Everybody has a Story: Eternally grateful for birthday gift

In 2007, after 15 years of seeing numerous doctors and specialists, 15 years of misdiagnoses and 15 years of being viewed as a hypochondriac, on my birthday I was diagnosed with primary systemic AL amyloidosis, a life-threatening disease. I was told that I had six months to one year left to live if I did not get treatment.

It was a horrible way to celebrate one’s birthday. Getting that diagnosis would have been welcome on any day but on my birthday.

I remember the feeling I had, standing outside the medical office and looking at the sign “Hematology/Oncology.” I thought, is this really happening to me? Upon returning home that day, standing alone in my living room, I envisioned a big, brown blob in the corner of the room. I said aloud to that blob, “You are separate from me! I am not this disease!”

At that moment, I felt empowered and knew that I was going to beat this thing.

My former employer, a retired cardiologist, referred me to the Mayo Clinic in Rochester, Minn. In January 2008, I had a battery of tests that took two days. The following month I underwent an autologous stem cell transplant with a one-time high dose of melphalan, a chemotherapy drug. The procedure was done as an outpatient for multiple reasons, including avoiding infections in the hospital, incorporating walking (which is good for recovery and I did daily — in 15 degree temperatures) and providing some normalcy for the patient, as opposed to being stuck in a hospital. I rented an apartment in Rochester next to a wildlife reserve.

In addition to support from friends, family and co-workers, my church family was supportive. I am a strong believer in the power of prayer and many people were praying for me. I felt and incredible inner strength and kept a positive attitude. I also believe that laughter is the best medicine.

Melphalan is a derivative of mustard gas used in World War I. While being injected with the drug, I said to those around me, “Ha, I am getting mustard at the Mayo. I will relish the thyme I will have to ketchup on my reading.”

My humor relieved tensions in the room. I also noticed that the window in my room was facing east and at that moment I could see the sun rise. I thought, a new day, a new beginning and a new life.

All went smoothly. I avoided potential negative side effects, except hair loss. After the transplant, I just needed to recover, which involved eating a healthy diet, walking daily and avoiding being in public because my immune system was compromised. My recovery lasted 10 years, then I had another stem cell transplant in 2018, lasting five years. I now am being treated with a monoclonal antibody injection once a month, and will soon stop that treatment. My labs are in the normal range.

After the first transplant I joined the Amyloidosis Support Group, which meets twice a year. Being a member has been a valuable experience as I meet other patients and hear their stories, hear presentations by physicians and learn about the latest treatments and clinical trials.

A few days ago, sitting in my living room, I began thinking of my diagnosis on my birthday. This has always brought feelings of anger and sadness. But then I realized that that day in October, I actually received the greatest birthday gift imaginable. That gift was finally knowing what I had. It gave me the power and knowledge to get accurate treatment and overcome the disease. That was 17 years ago. During those 17 years, I was present to enjoy and celebrate birthdays and holidays with my family, and present to stay connected with friends and extended family. Also, I found new interests, hobbies and made new friendships. I now experience an excellent quality of life. Having the support of friends, family, co-workers and my faith has helped me tremendously.

Indeed, I was given a wonderful gift that day and am now eternally grateful for that gift.

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