This is the second post from the archives of Donna Hill and this week she shares her inspiring story of surviving breast cancer twice, overcoming the after effects of reconstructions surgery and the move to their mountain paradise where butterflies are abundant…
Butterflies & Me: An Author’s Breast Cancer Survival Story by Donna W. Hill
We were in Lancaster County when it happened. Daytrips to the heart of Pennsylvania Dutch country were common when we lived in Glenside. Rich, my soon-to-be husband, Curly Connor, my nine-year-old Lab-Golden cross and I would walk the rural roads for hours, breathing in the sweet air, delighting in the sounds of steam engines on the Strasburg Railroad and observing the unhurried lives and quiet dignity of the Amish. It always refreshed and renewed us, but this time was different. It was September of 1990, and I had just been diagnosed with breast cancer.
“Don’t move,” Rich whispered, as we gazed across the harvested fields, “A butterfly just landed on your arm.”
A butterfly? There was a butterfly bush in the far corner of my childhood back yard. On summer afternoons, I would pack my duffle bag. With my sack of treasures and the cacky cotton strap of my father’s Army canteen over my shoulder, I trudged to the shady patch of grass by the butterfly bush and spread out my blanket. When the blue blossoms were at their peak, butterflies would visit. Sometimes, while flitting from flower to flower, one would land on my arm. But that was the fifties. Butterflies had all but disappeared.
Almost instantly, my little messenger of hope took off. I stood transfixed and profoundly grateful. Within a few seconds, however, something even more astounding happened. The butterfly turned, flew back to us and landed on me a second time, as if to say, “I really do mean you.”
A Writer Between Two Worlds
Cancer wasn’t my first challenge. Born legally blind from Retinitis Pigmentosa, I lived in the netherworld between total blindness and normal vision. The theory at the time was that visually impaired children who could technically see print should read print. No consideration was given to the damage and ineffectiveness of this strategy.
Large print didn’t work for me, because of one of RP’s least understood characteristics, tunnel vision. The bigger the word, the less of it I could see. Long before my reading vision failed completely, I was piecing words together letter by letter. Changes in lighting, such as passing clouds, left me unable to see for several minutes.
At home, I held my books up to a bright light. I can still smell the hot ink and feel the sting in my eyes. Blistering headaches were common. Adults were puzzled by the inconsistency of my vision. Some accused me of faking it.
Something to Cling To
My solace was music. From age four, I believed I was destined to do something important and that, whatever it was, it involved music.
Like everything else, however, my musical journey had many pitfalls. With little comfort other than that provided by an old guitar and a flair for writing stories and songs, I bluffed and blundered my way through school and later college. At twenty-one, while training with Simba, my first guide dog, a classmate taught me the basics of Braille.
My childhood dream was to be a working singer-songwriter. I started as a street performer in Suburban Station, Philadelphia’s busy center-city commuter hub. I wrote songs for special occasions including the US Constitution bicentennial and the Challenger disaster. By the time of my diagnosis, I had self-produced two recordings, accumulated a host of accolades for various songs, garnered references for my school assembly programs and purchased a house.
A Family Tradition
We were in the midst of my third recording, a two-hours-here and two-hours-there, pay-as-you-go venture, designed to showcase my songwriting skills in Nashville. Then, I found a hard lump, like a pencil eraser, in my left breast. Both of my grandmothers had died of metastatic breast cancer. The mammogram showed a tiny area of calcification; just something to “keep an eye on.”
In young women, breast tissue is dense and, especially for those with fibrocystic breasts, negative mammograms are unreliable. For this reason, I had an ultrasound, and the interpretation of its results was one of the biggest snafus of my life. It was negative.
That’s good, right? No, that’s not good. What you’re hoping for with ultrasounds is to see a nice watery cyst right where you feel the lump. Most cysts go away within a month and that’s that. Cancer, however, is denser tissue and doesn’t show up on ultrasounds. I didn’t know that, and apparently, neither did my doctor. Fortunately, Rich persuaded me to see someone closer to home. On my first visit, I casually mentioned the lump. He hit the roof and scheduled a biopsy on the spot.
The thing about dealing with cancer is that nothing happens in a vacuum; life goes on and Fate doesn’t look at you and say, “Oh, you have cancer. You get a reprieve.” Rich had just been down-sized out of the only job he’d had as an adult. We had family problems including the death of my aunt, my brother’s struggle with a pituitary tumor and my future father-in-law’s battle with prostate cancer. Operation Desert Shield was gearing up in the Middle East, directly affecting family members and neighbors.
Then, there were the all-too-typical annoyances of modern life: the roofer who messed up what should have been an ordinary job and the printer who offered me a ten percent discount on stationery with the wrong phone number. No, I didn’t bite. What’s the point of stationery with the wrong phone number? Luckily, I had a copy of what we sent him
Choices and Consequences
I had the choice of a lumpectomy with radiation or a modified radical mastectomy. I chose the latter, in part to avoid radiation. It didn’t work. Malignant cells were found too close to the chest wall. I remember being in the hospital wearing a huge protective bandage, when I learned that radiation and chemo were back on the table.
I had been a health nut — distilled water, brown rice, no caffeine or sugar, no harsh chemicals around the house. I baked my own multigrain bread, made soup, spaghetti sauce and everything else for that matter from scratch and shopped at a natural foods co-op. I always said that, if I had to make a decision about having radiation or chemotherapy, I would opt out at once. Over the next two days, however, I made peace with the upcoming mega dose of x-rays. I also realized that I couldn’t rule out chemo either. I pictured my hair falling out and how my face and body would feel and I began making mental preparations for accepting the nasty side of cancer treatment.
Fortunately, my lymph nodes were clear, and the tumor was small enough that four out of five of the oncologists whom my doctor consulted recommended against chemo. Breast radiation wasn’t the big deal I feared it would be. It doesn’t make you sick, just tired and a bit sunburned in the last week or so.
My church provided volunteer drivers throughout my treatments. I enjoyed their company, and they comforted Curly Connor while I was “in the back.” My second guide dog was the embodiment of sweetness. His habit of crying, whenever I was out of his sight, in a voice that was rich in tonal range and expression won over many hearts.
The worst thing physically — and I’m not forgetting that first painful day or so after surgery — was that I developed tendonitis in my shoulder, possibly from the positioning for the radiation. Rich took better care of me than I could have imagined. We married that December. We started downsizing — we didn’t need two houses or two of a million other things. As my energy improved, I refocused on my pre-cancer goals and returned to the studio. Finally, we had the master for The Last Straw. We sent it, along with the cover art, to the magicians who transform such things into shrink-wrapped CD’s. Then, guess what I found a week later?
Another Curve Ball
The second diagnosis was easier at first. After all, I knew the ropes. It was the same rubbery nodule with a corresponding bit of calcification on the mammogram. They said a lumpectomy should do it, but I wanted more peace of mind.
My regret is that I didn’t insist that they take both breasts the first time. They claimed that the two cancers weren’t related but, on the other hand, said that women with cancer in one breast are more likely to get it in the other.
If I had had them both off in 1990, I might have dispensed with the implants and avoided a slew of “complications” which prompted my plastic surgeon to regularly say, “I’ve heard that this could happen, but I’ve never seen it before.”
Breast Implants: One Problem After Another
The first one leaked — don’t worry, it was saline. I developed an edema around the second implant and spent a memorable Christmas holiday making daily visits to the hospital to have it drained. Then, just when I had convinced myself that I had at least avoided the sagging breasts that my grandmother had, one of them slipped.
The other thing was that, as a blind person, my appreciation of the similarity between the real thing and the implants was not based on visual appearance but tactile and internal sensations. I never got over the itchy, creeped-out feeling of the implants.
A few years after procedures to lift up the sagging one, I noticed lumps near the chest wall. Probably scar tissue, but to find out for sure, they would have to do biopsies. This meant removing the implants. My poor plastic surgeon was mortified when I told him not to bother putting them back in.
I’ve never regretted it. I have a lovely set of fake boobs that fit into a pretty bra — cotton, of course. Most of the time, however, I wear shirts with two pockets or vests.
Silk Purses from Sows’ Ears
The worst part of the second diagnosis was that it derailed my Nashville-songwriter dreams. It was easy enough to look at it logically and admit that I no longer had the resources or energy and that without some miracle, it wasn’t going to happen. Cancer had not given me that new-found overwhelming appreciation for life that many people report. The fact was that I felt diminished and — dare I say it? — depressed.
Rich and I had a seventeen acre parcel of Heaven in Pennsylvania’s Endless Mountains, where we hoped to retire. After having the troublesome implants removed — yes, it was just scar tissue — we decided to “get outa Dodge.” Mountain life would be less stressful, cleaner and cheaper. Rich’s field was so technical that he wasn’t about to find another job close to home anyway, and he had dreams too.
My challenge would be redefining what it meant to be an independent, blind woman. Around Philadelphia, Curly Connor, who — like Simba — knew over a hundred places by voice command, could take me to the post office, grocery store or the train station, where I had access to schools, libraries and churches in five counties. I had lived alone for over twenty years and was used to not “needing” much help. How would I handle the isolation? How would I deal with a new community who didn’t know me?
I’d been dreaming of living in the mountains since I first visited them as a kid and got a lungful of clean, pine-scented air. But, most successful blind people live in urban areas. Once you have that kind of freedom, how do you give it up? Well, you just do. Then you deal with whatever shakes out.
We built a modest home and moved in ’97. Our dear Curly Connor died before the move, at the ripe old age of fifteen. MoMo, my third guide, and Hunter, my current helper, only needed to know things like the mailbox, our neighbor’s house, the barn and the trails on our property.
Songwriter Descending: Novelist Ascending
In order to widen my horizons, I stopped writing songs. I would record the song fragments which popped into my brain; I could work on them later. I had been keeping notes on a novel, The Heart of Applebutter Hill, and focused my creativity on it. The heroine would be a 14-year-old songwriter, who is losing her sight but not her vision. She’d have a guide dog named Curly Connor.
My writing style was rather unconventional. I used two cassette recorders. I’d listen to a passage from one, and then record an edited version into the other. After I typed a chapter into our old word processor, Rich would get bleary-eyed staring into the one-inch screen, hunting for mistakes.
My self-imposed songwriting ban imploded after 9/11. I had booked a folk concert for later that month, and there was no way I was going without a handful of new songs.
In 2005, I learned to use a computer with a screen reader, opening a world of possibilities. I worked on The Heart of Applebutter Hill and started writing articles about blindness issues like the Braille literacy crisis, which weren’t getting much mainstream press.
Knitting for Breast Cancer Awareness
I re awakened my love of knitting — my mother had taught me in high school. I love making afghans and shawls in fancy patterns from Braille books from the National Library Service for the Blind. Most go to our local interfaith ministry.
In 2008, I presented a pink afghan to former Scranton-area TV news anchor Lyndall Stout in honor of her “Buddy Check” segments, promoting monthly breast self-exam. It features a central panel of entwined vines surrounded by butterflies and candle flames. At the top between two flowers, “Buddy Check” appears in Braille.
Rich and I are still health nuts, but coffee, tea and chocolate are regular parts of our lives. I have remained cancer-free for twenty-three years
The Heart of Applebutter Hill, the novel that healed my broken dreams, is finally out. It has received prepublication recommendations from professionals in education, rehabilitation and the arts as a valuable tool to introduce secondary and college students to the capabilities and issues facing blind Americans.
Milkweed and bergamot grow wild here, sometimes right by the house. Hundreds of butterflies of many varieties visit for weeks. A butterfly even ended up in The Heart of Applebutter Hill. The Aki No Choo — Japanese for “autumn butterfly” — is a blue butterfly encased in a crystal ball. A pink heart appears on one wing. It has its own job in the novel, but for the author, it is a reminder of that magical day in Lancaster County, when one particular butterfly brought us hope, foretelling my survival, landing on my arm not just once, but twice.
©Donna W. Hill
About The Heart of Applebutter Hill
Imagine you’re 14 and in a strange country with your camera, your best friend, her guitar and her dog. You uncover a secret and are instantly in danger. Join Baggy, Abigail and Curly Connor as they explore Elfin Pond, sneak around Bar Gundoom Castle and row across an underground lake. The powerful Heartstone of Arden-Goth is hidden nearby, and corporate giants unleash a spy to seize it. Compelled to unmask the spy and find the Heartstone, they can’t trust anyone.
As summer heats up, their troubled friend Christopher is viciously bullied and an armed stranger terrorizes Abigail and Baggy. The friends disagree about the spy’s identity, but are convinced it’s a teacher. When a desperate Christopher shows up one night with a terrified cat, the truth is revealed. Soon, police are involved.
One of the over 50 reviews for the book
This is a book about a blind girl without being a book about a blind girl….which is exactly the point. The main character, Abby, doesn’t trumpet her disability around the world as if it were her defining characteristic. She doesn’t have a sense of entitlement. The reader is never tempted to pity her, even for a moment. She is a driven, bright, gregarious yet measured girl who just happens to be blind.
Through her experiences we are exposed to a world that depends on the other senses, we find new ways to connect to the world around us. Mrs. Hill paints Abby’s thrill ride with her companion dog (Curly Connor) and best friend (Baggy Brichaz) in such a manner that the reader leaves the book better equipped to understand visual impairments without hitting them over the head with it. It took me a while to realize this because at first I was just writing this review on the merits of good vs. bad Young Adult fiction (and it is good, trust me). The feather in the cap of this book is that it stands as a great story that actually teaches you something, leaves you pondering your own disabilities vs. those of others.
I am a middle school reading teacher and I review and teach a lot of YA fiction. What separates the wheat from the chaff for me is well-developed characters that show humanness and overcome in spite of failures. You get the feeling that each of the characters in this book could very well survive on their own but the adventure is exponentially heightened because of the relationships they garner with each other. Mrs. Hill does a brilliant job of showing weaknesses, strengths and diversity as just a starting point to the basics of character interaction. By the end of this book, I felt like Abby, Baggy and Curly were my next-door neighbors and I still find myself looking out my window, waiting for the Cloud Scooper to swing by….
Read the reviews and buy the book: https://www.amazon.com/Heart-Applebutter-Hill-Donna-W-ebook/dp/B00CNG6DDM
Read more reviews and follow Donna on Goodreads: https://www.goodreads.com/author/show/7126655.Donna_W_Hill
About Donna Hill
Donna W. Hill is a writer, speaker, animal lover and avid knitter from Pennsylvania’s Endless Mountains. Her first novel, The Heart of Applebutter Hill, is an adventure-mystery with excursions into fantasy for general audiences. Professionals in the fields of education and the arts have endorsed it as a diversity and anti-bullying resource for junior high through college.
A songwriter with three albums, Hill provided educational and motivational programs in the Greater Philadelphia area for fifteen years before moving to the mountains. Her essay, “Satori Green” appears in Richard Singer’s Now, Embracing the Present Moment (2010, O-Books), and her cancer-survivor story is in Dawn Colclasure’s On the Wings of Pink Angels (2012).
From 2009 through 2013, Hill was an online journalist for numerous publications, covering topics ranging from nature, health care and accessibility to music, knitting and chocolate. She is an experienced talk show guest and guest blogger and presents workshops about writing and her novel for school, university, community and business groups.
Connect to Donna.
Amazon author page: https://www.amazon.com/Donna-W.-Hill/e/B00CNTTUK2