Posted on March 19th, 2009 by
Fierce optimism and an indefatigable spirit led Carol Harlig through two bouts of breast cancer and onto a path of resolute advocacy.
By Diana Price
Carol Harlig was 47 years old and in excellent health when a routine mammogram detected ductal carcinoma in 1991. Her stage II breast cancer diagnosis was followed by a lumpectomy, lymph node removal and six weeks of radiation, which was then followed by six weeks of chemotherapy. Carol decided early on that she would add something else to her treatment regimen: a prescription for a positive attitude and a refusal to accept any negative thoughts about her situation.
Fourteen years after her initial diagnosis, Carol radiates the same positive energy that she believes helped her beat breast cancer. “I made the decision early that attitude is everything in fighting cancer,” she says. “You have the opportunity to make a choice: Your glass can be half-full or half-empty. I decided mine was half-full.” Having made the decision to focus on the positive, Carol made it a policy not to allow herself to be surrounded by negative people or to listen to downbeat stories about others’ experiences with cancer. “People want to tell you the craziest things when they find out you have cancer,” she says. “They would start in on these awful stories about some friend or relative who had a terrible diagnosis. When that happened, I would just make up an excuse to remove myself from the situation. I didn’t want to absorb any of that negativity.”
Carol also determined that she would be an active participant in her treatment. She began by interviewing to find a team—which would ultimately include a surgeon, an oncologist and a radiologist—with whom she felt truly compatible. “I decided that if any doctor patted me on the hand and said, ‘We’re going to take good care of you,’ that that person would not be part of the team. I didn’t want to be ‘taken care of,’ I wanted to be an active participant in the team.” She recalls a saying that she heard around that time that she particularly liked: “We have to stop treating doctors like gods…but first we have to get up off of our knees.” There was no doubt that Carol was up off her knees and determined to beat cancer.
As she began treatment and became familiar with her team, Carol made a conscious decision to get to know everyone who had a hand in caring for her. “I made sure that the entire staff in each facility knew who I was so that I would not be just another number or just another case. Ultimately, everyone knew me by name, and we became great friends.”
Carol’s determined optimism would see her through the most challenging moments in treatment. Her radiation regimen produced raw breast tissue, and treatment had to be suspended so that the skin could heal. She faced nausea and fatigue during her chemotherapy treatment, which she combated by eating lots of small meals during the day, loading up on protein and taking short naps when she got too tired. She discovered that smoothies made with soy milk, protein powder and bananas provided her with a good source of nutrition and made her feel better.
But Carol also acknowledges that it wasn’t always easy to remain positive. Some days it was all she could do to make it through 15 minutes at a time, facing down the clock and realizing the accomplishment of making it through even that short period of time. “I would just try to focus on facing the next small space of time, and then when I looked at the clock, 15 minutes would have passed and I would know that I could make it through another 15 minutes.” And every day she would allow herself a five-minute pity party. “I would set the timer and allow myself to cry and scream and rail at the world. When the five minutes were up, that was it.”
Carol would mark every day of treatment by drawing a big red ‘X’ on her calendar. On her last day of chemo, she strapped on Rollerblades and skated into the lobby of the Mountain States Tumor Institute in Boise, Idaho, where the staff, whom she had taken such care to get to know, burst into applause. In addition to her Rollerblading adventure, Carol celebrated the end of her treatment with a trip to a spa and a chance to indulge in every treatment the place offered—one of the many “carrots” that she and husband Len had dangled to help her endure the months of treatment. She laughs, remembering going in for a massage while she was there and having to explain to the masseuse that she needed to remove her wig so that it wouldn’t get oil on it. “You learn to laugh at funny moments like that,” she remembers, “because you have to laugh where you can.”
Unfortunately, that trip to the spa would not mark the end of Carol’s cancer as she had anticipated. In 1994, three years after that trip, she was diagnosed with breast cancer for the second time. Again, the mammogram detected a ductal carcinoma. This time the cancer was determined to be stage IV, and again Carol faced a lumpectomy, lymph node removal, chemotherapy and radiation.
Unhappy with her oncologist’s response to her second diagnosis, Carol chose to find a new medical team to see her through treatment. She again interviewed doctors and found a team she felt comfortable with. She then endured a “chemo sandwich”: three-and-a-half months of chemotherapy (CAF) followed by six weeks of radiation and then by another three-and-a-half months of chemo.
“The second time around, it was definitely harder to be positive in the beginning. I just thought, how can this be? I’m healthy. I’m a vegetarian. I work out. I’m a good person. I have no family history of cancer. How is it that this is happening again? But what you realize is that none of that matters with cancer. What matters is how you go forward from the point of diagnosis. ”
One tool that Carol used extensively during her chemotherapy and radiation treatments to maintain her positive energy and sense of optimism was creative visualization. “During chemo, I visualized being in my favorite place, which happens to be on the beach in Hawaii.” Carol recalls. “I visualized lying in a hammock, and feeling the breeze on my skin. I could hear the waves gently breaking on the shore and smell the salt air. I would listen to beautiful music at the same time, and this became my safe haven during treatment.” When it came time for radiation, Carol imagined that if there were any cancer cells left in her body, that they were ice cubes and that the radiation was a white hot light that entered the top of her head and radiated through every inch of her body—melting the cancer cells and flushing them through the bottoms of her feet.
The radiation included in Carol’s treatment plan for her second bout with cancer was only one facet of her treatment that produced more intense side effects than she experienced with her earlier cancer, and she faced some frightening moments. Following surgery, Carol developed septicemia, which landed her in the hospital and ultimately became one of the scariest points of her entire illness. Recovered from surgery, she was plagued with terrible nausea and with excruciating mouth sores during her chemotherapy. She lost an alarming amount of weight because the sores in her mouth made it almost impossible to speak, much less eat anything.
She remembers one night in particular when she and Len were supposed to go to a holiday dance and, at the last minute, she realized that there was just no way that she could go. “I just felt too awful to even move. As it was too late to call our table-mates to tell them we wouldn’t be attending, I urged Len to put in an appearance and explain my absence. He only stayed about 25 minutes and then came home to care for me, but I remember the terrible combination of physical pain and frustration that I felt that night–lying on the floor in our bedroom sobbing and just screaming because it hurt so much.”
Throughout this difficult treatment period, Carol reaffirmed a decision she had made after her first diagnosis to help herself remain positive—she would continue to care for her physical appearance in the same way she always had. A beautiful woman, Carol is perfectly made up and put together as she describes her determination to continue to keep that appearance in place during her treatment. “The world was not going to know, from the way I looked on the outside, that I was sick,” Carol says. She was determined to continue to project a beautiful front in the face of her illness because to do otherwise would be to allow cancer to take something away from her.
“I felt as though I needed to continue to do what made me feel good. I wore the makeup, the earrings. Despite what was going on with my cancer, I knew that my appearance was one thing I did have some control over.” But Carol acknowledges that keeping up appearances during her treatment required a little more work—and, at times, a healthy sense of humor. She remembers several times during her chemo treatments, after she had lost all of her hair, including her eyebrows, when she would forget that her eyebrows were only drawn on with make-up and would wipe her brow, thereby wiping off an eyebrow at the same time. “It’s just one of those things I had to laugh about,” she says.
And Carol acknowledges that everyone deals with the physical changes wrought by cancer treatment differently. “My decision was to continue to wear make up and to wear a wig, but everyone chooses to manage differently. You have to do what makes you happy and what is most true to who you are.”
Maintaining her appearance in spite of the cancer did not mean that Carol did not struggle on the inside. “Believe me, I did my share of yelling and screaming on our back deck,” Carol laughs. “I definitely had my moments of feeling angry and sad.” During those moments, Carol says, it was Len who was her primary source of emotional support. She shakes her head as she remembers his invaluable help during that time. “He was my rock. He never let me know how scared he was.” It wasn’t until much later, after her last treatment was long-over, that Len told her how frightened he had been.
In addition to taking care of Carol emotionally, Len took on the financial and insurance issues related to her illness. “I felt my job was healing,” Carol says, “and it demanded my full attention and was my full-time job.” But she knows that Len had a lot on his plate, and it was especially meaningful for both of them when someone would make a point to let Len know that they were concerned for him also. “It really meant a lot to us when someone would ask how Len was holding up,” Carol says. “It’s a lot to take on, as a caregiver, and it’s nice when that weight you carry is acknowledged.”
Carol was also supported by a close circle of friends. They helped her through by providing meals for her and Len as well as invaluable soul food—love and support that was so critical.
Now 11 years past her last treatment, though she still gets a yearly mammogram, Carol has just recently made the decision to stop seeing her oncologist annually. And while cancer has left her body, it’s still very much part of Carol’s life. That’s because she is committed to helping others facing a cancer diagnosis. She speaks to women who have been diagnosed with breast cancer regularly to tell them her story and to pass on what she hopes can lend some inspiration. She also channels her positive energy and optimism into advocacy and volunteer work. Her efforts have included serving on the board of Expedition Inspiration for five years and raising funds for the Cancer Society’s Relay for Life—almost $25,000 in two years: the most of any individual in the Northwestern United States.
Ultimately, Carol decided she was “healed” when she discovered one day, years after her last treatment, that she had not thought about her cancer even once in a whole day. “That was a real accomplishment,” she says, “because for so long it occupies so much of your mental and emotional space.” Now, free of cancer and continuing to embrace the optimism and energy that saw her through her darkest days, Carol has parting advice for any woman facing a cancer diagnosis: “Remember that cancer is a ‘speed bump’ on the road of life, and that you are a survivor from the moment you are diagnosed.”
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