[This is an update on Ed Kemp, a member of the IWMF community, whose original Story of Hope was published in 2015]
Since 2015, my lifestyle and health have continued to both change and improve. In order to describe what has happened during the last five years, I have arranged this update in chronological order.
In 2014 – 2015, Northeast Ohio, where I live, had one of the coldest winters on record. An injury to one of my legs made it difficult to navigate through the freezing cold and snow to feed and water my small goat herd every morning and evening. So, in 2015, at the age of 86, I made the decision to sell my herd.
Even though my IgM remained low, I had several upper respiratory infections in 2016. In the fall of 2017, my family urged me see my doctor at the Cleveland Clinic. She suggested that I take IVIG infusions during the worst of the winter months. I did, and I have continued to take them on three or four occasions during 2018 and 2019. Later this year, I will resume these treatments.
I am happy to report I have not had a reoccurrence of an upper respiratory infection. I have paid more attention to hand washing and disinfecting items that are handled frequently by the public.
These infusions improved my quality of life. I continue to golf, bowl at least once a week, and walk daily. I do yoga, which helps preserve my sense of balance. Using a tractor, I mow my 25 acres. My newest hobby is cleaning metals for recycling. In the winter months, when I can’t be outside as much, I have shelled over 200 pounds of pecans.
In August of 2019, family and friends from all over the country came to celebrate my 90th birthday!
My advice to other people in regard to being diagnosed and living with WM is to find the best doctors in your area. Don’t let extra miles stop you from receiving the best care that is available. By doing the research, you can find out where and from whom your best care can be obtained. A huge part of my acceptance and treatment of WM came from the compassion shown to me by my doctor and nurse. Last, but not least, allow friends and family to help you through your journey with this disease. And always try to stay positive and upbeat.
I have had an amazing journey. As far as I’m concerned, I don’t feel as though I have cancer. It is as though I have a new lease on life.
*Original Story of Hope* Edward Kemp: At the Right Place, At the Right Time
In 2007, I was 78 years old. In the fall of that year I was still driving a dump truck, for a local contractor, but I did not feel well. Winter passed, and the next spring I noticed that my feet hurt. I did not go back to work in the spring. When I was playing golf, I also found my hands were hurting. This went on for a while.
As time passed, things got worse. I went to a local MD about my feet. He prescribed shots between my toes, as his diagnosis was pinched nerves. This did not help at all. By 2008 I was getting worse. Next, I started to have tingling in my feet and numbness in my hands and feet. It was not so much pain, but the numbness was getting worse.
In 2009, I started retaining water in my lower legs. I consulted with some local MDs. Some suspected I was diabetic, so I was tested for it. But that was not it. I went to a local urologist, who said I should have a kidney biopsy and a series of blood tests. My brother told me we should go to the Cleveland Clinic. I did not want to go there, but he insisted. So I went. We talked to a kidney specialist at the Clinic, and he agreed that I should have a kidney biopsy. I had this procedure, and the verdict was cancer. At that time they did not know which cancer it was – either multiple myeloma or Waldenstrom’s.
Next was a bone marrow biopsy from my hip. By this time it was early 2010. I was admitted into the Cleveland Clinic, where I met a Geriatric Cancer doctor. The first time I met her and her nurse technician, they both hugged me. I had never been hugged by a doctor in my life!
My IgM was a little over 8000. They recommended plasmapheresis to temporarily reduce the IgM level prior to beginning treatment for the cancer. I was in bad shape mentally at this time. I recall two nurses there named Sarah and Iva who administered the plasmapheresis. They were very caring and helpful. After the second plasmapheresis session the Geriatric Cancer doctor came down and held my hand and said she was sorry but I needed one more of the plasma treatments. I was crying at the time when she told me. It was at that time it seems that a switch was flipped inside and I decided to fight this cancer.
In December 2010, the doctors scheduled me for my cancer treatments. My IgM number was 4950.
My first treatment consisted of a low dose of two chemo agents, fludarabine and cyclophosphamide, in combination with Rituxan. That day I had a reaction from the chemo. I got very cold, and couldn’t talk. The nurse called my doctor, and her nurse came at once. She walked me up and down the hall until I got control back. That first treatment happened over a period of time from 2pm to 6pm. On the way home I started to get cold again. I got home and got into bed and couldn’t get warm. Jean (my girlfriend companion) piled on the blankets. It took about three hours before I was warm again.
As future treatments took effect it got better and better and better. The IgM numbers kept dropping. My hands stopped hurting and the numbness started to recede. The people at the Cleveland Clinic were the best. I had been in a few hospitals in my life, but I never expected the care and concern I received there.
My last treatment was in July 2013. By November 2014, my IgM number hit 300. At my last visit to the doctor in March 2015, my IgM registered below 300. I feel so well now it’s hard to believe I have cancer. I am turning 86 in August of this year. My journey has had its ups and downs. Looking back I realize the caring nature of the staff and doctors at Cleveland Clinic was as important as the treatment was to my getting control of this cancer. I encourage anyone facing this cancer to seek out a large enough hospital that has the capacity to facilitate the research and treatment. Without knowledge like that at the Cleveland Clinic and the support from my family, I believe my story would have ended differently.
My improved health over the last several years has allowed me to remain in my home, where I have lived since 1934, and to continue raising my goats. I have had new “kids” over the last few years that I find loving homes for. I have enclosed pictures of myself and my goats.
Dorset, Ohio June, 2015