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.

Male. 24. Ductal Carcinoma In Situ Stage 1 Breast Cancer. Meet Bret Miller.

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Katherine Ferrara & Allison W. Gryphon

“You have breast cancer” isn’t exactly what the typical 24 year old male expects to hear from his doctor. Bret Miller thought the lump on his chest might be something, but the 2010 diagnosis certainly was not what he was expecting. Holding down two jobs, as a bartender and pool/ice rink manager, Bret was faced with the third job of battling cancer and opted for a fourth, starting the Bret Miler 1T Foundation for breast cancer education and awareness.

What kind of cancer did you fight?

Ductal Carcinoma In Situ Stage 1 Breast Cancer.

Is there a history of cancer in your family?

There is history on both sides of my family. There have been seventeen cases of breast cancer in my cousins. All women.

Do you know where your cancer came from?

I don't have the gene.

Did you think you were at risk?

Not in a million years would I have ever thought I would have breast cancer or any of the cancers.

What type of treatment did you go through?

I had a mastectomy on my right breast in May 2010. From July 2010 through September 2010, I went through four rounds of chemotherapy.

What was your recovery from surgery and treatment like?

Throughout my entire diagnosis, surgery and treatment, I missed a total of one week of work. I was never tired from the chemo. I got lucky with everything that happened.

Did you experience any side effects from treatments or surgery?

I lost my hair. I was never nauseous. I had the body aches once only because I forgot to take my steroid pills before and after my second treatment. I took them the following day and felt better.

Are you in any type of treatment now?

No treatments!

What is your medical maintenance schedule now?

I have check ups every six months.

How important did you find diet and exercise in getting through treatment and surgery?

It is very important to do diet and exercise while going through treatment and surgery, but don’t push yourself if you don’t have the energy. Also if your blood cell counts are low, do not go to the gym because of possible germs and infections that could result. I had to stay away from the gym for a couple of weeks due to low counts.

How did you get through the day-to-day of your cancer fight?

I went through every day like nothing had ever happened. It never phased me that I had breast cancer. I still worked forty plus hours a week at the pool I manage and worked an additional two shifts a week bar tending.

How did you fight cancer emotionally?

I had the support system of my family and friends to get through it all. But I never had the mind set of, “Oh poor me, I have breast cancer.” It was just a roadblock in my amazing life.

What does being a survivor feel like?

Amazing. I am living life to the fullest and not having a care in the world. I am a warrior and proving it every day.

What advice do you have for other cancer fighters?

You will beat this. With the determination and support of your family and friends, you will have no trouble kicking it’s ass.

What advice do you have for medical professionals?

Don’t forget about men. Check them for breast cancer too. Cancer does not discriminate so neither should they. I had mentioned my lump to my doctor when I was seventeen, but he never looked at it. He just said it was a calcium buildup and that I was becoming a man and it would go away. It never did.

What advice do you have for friends, family and co-workers of cancer fighters?

Be very supportive. This is an easy time for the patient to think they won’t beat this or that they are in this alone when they aren’t. Also use humor, it is nature’s best cure.

How do you feel about the future? What are your hopes and dreams?

I am totally optimistic. Anything that comes my way I will conquer. My hopes and dreams are to expand The Bret Miller 1T Foundation to a whole new level and let others out there know that cancer is very beatable by building awareness, and that early detection is key in the fight against breast cancer.

For you in one word, what is cancer?

Beatable.

To learn more about Bret Miller and the Brett Miller 1T Foundation visit www.CheckThem.org

To read our interview with Brett’s mother, Peggy, Click Here

THE CALL NO MOTHER WANTS: YOUR SON HAS BREAST CANCER

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Kathryn Ferrara & Allison W. Gryphon

Peggy Eddy Miller. Married for thirty-one years. Four kids. Owner of two family run Kansas City businesses, MMG Frozen Drink Rentals Company and Memory Productions Videos. At 57, Peggy was happily living life when her 24 year old son, Bret, was diagnosed with breast cancer.

What do you do when you get that call? After fear, shock and the feeling of helplessness ripped through her world, Peggy pulled it together.

Surrounded by family and friends, she fought for her son by educating herself, being pro-active with the doctors and holding tight to prayer. Peggy took on cancer as her son’s primary caretaker and self-proclaimed “administrative assistant” which as any cancer fighter will tell you, is of the upmost importance.

After a mastectomy and four rounds of chemo, there is no evidence of disease in Bret’s body.

With her newfound knowledge and fierce courage, Peggy supports her son’s campaign to raise awareness and fight breast cancer through The Bret Miller 1T Foundation and through sharing her perspective as both mother and advocate.

How did cancer come into your life?

It took seven years and Bret with the lump under his right nipple and a doctor finally thinking it was something more than calcium.

When was your son diagnosed?

April 28, 2010. Bret was driving from his first job to his second and the doctor calls his cell phone, not even asking could he talk or anything, and says, “I just wanted to let you know you have cancer.”  Bret was on a busy traffic way and almost wrecked his SUV.  Then he called his dad. We both were at our office desks and I said, “Was that Bret?” and he said, “Yes. The doctor called and he has breast cancer.”

How did you know what to do?

My instincts took hold and I called the doctor, who was not available of course, so I called a good friend who works in pathology, Mary. She said, “Calm down. He will get through this.”  She told me to get the pathology report and she would let me know what was going on.  I got the report.  The first words out of Mary’s mouth were, “Bret can beat this.”  That was all I needed to hear. 

How did your world change with your son’s diagnosis?

We were in cancer overload.

What was the hardest part of watching Bret fight cancer?

Not being able to take the pain away.

What was the best part of fighting cancer with Bret?

The people we have met along the journey.

How did you get through the day-to-day of Bret's cancer fight?

Lots of prayer.

What advice do you have for friends, family and co-workers of cancer fighters?

Pray and give support.

What advice do you have for medical professionals?

Listen to your patients.

What advice do you have for other cancer fighters?

Fight. Do not give up.

What are your hopes and dreams for Bret?

To continue spreading the word of awareness and early detection.

For you, in one word, what is cancer?

Battle.

To learn more about Peggy, Bret and The Bret Miller 1T Foundation, visit www.CheckThem.org

Next week we will post our interview with Peggy's son Bret.

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