Bladder cancer changes you: this is why I walk (Amp Up!)

Bladder cancer changes you: this is why I walk (Amp Up!)
My husband, daughter and I with the Chicago skyline in the background at last year's walk.

I was diagnosed with bladder cancer on August 29, 2012. My life will never be the same as it was before. I will never again assume the ground beneath me is solid, and I will never again believe “it can’t happen to me.”

This is how I knew I had a problem: blood, and lots of it.

I was 51 and in the throes of menopause. Women see blood in the toilet most of their lives, but menopause switches everything up. You just never know what you’re going to see and feel. Your body betrays and surprises you.

For two weeks I was seeing clots, and I assumed it was menopause. As the days went on, there was more and more, but only when I peed. I knew something wasn’t right.

My fingers found the internet on my laptop, and I looked up “causes for blood in urine.” Mayo’s site had 10 causes. Number six was cancer. It was the first time I had ever thought of cancer in terms of myself.

I held my breath…and waited three more days to go to the doctor. I was admitted to the hospital and received my diagnosis three days later.

But, survival is a tenuous thing where cancer is involved. If you survive a shipwreck, it’s over and done. You may have years of working through the trauma, but you’re finished with the shipwreck.

You’re never finished with cancer. Ever. I know quite a few people who put the experience into a healthy perspective and move on with their lives. I am, myself, becoming one of those people. But cancer is never done.

  • Bladder cancer has the highest recurrence rate of any cancer: 80%. Eight out of ten of us have a recurrence.
  • We’ve seen no significant change or improvement in treatment for more than 30 years.
  • If you have high grade cancer that is resistant to treatment, the next step is bladder removal. In some cases, the first response to high grade cancer is bladder removal.
  • When you lose your bladder, you lose many other organs as well. You may lose sexual function, and suffer nerve damage.
  • You have only a 15% chance of living five years with Stage IV bladder cancer
  • Once diagnosed with bladder cancer, you will have yearly surveillance for the rest of your life.
  • Surveillance involves urine testing and cystoscopy, where a camera is inserted into your bladder via the urethra to check for tumors.???????????????????

And this is why I walk in the Bladder Cancer Advocacy Network’s yearly walk. We’re calling it Amp Up! Throughout the U.S. communities are hosting walks to raise money for research.

  • We need research about treatments
  • We need research about quality of life after bladder removal
  • We need research about the molecular nature of bladder cancer/s.
  • We need research about less invasive methods of monitoring our bladders

Mostly, I walk in Amp Up! because I’m grateful for BCAN and for the bladder cancer community. I’m grateful to be alive and healthy. I grieve for those we’ve lost and for those whose quality of life has been greatly diminished.

I walk in AmpUp! because we need each other. Anxiety and depression haunt “survivors.” It’s a plague for all of us with a diagnosis of cancer. And, we need to know that we’re here for each other.

I walk to support BCAN and I walk to support my bladder cancer community.

Please join the Chicago group at 9 a.m. on May 21st. We'll meet at Maggie Daley Park, Cancer Survivor's Garden. I would also be honored if you contributed $5 to my team, Cancer is Not a Gift.

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