IBC In My Own Words – Gayla Little
January 2019 Update
I am now 18 years out of my diagnosis of IBC. Seventeen and a half years ago, I was down-staged to stage 4 with mets to my spine and I was declared NED 17 years ago! My children, who were 11 and 15 when I was diagnosed are now 29 and 33 years old. I haven’t missed anything in their lives since my treatment ended.
I believe it is important to leave the world a better place than it would have been without you. That is why I spent about ten years on the Board of Directors of the IBC Research Foundation and am proud of the work we did while I was with this fine organization. I resigned several years ago to write a devotional for cancer patients. For most people of faith, a huge health crisis like aggressive cancer can also be a faith crisis. I am excited that I was able to draw on my experience as a mental health therapist and minister’s wife and my book is nearing publication.
I am excited that there are treatments now that were unavailable in 2001. Don’t give up your fight. IBC will change you and those who are close to you, but good can come out of this. You are not alone in your fight with IBC. Hang in there.
by Gayla Little
Fair Oaks, Indiana
November 2000, I noticed an unusual sensation in my right breast. It was like a “letdown” reflex you get before nursing a baby, but my “baby” was eleven years old. A few days later, I noticed a pink, flushed area on the same breast, and it felt heavy. When I squeezed my nipple, milk came out. So I pulled out my hulking blue Mayo Clinic Family Medical Guide and looked up breast disorders. “This can be symptomatic of a rare form of breast cancer,” were the words that caught my attention. I sighed as I realized I would have to spend Christmas money on a mammogram. I waited a few weeks to see if the symptoms would disappear after my period. They did not, and my nipple was starting to turn sideways.
I called 1-800-4CANCER to inquire about low cost mammograms. When I gave them my income level, I smiled. I could get a mammogram for free and would not have to give up my son’s Dreamcast for Christmas. That was on Thursday. On Monday, December 11, a raging blizzard began shortly after my children left for school. That’s when the return call came. I could get an appointment at the Breast Clinic that day. If I didn’t go then, I would have to wait until January. I looked outside, and all I saw was white. The clinic was over an hour away in good driving conditions. If this was breast cancer, I shouldn’t wait. I booked the appointment and called my husband. He cleared his calendar and came with me.
When I arrived at the Breast Clinic, the receptionist stated, “The add-on is here.” I explained my symptoms to a nurse who told me it was “probably nothing,” had my diagnostic mammogram, and waited as I was told to do. When the nurse returned, I noticed a change in her manner. Could I stay for an ultrasound? Of course I could. I asked the doctor doing the ultrasound what she was looking for. “See those comet-like tails? That’s what we’re looking for,” she said. She scheduled a biopsy for me on Thursday.
Prior to the biopsy, I met with the surgeon. He explained that he expected to find Inflammatory Breast Cancer. He looked serious, and I thought, “What’s the big deal? Breast cancer has at least a 90% survival rate.” (Little did I know that IBC only has a 5-year survival rate of about 38%.)
During the biopsy, the technician and the surgeon were chatting casually when he looked at her and asked, “What time do they pick up the specimens?” “About 4:00.” was the answer. “I think I’ll run these over at noon to make sure we have the results by tomorrow,” the surgeon said. At that moment I knew I was dealing with something really serious. He must believe that hours are important!
Friday I met with my surgeon and oncologist. They wanted to impress on me the seriousness of my condition and the need to act quickly. I kept asking for an immediate mastectomy, but they both agreed that the mastectomy could only follow chemo. I didn’t realize at first how lucky I was that I had landed at a clinic where inflammatory breast cancer was immediately recognized. I was asked to participate in a clinical trial conducted by Indiana University School of Medicine in Indianapolis.
I was exhausted emotionally and physically. My diagnosis had been on December 15, and my first chemo was scheduled for December 22. I was supposed to conduct the Christmas cantata on December 24. Would I be able to do that? We decided to tell no one except our children until after the holidays. I was going to miss my daughter’s first basketball game, and she needed to know why. We explained that I had a serious cancer, that I needed to start treatment right away, and that we were hoping and praying that it would save my life. I was sorry, but I would have to miss some of their activities. They understood, and they were behind me!
When I talked to the primary researcher on my case, she convinced me that she would do everything in her power to save my life. She also explained to me more fully why the mastectomy needed to come after three months of chemo, and she held my hand while I cried when she asked about my children. In the lobby, I had picked up a Ladies Home Journal. NEW TREATMENT FOR THE MOST AGGRESSIVE FORM OF BREAST CANCER had jumped out at me. The article was about Herceptin. I asked her why I wasn’t getting Herceptin. She smiled and explained that Herceptin was for metastatic disease, and I wasn’t there yet.
Between chemotherapy treatments, I was able to go with my brother to visit our parents in Florida. We left just as my hair was falling out. In fact, I got a wig from the American Cancer Society on the way. My parents were able to see that I was doing well on chemo, and my mother helped me shave my head!!
The most helpful lifeline I found during this time was the Internet. I could read the same journal articles as the doctors, and I also found a wonderful Internet IBC support group. They let me conduct surveys to find answers for my questions so I could make better informed decisions. Along my cancer journey, I also learned that cards are important. I received 5 or 6 a day in the first three months of my treatment, and they were invaluable to me. My husband is a minister, and I was added to prayer lists all over the world. That was a great comfort to me.
No matter what your religious heritage, I think learning the basic teachings of one’s religion is a great help in times of crisis. Bible verses like, “I am a God of the living and not of the dead,” “I come that you might have life and have it more abundantly,” and “I am the God that healeth thee” gave me confidence that when I was praying, I was praying in accordance with God’s will. As a singer and choir director, scripture-based songs were also very comforting and strengthening to me.
Being diagnosed with cancer leaves us with a feeling of being out of control, but the Bible teaches that God is in control. I think about the story of Shadrach, Meshach, and Abednego. Before the king threw them in the furnace, they stated, “We believe that God will deliver us from the fiery furnace, but even if he does not, we will not bow down.” I have tried to take this approach for myself. I hope and pray that God will deliver me from my breast cancer, but even if I die of this awful disease (I was lymph node positive at surgery, and I currently have bone mets.), I REFUSE to waste the precious time I have left feeling sorry for myself! I am going to fight as hard as I can to live, and during the fight, I am going to enjoy my life with my husband and my children and try not to throw away the blessing of life that I have today.