Butterflies & Me, the Healing Touch: a Breast Cancer Survival Story
Donna W. Hill
October 23, 2009
We were in Lancaster County, Pennsylvania when it happened. Rich, my soon-to-be husband, Curly Connor, my nine-year-old half Labrador/half Golden Retriever, and I enjoyed frequent day-trips to the heart of Pennsylvania Dutch country, when we lived in the Philadelphia area. We would walk the roads for hours, breathing in the sweet air, delighting in the sounds of real 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 particular time was different. It was September of 1990, and I had just been diagnosed with breast cancer.
"Donīt 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 back yard, when I was a child living in the shadow of Bethlehem Steel in the 1950s. On summer afternoons, I would pack my duffle bag with my prized possessions. With this sack of treasures and the cacky cotton strap of my fatherīs Army canteen over my shoulder, I would head for the shady patch of grass next to the butterfly bush and spread out my blanket. When the blue blossoms were at their peak, butterflies would visit. Sometimes, as I watched them flit from flower to flower, one would land on my arm. But that was the fifties. Butterflies had grown scarce over the decades.
My realization of the rarity of this visit came immediately. In a few seconds, my little messenger of hope took off. I stood transfixed and profoundly grateful. Within another few seconds, however, something even more unusual happened. The butterfly turned around, flew back to us and landed on me a second time, as if to say, "I really do mean you."
Cancer wasnīt my first challenge. I was born legally blind from the degenerative retinal condition Retinitis Pigmentosa, which steadily worsened throughout my childhood, giving rise to the myriad of social, educational and economic problems which usually accompany childhood disabilities. With little comfort other than that provided by an old guitar and a flair for songwriting, I had bluffed and blundered my way through the public schools before "mainstreaming" had anything to do with education. In spite of the unsought after opinions from people who believed that I had no business even trying, I graduated from college with a degree in English literature. Afterwards, -- and it was long overdue — I taught myself Braille and got my first guide dog, Simba, from the Guide Dog Foundation for the Blind in Smithtown, New York. The dread with which I had approached every step vanished and I started walking with joy for the first time in my life.
It took me two years to land a job with the Department of Public Assistance and required a move to Philadelphia. My career as a caseworker ended a year later, after an incident in which I ended up on the wrong end of a knife.
Eventually, I began to pursue my childhood dream of being a working musician. I started as a folk singer, performing at Philadelphia coffeehouses, schools and as a troubadour. I wrote songs for special occasions such as the bicentennial of the US Constitution and for nonprofit groups including the Submarine Veterans of WWII of Pennsylvania and the fellowship of the USS Olympia.
I was drawn to the positive thinking craze of the eighties. By the time of my diagnosis, I had self produced two recordings, accumulated a host of accolades for various songs and references for my school assembly programs and other presentations, purchased a house and met Rich. Curly Connor was my second guide dog. We were in the midst of my third recording, a two-hours-here and two-hours-there, pay-as-you-go venture which we hoped would give me a vehicle for showcasing my songwriting skills to take to Nashville.
Then, when I was forty, I found a hard lump, like a pencil eraser, in my left breast. Both of my grandmothers had died of metastatic breast cancer, prompting me to start getting regular mammograms in my thirties. The mammogram showed a tiny area of calcification, which the doctors were concerned about only enough to "keep an eye on." In young women, breast tissue is dense and especially for those of us with fibrocystic breasts negative mammograms are not entirely reliable. 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.
Thatīs good, right? No, thatīs not good. What youīre 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 thatīs that. Cancer, however, is denser tissue and doesnīt show up on ultrasounds. I didnīt know that, and apparently, my doctor at the time wasnīt clear about this distinction either. Fortunately, Rich thought I should have a family doctor 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 doesnīt look at you and say, "Oh, youīre dealing with cancer. You get a reprieve for now." Rich had just been down-sized out of the only job heīd had as an adult and we had family problems including the death of my aunt, my brotherīs struggle with a pituitary tumor and my future father-in-lawīs battle with prostate cancer. Operation Desert Shield was gearing up in the Middle East which directly affected family members and neighbors. Then, there were all of 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 to take stationery with the wrong phone number -- luckily, I had kept a copy of what we sent him, and no, I didnīt take the deal. Whatīs the point of stationery with the wrong phone number?
So, back to the diagnosis. I was given a choice of a lumpectomy with radiation or a modified radical mastectomy. I chose the latter in part to avoid radiation. It didnīt work. Malignant cells were found too close to the chest wall, or as they say in the business, "the margins werenīt clear." I remember being in the hospital with a huge protective bandage that made me look like I was the size of Dolly Parton when I learned that radiation was back on the table and that the results which would determine whether I needed chemo would take another two days.
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 were ever to be presented with a decision about having radiation or chemotherapy, I would opt out at once. Over the next two days, however, I not only made peace with the upcoming mega dose of x-rays, but I realized that I couldnīt really rule out chemo either. I pictured my hair falling out and how my face and body would feel and I began to make mental preparations for accepting the nasty side of cancer treatment. It turned out that 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 any treatment beyond the radiation.
Breast radiation therapy wasnīt the big deal I had supposed it would be. It doesnīt make you sick to your stomach, just tired and a bit sunburned in the last week or so. My church set up volunteer drivers to take me for my treatments — five days a week for five weeks. I enjoyed being with the people who took me and babysat for my guide dog for the half hour or so I was "in the back." Curly Connor 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. Probably the worst thing physically — and Iīm not forgetting that first painful day or so after surgery -- was that I eventually developed a severe case of tendonitis in my shoulder, which the doctors thought might have been from the positioning for the radiation.
Rich took better care of me than I could have imagined possible. We married shortly after my treatment ended. We started the process of downsizing — we didnīt really need two houses or two of a million other things. As I began to get my energy back, I refocused on my pre cancer goals and returned to the recording studio. Finally, we had the master for "The Last Straw" completed and sent it along with the art work to the magicians who transform such things into shrink-wrapped CDīs. We also signed up to create a small corporation. Then, guess what I found a week later?
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. This time they said a lumpectomy should do it, but I wanted more peace of mind than that.
My big regret was that I didnīt insist that they take both breasts to begin with. They claimed that the two cancers werenīt related, but on the other hand, told me that women with cancer in one breast are more likely to get it in the other.
If I had had them both off at the same time, I might have dispensed with the implants and avoided a slew of "complications" which prompted my plastic surgeon to regularly say while clicking his pen, "Iīve heard that this could happen, but Iīve never seen it before." The first one leaked — donīt worry, it was saline. Next I developed an edema around the 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 the implants slipped.
The other thing was that, as a blind person, my appreciation of the similarity between what I had given up and what I got was not based on visual appearance but tactile and internal sensations. I never got over the itchy, creeped-out feeling they gave me.
A few years down the pike after several procedures to lift up the sagging one, I noticed lumps near the chest wall. Probably scar tissue, but there was only one way to find out for sure. They would have to remove the implants to do a biopsy. My poor plastic surgeon was mortified when I told him not to bother putting them back in. He really was a good sewer, but the artistry was lost on me so out they came.
Iīve never regretted it for a moment. I have a lovely set of fake boobs that fit into a pretty bra — cotton, I canīt stand anything other than cotton against my skin anymore — but most of the time I wear vests or shirts with two pockets.
The truly difficult part of the second diagnosis was that it put an end to 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 contact person, it wasnīt 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. The new class of antidepressants helped me to stay in the battle. In an effort to widen my focus on other possibilities, I restricted my songwriting to merely recording the fragments of songs which popped into my brain spontaneously, telling myself that I could work on them later.
Rich and I had a seventeen acre parcel of Heaven in the Endless Mountains of Northeastern Pennsylvania. We hoped to retire there some day. Not long after having the troublesome implants removed — yes, it really was scar tissue — we decided to "get outa Dodge." Mountain life would be less stressful, cleaner and less expensive. Richīs field was so technical that he wasnīt about to find another job anywhere close to home and besides he had dreams too.
The challenge for me 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 places like the post office, church, grocery store or to the train where I had access to five counties worth of schools, libraries and churches to work at. I had lived alone for over twenty years and had become used to not "needing" much in the way of help. How would I handle the isolation? How would I deal with a new community which would be statistically much less likely to have an appreciation for the abilities of people without sight? It was true that I had wanted to live in the mountains since I first visited them as a pre school kid and got a lung full of clean, pine scented air. Most successful blind people live in urban areas though. 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 to rural Susquehanna County in ī97. Our dear Curly Connor died before the move, but he reached the ripe old age of fifteen. MoMo, my third guide, and Hunter, my current little black Lab, have had the good life and only needed to learn things like the mailbox, our neighborīs house, the barn and the trails on our property.
As it turns out, there has been a hermit inside me all along. I love taking walks on our own trails and on the dirt and gravel roads. I often think up a Haiku or two along the way. Rich complains that he has to pry me off the property.
My self-imposed ban on songwriting only lasted until 9/11. There are several local folk venues where my new music is appreciated. In 2007, I was asked to donate my song "The Edge of the Line" to the "Sound in Sight" project of the nonprofit, Performing Arts Division (PAD) of the National Federation of the Blind (NFB). The CD features eighteen original tracks and covers by promising blind recording artists from throughout the nation. Proceeds from sales of the CD support the Mary Ann Parks Performing Arts Scholarship, for blind students majoring in the performing arts.
Three years ago I learned to use a computer with the screen reader JAWS. The childrenīs book that I was taking notes on for years is coming together.
I re awakened my love of knitting — my mother had taught me when I was in high school. Nowadays, I make afghans and shawls in fancy patterns Iīve learned from the excellent collection of Braille books from the National Library Service for the Blind and Physically Handicapped. Most of them get given away — many to our local interfaith ministry which distributes them to senior citizens and young mothers.
Weīre still health nuts, but coffee, tea and chocolate are regular parts of our lives. Long term plans include improvements to the house and property, a home recording studio and some travel. I have remained cancer-free for nineteen years. I am considered cured.
One of the many nice things about our property is that milkweed and bergamot grow wild here, sometimes right by the house. Hundreds of butterflies of many types visit for weeks. Though I can no longer see them, Richīs descriptions of them remind me of that magical day in Lancaster County when one particular butterfly brought us hope, foretelling my survival, by landing on my arm not once but twice.
For more information check out
"The Last Straw" by Donna Hill: http://cdbaby.com/cd/donnahill
Apple I-Tunes: phobos.apple.com/WebObjects/MZStore.woa/wa/viewAlbum?playListId=259244374
Sound in Sight Volume #1: http://www.cdbaby.com/cd/padotnfotb
Performing Arts Division of the National Federation of the Blind: http://www.padnfb.org
Guide Dog Foundation for the Blind: http://www.guidedog.org
"Donīt 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 back yard, when I was a child living in the shadow of Bethlehem Steel in the 1950s. On summer afternoons, I would pack my duffle bag with my prized possessions. With this sack of treasures and the cacky cotton strap of my fatherīs Army canteen over my shoulder, I would head for the shady patch of grass next to the butterfly bush and spread out my blanket. When the blue blossoms were at their peak, butterflies would visit. Sometimes, as I watched them flit from flower to flower, one would land on my arm. But that was the fifties. Butterflies had grown scarce over the decades.
My realization of the rarity of this visit came immediately. In a few seconds, my little messenger of hope took off. I stood transfixed and profoundly grateful. Within another few seconds, however, something even more unusual happened. The butterfly turned around, flew back to us and landed on me a second time, as if to say, "I really do mean you."
Cancer wasnīt my first challenge. I was born legally blind from the degenerative retinal condition Retinitis Pigmentosa, which steadily worsened throughout my childhood, giving rise to the myriad of social, educational and economic problems which usually accompany childhood disabilities. With little comfort other than that provided by an old guitar and a flair for songwriting, I had bluffed and blundered my way through the public schools before "mainstreaming" had anything to do with education. In spite of the unsought after opinions from people who believed that I had no business even trying, I graduated from college with a degree in English literature. Afterwards, -- and it was long overdue — I taught myself Braille and got my first guide dog, Simba, from the Guide Dog Foundation for the Blind in Smithtown, New York. The dread with which I had approached every step vanished and I started walking with joy for the first time in my life.
It took me two years to land a job with the Department of Public Assistance and required a move to Philadelphia. My career as a caseworker ended a year later, after an incident in which I ended up on the wrong end of a knife.
Eventually, I began to pursue my childhood dream of being a working musician. I started as a folk singer, performing at Philadelphia coffeehouses, schools and as a troubadour. I wrote songs for special occasions such as the bicentennial of the US Constitution and for nonprofit groups including the Submarine Veterans of WWII of Pennsylvania and the fellowship of the USS Olympia.
I was drawn to the positive thinking craze of the eighties. By the time of my diagnosis, I had self produced two recordings, accumulated a host of accolades for various songs and references for my school assembly programs and other presentations, purchased a house and met Rich. Curly Connor was my second guide dog. We were in the midst of my third recording, a two-hours-here and two-hours-there, pay-as-you-go venture which we hoped would give me a vehicle for showcasing my songwriting skills to take to Nashville.
Then, when I was forty, I found a hard lump, like a pencil eraser, in my left breast. Both of my grandmothers had died of metastatic breast cancer, prompting me to start getting regular mammograms in my thirties. The mammogram showed a tiny area of calcification, which the doctors were concerned about only enough to "keep an eye on." In young women, breast tissue is dense and especially for those of us with fibrocystic breasts negative mammograms are not entirely reliable. 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.
Thatīs good, right? No, thatīs not good. What youīre 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 thatīs that. Cancer, however, is denser tissue and doesnīt show up on ultrasounds. I didnīt know that, and apparently, my doctor at the time wasnīt clear about this distinction either. Fortunately, Rich thought I should have a family doctor 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 doesnīt look at you and say, "Oh, youīre dealing with cancer. You get a reprieve for now." Rich had just been down-sized out of the only job heīd had as an adult and we had family problems including the death of my aunt, my brotherīs struggle with a pituitary tumor and my future father-in-lawīs battle with prostate cancer. Operation Desert Shield was gearing up in the Middle East which directly affected family members and neighbors. Then, there were all of 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 to take stationery with the wrong phone number -- luckily, I had kept a copy of what we sent him, and no, I didnīt take the deal. Whatīs the point of stationery with the wrong phone number?
So, back to the diagnosis. I was given a choice of a lumpectomy with radiation or a modified radical mastectomy. I chose the latter in part to avoid radiation. It didnīt work. Malignant cells were found too close to the chest wall, or as they say in the business, "the margins werenīt clear." I remember being in the hospital with a huge protective bandage that made me look like I was the size of Dolly Parton when I learned that radiation was back on the table and that the results which would determine whether I needed chemo would take another two days.
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 were ever to be presented with a decision about having radiation or chemotherapy, I would opt out at once. Over the next two days, however, I not only made peace with the upcoming mega dose of x-rays, but I realized that I couldnīt really rule out chemo either. I pictured my hair falling out and how my face and body would feel and I began to make mental preparations for accepting the nasty side of cancer treatment. It turned out that 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 any treatment beyond the radiation.
Breast radiation therapy wasnīt the big deal I had supposed it would be. It doesnīt make you sick to your stomach, just tired and a bit sunburned in the last week or so. My church set up volunteer drivers to take me for my treatments — five days a week for five weeks. I enjoyed being with the people who took me and babysat for my guide dog for the half hour or so I was "in the back." Curly Connor 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. Probably the worst thing physically — and Iīm not forgetting that first painful day or so after surgery -- was that I eventually developed a severe case of tendonitis in my shoulder, which the doctors thought might have been from the positioning for the radiation.
Rich took better care of me than I could have imagined possible. We married shortly after my treatment ended. We started the process of downsizing — we didnīt really need two houses or two of a million other things. As I began to get my energy back, I refocused on my pre cancer goals and returned to the recording studio. Finally, we had the master for "The Last Straw" completed and sent it along with the art work to the magicians who transform such things into shrink-wrapped CDīs. We also signed up to create a small corporation. Then, guess what I found a week later?
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. This time they said a lumpectomy should do it, but I wanted more peace of mind than that.
My big regret was that I didnīt insist that they take both breasts to begin with. They claimed that the two cancers werenīt related, but on the other hand, told me that women with cancer in one breast are more likely to get it in the other.
If I had had them both off at the same time, I might have dispensed with the implants and avoided a slew of "complications" which prompted my plastic surgeon to regularly say while clicking his pen, "Iīve heard that this could happen, but Iīve never seen it before." The first one leaked — donīt worry, it was saline. Next I developed an edema around the 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 the implants slipped.
The other thing was that, as a blind person, my appreciation of the similarity between what I had given up and what I got was not based on visual appearance but tactile and internal sensations. I never got over the itchy, creeped-out feeling they gave me.
A few years down the pike after several procedures to lift up the sagging one, I noticed lumps near the chest wall. Probably scar tissue, but there was only one way to find out for sure. They would have to remove the implants to do a biopsy. My poor plastic surgeon was mortified when I told him not to bother putting them back in. He really was a good sewer, but the artistry was lost on me so out they came.
Iīve never regretted it for a moment. I have a lovely set of fake boobs that fit into a pretty bra — cotton, I canīt stand anything other than cotton against my skin anymore — but most of the time I wear vests or shirts with two pockets.
The truly difficult part of the second diagnosis was that it put an end to 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 contact person, it wasnīt 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. The new class of antidepressants helped me to stay in the battle. In an effort to widen my focus on other possibilities, I restricted my songwriting to merely recording the fragments of songs which popped into my brain spontaneously, telling myself that I could work on them later.
Rich and I had a seventeen acre parcel of Heaven in the Endless Mountains of Northeastern Pennsylvania. We hoped to retire there some day. Not long after having the troublesome implants removed — yes, it really was scar tissue — we decided to "get outa Dodge." Mountain life would be less stressful, cleaner and less expensive. Richīs field was so technical that he wasnīt about to find another job anywhere close to home and besides he had dreams too.
The challenge for me 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 places like the post office, church, grocery store or to the train where I had access to five counties worth of schools, libraries and churches to work at. I had lived alone for over twenty years and had become used to not "needing" much in the way of help. How would I handle the isolation? How would I deal with a new community which would be statistically much less likely to have an appreciation for the abilities of people without sight? It was true that I had wanted to live in the mountains since I first visited them as a pre school kid and got a lung full of clean, pine scented air. Most successful blind people live in urban areas though. 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 to rural Susquehanna County in ī97. Our dear Curly Connor died before the move, but he reached the ripe old age of fifteen. MoMo, my third guide, and Hunter, my current little black Lab, have had the good life and only needed to learn things like the mailbox, our neighborīs house, the barn and the trails on our property.
As it turns out, there has been a hermit inside me all along. I love taking walks on our own trails and on the dirt and gravel roads. I often think up a Haiku or two along the way. Rich complains that he has to pry me off the property.
My self-imposed ban on songwriting only lasted until 9/11. There are several local folk venues where my new music is appreciated. In 2007, I was asked to donate my song "The Edge of the Line" to the "Sound in Sight" project of the nonprofit, Performing Arts Division (PAD) of the National Federation of the Blind (NFB). The CD features eighteen original tracks and covers by promising blind recording artists from throughout the nation. Proceeds from sales of the CD support the Mary Ann Parks Performing Arts Scholarship, for blind students majoring in the performing arts.
Three years ago I learned to use a computer with the screen reader JAWS. The childrenīs book that I was taking notes on for years is coming together.
I re awakened my love of knitting — my mother had taught me when I was in high school. Nowadays, I make afghans and shawls in fancy patterns Iīve learned from the excellent collection of Braille books from the National Library Service for the Blind and Physically Handicapped. Most of them get given away — many to our local interfaith ministry which distributes them to senior citizens and young mothers.
Weīre still health nuts, but coffee, tea and chocolate are regular parts of our lives. Long term plans include improvements to the house and property, a home recording studio and some travel. I have remained cancer-free for nineteen years. I am considered cured.
One of the many nice things about our property is that milkweed and bergamot grow wild here, sometimes right by the house. Hundreds of butterflies of many types visit for weeks. Though I can no longer see them, Richīs descriptions of them remind me of that magical day in Lancaster County when one particular butterfly brought us hope, foretelling my survival, by landing on my arm not once but twice.
For more information check out
"The Last Straw" by Donna Hill: http://cdbaby.com/cd/donnahill
Apple I-Tunes: phobos.apple.com/WebObjects/MZStore.woa/wa/viewAlbum?playListId=259244374
Sound in Sight Volume #1: http://www.cdbaby.com/cd/padotnfotb
Performing Arts Division of the National Federation of the Blind: http://www.padnfb.org
Guide Dog Foundation for the Blind: http://www.guidedog.org
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