My Post-Surgery Rollercoaster
Within 2 weeks of being diagnosed, I had my radical cystectomy, hysterectomy, and received my stoma! Some bladder cancer patients have a little more warning of this impending surgery; unfortunately, I didn’t have this opportunity. Because my cancer was found during an ER visit, I was immediately admitted, transferred to Emory University Hospital, and my team determined my bladder needed to come out ASAP.
This meant I faced pre-surgery complications that many patients will never encounter. I was severely anemic and iron deficient. I was on blood transfusions around the clock. My white count was raging which caused my resting heart rate to sit somewhere in the upper 90’s to low 100’s. From being so weak, I was also battling a low-grade infection. This made for an incredibly ill young woman facing what is arguably one of the harder surgeries a cancer patient can have. We knew that my low health would make for a risky surgery and difficult recovery.
Making it through the bladder removal surgery
Thankfully, I pulled through the actual surgery as smoothly as possible and woke pain-free for the first time in 2 months. Then the hard part began. Because I had very little time to prepare for surgery, my family and I really had no clue what recovery would look like, and honestly, until I saw the urostomy stuck to my stomach, I didn’t even know what one looked like.
The first week of recovery
My first-week post-op was dedicated to sitting up and walking. I shuffled down the hospital ward halls, dragging my IV pole as much as I could. It was so hard regaining strength and coordination to do simple things like walk or even sit/stand up on my own. Those few days of recovery in the hospital went pretty smoothly, and I went home in 7 days.
Readmitted to the hospital due to sepsis
Two weeks later, I found myself back in the ER with a raging 103 fever. Enter sepsis. Fighting through sepsis was the worst. I was still very weak and sore from surgery; now, I had an out-of-control fever, antibiotics that made me incredibly nauseous, and I ended up with another nephrostomy tube because my left kidney didn’t look right on one of my CT’s (story on that later on). From being so ill, along with needing to be NPO often, I was having difficulty maintaining my weight. I lost 20 pounds between surgery and this first re-admit.
Another complication: kidney damage
I conquered sepsis and made it back home for one more week before another complication struck. During what should have been my radiation consultation, my doctor noticed I was running a low-grade fever. He sent me over to the lab for a blood draw and had me go home to await results. The following morning, I received a call from my surgeon saying my white count was at 47,000! I was directly admitted back to the medical oncology floor for a flurry of tests to find out what was going on inside my body. Several pokes and one nuclear scan later we determined that the cancer in my body was causing the high white count. We also discovered at this time that either due to my tumor or defect my left kidney was incredibly damaged. This kidney had pretty much shut down and I was running off one kidney! Once more I was sent home while my team tried to expedite chemotherapy to get my cancer under control.
Experiencing severe pain
This time, I made it home almost 3 weeks before the worst pain of my entire life hit. It started with just a soreness that would originate in my right flank and shoot down my leg. I would stretch and walk to work it out, but the throb always lingered. I went to Emory to drop by my oncologist’s office to ask about it, and it was written off as just some post-surgical pain. But the pain got worse, and worse, and worse, until I found myself lying on my bedroom floor screaming.
Back to the emergency room
So back to the ER we went. We discovered at this time I had 4 very swollen lymph nodes, with one almost baseball sized crushing my sciatic nerve. I spent 3 days on high doses of Dilaudid and fully convinced there were cats roaming my hospital room (I am very sensitive to pain medication). During this time, my oncologist was charging through the red tape for me to be approved for immunotherapy as a first source of cancer treatment.
I spent 24 hours home and then had my first round of Keytruda. From that point forward, things finally started to improve. Within 3 weeks, I was fully weaned from pain medication. After my first set of scans, we found my lymph nodes had all shrunk by at least half. It took a solid six months for me to finally feel almost 100% after my surgery.
My recovery was full of complications
Recovery from a radical cystectomy is not linear. There will be setbacks, and more than one bump in the road. Having at least one bout of sepsis is very common with folks who have a urinary diversion. Regaining strength takes time and commitment. Such a large surgery impacts your appetite, bowel movements, and your overall mental health. I wish I had been counseled more on what to expect after my surgery, taught ways I could have prevented my sepsis, and even given assistance mentally coping with everything I was going through. If you are considering or soon scheduling a radical cystectomy, I highly encourage you to do your research. Ask your oncologist and surgeon a million questions and make sure you are set up for recovery success! But just know that you’ve got this and the entire bladder cancer community is cheering you on.
Have you felt misunderstood as a person living with bladder cancer?