Next April I am riding from Maryland to Key West (again) to raise money and awareness for young adults like us who are in the process of fighting cancer. Dealing with an unexpected cancer diagnosis been a big part of our life for the last two and a half years, and though we have managed the logistics and financial impacts so far through careful coordination, many others are not as lucky. In the US, nearly half of the people who are diagnosed with cancer go bankrupt within two years. The impact is even greater for young adults. I am taking part in this ride and raising money for programs that support young adults going through this experience. Here is our story...
Suzie and I have known each other since 2012. Both University of Florida graduates, we met in Florida, spent a year living in New Zealand, then moved to Colorado where we got married Summer 2016. We were happy, working in our respective fields and enjoying an active life in Colorado, until our life shifted off course.
In the fall of 2017, Suzie experienced progressive headaches for a couple weeks, then suddenly she experienced a change in vision and began seeing double. Worried, I flew home from a work trip and we went to the Emergency Room to have her evaluated. On Oct. 12, 2017, at only 26, Suzie was diagnosed with metastatic (Stage 4) Adenoid Cystic Carcinoma, a high grade cancer that arose in the back of her nose and moved into the base of her skull and a vertebrae in her cervical spine.
We traveled to many different treatment centers at great personal expense to give her the best possible outcome. When she was first diagnosed, we traveled to Pittsburgh to consult with a nationally recognized surgeon who specializes in skull base tumors. The team at Pittsburgh removed about 25% of the tumor from her skull base through her nose, but she lost a lot of blood during the procedure and it wasn't clear whether her tumor should be fully removed, so the surgery was paused.
Surgery wasn't an option for Suzie, and she was referred to a harvard specialist for proton particle therapy in Boston, Massachusetts. Following her treatmet, which took place over three months, we moved back to Colorado.
When we returned to Colorado, Suzie slipped down a stair and fell on her back, which shattered one of her vertebraes. Scans at the E.R. revealed several more tumors in her cervical spine. She had to start systemic chemotherapy. We traveled to MD Anderson in Houston, Texas to consult with the medical oncologist who has the most expertise in her specific genetic mutations that triggered her cancer. Suzie was started on a challenging chemotherapy regimen and we relocated back to Colorado.
Suzie was on this regimen for several months and faced many trials. She was hospitalized several times with neutropenic fever (sepsis) and at one point had nearly no immune system. We are lucky she made it through her treatment, which successfully kept the cancer at bay through January of this year.
Last month we found out that a couple of her tumors, including her primary tumor, were recurring. We consulted once more with her medical onclogist in Houston who started her on a clinical trial. Now, we are traveling back and forth every week between our home base and the clinical trial location we chose until we can either transfer treatment to our home base or relocate once more to the clinical trial location. We'll keep doing this treatment as long as it works, and have another clinical trial lined up in the case the treatment is no longer effective.
This is been a huge challenge for us over the past year and a half. We've relocated a dozen times had six several-day hospital stays at great personal expense despite excellent health care coverage. This experience is especially difficult for young adults like us as the fewest resources are available to support our demographic. Luckily for us we still have savings to support us, but this experience has been a significant financial burden as well with about $75,000 in out of pocket expenses for us related to insurance premiums, COBRA, flights, hotels, and other incidental expenses.
I am sharing all of this to offer a snapshot of the burden young adults face with a devestating cancer diagnosis. Many are not as lucky as us with personal resources to fund relocation and treatment. As part of this experience I'd like to contribute as possible to organizations like the Ulman Foundation that provide assistance to young adults impacted by cancer.
I've chosen to honor Suzie and this experience by participating in the Key to Keys 2019 ride to benefit the Ulman Foundation. The ride begins in Balitmore and ends in Key West, over about a week, with a primary goal to raise both money and exposure for Adolescents and Young Adults living with cancer. The AYA community is historically underserved, and organizations like Ulmans Foundation fill a critical unmet need of relocation assistance, fertility and career counseling, and emotional support for young adults and caregivers affected by cancer.