Nicholas’s Story: “I would not trade being with my mom the last months of her life for anything”

Nicholas, who lost his mother, Pamela Lightcap Simpson, in July of 2021, shares her journey with bladder cancer and the importance of an organization such as BCAN to bring awareness to this disease. Nicholas feels indebted to have spent valuable moments with her, even those that were a blessing in disguise: “I was initially supposed to be out of town, out of the country on a gig. And it fell through. And I’m very grateful that it did because I would not trade being with my mom the last months of her life for anything.”

My mom had three different bouts with cancer and it started with a breast cancer diagnosis in 2002. She overcame the breast cancer and remained NED (no evidence of disease) for about 11 years.  She ultimately reached the 10-year mark of being cancer-free, and then her doctors started noticing some things that were irregular on some of her breast cancer checkup results. They investigated further and that is how they found her bladder cancer.

The first course of treatment for her bladder cancer included a transurethral resection of bladder tumor (TURBT), scraping of the tumor.

As many know, even when doctors think that they have gotten all of a tumor after a TURBT, they still need to go back and check.  My mother had another test, and it looked like everything was fine. She had chemotherapy as a follow up and I’m extremely glad that she was vigilant, stayed on top of her testing, and stayed in contact with her doctors.

After her treatment, my dad and mom were going to come to Texas to visit me. But then she got a call from the doctors that said, “No, you need to come in. We need to look at something.”

It was at that point in the summer of 2013 that her doctors learned that her cancer was more aggressive, and she needed to have her bladder removed, a radical cystectomy Her bladder was removed, my mom had a urostomy, an opening in the belly that’s made during surgery. It re-directs urine away from where the bladder used to be.

At first, my mom struggled with her urostomy. I remember my mom was in tears as she and my father were trying to figure out how to cope with her urostomy bag, saying  “Well, I’ve ruined our lives. What have I done?” It was a very distressing and sad time, but my parents had a wonderful nurse at Restored Images in Kansas City who helped her adjust to having an ostomy and a bag.  The nurse was not necessarily a bladder cancer specialist, but she had just had a lot of experience with ostomies and she was able to show them a very, almost streamlined, very efficient way of dealing with it. My mom eventually adjusted to life without her bladder and had wonderful, full years after the surgery. However, her cancer came back eight years later, and it moved very fast.

At first, her doctors thought that she looked fine but wanted to recheck her in a few months. Unfortunately, everything was not fine. When my mom got cancer for a third time, I initially thought it was kidney cancer. The doctors had detected something was wrong and they were not sure if it was a recurrence of breast or bladder cancer.  That was in February of 2021.

It was determined that my mom had recurrence of bladder cancer, but this time, it was Stage IV, metastatic.

On February 18, 2021, we learned that her cancer was progressing quickly and had spread to other parts of her body.  The initial treatment plan was to do chemotherapy and immunotherapy at Menorah Medical in Overland Park, Kansas, but she only made it through one chemotherapy round. I remember on Mother’s Day in 2021, she had difficulty walking and had to go to the hospital, and her back broke likely because the cancer had gotten into her bones. Because of the break, she had a kyphoplasty, which is where they basically cemented my mom’s back.

She was suffering greatly and also had cancer-induced anorexia. It was exceedingly difficult for her to eat  and keep things down. She was just so sick to her stomach.

Shortly thereafter, toward the end of that same month, May, it was determined that she would need to go into hospice. In her frail state, further chemotherapy treatment would be too hard on her – the cancer was already progressed so far.  So, she made the decision to not continue with treatment – and it was the best decision. I remember when her primary doctor was in the room and they were talking about it, and she agreed to stop treatment. She was very serene about it. Only after the doctors left is when she showed how upset she was.

It blindsided me, frankly. She just started treatment. How were we moving to hospice when we’ve had one round of chemo?

My mom passed away at home in hospice care on July 2, 2021. She was just 73 years old.

During the end of my mom’s life, I was supposed to be out of the country on a gig but it fell through. And I’m very grateful that it did because I would not trade being with my mom the last months of her life for anything. It was hard to be a caregiver, but again, it was a privilege. My mom meant so much to me and still means so much to me. And it was a profound privilege to be able to take care of her. It was, I believe, the most painful thing I’ve ever done, but I would not trade it for anything.

But I wish I had known about BCAN sooner.

When I discovered BCAN, it was after my mom died. When I learned about the services you offer to the bladder cancer community, I wanted more people to know about BCAN.  That’s why I decided to host a concert benefiting the organization. I love the toll-free support line for patients, caregivers and loved ones that BCAN has.

I would tell anyone who’s going on this journey about BCAN because I think that the work this organization does is invaluable and wonderful. I think anything that you can do to get support, be that family, friends, cousins, BCAN, or any of that is really wonderful. I definitely want more people to know about and have access to resources like this; I think patients need to know that they’re not alone, and that those of us who love someone with a cancer diagnosis want to be there to help support in every way possible, and with every resource possible.