Fourteen Years with Myeloma: Surviving, Advocating, and Living on Borrowed Time
Lee
State: California
Congressional District:
Diseases
Blood Disease, Bone / Muscle Disease, Cancer, Chronic Pain, Rare Disease
Issues and Challenges
Lee has encountered: Access to Expert Providers, Copay Issues, Invisible Illness, Job Insecurity / Loss, Oral Parity, Transparency in Health Care
My Story
I’m an avid bike rider who developed a sharp pain in the area of my rib cage. Doctors insisted I had a broken rib causing my chest pain, even though I had not fallen. I could feel the growth on my rib, but doctors stood by their original diagnosis. After eight months of misdiagnoses, I was finally told I had high-risk Multiple Myeloma. Myeloma is a rare, terminal blood cancer. The high-risk designation refers to genetic abnormalities and means the available treatments would not produce a long-term remission.
With the diagnosis came the prognosis that I had 2-4 years to live. Saying that I was gutted, confused, and depressed is an understatement. I served on the board of a local non-profit that provides support to families who have a child with cancer. I regularly received reports about kids we lost (roughly 20-25% of children with cancer don’t survive. Many others are left with permanent developmental disabilities). I was always heartbroken by the fact that these children didn’t get to experience a fuller life. I took some solace in the fact that I was 60 years old and had a pretty good life that would not be available to some of these families. But I also assumed I wouldn’t live to see my kids married or get to enjoy grandchildren.
Over the ensuing years, I’ve been through radiation treatment, five lines of chemical treatment, a stem cell transplant, and CAR-T treatment. The radiation treatments killed off about 20% of my lung capacity. The stem cell transplant left me extremely weak and took six months of physical effort to recover from. Some of the treatments left me with peripheral neuropathy. Other treatments produced gut issues, poor balance, and all sorts of aches and pains. In fact, every treatment has a “cost.” They all cause some sort of pain and/or disability. In addition to treatments and hospitalizations, I’ve undergone a number of bone marrow biopsies, PET and CT scans, blood tests ranging from every week to every month, and many doctor’s appointments to try and mitigate the disease and treatment effects.
I’ve had great doctors and great luck. Every time I’ve relapsed, a new treatment has just become available. It is good fortune that when I relapsed from the stem cell transplant in 2015, two new treatments had just been approved. When I finally relapsed from those treatments, CAR-T had just been approved for myeloma patients. My 14 years of struggling with this disease have forced me to learn how to advocate for myself and take an active interest in improving my healthcare and the healthcare of others.
I serve on an advisory committee for a large pharmaceutical company dealing with issues of access and equity. I have led a myeloma support group since 2018. I’m the Board Treasurer for Jacobs Heart Children's Cancer Support Services and participate in events with a number of myeloma-related organizations.
My Motivation and Inspiration
What really helped keep me going was the kindness of myeloma patients who had been referred to me by friends and family. These were people who were mostly total strangers that I could count on to take my calls and answer my questions. They recommended myeloma specialists, pointed out resources, shared their experiences, and encouraged me to remain positive and active. Because they inspired me, I feel duty-bound, in memory of their help, to pay their efforts forward.
They are all gone now. Myeloma took them all: Jack, Victor, Dick, Mike, and Terry. These are the people who encouraged me to become active in the myeloma community. Even though they faced certain death, they took the time and effort to help me. And I can’t, in good conscience, do any less.
Everybody has a story of someone they know who has dealt with cancer. What they don’t and can’t know is how it feels to be that person with cancer. The pain, fear, and confusion of being diagnosed with a terminal disease can only truly be experienced by the patient. My wife once said, “I’m so sorry you’re going through this.” We have gone through forty years of marriage, but upon hearing this, I suddenly felt so alone.
That’s why I started a support group. Every time we meet, we discuss treatments and their side effects. We talk about what’s going on in the development of new treatments, even what to do if you don’t like your doctor. The people who come to the support group are in tremendous need of information. We’re careful to explain terminology and acronyms, all to help them become better advocates for their own care.
Through this activity, I’ve learned that it’s not only about doctors and drugs. There is so much to be done in legislative advocacy. Government research funding, health care rules and regulations, access to care, drug policy, and virtually every aspect of care are driven by legislation.
It is the next step for me to move beyond localized help and do what I can to give aid and comfort to the entire cancer community. My friend Jack would always end his emails to me with, “You are your own best advocate.”
I endeavor to become every cancer patient's best advocate.
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