Bladder Cancer Diagnosis and Removal (Cystectomy)

Calling my mom in 2019 to tell her “Mom, ... I have cancer.” was the most brutal phone call I have ever made in my life. The next was calling my dad. Thankfully, my mom arrived not long after this time of multiple diagnoses. She is a retired nurse and THANK GOD. She wrangled the doctors and nurses and asked “What in the actual hell is going on?” We finally got answers.

I had a hemoglobin of 4. Yes, 4. At 6 you start to shut down. My white cell count was 37. At 10 they admit you to the hospital. I was anemic, iron deficient and critically dehydrated. I had a mass the size of an actual grapefruit in my pelvis. I was dying.

The next few days were chaotic and painful

The next 3 days are honestly a blur. Countless doctors argued if this was GYN cancer or Urology. Pain, immense and constant pain. Bags and bags of blood. I stopped peeing. My joints started to lock in place. No one would take ownership and make a plan. A biopsy was scheduled for Friday and I was placed on NPO. I hadn’t eaten since Wednesday night. My lips chapped and bled. The biopsy was rescheduled 4 times. For 3 days I was not allowed to eat or drink. My mom and husband begged the staff to let me have even some ice chips. Their response was that the IVs were more than enough.

We finally got a biopsy done late Sunday. The doctor who did it specializes in kidney stones and erectile dysfunction. He got a bad sample that pathology couldn’t read. At this time, my Foley catheter bag and nephrostomy bag were both bright red with blood. I was out of my mind in pain.

A new hospital and a new hope

Then an actual angel appeared. The doctors were not telling us anything. Not my lab results, not what was going on or what they were going to do. Our night nurse read aloud my hospital notes as if she were talking to herself so my mom could hear what was going on. Then our savior showed up. He was a traveling oncologist who gave my mom his personal number and told her he would call her shortly.

His phone call was basically an order to get me out of that hospital and to Emory University or I would die. We fought for two more days with the staff at this current hospital for my release or direct transfer. They refused or said we could go AMA (Against Medical Advice). On Wednesday, July 30th, I was finally released. With nephrostomy in tow, I went home to sleep for 24 hours, eat real food, and pack my hospital bag. On Friday, August 2nd, I admitted myself to Emory University Hospital. Remember that date? On that date, I should have had my follow-up ultrasound with my gynecologist. She admits now that she thought something was going on, but figured my ultrasound could wait.

My admittance to Emory is fuzzy. Lots of tests, lots of exams, but more importantly the best GYN Oncologist. He diagnosed this as a mass in my bladder in about 15 minutes and called the top urology oncology surgeon at the hospital and proceeded to tell him I needed surgery NOW.

Surgery denied... almost

I spent a few days on the Med/Surg floor getting stabilized and prepped for surgery. The surgery almost didn’t happen though. On August 7th, one of my surgeon’s assistants said they were going to send me home and schedule my surgery in a month. At this time I had a nephrostomy bag full of blood. Another catheter was placed with a bag full of blood. And I was on a cocktail of oxycodone, Percocet, Oxybutynin, and Tramadol around the clock. Going home would have been a death sentence via infection, blood loss, or overdose.

As my whole family was crying and panicking about what to do, the hospitalist came by my room and saw the chaos that was happening. We told her what had just been revealed to us and she said, “Nope, not happening.” I don’t know who she called and escalated me to, but 30 minutes later she told us I would be having surgery tomorrow. They presented my case to the tumor board that evening and got approval immediately.

At 5:30 am on August 8th, 2019 I was wheeled back for my radical cystectomy (bladder removal). 10 hours later I was missing a bladder, lymph nodes, uterus, cervix, and a good chunk of my vaginal canal. I was given an ileal conduit (stoma with ostomy bag) and I woke up pain-free for the first time in weeks.