Diary of a Caregiver: Diagnosis

My Grandpa, a DC native, has a resemblance to Abraham Lincoln with a full beard and a full head of salt and peppered hair. Thirty-five years ago, he and Grandma moved to Charles Town, WV, where he took the train into DC every day for several years before he retired. He worked for the telephone company and wired phone lines in government buildings and congressional offices, including Senator John F. Kennedy, whom he remembers as being a kind man. My grandparents had four daughters and a son, my mother being the oldest.

My parents followed them to the small town as they began their own family. He and my Grandma watched my brother and I every day after school. Our summers were spent walking down main street to the Five and Dime to refill the candy supply kept in glass jars in a hutch built at the turn of the century and playing in the attic of their 1860s Victorian House. When I started acting in our local community theatre at the age of eight, Grandma would volunteer to do make-up and Grandpa helped build sets. They have always been an integral part of my life.

Surviving a triple bypass and prostate cancer before bladder cancer

My grandparents have been married over 60 years. They had recently moved in with my parents when Grandpa was diagnosed with bladder cancer in early 2016. He had survived a triple bypass and prostate cancer in the past 20 years. But at 81 years old, my family was concerned that this diagnosis may not have a successful outcome.

Although a quiet, reserved man, Grandpa had been there during my own personal health issues – starting with open heart surgery at four, broken bones, gallbladder surgery, and the most significant, life-changing diagnosis of chronic migraine. As a kid, Grandpa would often have to pick me up from school when I had a migraine attack, but he left the crying, screaming and vomiting to Grandma to deal with.

In 2011, my episodic migraine disease became chronic, everyday occurrence. I remember telling my family that after two years of trying to work and get better, my doctor was insistent that I stop working. A man of few words, Grandpa told me to do what was best for me (and so did the rest of my family).

This huge change in my career path led me to start writing for Migraine.com, where I have been a contributor and moderator since 2013. Migraine.com was the first community launched by Health Union, who is the parent company of BladderCancer.net.

Telling my grandfather's story

When I found out that BladderCancer.net was going to become a sister site, I knew that I had to tell my grandfather’s story. From diagnosis to bladder removal surgery to rehab to home, my family communicated in depth through email and a closed Facebook family group about his condition at every step. It was an honor to be by his side during the most significant parts of his journey. With my family’s blessing, I will share his story, using our correspondence and my reflections on the events, in a series called “Diary of a Caregiver.” Here is the first entry, starting with his diagnosis.

Diagnosis, March 2016

Hi Fam,
Grandma asked me to update everyone with Grandpa’s condition. He had a cystoscopy last week and has had some trouble since. I went with him to his urologist appointment yesterday.

The doctor took out some lesions in his prostate and tissue in his bladder. Pathology reports detected that the cancer has progressed. No need to panic. The cancer in now in the second layer of his bladder, the lamina propria. It is considered Stage 1 cancer and also called T1. This link explains the anatomy of the bladder and all related organs.
This link discusses the different stages of bladder cancer. Again, he’s only in Stage 1.

Next steps

Grandpa had his catheter removed yesterday. The doctor wants to give it about 6 weeks for all the inflammation to heal. Then he wants to do another cystoscopy to make sure he got all the tumors he could so he has the most accurate information. He said that due to the previous radiation burn from his prostate cancer plus bladder inflammation, it can be difficult to differentiate between the prostate and the bladder since they are so close together. The procedure has been scheduled for April 13, 2016. He also has a pre-op appointment on April 5th at 3:15pm. I wanted to get the dates out there, so maybe we can divide and conquer.

And then…

Assuming the cystoscopy is successful and nothing further has progressed (there is no reason to believe it would), then Grandpa would go through treatments to kill those nasty cancer cells. He will not need radiation or chemotherapy. Instead, once a week he’ll go to an infusion center for Immunotherapy. He’ll only need to be there for an hour and they will inject the medicine (called BCG) directly into his bladder. Scroll down on this link to “Intravesical Immunotherapy” to learn about the medicine and how it works.

The doctor said Grandpa’s condition would have to deteriorate significantly before discussing bladder removal. He agrees that he’ll only use that as a last resort. I hope all of that makes sense, let me know if it doesn’t.

Signed, Grandpa’s personal Medical Advisor, Katie

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