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Riding on perseverance (56 days till “The Ride”)

April 28, 2012

   This morning, I shot up in bed and thought to myself, “What am I getting myself into?”

   I was thinking about the television interview I’d be facing a few hours later. I always said that I would do anything within legal and decency limits to raise money for a good cause, but I was beginning to doubt that I wanted to wobble and sway down the street on camera. I made the plans to talk with a local news reporter a few weeks prior, and at that point, it sounded like a great idea to invite her to shoot footage of me learning how to ride – an adult falling off a bike makes for great television, and the exposure would be great for my Ride for Roswell team. But I just wasn’t in a cheerful, giving mood.

   I was hoping that the feeling was a residual of the horrible day I had yesterday. Every once in a while, I get discouraged, which makes me feel somewhat ashamed because as a cancer survivor, I should be happy to still be alive and kicking, right? While the new outlook on life has been strong since my treatment in 2004, it has been almost impossible sometimes to stop the slide into depression and despair, especially when life beats at me from several directions. Then guilt sets in, and I get lost in my own mind, arguing with myself about how I know things aren’t ideal at the moment, but I should be thankful for the second chance I’ve been given, but it isn’t wrong to want more and better out of life, but I should just be happy.

   The human design would have been so much better had the brain come equipped with a pause or an off switch.

   I attribute my funk largely to a survey I took yesterday. I am grateful that the Vanderbilt University School of Nursing is studying the effects of lymphedema on patients, but some of the questions forced me to delve into my own feelings about having a left leg that is about 10 percent larger than the right. The questions focused on symptoms from physical to mental, and the latter, I found, are the issues with me. Luckily, I have never felt pain with this condition. A part of me wonders if that is why my doctor did not take me as seriously as I would have preferred. Mentally, however, I have been worried about my condition. What if the swelling gets to the point where it can’t be controlled? I learned at Roswell Park that my situation is as ideal as it can be at the moment because when touched, my skin “pits,” meaning that it holds an indentation when touched. If it were to have been too fibrotic, hardening would have begun and the swelling would have been harder to reverse. I worry about everything, so I fear a future when my leg becomes gigantic, hardened with fibrotic tissue and the only course of correction being amputation.

   Other questions also cloud the mind. What happens when I get older and I can’t bend over to wrestle on a compression stocking? Why can’t my insurance company give me a straight answer on if my compression bandages and stockings are covered? Or Billy’s favorite question, “Why can’t they just put a drain at the bottom of your leg and make the stuff come out there?”

   The survey required me to answer yes or no to questions covering these topics and to rate how heavily these issues weigh on my mind. I began to realize they are ever-present concerns, and I became frustrated because there is no cure for this condition. Other questions focused on how I feel about my appearance and whether the condition causes depression or anger. I do usually try to look at the big picture to keep myself happy.

   At least I survived cancer.

   At least I have a diagnosis and treatment plan for the swelled leg.

   At least I still have the leg.

   Yet this line of questioning made me realize that I am worried about the appearance of the leg, especially with summer approaching. I can no longer wear shorts or knee-length skirts without looking odd because I must wear a compression stocking on my left leg to keep the swelling in check. All that muscle toning I’ve been doing since 2002 seems wasted now. I no longer can wear flip-flops. I have to watch which shoes I wear altogether because if the left shoe it too tight, the lymph fluid collects on the top of my foot. A few hours before taking the survey, I stopped at a store to search for footwear for the summertime, and I was forced to settle on the equivalent of ballet flats because open-toe shoes are now out of the question. I also had purchased several ankle-length dresses for upcoming beach events and weddings so my “fat leg” (this is how I affectionately refer to the swollen appendage) would not be a distraction.

   Yeah, this all makes me angry and frustrated at times, as vain as that seems. On days when I’m in a bad mood, I decry to myself the unfairness of it all. But I always come back to reality: it could be infinitely worse. That is where my mind is 95 percent of the time. The other 5 percent is what I have to really concentrate on so I do not fall into a permanent funk by concentrating on the negatives, because it would be a shame for me to survive cancer and then be defeated by my overactive brain.

   So, as I sat in bed and reviewed the hostilities of the day before, I realized that I had to focus on the positives and bring myself out of the depression. I thought about canceling the interview, but I reconsidered because I knew that talking to the reporter would cheer me up. I love raising awareness and money for these causes, so the interview was just the medicine I would need.

   Having been a reporter for several newspapers, I was completely comfortable conducting interviews, but I have never become accustom to being on the other side of the questions, especially when there is a large camera and a blinding light pointing at my face. I think I handled the situation pretty well. I do regret avoiding one discussion point. When the reporter asked me about the type of cancer I had, I declined to discuss it. It’s a sore point, even seven years later, to discuss no longer being able to bear children by the age of 29. By then, I was pretty sure I was done with producing more little ones, but I felt as if a piece of me was torn away with my uterus, not being able to make that choice anymore.

   I am forever grateful that I visited the doctor regularly and had annual Pap smears. Had I not, this disease would have been caught too late, and my prognosis may have been grim. Early detection is so important. The co-pays, time in the waiting room and uncomfortable tests may be inconveniences, but they also can be lifesavers. These are all sentiments I wish I had shared on camera because they may have prompted maybe one woman to stop, think and make an appointment.

   The reporter then asked how the swelling came about, and I explained that during the surgery in 2004, lymph nodes where taken to study so doctors could see if the cancer had spread, and this led to the lymphedema. The therapists at the Lymphedema Clinic at Roswell Park explained to me that the taking of the nodes disrupted the flow of lymph fluid, causing a back-up of sorts into my leg. The symptoms, however, did not surface until four years after surgery, and I mistakenly thought my ankle was swollen because I had rolled off a cute, high-heeled sandal. As time passed, the swelling moved slowly up my leg until the whole appendage was puffy.

   Then the reporter inquired about how I ended up turning to Roswell. After several years of X-rays, ultrasounds and CT scans, I ended up at an emergency care facility, where the doctor immediately connected the swelling to my cancer treatment. When I heard cancer, I thought of Roswell Park, and within minutes of beginning my research, I found that the center had specialists who treated the condition.

   After the half hour Q&A, it was time for the fun part. The reporter packed up her gear so we could head outside, where she planned to videotape me riding the bike. What makes for better television than an adult doing something stupid, right?

            I was excited to be showing off my new bike to the world – or Western New York anyway. It was quite the ordeal settling on the right ride. First, it had to be green. That was nonnegotiable. Second, it had to be shorter to support my 5-foot-2-inch frame. Third, it had to be green.

   I found the perfect bike at an area box store in February, but it was labeled for boys. Emerald green and standing at just the right height, it screamed “Lisa!” But I could not get over that label. What made it for a boy? The center bar had a slight angle compared to the other boys’ bikes on the rack, but the bar on the neon-pink, girly bike next to it didn’t tilt much farther down. I didn’t see much of a difference, but I hesitated, holding out for the perfect one that was made specifically for a woman. The more I searched, however, the more I realized that I strongly disliked all the pastel frames I was finding on bikes meant for people my age and that I really just wanted the green one.

   I visited “Greeny” two more times before finally deciding to make the purchase in mid-March. As I approached the rack where my new wheels had waited for me all this time, I noticed that most of the bikes were gone – along with MY bike! It turns out that the store had a run on them because the temperatures spiked into the 70s during the middle of winter. I was forced to turn to the Internet to find something quick because I only had one month left until Stick it to Cancer 2012 and my first ride. After much searching, I found the Mongoose 24-inch Boy’s Maxim Mountain Bike with dual suspension. Even though it wasn’t my first choice, I still dubbed my new find “Greeny.”

   Green bike, check!

    As it was time to show it off, the reporter dug out a tripod from the news station vehicle and followed Patrick and me up and down my street, the span of a block, for about an hour, angling the camera to catch my every move. I’ve never been a television reporter, but I imagined the shots she would need to tell the story, so I wanted to be as patient and helpful as possible. She filmed everything, from me clipping my helmet to climbing onto the seat to ringing the bell to tossing the bike when my balance was lost. She then hoisted the camera to her shoulder and decided to grab some tighter shots of me riding, bemoaning the fact that she left her sneakers in her personal vehicle. As I rode, I could hear her jogging behind me. The clop, clop, clop of her heels told me that I was riding at a pretty decent pace for a beginner.

   Next, it was time to set me up with a microphone so she could record my moans, groans and gasps. I was wiped out after the hour, so I was having a hard time keeping my balance toward the end. A final toss of the bike and the statement, “That’s enough for one day,” and I was done.

   After the reporter wrapped up the interview, it was time to rest, and I realized that the exercise and discussion placed me back in the right frame of mind. I felt great, even if I really hadn’t gotten much further on my lessons. With less than two months to go to accomplish this goal, I knew that positivity was going to be the strongest force moving me forward.


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