Dear Bladder Cancer,
I have so many mixed feelings about you. I didn’t even know bladder cancer was a thing until the moment I was diagnosed with it. I am angry that you are so common, but no one is talking about you.
You hit me upside my head, out of the blue. Bladder cancer is not talked about, so I had no clue what the symptoms were or the risks. I was unaware of any possible family history of bladder cancer. I didn’t know that bladder cancer is considered the cousin of prostate cancer, or that women in families with a history of prostate cancer have higher risk of getting bladder cancer.
I don’t understand why I had to fight for two years to get the medical community to take my complaints and symptoms seriously. I complained about frequent urination and bladder spasms, which were ignored. I returned to the emergency room doubled over in pain and complaining about urinating blood clots only to be asked if it was really my menstrual cycle. I don’t understand how I was asking for help and testing and was still ignored to the point that my diagnosis came when I was at stage 3b with a tumor the size of a baseball growing through my bladder wall and starting to attach to my cervix.
I don’t understand why you made me struggle. I don’t appreciate the hell you have put me through for the last three years.
Treatment was a brutal ordeal for me. First, I had to get a temporary nephrostomy tube to save my kidney since my tumor was blocking it from draining properly. It was held in by one stitch. The pain was unbearable, and I could not sit or lay comfortably with it. I needed pain meds just to make it through the day and get some rest. Normally, I would do everything possible not to take painkillers, but by that point, I could not think or sleep without them.
Next was my procedure. Radical cystectomy with radical hysterectomy and removal of my pelvic lymph nodes. I had massive complications. I was supposed to be away from my home for three weeks. The complications caused me to be away for two months. They had problems getting IVs in me, so I ended up with a central line, which in turn, gave me a bacterial infection. I felt even closer to death at that point.
I also ended up with an internal abscess and fluid collection in my abdomen. Drains were put in, causing even more pain—immense pain—as they ended up hitting nerves where anytime I moved, pain shot through my entire body. I was moved back and forth from the hospital and rehab facility over roads that jarred my entire body and caused more pain.
By the time I was released, I had just enough time to enjoy my birthday and Thanksgiving. The week after Thanksgiving, I saw my oncologist in the office, got my port, and started chemo.
At the time, I thought that the procedure was going to be the worst part of things. Boy, was I wrong. The dense doses of MVAC I received broke me even more. I was barely able to make it to my treatments. I got to the point where I did not feel safe driving myself. Even the thought of food nauseated me. I looked around at all the flip phones in the chemo suite and at all the people who were much older than I. They were nicely dressed, the women had make-up on and were talking about plans for lunch or dinner with friends and family. I was in a wheelchair and needed assistance getting to the bathroom.
I was scheduled for six rounds. I completed four on schedule. The fifth was pushed back a week. The six was canceled. I never got to ring the bell. I was grateful to have that last round canceled. My body was screaming “UNCLE!”
To this day, I am still not sure how I managed to stay on my own at home for as long as I did. After my fifth round, I was too weak to get back up the steps of my apartment and I ended up staying at my friend’s mother’s house for a few weeks. One day I woke up and tried to get up to get some breakfast, when my legs gave out from underneath me. I could not get up, and I was taken to the hospital by ambulance. I was admitted for a blood transfusion. That was quite easily one of the worst nights of my life. After that, I was back to rehab for a couple of weeks.
I returned to work on a Monday, just in time to keep my job, after getting discharged from rehab the Friday before. Getting through bladder cancer was one of the hardest things I have ever done.
Yet, I have some things to be thankful for due to bladder cancer as well.
I have met some amazing friends because of cancer. I lost a couple as well.
I have an amazing medical team now who takes great care of me, listens to me, and includes me in the discussions of my treatment. They are also a team that finally allowed me to obtain a hysterectomy, which I had wanted for twenty years.
Bladder cancer showed me that I am tougher than I ever thought I was.
Bladder cancer is still teaching me to be patient and gentle with myself.
I found acceptance and understanding in three circles of communities on the local, national, and international levels: bladder cancer, AYA Cancer, and ostomy communities.
I learned who in my life genuinely supports me and who did not.
I have found the strength and courage to start chasing after the things I really want instead of staying in a dead-end job where I was becoming increasingly dissatisfied.
I have learned to face my fears while standing on my own, yet still have space for allowing others to help me.
Overall, dear bladder cancer, fuck you! And also, thank you. I would not be the person I am today without the experience, yet it was an experience that no one should have to endure.
I would not wish you on anyone, but I am grateful that you brought certain individuals into my life and made room for certain opportunities.