It's been one year today since I had my bladder removed.
I didn't know you could live without a bladder before starting this journey, but you most definitely can.
I haven't shared this with many people until now, but I was diagnosed with an aggressive form of bladder cancer at the end of 2020. After having a surgery to remove my initial tumor, due to complications, I ended up spending Christmas Eve and Christmas Day in the hospital alone due to COVID precautions, a week after my diagnosis.
What followed were numerous doctor's appointments to get second opinions, two more surgeries to remove tumors, 6 weeks of immunotherapy in my bladder that ended up failing - and ultimately, the decision we made to remove my bladder to save my life.
It was the hardest decision I have made - and I don't regret it. I now have what they call a "neobladder" – a new bladder made of a segment of my small intestine.
It's been a challenging journey. And yet in the darkness there have been so many bright lights.
James Fratzke, my partner and best friend made sure that I never felt alone - even when we were physically separated in pre-op or hospitalizations due to COVID. He was in it with me every step of the way. My family who encouraged and supported us throughout our journey. My parents who cared for us, prayed over us and took us into their home during my recovery for three weeks after my surgery. Our friends who circled us with so much love, dropping off dinner when food was the last thing on our minds, getting us groceries and sharing encouragement when we needed it most.
It's been a journey. One I'm still processing and learning from. No one plans to get cancer. Even when they told me I had it, it’s hard to believe it or even say it. I know so many people who have been impacted by this disease - who've lost parents and loved ones. I had a 1% chance of getting diagnosed with bladder cancer at my age as it largely impacts males over age 60. I had no genetic mutations or environmental risk factors that pre-disposed me to it. It just happened. I’m thankful we caught it early due to seeing blood in my urine.
My encouragement to others: Don't take things for granted. Take care of your health and your body. Make the doctor's appointments. Follow-up when you don't hear back. Specifically, for women, bladder cancer is often caught in later stages as doctors will dismiss it as a UTI. It’s important to take blood in your urine seriously and make sure they do the appropriate tests to understand the true cause. I’m grateful to have a doctor that did that.
I'm thankful for God's presence and provision on this journey. God doesn't always show up how I expect him to. But, God always shows up. He was with me when I needed him most. And, I’m starting to learn that is enough.
The good news is that my surgery was a success and my pathology was clean!! The cancer did not spread beyond my bladder. I've had clean scans since then. It still scares the heck out of me when I go in for surveillance appointments and wait for the results. That time between doing the test and finding out the results is the worst possible waiting place. It is a reminder that life is precious and beautiful, and the future is not guaranteed.
I’ve learned that life will knock the wind out of you. When that happens, you don't have to put on a smile. You don't have to pretend that everything is okay. Crying is a form of strength. Asking for help is a form of strength. There will be good days and bad. But, you never know what beauty is waiting for you on the other side.
After almost two years on this journey, I’m starting to feel ready to share more of my story. Sharing this with you is, hopefully, just the beginning.
