Jo’s Story: Each Day is a Gift

In August of 2004 I had a routine appointment with my pulmonologist at the University of Iowa Hospitals and Clinics (UIHC) during the 4th quarter of a 20-year “smoker study.”  The day before, when I saw blood in my urine and the local urologist couldn’t see me for five weeks.  I shared my concern with the pulmonologist, who requested a urine sample and set up an immediate visit in urology where the MD I saw immediately scheduled a scan and an appointment for a week later to share the results.

At that point, the urologist opened her laptop and said, “This is your bladder, and this is your cancer,” as she pointed to a shady spot.  She then brought in a surgeon who answered a couple of questions and scheduled tumor removal for a week later.  The surgeon shared information about the surgery with me and answered my questions.

Our local hospital board had affiliated with both the UIHC and a Des Moines Hospital group during the two years (1996-98) that I chaired our board.  I KNEW I was in the right place because UIHC was, and still is, the only Comprehensive Cancer Center in our state!

There was one previous episode of blood in my urine in late April of the same year while I attended a large conference.  I drove myself to the local ER, the lab lost the urine sample, and the urologist said, “Drink lots of water!“  All cleared up until mid-August.

It was a most positive mindset prior to my surgery.  Survivors to newly diagnosed is to encourage the newly diagnosed who are scared silly to hear that someone lived after diagnosis is positive and helpful.

After the diagnosis and scheduling of the surgery, I called the Bloch Foundation to request a call from a bladder cancer survivor.  They match patients by gender, age, family, region, etc.  The woman who called me was a few years younger and an 11-year SURVIVOR!!  That was the MOST positive information!!

She had worked in a plant where painting and manufacturing was done which may have been the cause of her cancer.  Mine was smoking.  Both my parents smoked.  I started before my senior year in high school.  My parents highly discouraged me, but they didn’t convince me.  I DID stop, the night before bladder surgery, after 50 years and 4 months.  I disposed of all ashtrays and put coins in the one in the car.  I continue in pulmonologist studies at UIHC with a diagnosis of emphysema.

My friend went along with me for the surgery at the University of Iowa, 100 miles from my home and a very good friend was willing to ride along that day at 4:00 am for a 6:00 am surgery.  As I pulled out of her driveway, we both saw three beautiful deer in her front yard. I was a memorable departure and I remember the beauty of that to this day.

My surgery was successful and followed by treatment with immunotherapy, a word most of us didn’t know anything about in 2004. It was BCG with Interferon A, administered every three months, with cystoscope exams. The treatments were spaced out to six months, then annually, then two years.  It was effective!! 

My treatment was completed in 17 months.  A year after treatment ended, I became a volunteer with the Bloch Foundation.  I talked with 11 women over 13 years, one from 2009 until two years ago.  Those calls helped me, also.  We did not share anything except our own experience and what worked for us.  No medical information or advice, just what helped us such as diet, sleep support, fatigue tips, relaxation techniques, activities, books, etc., that helped us get through diagnosis, surgery, recovery and treatment. 

As you can tell from my photo, I am also a breast cancer survivor (2012).  The CASTING FOR RECOVERY weekend taught us excellent arm muscle restoration and a brand new fly-casting activity!  Bosom Buddies is also great support.

Bladder cancer taught me: 

• that each day is a gift

• to drink LOTS of water

• that volunteering is a double bonus.