The value of having access to care = life
Diseases
Cancer
Issues and Challenges
Diane has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Transportation, Caregiving, Disability, Financial Assistance, Geography, Invisible Illness, Lodging, Oral Parity, Prior Authorization, Step-Therapy / Fail First, Underserved Community
My Story
On the day after Christmas 2017, my husband of now 35 years, was diagnosed with cancer. Let’s just say, that was one “gift” we really wanted to return! The news came completely out of the blue. He wasn’t sick, in fact, he was in the best shape of his adult life. His only health complaint was some back pain that was managed with occasional steroid injections. An MRI that was supposed to show the doctor the best spot to inject steroids, instead revealed he had cancerous lesions up and down his spine and a tumor on his hip.
There is never a good time to be told, “you have cancer” -- BUT, the week between Christmas and New Years, when pretty much every doctor’s office is closed, must be about the worst! Over the course of the next few days, it was determined that he had multiple myeloma, a rare and currently incurable form of blood cancer. That is when we went to work because we knew his life depended on it.
Sadly, this was not our first introduction to cancer. In 2003, my mom was diagnosed with breast cancer, and I learned through being her care partner the importance of second opinions, and the value of having an expert in your specific cancer on your care team. We credit the coordination between her expert at a top research NCI-designated center
and her local oncologist with keeping her alive and still cancer free today, 21 years later.
Following my mom’s diagnosis “our” cancer journey continued with three close friends, all in their early 40s, diagnosed with different aggressive, Stage IV cancers – pancreatic, stomach, and appendix. Based on my background with my mom, they reached out to me for guidance, and I helped them find specialist care in their specific diseases. Two of the three went to experts at top research-based cancer centers – and lived far beyond expectations. One opted to stay with her local general oncologist to not cause added burden to her family. By the time she conceded she needed a specialist, it
was too late, and she died weeks later.
We were still reeling from the deaths of our friends when my husband was diagnosed. We vowed to not let their deaths be in vain, and to use everything we learned from their journeys to help keep him alive. We found a top myeloma specialist at an expert center 60 miles from our house, and over the first two years made over 100 trips (typically two
hours each way) to that center. We considered ourselves lucky – we had a top cancer center within driving distance from our house, we had excellent insurance, we had the resources and career positions to allow us the time necessary to make these trips.
Seven years later my husband remains in remission, and we credit our access to excellent health care as the primary reason for this. We are passionate about making sure all myeloma patients have this access. We understand that for some this means access to telehealth outside of their state. The difference between living with or dying from cancer should not be based on your zip code.
There are many more stories from our cancer journey that I could share, the importance of getting connected with others battling your disease and getting educated in order to best advocate for your care among them; but access to a specialist is fundamental and the message that speaks loudest from the graves of my beloved friends.
My Motivation and Inspiration
My unwavering motivation is to use the lessons learned from my three friends, Mitch, Greg, and Kristyn, who died far too young from cancer. They are the "wind beneath my wings"; It is my mission to be their voice from beyond the grave and advocate for access to specialist care for all rare disease patients.
My husband and our family (two now-adult sons and my daughter-in-love) are also my motivation. Keeping him alive -- and LIVING life to its fullest -- enjoying time together as a family, traveling, and helping other patients and their families do the same, is my passion-filled purpose.
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