Patient Blogs | Multiple Myeloma
The Doctors Dismissed It as 'Back Pain' But I Knew Something Was Wrong

It was a strange burning-type pain right between my shoulder blades. I’d been feeling it for about a year, but the doctors in Rock Springs, WY, dismissed it. “Everyone has back pain,” they said, “Do these exercises and you should feel better.” But when the pain appeared in my sternum and my skull, I knew I had to find help somewhere. When I saw an orthopedic surgeon in Salt Lake City, he did an MRI of my spine and sternum -- and then immediately ordered a biopsy. They drilled a hole in my sternum and said, “Go home, we’ll call.”

A few days later, the surgeon called and told me to expect a call from an oncologist. She called. Cancer. “Get to Salt Lake City now! Be prepared to stay.” Everything I worried about, and imagined, was turning out to be true. I tried to be strong for my 5-year-old and 3-year-old, but I couldn’t control the crying. I was living a nightmare.

My husband rushed home from work, we threw some things in suitcases, and we hurried out of the house into an uncertain future. We made a quick stop because we forgot to “go” before we left. At the truck stop, I sat on a couch in the ladies’ room and held my daughter. I told her I loved her and everything would be OK, even though I didn’t really know. This time, I did it without tears. 

We arrived in Evanston, WY, to drop off our kids and were met by a group of our dearest friends. They surrounded us, prayed, and then they started stuffing our pockets with money to cover the extra expenses they knew we would have while we were in Salt Lake City (like the socks we forgot to pack). After hugs and tears, we continued on the longest drive of our lives.

It had been 3 hours since I got the call, and the hospital admissions office was waiting for us, so we were quickly ushered to the oncology floor. We were waiting for my room when a doctor walked in, looked around, then walked out. She asked a nurse, “Is Mrs. Ayen here?” The nurse pointed to us, and the doctor said, “It can’t be. Mrs. Ayen shouldn’t be able to walk.” When she came to talk to us, I explained that I had been changing sheets when I got the call. She shook her head in disbelief. She explained that I had a tumor completely compressing my spinal cord. Because the cord could sever at any minute, they were putting me to bed and I was not to move. She would be starting 10 days of radiation that evening to reduce the tumor on my spine and the lesion on my sternum. Radiation, cord compression, unknown cancer. My life had definitely changed.

The oncologist that had called me came in and explained they suspected multiple myeloma, a rare, terminal, and incurable cancer. For many reasons, like my young age, she wasn't sure of the diagnosis, so they wanted to continue to run tests to see if they could confirm it. After 2 weeks, it was settled. They couldn’t believe it. We couldn’t believe it. She said I would live for 2 or 3 years. How can that be? I have children to raise. They need their mommy! We were devastated. Cancer. I was 29.

That was more than 23 years ago. I blew right past the 3-year prognosis and just kept on going. I think one reason I’ve lived longer than my prognosis is that it was probably hard for doctors to predict how the disease would affect me because I was so young and otherwise healthy. But I also know that I wouldn’t be here today without doctors who were willing to aggressively treat the disease, family and friends who supported me, and a faith that got me through the rough spots.

Even though my diagnosis was a long time ago, the details of that day -- the travel, the kids, the blessings of friends, and the first interactions with doctors -- are ingrained in my memory and have become a part of our family lore. Multiple myeloma is such a crazy disease, it affects everyone so differently that you never really know what you are going to get. The one thing I do have control over, though, is my outlook. I choose to live each day to its fullest, read that book, take that trip, hold that child, live my life.

Photo credit: Thomas Barwick/DigitalVision via Getty Images

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Beth Ayen

Beth Ayen

Diagnosed since 1998

Beth Ayen has been living with multiple myeloma for 23 years. Recently retired from teaching, Beth loves spending time with her grandchildren and taking road trips with her husband, Mark, around their home state of Wyoming and beyond. Her passion is to connect with people, especially those with cancer, to encourage them through their journey.

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