Bladder Cancer – A Family Experience

The memory of my grandfather standing in our powder room struggling with his ileostomy bag is indelibly printed in my brain.  My grandparents had come to visit with my parents and the bag had leaked.  PawPaw never had a cross word for anyone and he didn’t talk much.  Andy always said PawPaw was a lot like God.  He didn’t have a lot to say, but when he did say something, you needed to listen.

That would be their last visit to our home in Fayetteville, Georgia.  PawPaw would leave us about five years later, with my stepfather at his side.  His cause of death would be bladder cancer and chronic obstructive pulmonary disease, complicated by medical malpractice.  He would have died, anyway, but his doctor’s incompetence hastened his death and deprived my grandfather of the comfort he deserved.  

The night my grandfather died, he watched his nightly quota of Wheel of Fortune and Jeopardy, then looked over at my stepfather and told him he was going on a trip.  He asked if my stepfather was going with him.  My dad said no, and PawPaw told him he would be waiting for him.  In a few minutes, PawPaw was gone.

Now my husband is fighting bladder cancer.  The doctor who diagnosed him said that treatments had changed and my grandfather’s cystoscopy “was likely performed with a candle.”  I thought that was rude and unnecessary, and a bit cavalier.  He told us that the standard of care for Bob’s type of bladder cancer was treatments with BCG, but said he could not get the drug since it is in scarce supply.  

I am not one to sit back, so we called Dr. James Bennett, who successfully treated Bob for prostate cancer more than 10 years ago.  Dr. Bennett said yes, there is an international shortage of BCG, but he could get some for Bob.  BCG infusions are done weekly for six weeks and are followed by a cystoscopy every three months for the first year.

Dr. Bennett knows I am a nurse and has allowed me to observe during the procedures.  During his second procedure, six months after the completion of the first round of BCG treatments, a new tumor was evident.  In the midst of Covid, Bob was admitted to Emory Midtown and his bladder was resected.  Once his bladder had a chance to heal from the resection, he underwent another series of six weekly BCG treatments.  These were much worse than the first, and he was sick after each one.  He’s finished the six treatments but he is still having issues.

As I sit here and wait for his tests to be completed, I am trying to channel the stoicism of my grandparents.  It isn’t working but I’m trying.  Bob is so calm and is taking everything in stride, while I internalize my stress.  

I wish I could predict the future.  I wish I knew what lies ahead.