To Share a Diagnosis or Not

A blood cancer diagnosis is a very private thing. It is truly life-changing. You are in the battle for your life. You don’t know how others will react if you tell them. Some are empathetic, others are scared away as if you are contagious. Do I share, or do I not?

A very personal decision

Whether or not to share your diagnosis is a personal decision. You see some celebrities suddenly pass away from cancer, and they had not announced it and chose to battle in private. Others are right out front and share that they have had a diagnosis and are about to undergo treatment. For me personally, my cancer journey was influenced, and I believe it ultimately saved my life seeing someone sharing their cancer journey on TV nationally.

I'm grateful that someone shared their story

Leading up to my stem cell transplant, I saw on the national nightly news there was going to be a new breakthrough cancer treatment gaining FDA approval that they were going to be talking about later in the broadcast. I told my children we needed to watch this as it may affect me someday years from now if my cancer were to return after the transplant. We gathered around the TV that night and watched the news story of Emily Whitehead and her parents testifying on Capitol Hill about this breakthrough treatment for leukemia called CAR-T-Cell therapy.

It was an amazing story of a very brave and resilient six-year-old girl that has paved the way for this treatment. They said at the end of the story that they are trying it on several other blood Cancers. I wrote her name and the words CAR-T Cell therapy in my phone's notes app as a reminder after the show.

Well, six months post-transplant, my cancer returned. Devastating news to receive, I was quickly back down at Dana Farber Cancer Clinic and facing my oncologist who said you can do an allogenic transplant or you could enter into a clinical trial for CAR-T-Cell therapy, that I would be one of fifty people in the country and in the UK participating for follicular lymphoma. I immediately remembered Emily’s story and said yes that I would prefer the trial over the transplant. That decision, based upon remembering Emily’s story, I believe saved my life and also led to FDA approval of the process for others.

I'm sharing my story because others helped me

I have chosen to share my survivor story and even wrote a coloring book about it, as I witnessed how the Whiteheads sharing their story meant so much to my family and me, and I am sure to so many others as well. My goal is to spread inspiration and knowledge about this lifesaving breakthrough treatment, so that people may be informed and know the progress that we are making and the hope that CAR-T brings.

It is a personal decision, and there are a lot of things to consider, family, relationships, work, and the fear of being ostracized. I think it benefits us all if people of influence or even little people like myself share their journeys and diagnoses. Celebrities can bring attention to the disease on a national scale, inspire an influx of funds, and drive research that helps us all. Nobody wants cancer, but it can be a way to make some good out of a bad situation, even if you only help one other person, that is worth it to me, though I cannot begrudge anyone who battles in private.