[WATCH] Kim Alexander: Surviving IBC Thanks to Clinical Research

Published November 22, 2014 by American Association for Cancer Research (AACR).
Diagnosed HER2-positive, with stage III inflammatory breast cancer that progressed to metastatic cancer, Kim Alexander turned to an investigational drug called T-DM1 (Kadcyla) which gave her life back.

Running time: 2 minutes, 14 seconds.


[WATCH] Jennifer Cordts: The Breast Cancer Disguised As a Skin Rash

Published May 2, 2017 by television station WFAA.com
After 11 months of misdiagnosis, a biopsy confirmed what a mammogram could not. Breast cancer doesn’t always present itself as a tumor or lump. For Jennifer Cordts, it was a tinge of redness similar to a sunburn on the side of one of her breasts. “I really want this to educate. I really want someone to say, ‘Oh my gosh, I have redness in my breast. I better push past the mammogram and ask for some more tests,’” said Cordts, 46, a mother of two daughters.

Running time: 6 minutes 36 seconds.

TEDx Talks: Inflammatory Breast Cancer – Rare, Not Impossible

Published on June 8, 2018 by TEDx Talks
In her powerful talk, Tatiana educates the audience about Inflammatory Breast Cancer, shares her mother’s journey, and helps us understand why we should never give up on advocating for our health. Inflammatory Breast Cancer is incredibly rare. So rare that, until her mom was diagnosed with IBC in 2016, Tatiana had never heard of it before. But instead of giving into the fear of facing a future without her mother, she chose to become an advocate for awareness in an effort to carry on her mother’s legacy.

Running time: 13 minutes, 20 seconds.


Anya Silver: “I Am More Than My Cancer”

Anya Silver

Anya Silver’s Story [1 August 2015]
I have considered myself a poet since reading Tennyson’s poem “The Lady of Shalott” in eleventh-grade English class and deciding that I wanted to do what Tennyson did: make magic weavings out of words. For years, I wrote about what mattered in my life: my childhood, family and romantic relationships, the glories of the natural world, and my faith. Looking back, most of my poetry was mediocre. I clearly hadn’t found my true subject.

Then came cancer.

When I was diagnosed with inflammatory breast cancer in 2004, I was thirty-five years old and pregnant. I had always been healthy, but had suffered two miscarriages in the past year, one of them very late and traumatic. Now, I faced losing my own life at a time when I was supposed to focus on bringing new life into the world.

I underwent aggressive chemotherapy treatment while pregnant, was induced into labor a month early, and then completed chemotherapy and had radiation while tending my newborn son.

After being in remission for over five years, I had a recurrence of IBC in my sternum in 2010, and for the last five and a half years, have been living with metastatic, or Stage IV, cancer. My son is eleven years old and healthy.

Everybody copes with the devastating diagnosis of cancer differently. For me, the most natural response was to write about it. I was unable to write much during the initial treatments, both because of fatigue and because I was emotionally overwhelmed by treatment. The poet Wordsworth believed that poetry “takes its origin from emotion recollected in tranquility.” I needed some distance from my diagnosis in order to write about my experiences. However, once I began to write poems about cancer, I couldn’t stop. I have been writing about life with cancer ever since. I have found my subject–or rather, my subject found me.

I am often asked why I write poetry about cancer, which is, as one reader told me, “so depressing.” I write to make meaning out of my life. Cancer strikes me as intrinsically random and meaningless. We can not accurately predict who will get breast cancer or who will die from it, or when. Cancer brings chaos into one’s life. Writing about cancer, on the other hand, gives me a sense of control over my life. By writing about cancer, I can take away some of its power over me. I can’t control my cancer, but I can control how I react to it. Writing is a craft. Like any craft or practice (pottery, building model trains, painting, knitting, baking), careful attention to a process gives one the sense that one is doing something productive and useful, and creating order and meaning in the world. Writing about cancer is a vocation.

Second, I write to better understand myself. Writing, like prayer, is a form of attention and meditation. When I write, I explore my own feelings, and the expression of those feelings is both a relief and a way to know myself better.

Third, I write to share my experiences with others, both those with cancer and those without. I want people with cancer to know that they are not alone, and I want people without cancer to know what, from my perspective, that experience is like. Cancer is a complex disease, and it evokes complex responses.

I strongly recommend that women with cancer write about their experiences, whether or not they consider themselves writers, and whether or not they plan to make their writing public. Keeping a journal is an excellent way for women to express–and therefore own and exorcise–their greatest fears and anxieties. During a decision-making process (whether or not to switch treatments, for example), writing about the various pros and cons of different choices helps one reflect upon and make better decisions. A diary can be used as a tool for a journey inward that helps one better understand oneself and one’s experiences.

There have been many memoirs by breast cancer survivors and those living with cancer. However, every experience is different, and we all have our own stories to share. Whether you start a blog, write an essay about your experiences for your church bulletin or a breast cancer organization, give a speech, or write in a literary form such as fiction, poetry, or drama, you have something unique to say. Don’t worry that you’re not a good enough writer. Just write.

Several years ago, a dear friend and I named our cancers. Her cancer was named Midge and mine was Madge. I expect that, some day, Madge will bring my life on earth to an end. But now, Madge is my subject. She will not control my life. I will not let her. By writing about cancer, I empower myself and my life. I am more than cancer: I am a woman, mother, wife, and poet.

[January 2019 Update by Ginny Mason]
For some a diagnosis of cancer is the end of a career, for Anya it became a muse, inspiring much of her poetry. In fact, she was named Georgia Poet of the Year in 2015 and a Guggenheim Fellow in 2018. Anya once said, “Cancer is an enormous part of my life, but I am more than my cancer. I am a whole woman and a whole human being.” Being diagnosed in 2004 during pregnancy made her son’s 14th birthday in 2018 extra sweet. Inflammatory Breast Cancer Research Foundation was fortunate to have Anya share her expertise with metastatic inflammatory breast cancer as a member of our Board of Directors. Sadly her term was cut short when she passed away unexpectedly in August 2018.


An IBC Survivor’s Story: 19 Years and Counting

19-1/2 Years and Counting by CLB [author prefers to use initials] (October 2020)

I am a stage 4 Inflammatory Breast Cancer survivor, diagnosed in May 2001. In February 2001 when I was 51, I noticed itching on my left nipple that stopped after a few days, and some discomfort in March and April during my monthly cycle. I specifically remember that on April 13th, there were no visible symptoms, but two weeks later, my breast was swollen, pink and warm with fever, a portion of the tissue across the top was hard, and I had shooting pain every so often. When my symptoms were at their worst the week of April 22nd, I was out of town on business. They seemed to appear overnight! I saw the doctor on May 4th and he said that the breast tissue was “1,000 times worse than in December” and he gave me Zithromax to take for 5 days. He hoped that I had an infection, but there was a mass about 8.8 cm that was very strange and hard. I returned on Tuesday, May 8th, and the doctor was very disappointed that the antibiotics had not helped. He explained that I should get an ultrasound that day. I had a very painful mammogram and then an ultrasound.

The radiologist was noncommittal – said he could not tell me what it was or wasn’t, and told me to immediately go back to my GYN. When I did, he was so upset and said the radiologist thought I might have a malignancy, and I should see my PCP right away. I really had to think what “malignancy” meant, and imagine my shock, when that had never crossed my mind at all! I left his office to go to see my PCP, whose nurse immediately called the surgeon, and he saw me on two days later on Thursday, May 10th. Again, I was shocked when he said I had a 50/50 chance of having breast cancer! I had pain – you are not supposed to have pain with breast cancer, right? The next day, my husband went to the Internet and did a search with the symptoms, and found an “inflammatory breast cancer” website. When I returned from work that day, he talked to me about it and asked me if I wanted to see what he had found, that it wasn’t good news. I told him, “If you know the enemy, you can fight it better,” and I needed to know what we were up against.

We got the bad news on Monday, May 14, 2001. When I met my oncologist, I asked him, “Do you believe in miracles?” He said, “I know there are things that happen that are unexplained.” I told him very firmly, that I did believe in them and he was going to see one happen. On Wednesday afternoon, a dear friend brought two of her powerful Christian friends to my office for healing prayer. Following the healing prayer, after crying, then laughing, I left the room with a big smile, saying, “I am going to be just fine!!” That was the beginning of my very positive attitude and intense faith that I knew I was right – and here I am!!! (My Bible Study teacher tells me I have the gift of Faith, and I used it on myself.)

I had the CT, echocardiogram, and bone scans on Tuesday and Wednesday. I started the Adriamycin/Cytoxan chemo on Thursday, May 17th and went back to work on Monday May 21st. Since a “gray” area showed up on my spine during the bone scan, an MRI three weeks later revealed two metastases in my vertebrae. My husband and I were devastated and again said many prayers that these would go away. Later in August, we found out there were actually six bone metastases.

One week after my first chemo on May 24th, my husband and I met with a breast cancer oncologist at Duke University Medical Center. He was very realistic and not encouraging, and explained that this was a serious breast cancer. We got the impression from him that I was not going to be around to worry about whether I had one or two breasts, and he did not recommend a bilateral mastectomy. I told my husband and myself then that I was going to prove them wrong. (I saw that same oncologist last year at Duke during an IBC forum, and told him exactly what I had said when I left his office. He was surprised at my tenacity!) We also consulted with an oncologist at UNC Lineberger Institute in the Triangle area, and he really explained to us what we were facing. My last chemo was the Wednesday before my 52nd birthday on July 18th. After my first chemo, I was put into “chemopause” instead of “menopause.”

I had surgery on August 8, 2001. During the follow-up scans after surgery (CT, MRI, and bone), a quarter-sized lesion showed up in my liver, plus my liver enzymes were “sky high.” That weekend was the second hardest of all of them. We had our “pity party” that Saturday, and my husband and I said lots of prayers. By Monday, we were ready to really fight with all our strength. After my primary oncologist consulted with my Duke and UNC oncologists, they agreed that I needed a biopsy to identify the lesion. I had two healing prayers within a 10-day period, and when I had a liver MRI in preparation for a biopsy, the spot was no longer there! The doctor said that the spot was possibly the duodenum and the radiologist read the scan incorrectly. Later, I hugged my oncologist and he seemed surprised and said, “What was that for?” I told him that he had a tough job, giving patients bad news. He said that I had the tough job, since I was the patient. And I told him, “Not for long – I am going to be healed.”

After having a port placed on my right chest wall, I began weekly Taxol (135 mg) on August 28, 2001 and finished on March 21, 2002. In the middle of weekly chemo, I started radiation, with reduced Taxol, on December 10th and had 33 sessions, completing them on January 28, 2002. I said prayers during all 33 treatments.

My cancer was diagnosed as Estrogen Receptor+/Progesterone Receptor-, Her2neu negative. At that time, no females in my family (either side) had ever been diagnosed with breast cancer. I found out a couple years ago that a first cousin on my father’s side had regular breast cancer, and had a bilateral mastectomy.

I now take a daily Letrozole (2.5 mg). Up until 2011, I was getting 4 mg Zometa every 3 months for the bone mets. In June, 2011, the Zometa caused an “unusual thigh bone fracture,” and I had a rod inserted. Both my local oncologist and my primary oncologist where I previously lived recommended no more Zometa treatments. Later that year my port was removed.

God was and is still a big part of my journey. He gave me “supernatural” strength the entire time. I was able to continue my work as an Executive Assistant at a large pharmaceutical company, the one that actually manufactures Herceptin, a life-saving drug for Her2neu positive breast cancer patients. The only days I missed work were the ones during recovery from surgery, and only one during my first chemo treatment. I kept my life as normal as possible, journaling and exercising and refusing to let the cancer slow me down. My husband was my wonderful cheerleader, and called me his “hero.”

I get a nuclear bone scan once a year, and so far, I am stable with no progression. My tumor markers continue to be in the normal range. In 2006, my radiation oncologist gave me a certificate, stating that he believes I am “cured,” which is something I never thought I would hear. In October 2019, my primary oncologist also used the word “cured,” and that really made me feel good.

Prior to diagnosis, my husband and I had sold our home and were moving to Florida. Our plans were to be there by the first of July. When the surgeon told me I had breast cancer, I said, “I can’t have breast cancer – we are moving in 2 weeks!” Well, that didn’t happen, and we knew we would find out why we could not retire as planned – “everything happens for a reason” we kept saying. Three months after I completed chemo, my mother passed away in June 2002.

During follow-up visits with my GYN and surgeon in 2005, I asked them if they expected me to be doing so well 4 years later, and they both said they did not really think I would be around, because it is such a serious cancer. I told them I was glad they did not tell me that earlier.

My mission and goal is to connect with IBC and other breast cancer patients and help them get through their journey. I have met some fabulous women who have survived this disease with dignity and perseverance. They inspire me as well and are some of my “breast” friends. I hope my story inspires and helps others…..God has been so good to me and my husband. We are so blessed.

CLB, age 71, NC.

Phyllis Johnson: A Sense of Perspective

Phyllis Johnson

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.

[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 Inflammatory Breast Cancer Research Foundation.

Gayla Little: You Are Not Alone In Your Fight

Fiery Furnace by Gayla Little

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 had 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.

[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 Inflammatory Breast Cancer 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.

Jo Pabon: A Story About Dimes

A Story About Dimes by Jo Pabon

My mother, Harriet Cimock, grew up in Corning, a small farming town in southwest Iowa. She raised five kids and was married to my dad for 58 years. She was a farm wife, helpmate, and spent much of her time making rosaries and small blankets for hospitals and nursing homes. She loved to read and loved garage sales. She had a lifetime collection of butterflies; pictures, statues, butterflies in every shape and size. She was very active in her church; a small country church she and my dad attended for more than fifty years. She went on many fishing trips with my dad and became very good at cleaning fish! She was kind hearted, soft spoken, dependable, patient, humble, and good spirited.

My mom had a normal mammogram and physical in April 2007. As part of her physical, her doctor recommended she get a shingles vaccine. My dad had had a bad bout with shingles, so my mom got the shot. (The CDC now recommends it to all over the age of 60.) Shortly after the vaccine, she started getting a rash on her chest. The doctor diagnosed it as shingles, she was one who happened to get shingles from the shot, she was told.

My mom visited me in Illinois the end of June 2007. She showed me her “spots”. I could tell that they were troubling her. She was not a complainer, and she seemed distracted by them. After her return home the spots were not getting any better. She had a biopsy, and it tested positive for Inflammatory Breast Cancer. Treatment for my mom began immediately; chemotherapy, with hopes of radiation and a mastectomy.

Back in Illinois with my family and still trying to accept the news, a strange occurrence started happening. I started finding dimes. Dimes — too many to ignore. Not quarters, nickels, or pennies — but dimes. Dimes in unusual places — peeking out from under a baseboard, in the back of a dusty broom closet, washer, dryer, when making the bed, in the shower(?), in driveways, dimes and more dimes. It became almost comical. After about a month of finding too many to be a coincidence, I told my good friend, Vicki, about it. She started finding dimes too! We would joke about where we had found one, and somehow it would make it a good day.

In October I returned to Iowa to be with my mom. She was not doing well. No amount of chemo seemed to keep up with this rapidly spreading cancer. She kept her good spirits and attitude of “It will either get better or get worse.” One day I went to chemo with her and after the session was over she stood up from the chair and under her was — a dime.

I returned home and the dime finding continued — in an old forgotten coat pocket, a windowsill, taxi cab, store parking lots. My three kids and husband were finding dimes too. We were amassing quite a collection. Unfortunately, my mom’s decline continued. She never did make it to the point of radiation or mastectomy. She fought the disease with gentle, but courageous suffering, faith and acceptance and passed away on December 18, 2007, just five months after her diagnosis.

Her service at their country church was beautiful. She had planned everything in advance, from the music to her obituary. She loved butterflies and her memorial was filled with butterflies and beautiful picture boards of her life. After her service we were returning funeral flowers back to the house. I lifted up a big vase and underneath it was — a dime.

I had another surprise at her house. My siblings and I were starting to sort through her things. (She loved those garage sales.) I opened a cabinet and was shocked at what I saw. A clear, plastic piggy bank right before my eyes. You could see every coin in the bank and there was one kind of coin in there — it was packed with only dimes! My brother mentioned that he had given my mom a bank several years earlier and he went to the bedroom to find it. He returned and turned it over on the table top. We could not believe our eyes as the dimes started pouring out!

I returned home after the funeral trying to accept the suddenness of all of this. My mom was always so healthy. She exercised, did not drink or smoke, loved her fruits and vegetables, stayed out of the sun, and followed her doctor’s orders — all the right things. Her mother and grandmother had lived well into their nineties. My mother was only 76 — still so much life ahead of her. My dad and mom had been married for 58 years and he was lost. He came for a visit and in sharing stories with him and my four siblings, they were starting to have dime stories of their own. It was comforting for us — made us all laugh and smile.

One day I was searching for breast cancer awareness items on the internet. I came across a picture of a pink breast cancer pin and next to it in the photo was a dime! The ad said the dime was in the picture to show the size of the pin. That was a light bulb moment for me. It was not right that we would save all our dimes and sit around and look at the pile. We were to pass them on for a good cause and what better cause than breast cancer research and awareness. I knew the dimes would really multiply once we started passing them on.

We have a special jar in the kitchen, and my family knows right where to put their “found” dimes. As the jar fills, we will keep donating towards finding a cure. My nine-year old son even cashed in his $25 savings, converted them to dimes, and added them to the jar. Our friends are saving their dimes too. Everyone can spare a dime, right?

I have two beautiful reminders of my mom — every time I see a butterfly and every time I find a dime. (Or should I say — a dime finds me?!) On my first Mother’s Day without my mom, I found two dimes — one for me and one for her? On her birthday, May 30th, we counted our dimes and sent in a donation in her memory to the Inflammatory Breast Cancer Research Foundation. We are saving our dimes once again and know there will be more coming our way.
Thanks, Mom!

[August 2011 Update]
My Mom’s story appeared in the October 2008 issue of the Focus on IBC newsletter. It was called “A Story About Dimes” and although it was written a few years ago, the story has not ended! The dime findings continue to this day and has spread among my family and friends. We have many dime jars going now! These small donations add up to big ones for IBC research. Just this week, my nephew felt a dime saved his life! He was waiting at a busy intersection to cross the street and the light changed and he started to go. Just then he spotted a dime. Knowing Grandma’s story, he bent over and picked it up. Right then, a car ran a red light and came flying through the intersection. He felt had he not stopped to pick up that dime, it could have been a very bad outcome.

[January 2019 Update]
It has been more than 10 years since this story was written and the dime findings have not slowed down! Our family was recently in the Virgin Islands, and we found 4 dimes while there. The dimes find us near and far! And it never fails that they seem to be found by the right person at just the right time. We miss my mom every day, but we feel very blessed by these findings. We will continue to donate them to IBCRF for their continued good work!

Linda Rush: Joining a Sisterhood, Working for a Cure

Linda Rush’s story

In 1997 my friend, Benja Arnold, was diagnosed with recurrence of breast cancer after having been disease free for 7 years. Because of her, I participated in Race for the Cure for the first time ever. I remember finding out where to go to register, registering myself and a teacher friend, picking up our tee shirts, and buying a static decal for my window on my door at school. The whole experience left me feeling rather “noble” — like I was doing something really important for “women.” I felt like I was contributing in some small way to this “greater sisterhood” thing that I got a sense of for the first time. I was proud to be a participant, and when I raced I wore a pink sheet of paper on my back that said, “IN CELEBRATION OF…BENJA ARNOLD.” I kept that paper, and we talked about the race afterward.

October ’98 a series of personal family crises culminated in the Race for the Cure month. My only race run that year was in continuous circles. I don’t think there were any “winners.”

In October 1999, 4 1/2 months after beginning treatments for inflammatory breast cancer, I again “raced” for the cure. But, this time, when I walked into the registration area…one-breasted, bald, bloated, and facing stem cell transplant the next week, my whole attitude was 180 degrees changed. I wanted to go up to every chic Germantown woman who was registering and thank her for running for ME. I was not feeling noble or proud; I was feeling broken, humbled, and indebted. I remember when I was offered a pink Survivor cap and tee shirt…I truly didn’t know whether I was supposed to accept them. In my mind I wasn’t a “Survivor” yet. Embarrassed, I took the items, went to my car, put my head on my steering wheel and wept. The day of the race, I once again wore Benja’s name as I “walked” the race with 13,000 other participants including some students, teachers and parents of our school who walked in my honor.

On October 21, 2000, on my back will be a pink sheet of paper that will say, “IN MEMORY OF…BENJA ARNOLD.” I won’t be racing FOR her anymore. She lost her fight August 14. It’s too late for her. Maybe it’s too late for me. Only God knows. But, I pray it’s not too late for my mother and my sister…for the young ladies in my school that I have the privilege of working with each day. I pray it’s not too late for you. Maybe we can perfect the vaccine that’s in the works…so they won’t have to experience what I’ve experienced…or at least, find “kinder” and more effective treatments.

I have never participated in any of the many local cancer support groups. I also knew I was not going to be a cancer volunteer and hang out at the clinic with a blue “volunteer” apron trying to make people feel better. In fact, my thinking all along was, “When I emerge on the other side of this tunnel of treatment, I’m closing this chapter of my life. I am going to get stronger, and I am going to get on with living the rest of my life. People will once again ask about my family and my dog; not my health.”

But, I’ve learned what so many others have learned before me…that the “cancer chapter” never closes…it continues to be written. Some days it occupies only a few sentences of my time other days maybe a paragraph or a page, but there is always a “p.s.” Never a period. And, I’ve found that that’s not all bad. To have each day colored by my ibc experience is to profit from some major lessons. I want to never forget the lessons I’ve learned from cancer, including how precious the relationships are with which God has blessed me…and the fact that there are no longer any “ordinary” days in my life…or any “routine” tests. There’s a heightened awareness of others and their needs…that sometimes their need to be ministered to is more important than my need to be “right.” Imagine that. I know that there are worse things than getting up at 5:30 a.m. and going to work…NOT GETTING UP and going to work, for instance. I learned that the worst day at school is still better than the best day in a hospital. For these reasons, and many others, I want to never forget to educate others about breast cancer…and about ibc in particular.

Inflammatory Breast Cancer involves the lymphatic system and often doesn’t have a lump. Be aware that this rare and aggressive form of breast cancer is often undetectable by mammogram and is, therefore, too frequently misdiagnosed as a breast infection. Wear the pin I bought for you occasionally if you are comfortable with that…or pin it to your mammogram appointment page of your calendar as a reminder. Race for the Cure if you can…and ask someone you love to race with you. Most of all take care of yourself!! Don’t do like I did and neglect getting a regularly scheduled mammogram even though I had pain and itching, classic ibc symptoms which I did not recognize as “cancer.” My car and my teeth NEVER missed an appointment. Are they more important than my health? Thank you for your many prayers and kind expressions of encouragement. I appreciate your allowing me this opportunity to be at least a small part of the Solution by getting the word out.

Bless You,
Linda R. Rush, Survivor

P. S. I raced in “CELEBRATION OF…JUDY HOGUE,” Briarcrest teacher, diagnosed 8/2000….detected early with a routine mammogram!

[January 2019 Update]
Linda has retired from teaching school and is enjoying a busy and meaningful “life-after-career” with her husband. She thanks God for the blessings he gives her every day, especially that of good health and an 11-year-old granddaughter.

Kate Strosser: A Life Well Lived

Kate Strosser

Til Death Do Us Part by Kate Strosser

“To love and honor until death do us part” is a phrase often used in marriage ceremonies. On my wedding day, October 17, 1981, death was not on my mind. If I had been asked about it, I would have said that I expected to outlive my new husband. As he is seven years older and takes high blood pressure medication, I figured it was a pretty safe bet that I would outlive him. I had no health concerns, and while my father had heart disease, I took after my mother’s side of the family. My maternal Gram had a long life, and my mother had no known illnesses.

Fast forward to September 2007 when our daughter worked as a neurosurgery nurse and our son was starting his junior year in college. I was immersed in my career at a public university and part-time work as a group fitness instructor for the YMCA. I went for my yearly mammogram a bit late that year. The technician performing the scan asked for repeat pictures. Due to extensive micro-calcifications, I was sent for a stereotactic biopsy and breast MRI. I was told that I had extensive Lobular Carcinoma in Situ, LCIS, in my left breast and it needed to be removed. I found a specialist in breast surgery and traveled south to have an MRI-guided biopsy. Atypical Lobular Hyperplasia was added to my diagnosis.

Due to a family history of breast cancer (both my mother and one of my sisters had ER+ breast cancer since my wedding), I chose a bilateral mastectomy with immediate TRAN flap reconstruction (skin-sparing surgery using tissue from my abdominal region to construct new breasts). I recovered with flying colors and was happy with my reconstructed “girls” as well as my newly flat stomach. I exercised my way back to fitness and a year after surgery I was teaching three consecutive fitness classes on Saturday mornings. I had also accepted a temporary teaching position at the university that filled my lunch hour plus a fair amount of work at home. I had beat breast cancer to the punch line! I was told there was a small chance of chest wall disease, but not to worry about it as it was exceedingly rare after a double mastectomy.

Just two months later, I noticed a red crescent near my left armpit that looked like chafing from my sports bra. As the redness spread over the next few weeks, I scheduled an appointment with my plastic surgeon, thinking that something was wrong with the transplanted tissue. My PCP put me on antibiotics, which did nothing. I had another breast MRI that showed skin thickening. The surgeon wanted me to see a dermatologist but offered a punch biopsy in the meantime. Two days later he called with the news. I had Inflammatory Breast Cancer and needed to see an oncologist. More tests ensued, and on April 25, 2009, I was officially diagnosed with Stage IV, HER2+++ IBC. I had a bone metastasis to L4 on the right.

Our daughter was being married in Los Cabos in just three weeks and our son’s graduation was in six weeks. The internet told me that many women die within eighteen months of diagnosis and HER2+++ was an aggressive form of cancer. Suddenly, “til death do us part” became real. I was an emotional wreck, in shock, angry and depressed. I would awaken at 2:00 in tears, convinced I would never see future grandchildren, our sons’ wedding or any other important family event.

Instead, I am alive nearly four years later. The journey has not been easy. Chemotherapy every three weeks has taken a toll on my body. I have digestive issues, moderate to severe fatigue, neuropathy in my toes, fingers and lips, and short-term memory issues. I had a second mastectomy, radiation to the left chest, and stereotactic radiation to the L4 area. IBC then spread to my right chest with the addition of bumpy skin metastases. I had one more progression to my bones, a right side rib. Still, I consider myself fortunate. I have responded to all my chemotherapies and I can still enjoy life. Grandchild number two will be born soon, and our son is in a stable relationship with a girl we adore. My husband is soon to retire, and God willing, we will have a few more years to enjoy our life. The FDA recently approved the new targeted combination drug, trastuzumab emtansine (TDM1) and I had my first infusion of it yesterday. “Death” has receded from my immediate consciousness, and I have several trips planned for the rest of 2013. I have learned that no one is guaranteed tomorrow, and I intend to enjoy my life.

[January 2019 Update]
Kate said, “I intend to enjoy my life,” and she did just that. Kate managed to squeeze in travel, time with family (especially her three grandchildren), and advocacy work while in almost constant treatment from her inflammatory breast cancer diagnosis in April 2009 until her passing in March 2017. Kate shared her adventures through photography, documenting a life well lived. No matter the circumstances, Kate managed to retain her wry sense of humor and learned as much as possible so she could advocate for herself and others with metastatic IBC.