Thursday, March 21, 2013

A PRICELESS CUT by Annie DeYoung

THE WHY? FOUNDATION – TOUCHSTONE THURSDAY





What is it about hair – growing it, curling it, coloring it, cutting it – just having it?  Why is it so important?  Why is losing it so painful?  

I’ve been a hairdresser for almost 25 years, the last decade or so just for friends and family.  I give them what I like to call the “priceless cut,” the one no one can afford because I only give it away to my nearest and dearest. 

I’m a screenwriter now, mostly of light teen comedies set in worlds where crushes and breakups and the machinations of mean girls are the worst that happens.  In my movies, no one loses their hair.  And no one has cancer.  In my real life, cancer happens, with all of its attendant losses:  breasts, bone, energy, hope – and hair.  Every person I’ve ever known who receives a diagnosis of cancer immediately dreads losing his or her hair. 

Fracking chemo.  It kills fast-growing cells – like cancer – but also mows down other fast-growing cells in its path, the things we’d like to keep, the things we think make us beautiful – things like hair, nails, eyebrows and lashes.

I had met Allison once or twice before her cancer diagnosis.  She knew just how to wear her fine, soft blonde hair.  She struck me as confident, smart, stylish, creative, and very, very pretty, like a lot of girls I knew who worked in Hollywood. Then came cancer and surgery and I found myself bringing her organic raspberries in the hospital.  She still looked beautiful.

Allison & Annie
July 1, 2011

I can’t remember exactly when she asked me to cut off her hair, but I took it as a sign that although we didn’t know each other well, we were now friends. She asked my opinion: how will she know when it’s time? I told her that when she sees more hair on her pillow in the morning than the night before, it would be time.


A week later, we set a date. I was busy that day, writing a script, on a deadline, as usual. I did what I often do in these circumstances: I made what was about to happen unimportant. I didn’t shower, didn’t do my hair. I threw it up in the messy ponytail I often wear when writing. If I’m honest, I didn’t want to look pretty when Allison arrived. Looking at video of that day, I think I overdid it.


When Allison arrived on her lunch hour from work, she came with an entourage. She was dressed beautifully and her makeup looked amazing. She had an entire camera crew with her. They set up their tripods and mics and cameras in my living room. I picked up my clippers and explained to Allison what I was planning to do and why. I remember it was a hot day and the A/C couldn’t keep up with the heat. I was sweating. She was scared and brave and determined. I suddenly let myself feel the weight of what I was about to do: make Allison look like a cancer patient.


My hand shook. At some point, while running the clippers along the left side of her head, I didn’t notice that the clipper guard had popped off of the blade, and I shaved her hair closer than I had planned. I had to recut everything that length, barely above her scalp. I hated that moment because even though I was doing something simple, something that required little real skill or artistry, I desperately wanted it to be perfect.


Annie & Allison
July 1, 2011
This was big and important. I was changing the way the World would see this person. When I finished and shut off my clippers, Allison’s cancer would not be just a private conversation anymore. The haircut would make it public. It wouldn’t be something invisible, inside of her, or what used to be where the scar is now. It would be in the mirror everyday.


I remember handing Allison that mirror. I think I told her “You’re lucky. You have a beautifully shaped cranium.” In truth, she looked gorgeous – quite honestly more beautiful than before. Suddenly, she was all eyes and lips and cheekbones.


Was it a great haircut? Yes. Priceless.


Allison on the Set of What the F@#- Is Cancer and Why Does Everybody Have It?
December 2012


Allison, with no evidence of disease in her body,
having fun at a party
February 24, 2013






Thursday, March 14, 2013

BALLOON KISSES TO HEAVEN: ONE FAMILY’S BATTLE WITH BRAIN CANCER

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY
by Alia Tarraf
Jason and Sienna in the Stride to Save Lives walk for brain tumor research, 2006


Debra and Jason were a vibrant young couple who met their sophomore year of college in 1995. They lived in the same dorm. They spent their weekends hanging out with friends, going to dinners, movies, bars and outdoor festivals. Their favorite songs were "Man in the Mirror" by Michael Jackson and “Tiny Dancer” by Elton John. A few years later, they were married and decided to start a family. Debra and Jason were the all American love story.
In January of 2006, Debra was holding their five day old first born daughter when Jason went into a seizure. Scared and unsure of what was happening, Debra waited for the paramedics to arrive. It was three hours in the ER before they knew what was wrong. Jason had Astrocytoma, cancer of the brain. He was 30.
It seemed impossible. He was strong, athletic and healthy. Debra and Jason decided to fight. He did radiation and went into remission. But two years later, Jason was diagnosed with Glioblastoma. He had oral chemo and gamma knife radiation.
Three months later, it spread to his spine. Again, Jason had chemo, gamma knife radiation.
He underwent every treatment prescribed to him and then just a few months after the birth of his second daughter, Jason lost his battle with cancer on Feb. 21st 2009.
Debra was devastated, but she knew she couldn’t just give up. She had two beautiful young children she had to take care of.
So Debra picked herself off the floor and kept going.
HOW DID YOU KNOW WHAT TO DO AFTER THE DIAGNOSIS?
We didn't. We followed the ER doctor's advice and waited to talk to the surgeon the next day. Our insurance wouldn't cover the hospital we were at so we came home the following day, made lots of phone calls to meet different doctors and stressed over an insurance referral. It was awful. We were able to switch insurance plans and get a referral to a specialized institution.
HOW WERE YOU ABLE TO SWITCH YOUR INSURANCE PLAN AFTER HIS SEIZURE?
We had an HMO at the time which needed a referral to go to a specialized institution. We were able to finally get approval but changed to a PPO as soon as he could switch his plan.
HOW DID YOUR WORLD CHANGE WITH YOUR HUSBAND’S DIAGNOSIS?
Life became about spending days together. Jason went on disability leave right away and I took an extended maternity leave. We had lots of friends come and babysit so the two of us could spend time together. He was home with us until he had to go into the hospital for care and then later to a nursing home where he passed.
WHAT WAS THE HARDEST PART OF WATCHING YOUR HUSBAND FIGHT CANCER?
Watching him become someone he was not. He slept all the time…wouldn't eat. Watching him slip away into a different person and wonder why he was given this part of life.
WHAT DID YOU DO TO SHOW YOUR SUPPORT?
I went to every appointment and treatment with him that I could. I traveled to get other opinions. I let him sleep. I bought him McDonalds McGriddles and froze them since it was the only thing he would eat.

HOW DID YOU GET THROUGH THE DAY-TO-DAY?
I have no idea. I have a lot of amazing friends that helped us. My girls helped. I'm not sure I would still be alive today without them. I thank God everyday for them.
HOW DID JASON’S CANCER FIGHT HIT YOU EMOTIONALLY?
Both my girls were really little when he was sick. I would sit in the rocker, rock them to sleep and cry. I would lay on the floor in their room and cry while he was upstairs sick. My heart was breaking to see the strongest person I knew emotionally and physically dying. I felt lost losing my best friend and not having someone there that understood what this was like for us.

WHAT DID YOU TAKE AWAY FROM THE EXPEREINCE?
Small problems just don't really matter in the grand scheme of things. There are so many bigger things to worry about. Also, tell people you love them as much as you can. I have no regrets with Jason knowing that and I am so thankful for that being the last thing I said to him.
WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?
Ask for help. Seek out other opinions. Spend as much time as you can with the person fighting but also find time for yourself and don’t feel guilty about it.
WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?
Spend money on research. Spend money on making cancer fighters more comfortable with treatment. Help them have many options in treatment.
WHAT ADVICE DO YOU HAVE FOR OTHER CARETAKERS?
Have faith. Spend time with loved ones. Take lots of pictures and videos. Be positive but also realistic. Ask a ton of questions to your medical team and know your options. Prepare yourself and your family for the worst. Help them feel ready in case they need to make medical decisions for you and how to care for themselves if you die.
HOW DO YOU FEEL ABOUT THE FUTURE?
Scared. For my girls that have to go on without truly knowing their dad. And scared that someday I might lose someone else close to me to this disease and knowing I will have to face it again.
HOW ARE YOU DOING NOW?
I am doing pretty good now. Good days and bad. I met someone in July 2011 that has been very supportive of my life. I miss Jason every day. He can never be replaced but I know he would want me to be happy and the girls to have a father figure around them.

WHAT MAKES YOU FEEL CLOSE TO HIM?
I made a CD of some of his favorite songs and I listen to it a lot in the car. I wear a pair of his socks or one of his T-shirts on a day that I'm really missing him. There are days that I swear he is sitting next to me in my car. Sometimes I'll just hold out my hand that he used to hold while I drove and talk to him.

WHAT IS A FUN THING YOU DO WITH YOUR GIRLS TO CELEBRATE THEIR DADDY?

Jason used to call the girls “Little Buggie” and “Baby Buggie”. Those are the names I call them now and they know it’s because their dad called them that. They love it. Every Father's Day and Jason's birthday, we go to McDonalds, his favorite, for breakfast and buy him a balloon to kiss and send up to heaven.

FOR YOU IN ONE WORD WHAT IS CANCER?
Shitty. If that's too harsh…I would say, “painful”.

It’s been four years since Jason passed and Debra has continued to stay strong. Their daughters, Sienna, now 7, and Sydney, now 4, are blooming. Sienna is in Daisy Scouts and loves singing, acting, putting on shows and telling stories. Sydney tap dances and is a ballerina. And they know Jason will always be their number one fan.
 www.thewhyfoundation.org

Thursday, March 7, 2013

Perspective: Coming Out the Other Side of Childhood Leukemia

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY
by Alia Tarraf

Brett Newton and his family (Brett is second from the left)


In the fall of 1995, when most 11-year old New Jersey natives were riding bikes with their friends, Brett Newton was giving himself his own shots to ward off the side effects from his T-cell Acute Lymphocytic Leukemia treatment.  It happened fast.  Brett was your average kid.  Strong and determined, he excelled in dance, swimming and gymnastics, a rising star in his family.  Then one day it was gone, triggered by cancer found in his blood, and everything changed.  At one point, Brett’s muscles had atrophied from being bed ridden for so long that he could hardly walk.

How does a child who has to take morphine for the pain endured from basic tasks such as eating and drinking, find the strength to keep going?  Unsure of how long he had to live, Brett decided he wasn’t going to let cancer beat him.  At 11, he was focused.  Brett forged ahead and fought.  After over three years of treatment, and with the help of his parents and sister, Brett survived.  He has no evidence of disease in his body.  Now 28, and an actor and artist living in Los Angeles, Brett splits his time between his creative endeavors and giving back through organizations like Paul Newman’s Hole in the Wall Gang Camp.

WHAT KIND OF CANCER DID YOU FIGHT?
T-cell A.L.L.  Acute Lymphocytic Leukemia.  It was blood cancer so it affected my whole body.

WHEN WERE YOU DIAGNOSED?
November 22, 1995.  I was 11 years old.

HOW LONG HAS THERE BEEN NO EVIDENCE OF DISEASE IN YOUR BODY?
15 years.

IS THERE A HISTORY OF CANCER IN YOUR FAMILY?
I had an uncle with leukemia and another uncle with a brain tumor.

DO YOU KNOW WHERE YOUR CANCER CAME FROM?
They suspect environmental, but in reality, no.

WHAT TYPE OF TREATMENT DID YOU GO THROUGH?
Chemo, Intrathecal (treatment in the spinal cord) and Cranial Irradiation.
My treatment started November 22, 1995 and ended January 4, 1999.

DID YOU EXPERIENCE ANY SIDE EFFECTS FROM TREATMENT?
Nausea and plenty of it.  My body’s immune system was low all the time and there was actually a period in my treatment when I became a temporary diabetic.  I gave myself my own shots, I thought that was cool.

WHAT IS YOUR MEDICAL MAINTENANCE SCHEDULE NOW?
Annually I have to do a CBC, Chemistry Profile, Urine Analysis, Thyroid Function, Baseline Lipid Profile, Baseline FFH, LH, Testosterone and an Ophthalmologic exam. Every 2 years, I have an EKG/Echocardiogram.  

HOW IMPORTANT DID YOU FIND DIET AND EXERCISE IN GETTING THROUGH TREATMENT AND SURGERY?
Very important.  I never wanted to leave the bed but my parents kept me moving, dragging me out of bed, so I would have some muscle use.  They are the reason I am back on my feet today.   My mother also made sure my diet was the most healthy it could possibly be.  She also did a huge regiment of holistic medications that saved my heart, bones and body, among other things.

HOW DID YOU GET THROUGH THE DAY-TO-DAY OF YOUR CANCER FIGHT?
My father and I probably built every single WWII model airplane, tank and boat there was.  I built them, he painted them.   It was all about having a great attitude all around me.   I was surrounded by great people and in my mind I always knew I was going to live. 

HOW DID YOU FIGHT CANCER EMOTIONALLY?
I just looked forward and had great parents. 

WHAT DOES BEING A SURVIVOR FEEL LIKE?
It feels normal.  It’s what I went through in life to make me who I am today, so to me it’s normal.

WHAT ADVICE DO YOU HAVE FOR OTHER CANCER FIGHTERS?
Keep a positive attitude and great people in your life and trust your instincts.  

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?
Keep a positive attitude and motivate your friend or family members.  They are still the same person, so treat them that way.

HOW DO YOU FEEL ABOUT THE FUTURE? WHAT ARE YOUR HOPES AND DREAMS?
I feel like it’s coming pretty fast.  My hopes and dreams are to be a consistently working actor and producer and just make that my living.  I want to be able to travel at a moment’s notice and spend more time with my family and the people I love.  I also want to get married to an amazing woman and have kids one day.

FOR YOU IN ONE WORD WHAT IS CANCER?
Experience.