I was diagnosed with bladder cancer in 2012. It was one of the worst years of my life. My family still feels the impact of the diagnosis even though I’m firmly in remission. In some ways, life after remission is harder, bringing with it depression, anxiety, and sometimes cold fear.
Because my husband had just accepted a job two hours from home, my daughter was usually my main caregiver. She was 13. No 13-year-old should have to do this, and it bit a huge hunk out of her childhood.
In the first few months after diagnosis I was occupied with doing research, going through surgeries, and beginning treatment. I spent hours on the phone with insurance trying to get a second opinion and ended up having to pay out of pocket.
Three things came together to build a bridge that carried me over. First, my next door neighbor is a cancer researcher and she introduced me to one of the top bladder cancer researcher-doctors, Dr. Gary Steinberg, from whom I got a second opinion. Second, my daughter’s Social Worker at school pointed me toward the Cancer Support Center, where I found an amazing support group. Third, through my searches on the internet I found the Bladder Cancer Advocacy Network.
BCAN is the hub of most everything you need when you’re diagnosed. They fund research, provide information, connect you to an online support group, and help you become an advocate for people with the disease.
I am most moved by the women in BCAN. Its co-founder, Diane Zipursky Quale, is a widow. She and her husband built the organization in 2005 at their kitchen table because there were no existing organizations. Until a few years ago, treatments for bladder cancer hadn’t changed for 30 years. BCAN deserves much of the credit, because of their funding of research, for the huge shift that came with the discovery of immunotherapies, a big game changer for folks with advanced bladder cancer.
BCAN also sponsors a yearly Summit, bringing together patients, family, doctors, researchers, and advocates. We learn about new treatments and about advocacy projects. We are also brought together in small groups to talk with doctors about our own opinions about needed research.
The biggest impact of the Summit, for me, is to look around the room at a large gathering of people who have walked in my shoes. Of this group, it’s the widows that grab me the most. They’ve lost their partners, they’ve served as caregivers, and they continue, year after year, to volunteer their time, energy, and love to this organization.
Many of the people in the room have lost their bladders and they aren’t shy about talking about the experience. It is such a comfort to be in their midst. They have been through the worst of it and are still active and engaged.
It’s not too much to say that BCAN has changed my life for the better. I walk because they’re serious about research. I walk because they know the ins and outs of how to get funding from the federal government. I walk because they’ve been there for me. I walk because they care.
I would like to invite you to join my team for this year’s virtual walk on Saturday, October 3rd at 10 a.m. If you register ($25), you’ll also get a t-shirt. The registration fee is also a donation. But, I’d love for you to give more. You can trust that it’s going to a good place, to good people who know how to use it to improve the lives of folks with bladder cancer. You can also register for this year’s Summit, also virtual, on October 10th. Registration is free. (Scroll to the bottom for the links!)
You can read my interview with Dr. Steinberg here.
You can join my team here.
You can register for the Summit here.
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