Myeloma patient couldn’t find support, so she built it
Diseases
Cancer, Kidney Disease
Issues and Challenges
Sheri has encountered: Insurance Issues, Oral Parity
My Story
In October 2011 I thought I was a healthy person. I was 49, married to my high school sweetheart, had 3 kids and I was working from home as a bookkeeper. That month I had a physical with my doctor who did routine blood work. My doctor called and said that my kidneys were only functioning at 8% and I was told to go the hospital immediately. That was quite a shock! After a kidney ultrasound and a kidney biopsy, the nephrologist called and asked us to meet him at his office at 7pm that night. We knew that could not be good. He told us I had an incurable disease and that I would be on dialysis for the rest of my life. He told us to go home and get our house in order.
A few weeks later, a bone marrow biopsy confirmed that I had Multiple Myeloma, an incurable blood cancer that I had never heard of, which had caused my kidney failure. At that time, the prognosis was 3-5 years. I was determined to prove them all wrong.
I began dialysis and chemo treatments and responded well. I was in the hospital for 17 nights for a stem cell transplant, which also went well. I was on maintenance drug free for 2 years. And during that time, my kidney function slowly improved. So, after 2 years of doing dialysis, every night at home, I was able to stop. But, like Multiple Myeloma usually does, it returned, and in April of 2014 I started treatment again. I was on that treatment for 6 years. When I relapsed again in July of 2020, I began another treatment. Four and a half years later, the myeloma is possibly on the rise again, and I will consult with my doctors for the next best treatment for me.
During this time, I noticed that there was a lack of myeloma specific education and support available where I live and the myeloma world was rapidly changing with new treatment options. Seeing a need to educate patients like me, I started a Multiple Myeloma support group In September 2017. Because of my involvement with the support group, I became a patient advocate. I love helping others and my involvement with various myeloma groups is my way of giving back.
My Motivation and Inspiration
Cancer is a word that no one wants to hear, whether it happens to a family member, a friend, and certainly not yourself. But there can be a silver lining. I have done things I may not have tried before my diagnosis. I have spoken as an advocate for cancer patients, attended patient seminars all across the country, attend a support group leader summit each year and coach myeloma patients, one on one. The people I have met along this journey have made my life richer. Doctors, nurses, and especially other patients.
So far, I have proved my doctors wrong. I am still off dialysis, and I recently celebrated 13 years of living with multiple myeloma. My goal when I was diagnosed was to be able to see my children get married and have grandchildren. My daughter got married, and I have 2 wonderful grandsons. My husband and I have taken some amazing vacations. I try to live my life to the fullest. It hasn’t been an easy 13 years, but I am grateful for every one of them.
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