It had been quite a year. In October 2011, my husband, Curtis, and I moved to Kansas City after three years in the Bahamas. We returned to the states with two kids under the age of three—three dogs (two ours, one a friend adopted) and three years of possessions. We were deciding where to land—California, where I’m from, or Kansas City, where my husband is from.
With his parents in a position to help with our children, a network of friends and a reasonable cost of living, we decided on Kansas. After a few months, we found a home and I found work at the local Crate and Barrel as a manager. Soon enough we were juggling our version of normal. I turned 40 that December, our daughter turned three 30 days later, and by the time our son turned one in June 2012, we felt fully integrated into our new life. As fall 2012 approached, I made doctor appointments for the kids and me so we could get our regular visits checked off the list. As my annual OB/GYN appointment came to a close, my doctor handed me a fecal smear test to do at home and mail in.
My mother-in-law picked me up from my appointment and when I told her sarcastically that I had to go home and poop on a stick, she said she always throws those tests out. Not me, I said. I’m a rule follower, my doctor asked that I complete the test, and I think it is best for me and my family. Within a day or two, I sent in my test and promptly forgot about it. Not long after, I got a phone call from a number I didn’t recognize. When I answered, the voice on the other end was kind, but stern. She said she was calling from Quest Diagnostics -- Quest did the processing of my fecal home test – and that my test was complete and, while she didn’t know exactly why, my next phone call should be to schedule a colonoscopy. When she said it again, “this should be your next call,” I felt a chill. I quickly made the call.
The testing starts… and continues
I made my appointment for the first available date and when the day arrived, I was nervous. I remember asking my husband, “What if something is wrong?” He quickly said that I am the healthiest person he knows and he was certain it was nothing. His confidence helped to calm me down. In the back of my mind, I also knew as a diet conscious, fit and active runner I was fit, and had been most of my life.
On the day of my colonoscopy, I checked in, and was informed of what to expect. With my prep completed, I was given a light anesthetic and the procedure followed. Due to the tumor’s location on the anal verge (the canal that connects the outside body skin to the anus), they found it immediately. So while I was still under anesthesia, the staff was making appointments for my MRI and blood work, which took place as soon as my colonoscopy was complete.
The Thursday of my colonoscopy was long and stressful— filled with new information and an overwhelming number of people. However, I was grateful the medical staff I encountered acted with so much urgency.
Waiting for the diagnosis
Without my husband, I would have been lost through all this. At some point in the early part of the process, Curtis peeked at my chart and saw a comment, “likely malignant,” which he kept to himself. So while we knew the location of the tumor we did not know the tumor type. My husband and I waited with worried impatience for the results.
The next day I went to work and my husband left for a trip. I waited for a call about the tests all day. Around 8 p.m., the doctor called to tell me my tumor was indeed malignant, and that I had what’s called anal cancer, stage T100—the very earliest stage you can be.
My first thought was shock followed by shame and embarrassment to have a cancer that is so hard to say. Anal cancer feels dirty and inappropriate; to have to put those words together and utter them. Other than my mother-in-law, who was present when I got the news, and my husband, I couldn’t say it. I couldn’t.
So I didn’t. I lied.
When I called my family, I told them I had colon cancer. I told people at my job I had colon cancer. When I asked my doctor friends for recommendations and referrals, I said I had colon cancer.
I cried. I didn’t understand how I got it. How, having never missed my annual check-up, being a rule follower, how did I get this cancer? Anal cancer. I could not say those words. I just felt overwhelming shame; a shame that would take me years to overcome.
Propelled to fight it
What happened next was nothing short of amazing. Propelled by the forces who are my support systems: my mother-in-law, any and all friends, former classmates, my husband’s siblings, and an incredible number and variety of specialist physicians. I was at my first appointment with my oncologist only three days after the fateful call. More appointments followed that week, and in two weeks I had a treatment plan— chemotherapy and radiation—and was beginning treatment.
Expertise always pays…and even more in medicine
I have to stop here and speak to the care that was taken with the preparations for my specific treatment. While the speed with which this has was rapid my doctors could not have been more thoughtful, thorough and caring. Although my tumor was small, it was in a challenging location for the radiation to hit. In order for the radiation to reach my tumor, the radiation had to be directed through my pelvis—basically through my entire lower abdomen. To direct the lasers, you need tattoos and plates. The plates create barriers with which to direct the radiation. Before getting the plates set, you have to drink a contrast liquid, which I ended up drinking countless times during the process.
My whole treatment lasted six weeks. I had four weeks of radiation, Monday through Friday, and two weeks of chemotherapy, bookending the radiation. All the doctors and specialists I saw were very positive about the outcome. Level T100 is the earliest stage you can catch a tumor.
Today, I continue to be cancer-free. Had I not chosen to take my at-home fecal test just because I had no symptoms, the outcome may have been very different. And while my fecal smear revealed blood in my stool, which is what tipped the medical professionals off, I wasn’t in pain or discomfort.
A year later, when I went to my annual check-up, my OB/GYN told me that there was no scar tissue at all in the radiated area and that everything looked completely normal, and closed by saying “Whoever conducted this treatment got your plates exactly right. You are completely intact!” Even writing this, years later, I still feel the weight of that comment.
Location, location, location
There is another part to the story here. When Curtis and I were deciding between moving to California or Kansas, we didn’t think about medical standards of care, I mean, who would? Afterward, when I spoke with my girlfriends who live in California, they told me that the standard of care to receive a fecal smear test in their state is age 50 for women. The standard of care at my OB/GYN’s practice, was age 40. Had we moved to California, it is very possible that I could have received the test at 50. I may have been at stage three or four when my anal cancer was found and may have been incurable. By that time, my daughter would have been 13 and my son. Deep breath.
In the end the importance of screening even when you think it is silly, embarrassing or unnecessary is the essence of this story, my story. It is also about a simple test and a
community of care givers who I believe saved my life.
What I've Learned
- Don’t ignore your doctor’s orders. One missed test equates lost time. Most the time, that’s not a problem. But when it is, the lost time can be everything.
- Know your state’s standard of care. Don’t be afraid to ask your physician what it is.
- Make sure someone takes the medical journey with you. If you are diagnosed with this or any other serious condition, your brain goes into survival mode. It’s hard to hear and
recall a lot when you are in that mode. A spouse, family member or close friend can listen, take notes, reassure, help research and much more.
- Advocate for the best care you can get.
- Don’t hold shame about a diagnosis. Your story may just save someone else’s life.
- Thank everyone along the way. So many people who work in health care may or may not hear the impact of the work they do. Whether they are testing your samples in a lab,
creating your treatment plan, pushing your wheelchair, ensuring your radiation causes no harm…they all play a role in your recovery. They need to know their work matters
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.