After at least 2 years of struggling to find a physician who would listen to me and not brush me off, 2 years of being told “oh you just have a UTI or bladder infection,” of having male doctors discount my words as inexperience of my own body, and even having one doctor actually ask me if I was sure I was urinating blood clots and say it could just be related to my cycle, I finally had a Physician Assistant listen to me and refer me to a urologist. Within the next two weeks, I had an office visit, a cystoscopy and received my diagnosis of bladder cancer.
I was both floored and relieved. Floored because I didn’t expect the C word. Relieved because now I knew what the problem was, and I could figure out how to proceed.
I received my diagnosis on August 12, 2016. I was given 2 options: chemo then surgery or surgery then chemo. There was only a 5% difference between the prognoses, so I went with my gut. After experiencing increasing pain and discomfort over the course of 2 years, I wanted as much of it out of me as quickly as possible.
On September 23rd, I had a radical cystectomy by daVinci. My bladder, uterus, ovaries, cervix and pelvic lymph nodes were all removed. Part of my small intestines were used to reroute my plumbing and make a stoma site on my stomach. I now have a urostomy for life. My tumor was a T4 and had grown through my bladder wall and started attaching to my cervix.
I was originally supposed to be in the hospital for a week and rehab for 2 weeks. I had complications. That combined 3 week stay turned into 2 months. Still pretty weak, I returned home November 15th, in time to enjoy my birthday and Thanksgiving.
The week after Thanksgiving, I had my first oncology office visit, got my port, shaved my head with the help of family and friends and started chemo. Chemo was brutal. I had one of the strongest cocktails they’re allowed to give with a dense schedule. I was supposed to have 6 treatments 2 weeks apart. I had 4 treatments 2 weeks apart. The fifth was 3 weeks later, and we cancelled the sixth because my body couldn’t take anymore.
A week after my last treatment, my blood levels decided to go for one last hurrah and plummeted, which, since I’d felt so crappy all along, I didn’t realize, and I ended up falling. When EMS got me to the ED, my hemoglobin was 5.7. It’s supposed to be 12 or higher. I was admitted for a transfusion and then sent back to rehab for 3 weeks to rebuild strength. I was discharged on Friday, March 24, 2017, and returned to work on Monday, March 27th, using a walker and without any hair.
By May 26th, I received the news that I was in remission. I’ve had ups and downs along the way since, and there are bits and pieces I’ve left out, but this is the major part of my story.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.