IBC In My Own Words – Phyllis Johnson
January 2019 Update
In the years since my treatment for hormone receptor negative, HER2 positive IBC, I have been fortunate to dance at our children’s weddings, finish out my career as a teacher, and become a grandmother to four wonderful children. Despite some long-term side effects like lymphedema and neuropathy, I find joy in little things like a good cup of coffee and major adventures like travel to new places. I never expected to live to be an old lady, so I try to make my extra years count by helping others, especially as a volunteer with IBCRF.
A Sense of Perspective by Phyllis Johnson, Concord, NC (formerly of Liberty, MO)
When I was a teenager, my big goal in life was to travel in Europe. I still remember sitting in Miss Knight’s history class and seeing a slide of Ghiberti’s bronze baptistery doors in Florence, Italy. I vowed to see them in person. When I was 20, I got married. For the next 25 years, education, children, and other priorities always came before THE Trip to Europe. Though my husband and I traveled quite a bit in the United States and Canada, THE Trip to Europe was something we decided we could look forward to when we retire.
When I was nearly 50, my daughter, Sara, decided to spend her junior fall semester of college in London. This also became an opportunity for me. I would see the sights by myself while she was in class during the day, and we could go to shows at night. So in October 1997, I joined Sara in London for two weeks. It was a wonderful trip! One of the things I had especially wanted to see was the exhibit of Turner’s paintings at the Tate Museum. When Sara and I stepped out of the museum, I stood on the top step looking at the Thames River flowing in the bright October sunshine. “Sara,” I said, “if I get run over by a bus this afternoon, at my funeral I want you to tell everyone, ‘It’s okay; Mom got to see the Turners at Tate.’ “
One morning in early February 1998, I jumped when the water hit my right nipple in the shower. It hurt … really hurt! The pain continued whenever something touched my right breast. I tried to think if I had done something to bruise it. By mid-February it was hurting constantly and itching. I knew something was wrong, but I didn’t want my initial visit to the doctor to sound as if I were a hypochondriac. “Doctor, my breast itches,” sounded like such a wimpy worrywart. Besides, I’d just had a clear mammogram two months prior.
In addition to the pain and itching in my right breast, I could feel a lump in my left breast. I knew the lump was probably a cyst that needed draining. I’d had lots of them before. In early March, I went to the doctor, explained the cyst, and mentioned the pain in the right breast. I had mammograms and sonograms. Sure enough, the lump on the left breast was a cyst, but the right breast showed no problems. When I returned to the doctor for my follow-up visit, the right breast was slightly pink. I suggested that I might have an infection. I was sent to a surgeon. He didn’t seem concerned about the right breast, but I was worried. It wasn’t normal to have so much pain. Of course, I knew I couldn’t have cancer. There wasn’t any lump to be felt, and the mammogram and ultrasound were clear.
The day before I was to see the surgeon, I woke to find a three inch circle of ridged, red skin on my breast. He prescribed an antibiotic. Two weeks later, on a Friday, I was back in the surgeon’s office. The antibiotic had not worked. I wasn’t particularly worried. We would just try another one. Surprisingly, the surgeon said we needed to schedule a biopsy because I might have a rare form of breast cancer. I went numb. Most of what he said just washed over me, but I caught the words “cancer in the lymphatic system.” I asked him to repeat that. I didn’t know much about the lymphatic system, but I knew it traveled throughout the body. The doctor said that if this was cancer, it was not a good kind to have. We needed to check it out to be sure.
During the weekend, I read everything I could find about inflammatory breast cancer. I had every symptom of IBC that was mentioned. I began to realize that I might not live to see my children graduate. On my 50th birthday, I found out that I did have inflammatory breast cancer. The doctor said we’d found it early, but due to my husband’s new job, we were eleven hundred miles from our extended family and longtime friends. I had just accepted a new teaching job. While the doctor was assuring me that I would be done with chemo and surgery in time to start school in the fall, I was wondering if I would still be alive.
My new goal was to live to May 1999 to attend my daughter’s graduation from college and my son’s graduation from high school. I knew that to survive I’d need a lot of help. My husband cried with me, held me, cooked the food, and held my hand when the nurses tried to find my veins. But he was hurting, too, and we couldn’t continue without help. I called a cancer hotline and got more information, and a long-term survivor called me. Once I talked to someone who had been well for 12 years, I knew that I could do it, too! I joined an online IBC Support group started by Menya Wolfe and Pete Bevin. I emailed my far-flung friends and family and asked for their prayers. I joined a local support group, and I learned to ask for rides to the doctor and other help from people I was just meeting in a new city.
June 1998 brought bad news with the mastectomy pathology report. I would not be done with my treatment in time for school to start. I would need more chemo than originally thought, and now radiation was added to the plan. I started a new teaching job and Taxol treatments at the same time. Once again, when I asked new friends and coworkers for help, they came through.
January 1999, I finished my eight months of treatment. In March 1999, my husband and I went to Hawaii for our belated 30th wedding anniversary trip. I have learned not to assume that I have forever to accomplish my goals. Summer 2000, Sara and I returned to Europe. This time we went to Florence, Italy and I saw the baptistery doors I had studied and admired in Miss Knight’s class. The depth of perspective was amazing. Even more amazing, I was alive to fulfill another dream.