just last November was the final try. The have shattered hearts they are trying to heal but then want to adopt. I was so grateful I have been here to be with her through this extremely difficult experience.
I have a son who recently bought a house. I was there.
Our youngest daughter needed my help specifically with searching for employment this past year. I was there. Tender mercies flowed.
My husband and I are so much closer since my illness.
I now have 2 beautiful grandchildren, Ellie and Sophie and I am here to enjoy their little arms around my neck and the "I love you Grandma Sue." or "you are the best gnama".
My life has been a hard road these past years, but when I look at the blessings that have come to me they over shadow the hard times.
If we could only keep in mind as we are trying to live through our difficult trials that we are never alone. A loving Savior is right there. This is a time in our life that we can improve our relationship with Him because we are more humble. There will be so many things we will learn going through these trials and we need to keep our eyes open for those things as well as the tender mercies that will come. We just may learn some things that will help us bear one anothers burdens.
No comments:
Post a Comment