One year ago, today, I was diagnosed with bladder cancer. A small camera was inserted into my meat-sprinkler, and my doc discovered a ping pong ball sized tumor that had been growing for about two years.
Over the course of those two years, I’d visited two different doctors who both did blood and urine tests, told me I looked perfectly healthy and probably had a bad UTI, and sent me home with antibiotics. I took comfort in their reassurance because I WANTED everything to be fine, and every time blood would show up again, I’d reassure myself that two doctors and all those tests couldn’t possibly be wrong… but my health continued to deteriorate. I was getting sick far too often, and with multiple illnesses simultaneously. Small, everyday cuts and scrapes were taking far too long to heal, and I felt old and tired.
Finally, it got to the point that I could only urinate small amounts at a time, and there was always at least a little blood present, and I kept telling myself that I would get better because I was too afraid to face the possibility that kept clawing at the back of my mind – that, just like so many of my friends and family before me, I might have cancer. At that point, it was my greatest fear.
I called my older brother Jake, my personal PA who’s always looked out for me, and told him everything. He hooked me up with who he deemed to be one of the best urologists around. Dr. Vicena listened, and when I insisted that he look deeper, he did – literally.
I vividly remember sitting on the edge of the table, naked, surrounded by three complete strangers, staring at a tiny color monitor when the doctor, who I’d met only a couple minutes before, said, “Yep, there it is. There’s your tumor.” He pointed out an ugly, fleshy outcropping on an otherwise beautifully pink and highly-vascularized wall of tissue. I didn’t know the size of it at the time, but it’s camera close-up made it look like a malformed Lovecraftian horror that I’d just realized was growing in my makeshift womb.
He told me right up front, “We won’t know for sure if it’s cancerous until we test it, but from what I can see, I think it is, and I think we need to get it out.”
This video picks up about 5 minutes after that first appointment:
A week after the surgery and chemo treatment, I felt better than I had in years. It was as if a bottleneck or a kink-in-the-hose had been removed from my body’s vital flow of energy. I felt better almost immediately, and did for about a month, despite cringe-worthy pain during urination (as was to be expected, right?). What I didn’t know, yet, was that the chemo treatment has essentially burned off the entire inside lining of my bladder, and as the new lining began to grow, my bladder would shed scabs, blood clots, and old pieces of dead tissue, some as large as an M&M – and all these pieces had to be passed – just like kidney stones.
On average, I’d pass two or three a day over the next two and a half months. Some evenings, I’d get into a hot bath and guzzle cheap canned beers and just let myself bleed into the water until it was too opaque to see into. THIS was the hardest part of the whole experience – not the diagnosis, not the surgery, but the healing. The waiting. The desire to pass the time absent-mindedly and the inability to adequately distract myself from it. The pain was a constant, nagging companion. It wasn’t always terrible, but it was ALWAYS present. In every moment, like a mosquito buzzing in my ear.
I slept in short bursts. Two hours at a time, at first, on as many drugs as I could safely consume. I became an expert in mixing and overlapping my various pain medications. My life revolved around watching the clock for the next 4-hour mark. I rarely left my house, and when travel was required, I had to plan it around rest stops, because I had to pee about every 30 minutes, and each experience was a ten-minute exercise in zen meditation.
Through all of this, I kept reminding myself that my experience was SO MINOR, relatively. My entire cancer experience was such a brief episode in my otherwise charmed life, and my pain, while nagging, wasn’t anywhere near the debilitating weight under which so many others are pinned indefinitely. It was a hell of a wake up call. I realized that I’m not as tough as I thought I was, and that chronic pain could absolutely crush a person’s spirit and likely drive them insane. I was finally aware of the iron will that chronic pain sufferers must possess – something I suppose I’d absolutely taken for granted.
Something else I’d always taken for granted was my health. I’ve always eaten whatever I wanted and exercised as little as I pleased, and I’d skated by relatively unscathed for over 30 years, but this experience, like pulling aside a curtain and gazing into the vast existential void, really put my tiny life, and the degree to which I took it for granted, in perspective.
Earlier this week, I had my one-year scope (yep, camera up the meat-sprinkler), and I remain cancer-free. Even though I’m technically only back to my default state, I feel SO much more grateful for it.
If I could codify my experience into three distinct lessons, it would be these:
1. Don’t ignore your body or take its health for granted. Ignoring recurring issues and hoping they go away is just another way of running from the unknown things that scare us, and if we run too long, we’ll realize that we’d been bitten by it miles ago, and the running has only helped its venom surge through our bloodstream.
2. Don’t allow others to make choices that, ultimately, only affect you. You’re the captain of your meat-ship, and if it sinks, you’re the only one who’ll drown. Take an active role in your own life. For all we know, this may be the only one you get, so treat it with care.
3. Have compassion for those suffering around you. Suffering is subjective, and until you’re living that person’s perspective, you can’t know how difficult their trials are for them. The little old lady who “always complains about aches and pains” might be living in a hell you can’t even imagine. The best thing you can do is listen and love them, and be thankful you’re in a position to be able to do so.
congrats to you. im on a 41/2 yr bladder cancer battle. CIS is very very aggressive, and was ready to have it removed. After a 3rd opinion the new surgeon wanted to try to help. So a yr later cancer stopped growing and i have 18 months of mytomycin and other chemos in my bladder. Life goes on.
Great to hear about your journey. I had a bladder tumor removed 2 months ago and felt great after a week long recovery. I also had a single chemo treatment post-op. Life was good and then 2 months post surgery I was pissing blood & clots and had the absolute worst pain ever. I just had another TURBT yesterday bc the doctor was so concerned he wanted to get back in to biopsy my bladder. I still don’t know exactly what’s going on, but it sounds somewhat similar to your story and the bad reaction to the post-op chemo. I’d love to chat with you more about this. Please email me if you’re willing: [email protected]
Glad YOU found the tumor. If it weren’t for your insistence to check deeper, you might have gone years with that cancer in you, growing day by day.
I agree, Annie. I tell this story to try to bolster the confidence in others to take an active, rather than passive, role in their health. Do research. Ask questions. Make demands. It’s your money and your body. Nobody will care as much for it as you do. Thanks for reading, Annie!
Hi Eric, hope you are cancer free now. I too diagnosed with bladder cancer 1 month ago with low grade. I had turbt using mitomycin.
Please provide some suggestions towards food habits.