Traverse City’s Cowell Cancer Center opened in 2016. Before and after the opening, I served on the center’s patient advisory committee. The majority of the committee members had personal experience with cancer — either as patients or family members. Like many people, a few of my loved ones had had cancer. The rest of our group was comprised of varied Munson and Cowell employees.
At the time, I also served on Munson’s Family Advisory Council and Mental Health Recipient Rights committee. In all three instances, my volunteer role was to bring forth both my professional and personal perspective.
In the early days of the Cowell council, we worked on everything from the patient information notebook to the building’s universal access. Once the center was open, I invited several people in my life with prostate, breast, colon and other cancers to attend our meetings. One such person was my 20-something student with testicular cancer, who gave us his powerful youth perspective.
I served on these community committees for a long time. The work was extremely meaningful and important to me. I could use my experiences to help others.
Even then, I could see the intersection between disability and cancer. People with mobility disabilities needed more time getting undressed for tests and treatments. Transferring on and off machine and exam tables was difficult for both the patient and staff, without the use of a Hoyer lift. A wheelchair accessible weight scale was necessary for calculating chemotherapy dosages. Additionally, mammograms, ultrasounds and MRI’s could be easier if the person remained in their wheelchair. Cancer patients with other disabilities needed ASL signers, materials in braille and picture graphic instructions. Everyone seemed to need a navigator — whether for transportation, mental health assistance, etc.
Over the years on the advisory council, I listened to people with cancer discuss the side effects from their surgeries, chemotherapy, radiation and maintenance medications. I wondered how a paralyzed person would retain their function if they already had healing challenges with their skin before radiation? How would they use their arms and upper body, if their lymph nodes and muscles were removed?
I was also becoming aware of the difference between the price of oral and IV chemotherapy medications and the need for what has become oral oncology parity laws. Often I heard people discuss “financial toxicity” — the fear that cancer might force them into bankruptcy.
And, of course there was good news. More people with cancer were living longer.
Just this past month, I began a new role with the Cowell Cancer Center. I’m now a patient. I have breast cancer.
My family and I are at the beginning of this journey. I just returned from tests and a surgical consultation with the University of Michigan Rogel Cancer Center. I have a Traverse City oncologist.
I’ll keep you updated on my health and hope you’ll hold me in your thoughts and prayers.
I want to grow from this new, challenging experience. And, I want it to help others.