A United Front: Filmmaker Allison W. Gryphon’s Battle with Breast Cancer

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Derek Martin Wade

If you were to ask Allison about her bout with stage III breast cancer she would not tell you about the three surgeries, six rounds of chemotherapy or month of radiation treatments she endured. She would probably not tell you about the tattoos burned into her chest that guided the lasers to the exact location of the cancer cells but she might tell you that she didn’t have a ‘bout’ with cancer. It was not a sparring match but a dirty fight, not a skirmish or a battle but a war.  Allison W. Gryphon; award-winning screenwriter, novelist and filmmaker brought every weapon in her arsenal to cancer and now she has two more; her forthcoming film What the F@#- is Cancer and Why Does Everybody Have It? and the TheWhy?Foundation.org

In Gryphon’s new film, What the F@#- is Cancer and Why Does Everybody Have It?, set to join the film festival circuit this summer, people are asked to describe cancer in one word. In my conversation with Allison, she said that when she asked her oncologist, who was at first stumped by the question, he pinpointed it in three words, “Enemy number one.”

Allison never expected to get “Enemy number one” let alone a cancer that had progressed as far as it had. She was in an age group of women who were less likely to get cancer; she was 38 years old, well below the 45 year olds and older group who were ten times more likely to be diagnosed with the same disease. In addition, a history of breast cancer did not exist in her family. Allison was also a self-admitted pilates addict and was in excellent physical shape. She cared about her body and what she put into it. She ate a healthy diet but was diagnosed with cancer anyway.

Three days after her diagnosis, Allison sat in a coffee house drinking the best coffee she had ever had and she felt “wide awake.” Everything that mattered, mattered so much more. She would no longer live her life the same and nothing would be taken for granted. It was a wake-up call.

Allison W. Gryphon did not live her life preparing for a battle with cancer but when cancer did come she was in top fighting form. German philosopher Friedrich Nietzsche said, “The best weapon against an enemy is another enemy” and Allison was about to become breast cancer’s worst enemy. Allison believes that it is her healthy lifestyle that contributed to her success and gave her the strength to carry on through the rigorous chemotherapy and the cancer cell-killing radiation. In addition, she enriched her body by redefining her healthy diet by “eating clean;” a diet of organic, unrefined, minimally processed and locally grown food including antibiotic-free and growth hormone-free meats.

Allison believes that a cancer patient has to be a cancer fighter, to be proactive in their own recovery and to ask for help. She says “Fighting cancer is a team sport.” Allison’s team includes an army of friends and the The Why? Foundation.

There are hundreds of breast cancer websites that provide information in black and white text, statistics in graphs and pie charts bordered by pop up ads selling everything pink. Websites like these are filled with the ‘whats;’ What is Cancer? What are the symptoms? What are the treatments? What are the drugs and what are the chances? Nothing in these websites, including the website for the largest fundraiser for cancer research in the world aside from the U.S government, offers support for the newly diagnosed, provides emotional support for the recovering patient and answers the question ‘why?’

Allison Gryphon’s The Why? Foundation strives to provide a place for cancer patients and survivors to find answers, seek out support, community and real help. This place is an outlet for Allison’s experience as patient and survivor offering guideposts for others as well as a place for other sufferers and survivors to share their experiences. The Why? Foundation tells the recovering patient what to expect after treatment like how the simple things in our daily lives suddenly become very difficult.

There were slightly more than 230,000 new cases of invasive breast cancer diagnosed in the U.S. in 2011 of whom Allison W. Gryphon was one of them. That year almost forty thousand women died from the disease in the U.S. alone. That’s more than all the highway deaths and almost three times the homicide rate in the U.S. Allison produced her film for those cancer patients recently diagnosed and the additional 500,000 and more who are in varying stages of treatment as a means to create a united front to combat the deadly disease.

Today Allison W. Gryphon is believed to be cancer-free, is checked quarterly and is still fighting.

www.thewhyfoundation.org

Helping Others With What You've Got: How Alia Let Go Of Her Locks

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Why? Foundation Street Team Member, Alia Tarraf

I love having long hair.  Its part of my personality.  It tells the world a big part of who I am and what I'm feeling on any particular day.  I can wear it part way up on days I want to feel like a Disney princess.  Or pulled back in a bun when I mean business.  Or a messy ponytail when I feel artistic and creative.  Sometimes I even wear it down just because I want to hide from the world.

Like so many women, my hair is a part of who I am and very often, I've allowed it to define me.  We're told that its a part of our beauty.  And our beauty is so wrapped up in who we are and can unfortunately dictate our confidence levels.

So when I saw my friend, Julie, with a freshly shorn bob at a party after college one night, I marched up to her and demanded to know what happened to her long beautiful chocolate brown hair.  She replied nonchalantly, "I gave it to Locks of Love."  Oh great, some hippy dippy charity.  "What's that?"  I asked, bewildered.  "It's a charity that makes hairpieces for people who don't have hair due to a medical condition."

No.  No, I was not going to feel guilty for this.  Julie wasn't condemning me at all, she just simply told me what I had asked.  She had almost shrugged.  Shrugged off that she didn't care her long hair was gone.  Now, I know this all might sound incredibly vain and silly, but I had somehow linked my worth to my beauty, i.e. my hair.  Julie was helping someone else, and had the self-confidence to do it, and I didn't.

I went to bed that night and couldn't stop thinking about it.

I decided to go on the Locks of Love website, just to check it out.  Not that I would do anything.  It turns out that Locks of Love not only provides hairpieces for people who don't have hair due to a medical condition, they specifically help disadvantaged children under age 21 suffering from long-term medical hair loss from any diagnosis.

 "Our mission is to return a sense of self, confidence and normalcy to children suffering from hair loss by utilizing donated ponytails to provide the highest quality hair prosthetics to financially disadvantaged children.  The children receive hair prostheses free of charge or on a sliding scale, based on financial need."

Seriously?  Who are these people?  Because they just turned me into a jackass in about two seconds.  Was I really going to let my vanity and insecurity come before a disadvantaged child with no hair because of a medical diagnosis?  Who had I become?  My problems suddenly seemed super lame.  1. These kids are dealing with a medical condition, from alopecia areata to cancer.  2. They lose their hair because of it.  3.  They don't have the means to fix it.  Yeah, it was time to get over myself.  I needed to do this and if I lost my attractiveness, well, hopefully it would grow back.

I walked into the salon the next day.  I had googled salons in my area that were associated with Locks of Love and this one gave a free haircut with a hair donation.  They have them all over the country.  The hairstylist braided my hair, measured the minimum 10 inches required to donate, asked if I was ready, and cut it off.  I'm not going to lie, I may have cried a little.

The salon sent it in the mail to Locks of Love for me the next day.

I'm not saying you need to go out and cut off all your hair.  But I learned there are so many ways we can help others.  Something as small as donating your hair can go such a long way and mean so much to someone else.  This was a wake-up call.  Sometimes I get so focused on myself and can't see past my own nose.  Which, by the way, I wish was smaller.  But seriously, when I remember that so many others have been dealt a much harder hand, I am so humbled.  And I can help.  Even if I don't have the means.  I can donate my hair, I can run an errand, I can volunteer.

And you know what's funny?   I liked my bob.

~

Click Here To Learn More About Locks of Love.

A reminder from India Arie - I Am Not My Hair

Practical Tips to Help You and Your Loved Ones Conquer Cancer

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

A Webtalk Radio Interview with Stage 3a Breast Cancer Fighter Allison W. Gryphon on Finding Your Supreme Power with Mark Brener & Cece Suwal.

Click the link below to listen:

http://webtalkradio.net/internet-talk-radio/2013/01/21/finding-your-supreme-power-practical-tips-to-help-you-and-your-loved-ones-conquer-cancer/

MOM'S GOT CANCER - CHAZ SALEMBIER RECALLS GETTING THE NEWS AT THE AGE OF 8

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

 

written by Chaz Salembier 

Eight months was still a lot of time, I remember telling myself. With fuzzy kid-logic – in which hours are days and days are months – I had convinced myself that this was such an infinitesimally small problem that like an ant under my shoe I shouldn’t give it a second though. In fact, I should ignore it. Elephants in rooms, after all, only exist if you let them. So I turned a blind eye toward it. In the 90’s, when soda was cheap and video games were starting to make it possible to live lives you never thought existed, it was easy enough to distract myself. Out of head, out of mind. Eight months was a long… long time.

I hated school. I mean, really, what kid didn’t, but school was school. I remember spelling it “skool” in my book reports as a juvenile middle finger to my grade school teachers – you can’t get to me. You can’t teach me (belligerent eye roll). My mother drove me to school every morning. It was a short drive, maybe two minutes, short enough that most days I had to walk. But two minutes is an awfully short time. Short enough that it’s difficult to convince my mother that my stomach is feeling particularly grouchy. I complained heavily, with plenty of nasally whine and, sighing, caving under my insistence; she drives past the front door of the school and takes me home. I play it straight, don’t blow my cover, on my way home, which is key to finagling my way out of another day of classes.

There was no official family announcement that I can remember. As an eight year-old, the finality of death was still a relatively new concept and one that still seemed absurd. I didn’t even quite know what was happening to my mother. She had leukemia, I knew, something nasty to do with her white blood cells, but most of her disease was nothing more than whispers behind closed doors. I don’t know if my parents were trying to keep me in the dark intentionally, to protect me, or if I genuinely didn’t understand. All I know for certain is I didn’t know for certain.  

We arrive at home, and I’m told to lie in bed, which I do because, hey, lying in bed is better than sitting at a desk. My mother brings me a bowl of soup and, to pass the time, she reads to me. This is not an uncommon sight at my house – me lying in bed, my mother in the chair next to me, some wild, large, philosophical fantasy novel, with enough imagery to keep my impatient and TV-trained brain occupied. Today, it is the final book in the Chronicles of Narnia. I sip soup and listen to her read The Last Battle, as Aslan – the great a noble lion and quite unsubtle metaphor – judges all of those who have fought in the great battle. The good guys are invited to join him in His country and, with that, Narnia comes to an end. Father Time calls the stars down from the skies, he puts out the moon and the sea washes over the land. Narnia is no more. My mom has read this book to me a few times. She always pauses at this part.

Around this time I started seeing Mrs. V, an older woman who looked as though she was plucked from someone’s garden. She invited me to her office once a week during school and, at the time, I was none too concerned why as I strutted room to the envy of my classmates. Mrs. V and I would sit in her small office where I would fill out puzzles, draw, and do visual word challenges. I thought I was pretty damn special at the time. As though I might be just awesome enough to play for an hour a week with Mrs. V while answering her trivial and banal questions about my family. I would later learn that Mrs. V was a grief counselor, who was preparing me for the death of my mother.

I spend the rest of the day walking around with my blanket around my shoulders, trailing after my mother like the world’s most annoying jet stream. My stomach feels fine. It always does. And she knows this. Yet I’ll pull this stunt a few more times over on my mother in the coming months. Each day on the short car ride to school I’ll groan and complain with the bravado of a Shakespearian actor on his deathbed. And day, I’ll wait in bed for my bowl of soup and whatever fantastic book has been dug up from our basement library. What I won’t admit at the time, however, is that this isn’t about skipping class, the joy of knowing my classmates are stuck doing math workshops in Home room, or playing coordinated tunes on hand bells in Music. No, staying home from school isn’t so much about “school” as it is “home.” Because home is where mom is. And any day more I get to spend with her is a better day than one spent away. Because these days go by so, so very quickly.

Eight months became weeks, became days. For reasons that she can explain better than I, eight months came and went with little ramification. Throughout the rest of my childhood, I was told not to get my hopes up, not to expect her at my baseball game come next spring, or to welcome me home from my driver’s test, or even at my high school graduation. But as I write this, having graduated from not one but two educational institutions, she is skiing somewhere in western Colorado. This past summer, she was told that one more year of recession and she can stop taking her medication. Suddenly, the rest of her life seems like a long… long time.

In 1995 Chaz’s mother, Janice, was diagnosed with Chrinic Mylegenous Leukemia and given less than a year to live. Proving cancer was messing with the wrong lady, Janis is currently happily taking on the world and enjoying every moment of every day. To read the short story THE BLAST CELLS written by Janice about her cancer experience please click the link below.

http://thewhyfoundation.blogspot.com/2012/08/the-blast-cells.html

A True Warrior: Deerfield ball boy Luke Strotman is on his way to beating cancer for a third time

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

 

By Josh Rosenblat on Sept. 28, 2012

This story appears in the Sept. 28 issue of Deerprints.

Luke Strotman stands in the parking lot of Adams Field, silhouetted against a mostly gray sky streaked with the orange rays of a setting sun. Luke watches the Deerfield sophomore football team’s game against Waukegan. Calm, talkative and joking, Luke will be taking the home turf for the final time in just a couple of hours as a member of the DHS varsity football team.

Although he has been a part of the team for the past four years, Luke has never caught a pass, made a tackle and isn't listed on the team's roster. That doesn’t mean that Luke fails to help DHS win though. As the ball boy, Strotman sprints on and off the field giving the referees fresh footballs from the sidelines whenever they are needed.

“Honestly, if he didn’t have a shaved head, you wouldn’t know he had cancer,” Mark Strotman, Luke’s brother, said.

Luke has waged a 13 year war against two types of cancer, with a third battle commencing this summer.

---

When Luke was 4 years old, doctors told the Strotman family that Luke had a cancer known as neuroblastoma. The cancer is a tumor that develops in nerve tissue and is usually found in infants and young children. Luke underwent radiation treatment and the neuroblastoma eventually subsided.

Nine years later, however, Luke said he was feeling increasingly sick. After going to the hospital, tests came back with dreadful news. At 13, Luke faced his second battle with cancer. As a result of the chemotherapy used to treat the neuroblastoma, Luke developed acute myeloid leukemia (AML), a cancer that begins in the bone marrow and can quickly move into the blood stream. In order to cure AML, Luke received a bone marrow transplant from his brother, Mark.

---

This summer, Luke sat in a hospital room at the Lurie Children’s STAR Clinic in Chicago. After he arrived, two Chicago Cubs players paid him a visit. Tony Campana, who is now cured of Hodgkin's lymphoma after ten years of treatment and Anthony Rizzo, who also battled the disease, gave Luke a Cubs jersey with his last name on the back.

But what Campana and Rizzo really gave Strotman was a jumpstart on the optimism he would need to get through the next few minutes, let alone the next week, month or year.

“The happiness only lasted an hour,” Beth Strotman, Luke’s mother, wrote on Luke’s CaringBridge page, a website for cancer patients that updates friends and family of the patient’s progress. “Dr. Kletzel came in to tell us that the blood test showed blasts, or immature white blood cells, were present. That could only mean one thing: our hearts are broken and four years after battling AML, the leukemia is back.”

Luke began a new journey to defeat cancer on June 18, 2012. He began his chemotherapy less than a week after his seventeenth birthday.

---

During Luke’s first round of chemotherapy this summer, Mark shot him a quick text while at work just to check up on him. Mark asked Luke how he was doing and what he was up to.

“Nothing. Getting chemo,” Luke texted his 22-year-old brother.

Nothing. Getting chemo.

It is that passing reference of the potentially deadly treatment of chemotherapy that makes Luke such a hero to Mark. It isn’t that Luke doesn’t understand what he goes through, Mark says, but his optimism always shines through as he is willing to go through whatever it takes to get better.

“I texted him in order to boost his spirits,” Mark said. “But he boosted my spirits with that text. He is being such a trooper through all of this…here I am worrying about Luke getting this chemotherapy and he is just kind of shaking it off. I’ll remember that text for the rest of my life.”

Evidenced by his nonchalant text message, Luke’s positive outlook on his situation gives not only himself the strength to keep fighting but it inspires his family to keep up the fight alongside him.

“Having a positive attitude is half the battle. Our family could not be more positive about it and that is led by Luke. Luke is probably the most positive out of all of us. He keeps us going, which is unbelievable,” Mark said.

---

On Aug. 28 just before 7 p.m., Luke Strotman walked out to the mound at Wrigley Field. He peered down the 60 foot, six inch path towards his target: Cubs pitcher Brooks Raley. Pitching out of the stretch, Strotman lifted his left leg up off the dirt cocked his right arm back and let the ball go.

“I was worried. I thought that it was going to seem like a long throw,” Luke said. “But once I got on the mound, it did not seem like that long of a throw.”

Earlier in August, the Cubs sent Luke a video featuring Rizzo and Campana, along with owner and family friend of the Strotmans Tom Ricketts, encouraging him to keep battling against leukemia and offered Luke the opportunity to throw out the first pitch at Wrigley Field.

“When Rizzo said, ‘We want you to come throw out the first pitch,’ I nearly lost it,” Luke said.

But for Luke, the first pitch was only a small part of what made the night of Aug. 28 so special.

The Strotmans were expecting the results from tests that Luke had taken to come back either that day or the next. Based on the results, Luke’s doctors could determine whether his AML was in remission.

“We were all kind of on pins and needles,” Mark said. “It was funny because we didn’t know whether we wanted to find out before Luke threw out the first pitch because if he wasn’t in remission, that was pretty much bad news.”

Before arriving at Wrigley, Beth informed those who were traveling with the family that she just received a call from Dr. Elaine Morgan with the results of the tests. The tests came back showing that the cancer was in remission.

“I got a little teary because, you know, I don’t have to go through any more of this chemo and stuff,” Luke said. “It could not have been a better night: throwing out the first pitch at a Cubs game and finding out I’m cancer free.”

Although being in remission doesn’t mean that Luke is totally cured of AML, it does mean that he can start to prepare for another bone marrow transplant later this year.

“He’s as good as he could be right now,” Mark said.

The night served as a testament to the strength of Luke and his family. Moments of pure joy like this are hard to explain and have been few and far between for the Strotmans this summer.

“It was just unbelievable news. It couldn’t have been better timing. It was honestly like it was out of a movie,” Mark said. “We were on our way to have this amazing night and we found out some even more amazing news.”

---

With beads of sweat dripping over their silver facemasks and onto the turf at Adams Field during preseason two-a-days, head coach Steve Winiecki’s Warriors were getting ready for their first game against Zion-Benton. Coming off a conference championship in 2011, every member of Winiecki’s team was hungry to get back onto the field, even Luke Strotman.

Normally, Luke would be out at practice helping with bags of equipment and would be another set of watchful eyes for the coaching staff. This year, however, Strotman wasn’t physically present at Deerfield’s training camp like he was in the past.

As position battles raged and coaches installed plays throughout the summer, Luke endured chemotherapy and constant trips to the hospital in an effort to be ready for the Warriors’ opener on Aug. 30.

After a few rounds of chemotherapy, clearance from Dr. Morgan and three days removed from finding out that his cancer was in remission, Luke was ready for week one.

“I just remember walking out of our walkthrough before we got on the bus and there was Luke and his dad. Luke was ready to go,” Winiecki said.

Although neither Luke nor Winiecki had any doubt that Strotman would be attending the game, their emotions were hard to overcome.

“When I just saw coach Winiecki for the first time in who knows how long, I really thought I was going to cry and I thought he was going to cry also. We gave each other a big, big hug and he just wanted to know how I was doing.  I told him, ‘I was doing fine. I told you that I would do everything I could to get to this game and I’m right here and ready,’” Luke said.

Luke’s relationship with Winiecki began when he coached Luke’s older brothers Mark and Jack in high school. After getting to know each other better through Luke’s years at DHS, Luke now looks at Winiecki as a mentor and role model.

“Four years later, Winiecki is a guy I look up to. He’s one of the reasons why I just keep fighting hard. Every time I wanted to just quit the battle, I just remember him always telling us that you don’t ever give up the fight, you keep fighting until the final whistle and that is, just simply, what I did. I don’t think I could have gone through this without Winiecki,” Luke said.

The feeling, Winiecki insists, is more than mutual. Winiecki, along with the Warrior football team look to Luke for motivation and as an example of what persistence, perseverance and hard work can accomplish.

“We look at Luke as our inspiration,” Winiecki said. “It’s that you’ve got this guy who is fighting this disease with every ounce of energy he has and putting up this battle every day… He’s so selfless and this is what gets me so choked up about it…You talk about ‘fighting the good fight,’ we talk about that in the game, but that is so trivial compared to what he’s doing. And those are the lessons. You know, winning is fantastic. We want to have conference championships but the lessons we get out of sports in general, and football in particular, is being selfless and sacrificing for some greater good. That is what Luke’s doing, but his greater good is his life.”

---

As one last Hail Mary attempt by DHS quarterback Ben Ethridge fell to the turf to end a 14-7 loss to Waukegan, Luke raised both hands to his head, looked towards the dark September sky and winced.

Luke rarely showed signs of anguish when battling cancer, but as the clock struck zero and with the Warriors down by seven, he seemed vulnerable. He wasn’t vulnerable in the sense that he was weak, but it was as if his positive and hopeful personality vanished for that instant.

For Luke, Deerfield football isn’t just another sports team. He never appears sorry for himself that he can’t play, it is simply enough for Luke to be a part of the team. That was all Luke needed to drive him toward getting back on the field against Zion-Benton and maintaining an encouraging outlook even when doctors diagnosed him with cancer for a third time.

But it isn’t cancer that is on the forefront of Luke’s mind right now; it is how the Warriors may fare without him. Luke’s senior season will be cut short as he prepares for his second bone marrow transplant in four years in an effort to win this battle and ultimately his war with cancer.

“I just expect the team to do what I always want them to do,” Strotman said. “That is just to play their hardest. I don’t care if they get a win or a loss. I just want to see them work their hardest. My season is coming to an end very soon and I just hope they continue playing hard even though they might have to spend the last four games of the year without me. I hope they still can keep up their spirits.”

Taking a lesson from Luke, keeping their spirits high shouldn’t be all too difficult.

Bronwyn the Brave by Allison W. Gryphon

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

 

I wrote this story for my A.W. Gryphon Bits & Pieces Blog on 11 September 2011. It’s strange looking back on that now. That date came four days after my fifth of six chemotherapy sessions… and four days after I lost my dear friend and step-mom to brain cancer. I was bloated, bald, desperate for reconstructive surgery, being riddled with hot flashes and night sweats, exhausted and full of hope. When you are alone with your soul, that what’s you have to decide, are you willing to hang on to hope? That was never an issue for me. I was full of hope and fight like I didn’t know existed. I was also full on honesty and truth on a level I never knew existed. I’d always been a straight forward person, but with cancer it was magnified and I’m grateful that it still is. It’s that magnified truth that inspired this story of Bronwyn the Brave.

~

Brave. It’s a big word and honorable one. A crown that is never taken lightly by those on the giving or receiving end of it. Brave was a concept that Bronwyn had always admired. That she felt was the greatest compliment to anyone whom it was bestowed upon. A brave person was one to be celebrated and praised. Brave was a quality Bronwyn had a great deal of respect for accompanied by an adoration which she felt was welcomed and treasured by anyone on the receiving end of it no matter who or where the compliment came from. Until, that is, Bronwyn had a complete understanding of what one had to go through to be deemed, brave. Until the person on the receiving end of the title of brave was her.

Brave is one thing to someone presenting the compliment and something altogether different to the person receiving it. It isn’t that it is good or bad or negative, not at all. It is simply something you can’t imagine until you yourself have been deemed, “brave.” To date, that was Bronwyn’s largest lesson and realization in her journey.

She in no way wanted to complain, not at all, Bronwyn only wanted to be understood and was therefore always careful with her words when trying to explain her feelings. It was an honor for her to be thought of as an inspiration and to be held in such high esteem. It was taking quite a bit of getting used to as in Bronwyn’s mind she was simply rolling with the punches life had decided to send her way. She wanted to help and empower everyone she could, but what Bronwyn also wanted was to feel loved and to be loved, not because of what she was doing or how she was doing it, but because of who she was. Who she was completely. With all of the courage and fight she was exhibiting, for Bronwyn she was simply walking down the only path available to her. She was still a normal woman with dreams of love, career, romance and adventure. She lived for quietly watching the sun set, walking on the beach while the daylight kissed her skin and curling up under a warm blanket on a cold afternoon to watch movies and maybe order a pizza to enjoy with a good friend or a sweet love.

Bronwyn was many different things. Brave was only one of them. Brave wasn’t even something she realized she was until people began telling her that on a daily basis. It was the label that changed everything for her. For her core group of friends and family, brave was an addition to the Bronwyn they already knew. For those less close to her and just coming into her life, brave defined her or so it seemed in most cases. In the beginning that was alright, then slowly, but surely Bronwyn realized that brave put her in an invisible glass box on the shelf of a virtual museum where she could be celebrated and admired, but not touched or hugged or loved or understood for who she was as a complete person. As much as she understood and wholeheartedly appreciated the new phenomenon, the label of brave was the loneliest thing she had ever experienced in her life. It was truly the definition of a double-edged sword for her because as much as it tortured her it was the greatest compliment she had ever known.

In many ways Bronwyn had become untouchable to others overnight and that frightened her. As elated as she was to have become a brave and inspiring being to so many, knowing that there was no going back, Bronwyn could only wonder who could see past that and who would be able to come into her life beyond the brave and truly love her. The brave her, the scared her, the quiet, the adventurous, the annoying, the playful, the good, the bad, the ordinary… all of it. How many friends would she have? How many would lose sight of her? Who would someday walk through an Italian vineyard with her simply for the soft company, taste of the grapes and peaceful bliss of the moment without it being about walking beside the brave that defined her in so many ways to so many?

It was in fact a double-edged sword and the sword belonged to Bronwyn for the remainder of her existence. It was something that could not be changed and something that Bronwyn had no desire to change. Her experience and outlook was so incredibly different than what the general consensus from the outside looking in seemed to be. Bronwyn was happy with so much of what cancer had brought into her life. Everything was different. More exciting. Better. Nothing was out of reach. Impossible was a concept that no longer lived in her world. She was in the middle of experiencing the scariest, most empowering and most liberating gift that life would ever give her and she knew that. The diagnosis and journey through the fight had given Bronwyn a perspective on life she never would have had and which she held close to her heart, understanding all the while that cancer too was a double-edged sword which angered and freed her to extremes beyond comprehension.  

There were no decisions or rationalizations to be made. There was nothing here nor there to be done other than wait and see who did what and when as life continued. For Bronwyn all there was to do was express herself in the manner that felt most comfortable to her, a manner that allowed her to be. On some days that would be hard, on others liberating. It was all part of accepting the woman she was and the somewhat mythical character she was becoming. It was the beginning of Bronwyn the Brave.

awgryphon©

Thanks, cancer by Kathryn Ferrara

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

A note from Allison W. Gryphon: 

In creating the Why? Foundation, working on the documentary What the F@#- is Cancer and Why Does Everybody Have it? and fighting my own cancer openly, many unexpected and extraordinary people have come into my life. Most surprisingly and disturbing are the number of young people who have faced cancer themselves or helped others fight the fight. Most recently I met Kathryn Ferrara, a recent college graduate, with unfortunately and fortunately, a profound understanding on what it’s like to stand by someone struck by cancer.

Thanks, cancer by Kathryn Ferrara

I have been surrounded by cancer my whole life, and I never really knew it. I center my life on a few key things, three of which are my family, my faith and my work. And cancer has tangibly left its mark on all of them. Here are three ways it has shaped those pillars.

Mind over matter. Literally.

There’s the saying that if you haven’t had cancer, then you know someone who has. True enough for me since the day I was born. I have a grandfather who survived colon cancer back when it was less curable and more terminal. He was in his mid-forties, and it didn’t look good. I mean, when does cancer ever look good? It doesn’t. But my grandfather was stubborn. There are supposedly five stages of grief in accepting a terminal illness (denial, anger, bargaining, depression and acceptance). Well, my grandfather never got past denial. He simply refused the prognosis and shut the door on death. Everyone in my family agrees that he survived on sheer mental willpower. He passed that on to my mom who passed it on to her kids, including me. He also passed along a passion for literature and writing. My first gift that my grandfather gave me was a copy of Poe’s “The Raven” with his notes in the margin. Now I have a stack of poems from my grandfather and a journalism degree that was inspired by them. Now every October when we celebrate my grandfather’s birthday, I’m that much more thankful. Oh and he turned 81 last month. Denial has doubled his life. So, thanks cancer.

Slap in the face

My grandfather had the good kind of denial when it came to cancer. I experienced the “too-bad-to-be-true” kind of denial in high school. I was in ninth grade. It was a Monday in December, and I started talking with a friend about a sixth grader, Molly, who was battling leukemia and how it was great that the whole school was really coming together and supporting each other (blah blah clichés). My friend paused and said that Molly had died over the weekend. I hadn’t heard. The news cut through all those dumb clichés. It’s unfair that an 11-year-old’s death is what it takes to shake off clichés in general. Up until that point, my whole life was a cliché. After, things got more real. How I looked at life. How I thought about faith and the future. It all became more real. So for that, thanks cancer.

Not just a job

Two years into college, and it was time to finally find a real job (read: unpaid internship). About a hundred applications later, and I was offered a summer internship at The National Children’s Cancer Society. It was ideal career-wise since I’d be dabbling in marketing communications, social media management and getting a feel for the non-profit scene. But it was also ideal life-wise. Transformative really in how I thought about careers. The NCCS is all about passion. The organization is on a very clear-cut mission to help childhood cancer survivors and their families. I can only speak for the marketing side of the organization, but every decision, from the organization’s re-branding to the monthly survivor spotlight story, was important. Each decision carried a heavier weight, i.e. these cancer survivors. It’s the kind of work that not only sustains you but motivates you and encourages you to keep working. It’s the kind of the work that inspires you to jump in the deep end and reach out to people who are fighting cancer, ignorant of cancer or scared of cancer.

So here I am, mid-twenties, and just starting to realize and accept cancer’s role in my life. I never really knew it until I started to think about the big question, “how does cancer affect me?” And darn it, that sneaky little sucker has affected me a lot. It’s made me appreciate a family member more; it’s made me cast off a clichéd life for a more grounded one; it’s made my work less self-centered and more others-centered. So for that, thanks cancer.

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