From Wheelchair to Walking Miles: Finding Joy in Multiple Myeloma Remission
Sean
State: California
Congressional District:
Diseases
Blood Disease, Cancer
Issues and Challenges
Sean has encountered: Access to Medicine, Insurance Issues, Prior Authorization
My Story
I’m Sean and I am living with multiple myeloma. I consider myself lucky. This is not a story of misfortune, it’s a tale of discovery and gratitude. I was in shock when I was first diagnosed. The pain was disabling and just getting to the initial radiation treatments was a hobbling nightmare. I wanted nothing more than to get back to bed and sleep in hopes of waking up to feel better. But cancer doesn’t heal overnight. It takes months and I slowly learned how to fight and where to dig deep to find the strength I needed.
I was diagnosed with multiple myeloma in July of 2022 after having suffering my first spinal compression fracture 10 months earlier, an accident playing in the waves at the beach. I had started to recover from that first injury but never did fully and eventually landed in the ER in extreme pain with the inability to rise and lift myself out of bed. I had lost about 45 pounds, had several fractures and lesions throughout my bones, and had become anemic. My kidneys were failing. I had all the markers of fully active multiple myeloma and a bone marrow biopsy confirmed the diagnosis. It felt like I had gone from a vibrant person to someone I didn’t even recognize overnight. The doctors said it was treatable, not curable. I said right there I wasn’t going to be a cancer victim and vowed to be a great cancer patient and fight my way back to life.
After radiation I figured treatment would start right away. But that was not the case. The delay in starting chemotherapy had me laying in bed for weeks without medication or hope. I never found out the actual cause other than it seemed like I was lost in the bureaucracy between insurance and corporate cancer care. It took many calls and constantly asking about when my treatment plan was going to start. I started calling the authorization departments directly. Treatment finally did start nearly two months after my diagnosis. It took another few months before progress really started to change how I was actually doing. I had a stubborn case of aggressive myeloma. I slowly learned to be an advocate for myself, how to use my HMO insurance and how to talk to the large cancer organizations to keep the care I needed going. My goal as a patient advocate would be to prevent the insurance barriers from affecting someone else.
There is no doubt I still do not feel well after nearly 3 ½ years. It’s okay—I have learned that’s kind of the base experience of multiple myeloma. I’m an expert cancer patient now. I am pretty good at turning a bad day into a good one. Currently, I’m in remission after ten months of chemo and a stem cell transplant. I’m grateful to be alive. I have love and support and most of all, I’m still me. My light might be shining brighter than it ever has. I found my joy again. I’m taking on new things and finishing up old projects with a new resolve. I just go much slower than I used to and I’m adjusting to the new pace of living with myeloma.
It has been a long, hard journey from that painful hospital bed to where I am now. My loving care partner and husband brought me to countless chemotherapy sessions: at first in a wheelchair; and later, after I learned to walk again. I was using hiking sticks, then a cane, always wrapped in my trusty back brace. Pushing myself to get stronger and better, I really wanted to stop using pain medication and find alternatives. I used meditation and creative drawing to keep my mind occupied during the months I spent in bed. Then I walked and walked and walked—miles. I started gardening again. I now spend time outdoors to keep my blood flowing and lungs breathing fresh air, the way I always had before myeloma became a part of me. I no longer wear the back brace or use a cane. I am a person living with multiple myeloma and I make time to help other patients in my volunteer work. It’s one of the most rewarding things I do every week.
My Motivation and Inspiration
I love the outdoors, being active and going on adventures. Creativity inspires me to express myself and show gratitude to my care partner and supporters. I give back to the cancer community by volunteering at the infusion center, helping patients feel comfortable during treatments.
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