Cancer is not a death sentence: Diane’s story
Diane H.
State: Alabama
Congressional District: AL02
Diseases
Cancer
Issues and Challenges
Diane H. has encountered: Discrimination (nonmedical), Medical Discrimination
My Story
I was diagnosed with Multiple Myeloma (MM) in January 2017. I had not heard of it. I was devastated. I remained as calm as I could. In my quiet time, I encouraged myself by saying, “I have MM, it does not have me.”
I was suffering from fatigue, anemia and other MM symptoms. I had to stop managing a local senior center. I was unable to do most things for myself except shower. I love to cook and when I stopped cooking and was barely eating, I knew I was in trouble. For the first time in my adult life, I had to rely on others to care for me. My nine-month journey to diagnosis began with my Primary Care Physician (PCP) being
dismissive about lab report results provided to him indicating protein in my blood, and a suggestion that he refer me to a Hematologist. His response was that it was not enough to be concerned about. Two visits to Urgent Care treatment resulted in temporary relief from back pain. My PCP ignoring my multiple requests for a MRI referral, led to my pursuit of treatment by a Chiropractor, that secured an MRI the same day of my office visit. The confirmation of multiple compression fractures in my vertebrae led me to an Orthopedic surgeon that put me in a back brace and referred me to an Osteoporosis Clinic. Lab test results for the clinic reflected too much calcium in my blood and my family rushed me to the hospital to address this issue. After a seven day hospital stay, a bone marrow biopsy confirmed that I had MM. More than 90% of my bone marrow was cancerous. Unfortunately, I was facing a five year life expectancy.
I experienced the reality of disparity in health care treatment for patients that are Black and elderly, often marginalized, overlooked, and unheard. It is important that patients and their caregivers understand that if the doctor ignores their concerns, do not hesitate to get another opinion. After five months of immunotherapy and a successful stem cell transplant, I have been in remission since July 2017. My cancer journey has caused my purpose to evolve. The opportunities I am experiencing and the wonderful people I am meeting are enriching me and others. My life is good because my experience with cancer transformed my life.
My Motivation and Inspiration
The lack of awareness of MM, the rapid evolution of medications and treatment options are the reasons why I became a MM support group co-leader and patient advocate. At my time of diagnosis my daughter told me that “Cancer is not a death sentence. Disease is not a synonym for death.” She was right. I have met people that have been living with MM for up to about 30 years. Patient quality of life keeps getting better and better. The word “cure” is now being heard in talks about a cancer that was said to be incurable. MM patients can be hopeful. Everyone’s cancer journey is different. Every patient and caregiver are important and empowered by their experience. Share your experiences and never cease to give your gift of encouragement to others. What you say matters. Your journey matters.
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