In late June of 2012, an unusual symptom started to appear on my toilet paper: blood. For a few weeks I excused it as spotting, but when the spotting didn’t stop, I took a closer look. The blood was coming from my urine.
Time and time again when I read another woman’s story about their beginnings with bladder cancer, I see the same story emerge: “I went to the hospital and they gave me antibiotics, but nothing changed.” That’s how it began for me as well. Then I went to an OBGYN who did a pelvic exam; she said everything felt normal. Finally, in August, when the bleeding worsened and darkened the toilet bowl to the color of cranberry juice, I landed in the urologist’s office who told me to leave, get insurance and come back, because whatever was in my system—be it a kidney stone or an “unlikely” cancer tumor—a CT and surgery would follow.
At that point, I was worried, but I didn’t allow myself to go down the rabbit-hole that is the Internet. Also, I didn’t have a lot of time on my hands: I was an adjunct college professor with a part-time job at a law firm and a start-up business. I had been spreading myself thin for years, and there I was again without much time to find, money to afford, or immediate access to insurance. It wasn’t until mid-summer that I learned I could get insured through my partner’s school district, which had just begun offering insurance to domestic partners. The only hitch: I’d have to wait until October to be seen.
Even before the insurance was in place, I made an appointment for a CT on October 2nd. My partner and I sat in the urologist’s exam room, and I hardly heard a thing the doctor said once I spotted the tumor on the monitor. She slowly moved through the 3D pictures of my ureters and kidneys, but all I could see was the obvious bump on the wall of my bladder. It was the end of the day when she suggested a quick 5 o’clock cystoscopy, and that’s when I saw the tumor blown up on a monitor. With my legs in the air and velcroed down, the doctor between my legs, the nurses buzzing around the exam room, and my partner at my shoulder, I knew that I was facing my worst nightmare.
What started out as months of blood in my urine was rather quickly diagnosed as a rare, muscle-invasive bladder cancer: squamous cell carcinoma. Because we live in such a small town that doesn’t have the facilities or resources to deal with a rare cancer, the doctor referred me out of state. In mid-November, we traveled to Mayo Clinic in Rochester, Minnesota.
Though the doctors at Mayo have seen this cancer before, they seemed perplexed that a 35 year-old, white woman from the Northwest United States had it. They asked me unusual questions like, “Have you ever been to Egypt?” “Have you ever worked in a chemical or dye factory?” and of course “Have you ever smoked?” I could only answer yes to the last question, but I hadn’t smoked since 2008.
What I wanted was for the doctors to open me up, right then and there, and pull that sucker out of me. In my mind, the faster the tumor came out the better. But in the beautiful church-like hospital that is Mayo, my oncologist broke some difficult news: there hadn’t been any studies on my particular cancer and probably wouldn’t be for the next 100 years. There was good news, though — the cancer hadn’t traveled to adjoining organs, or invaded my lungs or lymph nodes (that they could see). With a confident yet apprehensive look on their faces, they laid out a plan.
Because of my youth and good health, they decided on a difficult four-course medication titled MVAC (Methotrexate, Vinblastin, Adriamycin, and Cisplatin). I’ve only had two treatments, but I’ve already lost all of my long, curly hair that I was once known for. At first I was really worried about losing my hair, but its absence has been the least of my insecurities. I still have my smile, a wonderful and supportive community, fabulous friends and family, and a committed partner.
At the advice of my doctors, and to reduce my exposure to germs (and possible infection), I’ve taken a semester off from teaching. I have to undergo 4-6 months of chemotherapy, and then return to Mayo for surgery. There, my doctors will remove my bladder, uterus, ovaries, and some lymph nodes. They’ll also use a section of my bowel to recreate a bladder for me. Between now and then, I need to choose its location — will we put it where it used to be (a “neobladder”) or will it go behind my bellybutton (an “Indiana pouch”)? While one option sounds wildly science-fictiony and innovative (it’s not true, it’s been done since the 1800s), the other sounds like an adventure (if I get to pee standing up, can I get a leather vest, too?). All of this, though, is just the development and the plan. There is so much more to cancer than this.
I’m not going to say that cancer is a gift, but it’s an opportunity. I’ve seen friends who’ve I’ve jokingly called “douchey” open up their hearts and provide financial support during my time out of work. I’ve been given prayers, meditations, gifts, and good will from friends, family, and strangers of all faiths who want to see me get through this successfully. I’ve become reacquainted with myself, the things I love, and learned how much I overextend myself to others. I’m learning how to say “no” and how to readjust my beliefs about people and life. I’ve made new goals to do things I love not for the sake of making money to survive, but for the sake of making time to do the things I love for the sake of survival.
Though there are times I feel alone, I’ve become a part of a very large family. Not only is that family the wide world of cancer survivors, but the strangers and acquaintances who’ve stepped up to help me. As a woman who has long prided herself on being independent and not asking for help, I’ve had to learn to accept help and ask for it, too. I told my therapist that I was having a hard time feeling worthy of the generous gifts and time that people were giving me, and my therapist asked me what I’d do if my best friend had cancer. I immediately started listing off the fundraisers, websites, cards, candies, phone calls, traveling, and everything else I’d do for her. She asked me why, then, was I having a hard time allowing others to do those things for me? It was a difficult question to consider, but it made me realize I needed to change the way I receive love in return. I’ve learned (albeit, slowly) that asking for help isn’t easy, but it’s something that I have to do, and something that has generated so much healing not only for me, but others as well.
Though I don’t know if the chemotherapy will destroy this cancer, or if the surgery will prevent it from spreading, I’m heading into this challenge with optimism and an army of supporters. And despite the fact that I’m sometimes frightened and feel weak, I’m grateful that most of my days are filled with optimism and strength, and excited for all the ways in which I’m being challenged and enlightened.
In his book Anti Cancer: A New Way of Life, Dr. David Servan-Schreiber writes, “In Chinese, the notion of ‘crisis’ is written as a combination of the two characters: ‘danger’ and ‘opportunity.'” I’m taking this opportunity to recognize the danger of my old ways and take the opportunity to develop habits anew.