Amy’s Story

Article By Amy’s Husband, Michael Johnston

INFLAMMATORY BREAST CANCER (IBC) is a very aggressive form of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast.  It is called “inflammatory” because the breast looks swollen and red, or inflamed.  The skin of the breast may also appear pitted like the peel of an orange, or the nipple may be flattened or inverted.  Inflammatory Breast Cancer usually develops very rapidly over a short period of months, or even weeks.  Only 1-2% of all breast cancer cases in the U.S. are IBC.  This disease progresses so quickly that most patients with it are pronounced Stage III or Stage IV upon diagnosis.  The survival rate for breast cancer is now around 88-89%.  Fifty percent of IBC patients die within two years.

My wife Amy was diagnosed on April 26, 2011.  We were told that we caught it early —within two to three weeks of symptoms appearing.  We were shocked, as anyone would be.  Her gynecologist told us, and then we went to see our family physician, who then got us an appointment with a surgeon that very day.  He was concerned when he examined her and recognized the symptoms as inflammatory breast cancer.  We had never heard of it before.  He quickly scheduled her for biopsies to be performed on Friday, April 29.  After the shock wore off a little, we were determined to beat this disease because the survival rates for breast cancer were getting better every year.

The plan was to do three rounds of chemotherapy (every three weeks for 2 ½ hours a treatment), perform a mastectomy, three more rounds of chemotherapy, radiation, and then anti-hormone therapy.  She started chemo on May 2 less than a week from diagnosis.  She lost her appetite and was fatigued, but she kept on working, because the doctors told her that the more active she stayed, the better she would feel.  On May 8 (Mothers’ Day) Amy had a brilliant idea.  She decided that we should take our family’s Christmas picture before her hair fell out.  So, we did —and it’s still my favorite picture we’ve ever made as a family.  Our two sons (Haven aged 19 and Gentry aged 16) agreed with me to shave our heads so that she wouldn’t be alone with a bald head, but she emphatically said, “No, I want to see some hair in this house somewhere.” Her hair started falling out two days later.  She then shaved it and got two wigs that semi-looked like her beautiful blonde hair.

All biopsies showed cancerous inflammatory carcinoma, and a mastectomy was scheduled for July 6. Amy handled the chemotherapy treatments and the resulting side effects with determined resolve, continuing to work as a Speech Therapist for the Monroe City School System and as an adjunct professor in Speech Pathology at the University of Louisiana – Monroe.  The mastectomy was very difficult for her. Losing her breast and her hair was so emotional for her, because she felt that it made her less of a woman, but not to me!  Her desire and passion to win this battle for life made me realize how beautiful and life-loving she was.  The results of the mastectomy weren’t great.  The surgeon was still concerned about the margins and spread of the disease, and he removed all of her lymph nodes from the right side because so many were affected.  He wanted us to go to M.D. Anderson to the Morgan Welch Inflammatory Breast Cancer Clinic, named after a 21-year old IBC patient. (IBC patients tend to be younger on average than Breast Cancer patients.)  This was continuing to be very scary.

On July 18, we went to M.D. Anderson.  We also had to miss my niece’s funeral; Stacey had just lost her two-year battle with colon cancer. M.D. Anderson is a big, scary place when one first arrives, full of trepidation, uncertainty, yet hope.  We met with the leading IBC specialist in the country, and he developed a plan for us. We spent the month of August 2011 getting two radiation treatments a day on her chest wall for every week day for a total of 44 treatments.  We stayed at a hotel during the week and drove home on the Fridays after her afternoon radiation.  Her skin turned bright red, and we had to keep it moisturized all of the time. When she finished her last radiation treatment, she got to ring a bell signifying the end of her treatment —it wasn’t. During this time I was trained in lymphedema massage techniques that would be needed each night to prevent any infection or swelling in her right arm and surrounding areas. In September, we went back home and back to work trying to be as normal as possible.  She continued with two different chemotherapy treatments, once every three weeks—still working.

By the time we got back to M.D. Anderson on December 20, Amy was extremely weak. The doctor told us that the chemo treatments had been too strong, and that she was through with her chemo treatments. We went home ecstatic…but she wasn’t through. Before the year was finished, she couldn’t walk. We thought that it was just extreme fatigue from the extra chemo, but it was peripheral neuropathy in her fingers, hands, feet and lower legs.  The chemo had killed or damaged her nerve cells in these areas to the point where her feet and fingers were stinging, burning and causing stabbing pains nearly all the time.  During January 2012, sleep was almost non-existent. We would move from the bed to a pallet on the floor to a recliner, but nothing allowed her to get any relief until exhaustion overtook her for a couple of hours a night.

We both took extended sick leave from our jobs, and we started going to a physical therapist and an occupational therapist three to four times a week. Amy started out in a wheel chair for the month of January, but by February she had progressed to a walker. Her goal was to be able to walk on her own for our youngest son’s (Gentry’s) graduation. By May, she had improved to the point with our PT’s help (Shane Hogan – I can’t say enough good things about the man’s encouragement and patience with us —Awesome!) she had advanced to the point of using AFO’s (Ankle Foot Orthosis braces) that helped her lift her feet. She walked at graduation.

The rest of the summer was spent improving her walking, physical and occupational therapy, treatments, and trips to M.D. Anderson. In August, we both went back to work. In September she started driving again, giving her a little freedom instead of being stuck with me 24/7.  On November 30 during a heavy rain, she spun out through a normally busy intersection on Highway 165 North at 9:00 a.m., and no one was in her way.  She didn’t hit anyone, and no one hit her!  However, she complained of a neck problem, like a crick in her neck. So, I suggested we go get it checked at our family physician, and we had x-rays taken. On December 5, Amy called me at work at 2:00 p.m. We had forgotten to put her AFO’s on her that morning, and she had worked, walked and driven ALL DAY without her braces! At 3:30 we got a call about the x-rays taken earlier and her blood work; the cancer had come back in her bones.

Back at M.D. Anderson in January of 2013, we were included in a Phase II Clinical Trial. We had to document every medicine, vitamin, food, etc. that Amy had. We thought that it was being beneficial, but by July the cancer had metastasized into her liver.  We were devastated…again.  By September, M.D. Anderson had given us a time frame; and she wouldn’t live past a certain number of months.  So, we went to Cancer Treatment Centers of America in Zion, Illinois. The CTC staff and a new local oncologist were more positive and supportive, and we started on a new chemotherapy regimen.  Amy was still working five days a week – she was a dedicated speech therapist all of her adult life.

During the first week of February of 2014, Amy felt terribly bad – so bad in fact that I had to take her to the emergency room.  Our oncologist informed us that her liver was getting worse.  On her fourth night in the hospital, she started having breathing trouble.  She was sent back to the emergency room, where I had to watch her placed on a mechanical intubation machine.  I didn’t know that she would never breathe another breath on her own.  At this point, and only at this point, did I realize that Amy was going to die…and she did the next morning at 10:20 a.m.  She had made it 33 months from the time of diagnosis.  She had fought harder than anyone could ever imagine.  She was my hero.

Looking back after 2 ½ years, my heart still aches.  I know that LIFE is a struggle.  ALL people struggle.  We had faith that God would heal her of the cancer and the neuropathy pain.  Because the God we worship is an OMNIPOTENT God.  And, if Jesus healed people in His day, doesn’t He still heal people today?  Yes, He does because Hebrews 13:8 tells us that “Jesus Christ is the same yesterday and today and forever.”  And, we believed in the miraculous power of Jesus Christ healing her.  The Word of God was very encouraging to us.  Romans 15:4 states, “For everything that was written in the past was written to teach us, so that through the endurance taught in the scriptures and the encouragement that they provide we may have hope.”  Now, most preachers will look at that verse and say that I’m taking it out of context, but it gave us HOPE.   Hope is what we needed. We had prayed every night for healing – believing that God would heal her.  Many non-Christians will ask, “Well, why didn’t God heal her?”  Here’s my answer:  “I don’t know.”  Does that mean that I quit believing in a powerful, merciful, omnipotent, loving, healing God?  Not at all!  It just means that I know that God is OMNISCIENT, too.  He knows why.  He knows everything.  When a tragedy or catastrophe or illness or death or STORM happens in one’s life, (which it always does) it’s almost like looking at a gigantic mosaic work of art with one’s nose pressed against the painting – nothing makes sense!  But TIME allows us to back away slowly and take a look at the bigger picture and see what it’s meant to be.  I’m still too close – I can’t see the “why.”

Many people look at cancer survivors with so much respect, because they had the will, determination and perseverance to survive, which they should be honored in that manner.  I give all the credit in the world to anyone who survives such a terrible disease and the treatments.  But those who die…they fight just as hard.  I can remember when Amy was re-learning to walk and she was SO weak; I would ALWAYS hold her hand to keep her from falling.  However, later on, when she was walking fine, I found myself still holding her hand, because I was so proud of her that I wanted everyone to know that I was married to this wonderfully strong woman!

Amy was declared cancer-free on February 7, 2014, at 10:20 a.m.