[stylist] For Breast Cancer Awareness Month: Blind woman's breast cancer survival story

Sat Oct 19 00:55:21 UTC 2013

Hi Friends,
Just a quick check-in. Rich is having a procedure for bladder cancer near
the end of the month and is still having issues after back surgery, so I
haven't been able to concentrate on much. I got Create Space to fix the book
cover, so the publishing process is finally over. When I can, I've been
contacting university disability services and education departments with
some of the recommendations I've received and a coupon for a free e-Book
version. I did revisit this article and updated it, so I got to do some
actual creative writing. What follows is the complete text of my latest
post, which I thought was timely for breast cancer awareness month and has a
blindness perspective. Enjoy and blessings,
Donna
---

New post on The Heart of Applebutter Hill 

<http://0.gravatar.com/blavatar/a63b77528505534e5f99c2b50c8fe33c?s=32&ts=138
2129877> 	

 <http://donnawhill.com/author/dewhill421/>  	

Butterflies
<http://donnawhill.com/2013/10/18/butterflies-me-an-authors-breast-cancer-su
rvival-story/> & Me: An Author's Breast Cancer Survival Story

by Donna W.  <http://donnawhill.com/author/dewhill421/> Hill:
http://donnawhill.com

 Blue butterfly on milkweed: photo by Rich Hill
<http://dewhill421.files.wordpress.com/2013/10/blue_butterfly_on_milkweed_ws
_116.jpg?w=560> 

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.

Getting Through

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

 Pink breast-cancer-awareness afghan, designed and knit by Donna W. Hill,
features twining vine surrounded by butterflies and candle flames: photo by
Rich Hill
<http://dewhill421.files.wordpress.com/2013/10/breast-cancer-awareness-afgha
n-for-tv-anchor-lyndall-stout.jpg?w=560> 

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. 

 Donna presents a hand-made pink afghan to Scranton-area TV news anchor
Lyndall Stout in honor of her work promoting breast self-exam: photo by Rich
Hill
<http://dewhill421.files.wordpress.com/2013/10/donna-hill-lyndall-stout-wyou
-by-rich-hill-11-18-08-ws.jpg?w=560> 

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.

Butterflies Today

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.

Purchase The Heart of Applebutter Hill & Provide Braille Books for Blind
Students

 The Heart of Applebutter Hill book cover shows cave scene: stalactites
reflected in an underground lake, while a hand holds the Heartstone of
Arden-Goth, a blue, heart-shaped sapphire
<http://dewhill421.files.wordpress.com/2013/05/theheartofapplebutterhill-web
-small.jpg?w=560> 

Print copies are available at ...
Amazon: http://www.amazon.com/books/dp/1483948226
CreateSpace eStore: https://www.createspace.com/4000964 

eBook versions can be purchased at the following outlets ...
Kindle: http://www.amazon.com/dp/B00CNG6DDM
Nook Book:
http://www.barnesandnoble.com/w/the-heart-of-applebutter-hill-donna-w-hill/1
115426305?ean=2940016415000
<http://www.barnesandnoble.com/w/the-heart-of-applebutter-hill-donna-w-hill/
1115426305?ean=2940016415000&itm=1&usri=2940016415000>
&itm=1&usri=2940016415000
7 eBook formats, including .epub, .mobi and .rtf, are available at
Smashwords: http://www.smashwords.com/books/view/313071?ref=DonnaWHill

accessible versions are available for Readers with print handicaps
Bookshare: http://www.bookshare.org/browse/book/639304

Donna W.  <http://donnawhill.com/author/dewhill421/> Hill | October 18, 2013
at 3:57 pm | Tags: blindness <http://donnawhill.com/?tag=blindness> ,
Braille <http://donnawhill.com/?tag=braille> , butterflies
<http://donnawhill.com/?tag=butterflies> , novelist
<http://donnawhill.com/?tag=novelist> , Retinitis
<http://donnawhill.com/?tag=retinitis-pigmentosa> Pigmentosa,
singer-songwriter <http://donnawhill.com/?tag=singer-songwriter> , surviving
<http://donnawhill.com/?tag=surviving-breast-cancer> breast cancer, The
<http://donnawhill.com/?tag=the-heart-of-applebutter-hill> Heart of
Applebutter Hill, The Last Straw <http://donnawhill.com/?tag=the-last-straw>
, WPLongform <http://donnawhill.com/?tag=wplongform>  | Categories: breast
cancer <http://donnawhill.com/?cat=107293> , Education
<http://donnawhill.com/?cat=1342> , Knitting
<http://donnawhill.com/?cat=1336> , Self-Publishing
<http://donnawhill.com/?cat=177243380> , songwriting
<http://donnawhill.com/?cat=57895> , Wrighting
<http://donnawhill.com/?cat=7201933>  | URL: http://wp.me/p11nbI-6M 

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