multiple myeloma letter

Dear Friends,

The year 2009 was quite eventful. I started a new job, moved to Washington, D.C., got married in May, and got diagnosed with multiple myeloma in September at the age of 60.

I was having pains that I thought were related to riding my bicycle. At my next doctor’s visit, I received a CAT scan.

The moment the doctor walked into the room, I could tell from the look on her face that this wasn’t going to be good. There were lesions down my spinal column, and one of my vertebrae had collapsed.

I was admitted to a hospital and spoke to an oncologist. He said he was pretty confident that I had a disease called multiple myeloma and asked if I knew what it was.

After I got over my shock, I told him yes. My first wife, Sue, was diagnosed with multiple myeloma in April, 1997, and died within 21 days of diagnosis. I think my doctor was more shocked than I was.

The first thing I thought of when I was diagnosed was not so much the emotional impact on me, but the emotional impact on my kids, who had lost their mom to this same disease. When someone is diagnosed with a cancer like multiple myeloma or leukemia, in a way, the whole family gets cancer.

I wanted them to know things had changed, I wasn’t going to die, and we would have a rich life together.

Right after my diagnosis, I started chemotherapy. In January 2010, I had a stem cell transplant at Mayo Clinic Hospital in Phoenix, where I live.

A whole combination of things kept me going. I went back to work within a week or so of being diagnosed. I had my family, my wife, my work, and my friends. My doctors made me feel like I was much more than a patient or a number.

The devastating part about multiple myeloma is that it’s one of the blood cancers where there’s currently no cure. But the advances in research and treatment are staggering. The difference between when my first wife was diagnosed and died in 1997 and when I was diagnosed a little over 10 years later is huge.

Unfortunately, I came out of remission in late 2014, but I had a second stem cell transplant in May 2015, again at Mayo. I’ve been in complete remission ever since, and I’m not on any maintenance therapy at all.

There really is a full, rich life after diagnosis. Don’t read the averages. The averages aren’t you. You are you. Keep your sense of humor. If all you think about is, “I’ve got cancer,” the cancer’s already won. You just can’t go there.

After my first stem cell transplant, I got involved with the Leukemia & Lymphoma Society’s (LLS) Team In Training (TNT). I completed the 100-mile bike ride in Lake Tahoe almost exactly one year after my first stem cell transplant, while also helping to raise funds for pioneering new research.

I’ve now done the Lake Tahoe ride with TNT five times. It has helped me personally deal with my disease. I really think I’m helping cure myself by doing what I do with LLS and TNT.

Today, I’m 68-years-old. I’m still practicing law full time, I ride my bike about four times a week, and I go fishing and hiking all the time. My wife Patti and I are involved in our community. I think if most people met me and didn’t know my story, they’d just think: Wow, there’s a really healthy, active 68-year-old guy.

I would be happy to talk to anyone living with multiple myeloma. Whether it’s me or someone else, talk to someone who’s been through it. In fact, the Leukemia & Lymphoma Society offers the Patti Robinson Kaufmann First Connection program, a free service that matches those with multiple myeloma and their loved ones with trained peer volunteers who have shared similar experiences.

Being told you have a cancer of which there’s no cure is pretty devastating news to hear. It’s helpful to talk to people who are living happily and successfully with it every day. That’s a big part of not letting it get you down.

Sincerely,

Andy


Andy Gordon

Andy Gordon is a multiple myeloma survivor, lawyer, and active cyclist living in Arizona. He wants people living with multiple myeloma to know that there is really a rich, full life beyond a diagnosis.