Thursday, December 13, 2012

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.




Friday, December 7, 2012

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©

Sunday, November 18, 2012

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.


Thursday, September 13, 2012

SEVEN MONTHS PREGNANT AND DIAGNOSED WITH BREAST CANCER – HOW ONE WOMAN FOUND THE “SWEET SPOTS OF CANCER”

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY



by Alia Tarraf

“I felt like I was really living before I got cancer.  But now I'm living in full color.  Just yesterday I drove ten hours round trip to surprise my husband at the finish line of his 100-mile Best Buddies bike race [for children with Down syndrome] he did in honor of our daughter, Sadie.  I brought Sadie with me.  It was a surreal adventure that I would have never thought about doing before the cancer.  It was an easy decision to drive the distance just to see Todd's face when he crossed the finished line.  I'm incredibly thankful to be a girl with an attitude of gratitude.  I'm now seeing all my lemons turn to lemonade and life is so sweet.”

Heidi Virkus, a vibrant stay-at-home 39-year old mother of three, was seven months pregnant when she was diagnosed with breast cancer.  It was early in the morning.  Her mother-in-law had just arrived to help her with the kids.  Ten days earlier she had found a lump that both she and her OB thought was just her mammary glands getting ready to produce milk.  Her mother-in-law had just shut the door when the phone rang.  It was Heidi’s doctor.  Everything stopped.  Heidi quickly walked into the garage, her full belly carrying her unborn child, and came undone. 

Already fighting Crohn’s disease, Heidi had to decide whether or not to have chemo during her last trimester.  What would it do to her healthy baby?  What would it do to her family?  She decided she had to take the chance in order to live.  So she could be there for her other children, Sam (8), Sophie (5), Sadie (3), her adoring husband, Todd, and the baby on the way.

After Heidi’s fourth chemo session, she gave birth to an unscathed, perfect little baby girl named Sarah surrounded by her cheering committee.  Two weeks later, she started another four rounds of chemo.  When that ended, she had a double mastectomy.  Then later, a total hysterectomy.  And after all that, she had final breast reconstruction.  Through it all, Heidi’s faith, family and friends lifted her up and helped her fight through, especially Sadie.  Sadie acts as an anti-depressant, teaching Heidi, along with her husband and other children, more about herself than anything or anyone ever could.




WHAT KIND OF CANCER DID YOU FIGHT?
I had breast cancer. It was an isolated tumor that did not spread to the nodes.

IS THERE A HISTORY OF CANCER IN YOUR FAMILY?
My aunt has ovarian cancer and my paternal grandparents had both lung and colon cancer.

DO YOU KNOW WHERE YOUR CANCER CAME FROM?
No, possibly my dad’s side.  I lived on the edge for many years, abusing my body and mind with behaviors that could have contributed, but I'm really not sure.

DID YOU THINK YOU WERE AT RISK?
No.  I have been eating healthy for the past sixteen-plus years, meditating daily and living an anti-cancer lifestyle.

WHAT WAS YOUR RECOVERY FROM SURGERY AND TREATMENT LIKE?
The anticipation was worse than the actual treatment.  I take longer to heal because I have Crohn’s disease.  The hardest part of the healing was after the double mastectomy.  I have a high threshold for pain but the drains and wounds gave me debilitating pain.  Losing my hair and lashes was incredibly humbling, especially for someone like me who is slightly hair-obsessed.  I love hair and makeup.

DID YOU EXPERIENCE ANY SIDE EFFECTS FROM TREATMENTS OR SURGERY?
Yes.  I used and still use acupuncture for the side effects which include: sensitive teeth, numb extremities, nausea, exhaustion, insomnia, light sensitivity, joint pain and hair loss.

WHAT IS YOUR MEDICAL MAINTENANCE SCHEDULE NOW?
Visiting my oncologist and surgeons every six months.

HOW IMPORTANT DID YOU FIND DIET AND EXERCISE IN GETTING THROUGH TREATMENT AND SURGERY?
Early in my chemo treatments, I exercised but as the chemo built up in my system, and the more pregnant I became, I just didn’t have the energy anymore.  I fed my body three square meals a day, all with anti-cancer foods.  The food was fuel and medicine.

HOW DID YOU GET THROUGH THE DAY-TO-DAY OF YOUR CANCER FIGHT?
I was armed with the support of my friends, family and fellowship.  I was completely taken care of.  I surrendered to the healing process, but fought the cancer with everything I had.  I surrounded myself with positive people, asked for help, let people help me and actually enjoyed many moments.  I’ve thought about writing a book called the “Sweet Spots of Cancer” because I was so surprised that I embraced the process with looking for the good.  

HOW DID YOU FIGHT CANCER EMOTIONALLY?
My anti-depressants were my kids, especially pure and sweet Sadie.  I just had and do have so much to live for.  Even knowing that my unborn child needed me kept me going.  My hubby and I grew closer.  I continued to do as much life as I could.  Practicing my faith and belief in God helped tremendously.  I already had walked through having a special needs child. We knew we could handle cancer.

WHAT DOES BEING A SURVIVOR FEEL LIKE?
I am woman.  Hear me roar!  I am tougher than I thought.  It’s just such a huge relief. On the other hand, it’s super hard to readjust to “normal” life.  I’ve had a whirlwind of a year and during that time I had a baby too!  It’s almost like I’m waking up and saying, “Oh, wow, when did this fourth kid come and live here?”.   The calm after the storm with just gray days are actually sometimes more difficult than the high drama of the past cancer-fighting year.

WHAT ADVICE DO YOU HAVE FOR OTHER CANCER FIGHTERS?
Take good care of yourself.  Not just for you, but for the people around you.  Ask for help.  Sleep.  Write.  Shop a little.  Go on walks.  Watch TV.  Read.  Talk.  Cry.  Cry some more.  Laugh.  Eat Well.  Pray.  Thank.

WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?
Keep an open mind to new treatments and ideas.  Anything is possible.

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?
Buckle your seatbelts and put your own oxygen mask on first.  I made sure my husband and family were not completely putting their lives on hold.  Find healthy outlets.  You’re fighting this together.  It’s sometimes harder for the caregiver than even the patient.

HOW DO YOU FEEL ABOUT THE FUTURE?  WHAT ARE YOUR HOPES AND DREAMS?
I want to live until I’m 120 years old.  I had kids a little later in life so I want to be a fully functional grandma someday.  I just want to be healthy and enjoy watching my kids grow up and make life choices that support healthy and happy living.  I have become more of a giver because of this process.  The people in my life poured money, food, time, energy and love my way when I was sick.  It’s time to give back.

FOR YOU IN ONE WORD, WHAT IS CANCER?
Life.


SMILE FOR CANCER FIGHTERS!
Click here to visit The Why? Foundation
and add your smile to our WALL OF SMILES
www.thewhyfoundation.org/wall-of-smiles/




Saturday, September 8, 2012

Thursday, September 6, 2012

HOLLY’S WALKS ON THE BEACH

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY
 



Written on March 22, 2011 by Allison W. Gryphon

Holly was fierce. She was smart, wise. Her impenetrable strength radiated a force of life only found in legends. She pulled at her skin and ripped at her hair in a frenzy, screaming from the depths of her soul; weeping from the very fibers that held her together. The insanity had struck. The madness for life, for living. For one more walk on the beach without a care in the world. Just one. Holly wanted a simple moment of untainted bliss, of calm, of peace. But that wouldn’t happen. No matter how the journey before her unfolded, things would never be the same for Holly. Her walks on the beach were forever changed. Because that’s how it works. That’s what cancer does.

For those of you who know me, you may have read this on my A.W. Gryphon’s Bits & Pieces flash fiction blog last year. I wrote this as a response to my dear friend and stepmother being diagnosed with terminal brain cancer. It struck me while I was driving home from work only hours after the doctor had delivered the news. Out of nowhere a tornado of feelings hit. I pulled over to catch my breath and “Holly’s Walks on the Beach” poured out of me and onto a pack of post-it notes I had in my purse… I wrote with fury, just needing to get it out… having no idea that three weeks later I would be diagnosed with stage IIIa breast cancer. 

Friday, August 31, 2012

The Wall of Smiles FRIDAY SUPER SMILE is up!



This week, the FRIDAY SUPER SMILE FOR CANCER is from Shakira and Scarlett! 
Click Here to Add Your Smile for Cancer to the Wall.

Thursday, August 30, 2012

THE BLAST CELLS



In 1995 Janice was diagnosed with Chronic Mylegenous Leukemia and given less than a year to live. Proving cancer wrong on a daily basis, Janis is happily married, a proud mother and enjoying every minute of every day.

A Short Story By Veteran Cancer Fighter Janice Throup

The blast cells—the bad guys, the ones that were going to kill me—were perfect circles with little purple halos from the dye they used to stain them. The good cells—the ones that had matured properly—were misshapen. They looked aged and tired in comparison with these new little babies who hadn’t yet differentiated.

I was struck silent. This was not what I had expected. I was diagnosed with leukemia in the days when the Pac-Man visualizations were popular. You were supposed to imagine Pac Men (from the old video game) eating the bad cells. I’ve never been very warlike, so the exercise had no appeal to me, but I thought maybe I should take a look at the enemy.

My doctor, already frustrated with me because I had refused the only real chance of recovery (a bone marrow transplant) was persuaded to let me look at my marrow in exchange for my promise to him of more bone marrow biopsies (“just a little prick” he called them, but they seemed horribly invasive to me). Perhaps the deal appealed to the scientist in him. He left his other patients waiting and took me down to the bowels of the hospital to see my blast cells through a microscope.

I felt something shift inside of me when I saw these purple wonders. They looked so harmless. It struck me that they were just trying to live their little cell-lives. I mean, something had gone wrong because they weren’t following the normal pattern of white blood cells, but they looked … well, happy.

Chronic Mylegenous Leukemia doesn’t hurt. At least in the beginning. Because nothing hurt, I was, at first, disinclined to believe my diagnosis. When my doctor pressed upon me the seriousness of my condition—“only 2% of people with your condition are still alive in two years”—I began to feel betrayed by my body. It had always served me well and I had always loved it. I had studied ballet, taken up mountain climbing, been a star yoga student. And now, in the very marrow of my bones, it was trying to kill me.

But there in the hospital basement, as I looked at those little purple baby cells, I felt overwhelmed with Love. I simply couldn’t get my mind around these babies being the bad guys. They were young life, full of promise, full of beauty. I felt myself falling in love with them, and all of a sudden, my body and I had a reconciliation.

Along with this feeling of invasive Love there came a flood of all those wonderful corollary consolations—the certainty that everything was just as it should be, that I could relax and let life unfold as it would, even if it led to death.

It didn’t. Now, I’m not saying that my attitude brought on healing (though the timing might lead one to believe so). I am saying that for me, acceptance gave me my life back—gave me back the feeling that neither my body nor life was against me. And I realized that the enemy wasn’t Death—it was Fear.

“Perfect love casts out Fear.” Didn’t Jesus say that? It’s true. And maybe, just maybe, when Love prevails, cells realign themselves. Or they don’t but that’s OK too, because what we’re about on this planet is learning how to love. And if that lesson comes through illness, even through terminal illness, it’s still OK as long as we learn it. 


Click here to visit THE WHY? FOUNDATION  and learn more about
our WALL OF SMILES & $5 Cancer Documentary Fundraiser

Thursday, August 23, 2012

HARLEY, THE CANCER FIGHTING GOLDEN RETRIEVER






by Chaz Salembier and Allison W. Gryphon

The average age of a Golden Retriever is ten to twelve years, so when at the age of six the beloved Harley was diagnosed with cancer, no one knew what to expect. All that her owners, Pat and Bill, were sure of was that their Harley was a lover and a fighter. She would do what needed to be done. 

The mast cell tumor, which Pat discovered in Harley’s leg, led to surgery and eighteen rounds of radiation. Harley shined through the operation. It was radiation that was the tricky undertaking. The thing with radiation is the patient must remain still. It’s not easy for anyone and sedating Harley for eighteen treatments was simply not an option. There was concern, but hope, and somehow Harley knew what to do. She stepped up onto the table for every appointment and remained still, all alone in the room, while the radiation zapped her cancer.

The radiation burned Harley and she has the scar to prove it, but she wears it like a badge of honor and has recovered full use of her leg.

Four years after her cancer fight, Harley turned ten. Shortly thereafter Pat and Bill found another tumor. It was on the back of Harley’s paw.

Once again, Harley was faced with surgery. Because of her age and concerned with her quality of life, Pat, Bill and the vet decided not to put Harley through radiation therapy.

Harley sailed though surgery with flying colors and again, made a full recovery.

This month, Harley will turn fourteen. To this day, she still enjoys rides in the car, the occasional steak dinner, and spending time with her younger sister, Zelda.

For Pat and Bill, Harley is still the same wonderful and loving dog she’s always been.

For all of us who have had the opportunity to meet her, Harley is an inspiration and a hero.

Click here to visit THE WHY? FOUNDATION  and learn more about
our WALL OF SMILES$5 Cancer Documentary Fundraiser


Thursday, August 16, 2012

The Wall of Smiles Launch & $5+ Cancer Documentary Fundraiser




THE WALL OF SMILES
Celebrate ~ Inspire ~ Remember

When I was diagnosed with cancer there were a few things that became important to me very quickly. At the top of that list was smiles. The power of a smile is extraordinary. Smiles were exactly what I needed to make it through every appointment, every surgery, every treatment and every morning when I simply didn’t feel like getting up to fight cancer.  

When I asked my friends to send me a photo of themselves smiling, it turned into two large canvases, which helped through every step of my cancer fight.  My Wall of Smiles is an image of love, family and friendship that is unparalleled. 

Reflecting on how special it was for me, I thought, Why not make the ultimate Wall of Smiles that everyone can be a part of?

Share your smile or the smile of a loved one, (including pets!) to celebrate, remember and inspire. This is a place for images of Cancer Fighters, Medical Professionals, Caretakers, Friends, Family, Co-Workers, Advocates…Everyone who would like to send their smile out to the cancer fight that is encompassing the globe.

We’re asking for a minimum $5 donation per photo. You do not need to submit a photo to make a donation. And you need not make a donation to share your smile. All donations will support my Cancer Documentary!

TO SHARE YOUR SMILE ON OUR WALL AND/OR DONATE TO THE CANCER DOCUMENTARY FUNDRAISER, VISIT http://www.thewhyfoundation.org/wall-of-smiles/


 THANK YOU EVERYONE!!!!!!!!!xo ~Allison

Thursday, August 9, 2012

FAMILY, FASHION, SURVING HODGKIN’S LYMPHOMA AT TWENTY FOUR AND FIGHTING AGAIN AT FORTY EIGHT


Maria and her husband Peter photographed on June 9, 2012


by Chaz Salembier and Allison W. Gryphon

As a young woman, life for Maria Rimkus was all about fashion, working for hot designers like Pepe Jeans in Madrid and Tommy Hilfiger in New York. Just when her career was taking off Maria got the call that changed her world. In 1990, at the age of twenty-four, her battle with cancer had begun.

Maria was far from home, living and working in Spain, when she found a lump on her collarbone.  It was Hodgkin’s Lymphoma. Maria returned to the states and went through three months of intensive treatment and radiation. She became a familiar face at Boston’s Dana Farber Cancer Institute, first as a fighter and later as a survivor going in for checkups.

Moving on with life, Maria fell in love with Peter McLaughlin. They were married, settled down in Florida and shortly thereafter brought a pair of beautiful twin boys into the world.  Cancer-free and happy, Maria was living life to the fullest.

And then, this past April, something changed. Maria wasn’t feeling like herself.

Peter took her to the emergency room. Maria’s doctors in Boston were called. The next day Maria and Peter were on the first flight out of Florida. Soon thereafter Maria was diagnosed with cholangiocarcinoma, a rare cancer of the bile ducts and liver. She was given six months to a year.

In May, through her dear friend Kelly Schandel, Maria and Allison W. Gryphon were introduced. The hope was for Maria to participate in Allison’s documentary What The F@#- Is Cancer and Why Does Everybody Have It?. Logistics and treatments for both women prevented an interview for the movie so we found another way to share the strength and determination of this amazing woman.

Meet Maria. This is her own story in her own words as told on June 10, 2012.

WHAT KIND OF CANCER ARE YOU FIGHTING?
I was at the Dana Farber clinic last November for testing and everything was normal.

In April, I was diagnosed with cholangiocarcinoma,  a rare cancer of the bile ducts and liver. They think it may have a small metastasis to some lymph nodes. This will be confirmed after my next PET and unfortunately means I am not a candidate for a liver transplant. My prognosis is not good.  The doctors said if I live a year that would be considered a ‘homerun’.

IS THERE A HISTORY OF CANCER IN YOUR FAMILY?
There is a little history.  My sister had thyroid cancer in 1991, the year after I had Hodgkin’s.

DO YOU KNOW WHERE YOUR CANCER CAME FROM? 
Yes.  When I had Hodgkin’s, the doctors marked me with small tattoos where the radiation went in for precise location.  My main tumors are directly over where the radiation was done; therefore what saved me twenty-four years ago is what is killing me now.

DID YOU THINK YOU WERE AT RISK? 
Yes, due to my past history, I have always felt susceptible to another cancer.

WHAT TYPE OF TREATMENT HAVE YOU BEEN THROUGH AND WHAT ARE YOU FACING? 
I have already done one round of six cycles of chemotherapy.  I will probably do this to extend my life expectancy for as long as possible.  If I get lucky and they let me have a liver and bile duct transplant, I may have a better chance, but that would mean that the cancer had not metastasis as far as they now think.  I am also on many medications, and two shots a day for blood thinners, as they have found blood clots in my leg.

HAVE YOU EXPERIENCED ANY SIDE EFFECTS FROM TREATMENTS OR SURGERY?
My hair has thinned, but ironically even though I am on one of the harshest chemo treatments, most people do not lose their hair on this chemo.

HOW IMPORTANT ARE YOU FINDING DIET AND EXERCISE IN GETTING THROUGH THIS? 

I have always been athletic and worked out, but once I started feeling tired  I was only doing yoga.  Since I was diagnosed I have not worked out at all, but am hoping that after a few more sessions of chemo I will find the energy to start doing light exercises.

As for diet, I have read so much. I love the book AntiCancer.  I’ve met with a macrobiotic specialist and nutritionist.  The macrobiotic diet, although it might be beneficial for a healthy person and good in the long run, is not working for me at the moment.  I need to gain weight and put on as many calories as possible, which just is not happening on a macrobiotic diet.  I think you should eat a plant-based diet, but some organic meat is also fine. 

HOW ARE YOU FIGHTING CANCER EMOTIONALLY?
I am mentally strong and positive, which I really believe is half the battle.  I have such a strong support system of family and friends, and have been very open and honest about my fight with cancer.  We are an open book, with my husband writing in a blog to keep everyone updated.

I feel at peace, thinking that I have been given an extra twenty-four years of life, in which time I met my wonderful husband and had my beautiful twin boys.  That does not mean I am not going to fight my hardest to beat this and watch my boys grow up.

WHAT ADVICE DO YOU HAVE FOR OTHER CANCER FIGHTERS?
Keep a positive attitude, go one day at a time so as not to be overwhelmed, and find something good in everyday!

WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?
Be compassionate, and try to put yourself in the position of the patient.

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?
Be supportive and let the cancer fighter know you are there for them, but also give them their space.  A lot of times we don’t want visitors, and feel like we have to entertain when people come to visit.  We need our rest.

HOW DO YOU FEEL ABOUT THE FUTURE? WHAT ARE YOUR HOPES AND DREAMS?
I am positive!  I hope to have a great future and want to watch my boys grow up.  I am hoping I will feel strong enough to go to my thirty year high school reunion on the west coast this summer.  My husband and I also want to take the boys to Costa Rica for New Years and celebrate our tenth wedding anniversary there, which is where we got married.

FOR YOU IN ONE WORD WHAT IS CANCER?
Insidious.

As of today Maria is fighting the fight and feeling good with the help of acupuncture and her amazing support system which you can learn more about at Caring Bridge.