One woman’s story of inflammatory breast cancer.
I deliberately tie the hospital gown two ways — left over right, right over left — to see which best covers my mastectomy scar before exiting the changing room. As I open the door, my prosthetic breast falls out of the bra’s mesh pouch in the plastic bag provided for my belongings. I don’t want anyone to see what I am hauling, but then I wonder how many women in the mammogram waiting room carry my same secret.
Younger women dart their eyes. Older women sit and read paperback books. They remind me of seasoned NASCAR drivers scanning the sports page before a big race. One wearing a business suit takes up three chairs with medical files, laptop computer and day planner. I know she has just been diagnosed. It is like watching me when I juggled and reloaded lifestyle changes into a smartphone calendar. I wonder when the façade of control will slip from her fingers.
I want to ask the row of women sitting across from me, “What are you in here for?” But it’s not like we are in jail. I notice a young girl about the age of puberty staring at the flat side of my chest like I am a carnival act with the two-headed cow and bearded lady. She keeps tugging at her mother’s sleeve with one hand, her little pinky finger points to my lopsided silhouette.
The nurse calls me back to the treatment room with excitement. She gives me the mammogram results: cancer free. A bittersweet feeling comes over me. I knew how to live my old life; I know how to live with cancer. But, living life without breast cancer was something I did not plan for.
How do you mark time? People tend to sift their lives by the major events with family and work. My life centered on serving others.
A career in health and giving comfort
In 1984, I started wild-crafting herbs and made tinctures and salves for friends. In 1991, my studies evolved to aromatherapy, and I blended therapeutic oils for custom orders. Looking for a way to integrate herbal medicine into a more clinical setting, I entered a year-long program in 1995 at the New Mexico Academy of Healing Arts in Santa Fe for a degree in medical massage therapy.
My career divided into two eras. When I first studied, cancer was considered contraindicated for massage therapy. We were told not to touch cancer patients for fear of potential metastasizing. I continued my studies: geriatric massage, comfort touch — a hospice-approved touch therapy — lymphatic drainage and acupressure. In the second era, after massage therapy became a viable adjunctive treatment for some cancers, I studied oncology massage from leading doctors and nurses in the field. Massaging people with multiple types of cancer, I learned that everyone’s reaction to treatment is different.
‘I always heard that breast cancer was not painful’
Toward the end of June 2013, after a passionate embrace, the person I dated at the time mentioned he noticed a change in my right breast. I denied it. He asked me if I did my own self-exams. I lied and answered yes. He said, “Let’s do one together,” and then he took my hand.
I continued to deny the thumbnail-size sore spot with the combative argument, “I palpate tissue for a living, and I should know what breast cancer feels like.” Blowing off the boyfriend’s suggestion of a mammogram at the time, my breast pain grew. After a few days, I called for a mammogram appointment, but I could not get in before I left for a vacation to Idaho.
I didn’t think much about the small sore spot in my breast. For me, it felt as if I was 30 years old, not 50 years old, and my breasts were sore like a premenstrual indicator. I always heard that breast cancer was not painful, and my breast buzzed like a fizzy tablet foaming. While visiting my family in Idaho, where crop dusters would swoop down and spray the mint fields surrounding my 92-year-old grandmother’s house, my right breast swelled.
At times, it felt like scorching hot pins poked at my chest. After those sensations died down, the skin where I felt the needling raised an eighth of an inch and turned reddish-orange. Days of my vacation ticked by as I grew more uncomfortable with what looked like mastitis. But the problem with that assessment was I wasn’t nursing a baby. Every couple of days, my breast grew like a foil pan of popcorn on a blue flame-filled gas burner. I watched the areola turn the color of cream.
Two weeks after I made my appointment, as the plastic plates for the mammogram lined up on my right side, I knew I had cancer. When white goop spewed out of my nipple as the machine pressed, I thought, “This isn’t good.” At each following mammogram, ultrasound, MRI and PET scan, diagnostics marked more changes. I kept ice packs on my breast 24 hours a day to counteract the heat. Swimming in cool water was the only activity that helped me manage the continued discomfort.
Chemotherapy, choices and anxiety
I remember walking into my first oncology appointment six weeks after the diagnosis of breast cancer ready to face the end of my life. In just a few weeks, a tiny cyst on the lateral side of my right breast had grown to be a tumor filling most of my now too small D-Cup. I had never heard of inflammatory breast cancer, but I had all the signs and symptoms. I knew how fast the thing was growing, and I was concerned about my quality of life if the medicines did not work. The doctor informed me that if I refused chemotherapy, surgery and radiation for my cancer, it would be a matter of months before the tumor would pop out of my skin and they would administer the palliative use of chemotherapy for the quality of my death. I remembered one of my clients and how an ugly prostate tumor had breached his skin. I remembered the rotten smell, his excruciating pain, and the debate of whether or not to administer chemotherapy for quality of his death. In that moment, the answer for me became clear. Eighteen hours later, before we had time to put in a port, I started my first round of chemotherapy.
I had a good idea what was coming. I knew my lifestyle was going to drastically change. Time would now be marked in increments of a year of Herceptin drips every three weeks, counting hours after chemotherapy to administer a shot, drops of fluid stripped from drain tubing after surgery, the warm cloth applied to my bare chest every other day during radiation.
My fear didn’t have anything to do with my body; I was petrified by logistics. Single with no family in town, I panicked wondering who would take me to my pre-op appointment, which friend would help me get medicine, how was I going to pay my bills. Anxiety attacks raided me every day as I practiced telling clients I had breast cancer while standing in front of the bathroom mirror. I dealt with the shame of accepting new clients while bald. When I went for my fourth round of chemotherapy, I had no idea it would mark the end of my 18-year career as a licensed massage therapist.
Side effects from medicines caused me blackouts, muscle tremors, rashes and change of personality. My ability to communicate on basic levels unraveled. I had a difficult time distinguishing fact from fantasy. The doctors agreed that we needed to scale back my treatment plan. I told my medical psychologist that I felt like the old metal tape measure in my father’s red toolbox after it had been pulled all the way out, and stuck, and the only way for the measuring tape to recoil back was to pull it out even farther. That was where I was at: pulled to the extreme.
Even though the tumor shrank, I lost valuable muscle tissue with the surgery. I now have a profound respect for the aching, dead-arm-feeling of lymphedema, and I know it is something I will have to monitor for the rest of my life. The prosthesis is heavy, and I had to relearn simple things like putting on clothes. The hardest activities in my life include cutting food, cleaning my house, shaking hands and pushing a shopping cart.
I found the oncology staff at Vanderbilt-Ingram Cancer Center nurturing, respectful and compassionate. My experiences with many members of the alternative healing arts community were less appealing. Some accused me of catching cancer by taking on too much of my clients’ energy. Or I ate too much sugar and was too emotionally toxic. Or I was paying for bad deeds from a past life. Some people pointed their fingers and claimed I must be an angry person if I got cancer. I heard every wacky remedy out there, yet I put my faith in modern medicine to heal me of my disease.
August 2015 marked the one-year anniversary of the end of my cancer treatments. I’m still considered cancer-free, but like most survivors, my mind has a hard time believing the cells that took me down are totally gone. My time is now measured by half-year follow-up appointments, volunteering with Gilda’s Club monthly bulk mailings, and swimming daily. Over the last year I said goodbye to my old life by shredding 950 client files, 15 years of taxes, 18 years of licenses from health boards and malpractice insurance policies.
I appreciate every moment of my good fortune, that I continue living in my home with an ability to become stronger in my body, mind and spirit. My world before cancer revolved around finding solutions to other people’s pain and suffering. Massage therapy was the way I practiced my faith. When I lost my career, I lost my purpose in life.
Instead of creating wellness plans for clients, now my focus is rebuilding my own strength and endurance for a better life. Cancer sometimes opens a person’s heart to serving humanity. For me, cancer narrowed it to a finer point.
Jamie Zoe Givens, who lives in Nashville, has authored short stories and a book of poetry, “Never Offer a Chair to a Dancing Girl.” Her story first appeared in the Winter 2016 issue of Momentum, the magazine of Vanderbilt-Ingram Cancer Center.
The Vanderbilt Breast Center provides the most complete range of services for breast health in Middle Tennessee. The center, located at One Hundred Oaks, offers screening, imaging, genetic testing and breast cancer care. To make an appointment, call 615-322-2064.