TOM THOSTRUP: MAKING LOVE THE PRIORITY

The Why? Foundation's Touchstone Thursday
by Allison W. Gryphon 

Tom Thostrup. 33. It was three years ago and he was completely besotted with his beloved Ellie. 27 years old, with a wonderful career in broadcast journalism and a smile that lit up the sky, Ellie had it all. No one saw the cancer coming. And no one knew it would move so quickly. 

As cancer does, it turned Tom’s life upside down and put everything that was important in front of him and everything that wasn’t in the past.

Ellie had an aggressive breast cancer that had spread. She was in surgery and treatment immediately. She was also in love and with the impact of the cancer bomb that had dropped on both of them, Tom realized the depth of his love too. He proposed. Ellie, fought, loved lived and married her sweetheart. She fought a good two year fight and embraced the passion of life before cancer took her.

Full of love and inspiration from the girl of his dreams, three years after her initial diagnosis Tom has started the Eleanor Rose Foundation for cancer fighters and their families. The organization was created in Ellie’s memory with the goal of connecting generous service providers and cancer fighters in need. Massages, acupuncture, movie tickets, and a nice dinner out are a few of the many gifts facilitated by the Eleanor Rose Foundation. Things that make you happy, that make you feel good and thing that make you smile, just like Ellie made Tom smile straight from the heart every day.

HOW DID CANCER COME IN TO YOUR LIFE?

Ellie was my girlfriend of a year when she was diagnosed with breast cancer. She was 27 years old.

We were given the news of Ellie’s primary diagnosis by an oddly smiley doctor and although there had been some signs in that she had to undergo more tests than otherwise, it was still a real shock to both of us, because when Ellie found the lump everyone was confident that it would be benign.

HOW DID YOUR WORLD CHANGE WITH YOUR ELLIE’S DIAGNOSIS?

The day she was diagnosed I told Ellie I loved her; I hadn’t said it before but the threat of losing Ellie made me realize how important she was to me. Ellie’s primary diagnosis was traumatic but we still hoped that the surgery and chemo would cure her and that we could leave it behind. Her diagnosis with secondary breast cancer was far more devastating as the oncologist basically told us Ellie had a very limited time left.

WHAT WAS THE HARDEST PART OF WATCHING ELLIE FIGHT CANCER?

It was tough to see Ellie in pain or feeling nauseous from the effects of chemotherapy, but it was even worse when she was upset. Ellie was always so full of life and so positive, so it was really difficult to see her having a hard time mentally when dealing with cancer got her down. 

WHAT DID YOU DO TO SHOW YOUR SUPPORT?

I tried to keep her spirits up. We did fun things when she felt up to it. Going on trips away or having nice meals out. When she lost her appetite or was trying to stick to a healthier diet I tried to cook new things that she would still find tasty. Preparing for the wedding was a positive thing for her so we would talk about that too.

HOW DID YOU GET THROUGH THE DAY-TO-DAY OF HER CANCER FIGHT?

I tried to be as positive as possible when I was with Ellie so that she always had hope. I felt it was an important part of keeping her motivated during her fight.

WHAT DID YOU TAKE AWAY FROM THE EXPERIENCE?

The whole thing feels very unfair. I know I’m biased but everyone who knew Ellie would agree that she was a truly wonderful person. It’s hard to come to terms with the fact that she didn’t get to experience so many things that she wanted to. Marriage, motherhood, further career success after having worked so hard. I feel she deserved much, much more.

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?

Give them space and don’t ask them for more than they can give, but when you do see them treat them like normal human beings and be supportive. They still want to have fun and in all likelihood don’t want you to act any differently around them.

WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?

When giving people the news of their condition it’s important to be realistic, but also to explain to people what their options are. People living with cancer need hope and part of this comes with knowing the treatment options.

WHAT ADVICE DO YOU HAVE FOR OTHER CANCER FIGHTERS?

I think people have to deal with their condition in whatever way that works best for them. They should get as much information as possible from their oncologist and if they don’t have faith in the people in charge of their medical care they should seek a second opinion. 

Eleanor Rose Jeffery 8 January 1983 – May 18 2012

HOW DO YOU FEEL ABOUT THE FUTURE? WHAT ARE YOUR HOPES AND DREAMS?

I don’t like to think too far ahead nowadays. I can’t imagine my future without Ellie but I would like to make a success of The Eleanor Rose Foundation and leave a legacy for her that will benefit other people who find themselves in the same circumstances as her.

FOR YOU IN ONE WORD WHAT IS CANCER?

Destruction.

To learn more about the Eleanor Rose Foundation please visit www.eleanorrose.org

Allison W. Gryphon 

www.thewhyfoundation.org

Power of Music Mondays: "Falling and Flying"

Power of Music Mondays

by Allison W. Gryphon

“The air’s so heavy, it could drown a butterfly, if it flew too high.”

Going through chemo, music was a life raft for me. Not far into treatment, I was introduced to the song Falling and Flying by Grace Potter and the Nocturnals.  It was an instant connection. I felt understood. Walking on that high wire between life and death is truly falling and flying all at once.

Sometimes I’d be sitting in the chair, watching the poison drip, wondering what it was doing to by body, and I’d put this song on repeat and just let go... it got me through more than a few scary moments.

Click Here to listen to Falling and Flying from the album This Is Somewhere.

Click Here to visit the official website of Grace Potter and the Nocturnals.

"Falling Or Flying"

We got lost again

Drove to the end of a road

And a red aced man

Taught us to do what we're told

And on the 23rd night

Things ain't bad but things ain't right

Are we falling or flying

Are we falling or flying

Are we living or dying

I guess we'll never know

The air's so heavy

It could drown a butterfly

If it flew too high

And i get the feeling

That the truck driver ain't shy

Cause he's looking at me but nowhere near my eyes

And on the 35th morning

Things ain't good but things ain't boring

Are we falling or flying

Are we falling or flying

Are we living or dying

I guess we'll never know

Sometimes it's hard tot ell

If there's a life behind a song

But i know tomorrow

Today won't feel so long

Cause on the 42nd night

The room was dark but the stage was bright

Are we falling or flying

Are we falling or flying

Are we living or dying

Cause my friend this too shall pass

So play every show like it's your last

About Power of Music Mondays

I received many gifts while I was going through my cancer fight. They were all amazing and helpful. What stands out to me more than anything is music. The songs and playlists I was sent became a huge part of my treatment. It’s the one thing you can always have close by. It can turn you around and slip itself around your soul to make everything ok, if even just for a moment. Looking back, I'm not sure how I would have done without it. ~Allison

The Power of Music is extraordinary. The right song can inspire, empower, comfort and redirect anyone. Cancer fighters and their families are no exception.

Every Monday, The Why? Foundation will celebrate a song and an artist that has given us a musical gift.

If you have a song that has helped you or someone you know fight the fight, we want to hear about it. Please send an email to info@thewhyfoundation.org with your story and your song.

DOING WHAT YOU DO TO FIGHT CANCER: SUSAN HIRSHBERG GIVING BACK THROUGH YOGA

A big shout out to Susan Hirshberg for doing what she does to fight cancer. Susan is a Yoga teacher who will be dedicating a series of of classes to raising awareness about what it means to fight cancer. 

In addition, the money taken in for her classes will be donated to The Why? Foundation’s Indie GoGo Campaign. 

Thank you Susan! 

One World! We Are Kicking Cancers Booty Together! 

Click Here to visit The Why? Foundation Fundraiser and Awareness Campaign on Indie GoGo

5 AND 5: GIFTS FOR CANCER FIGHTERS AND CARETAKERS

CANCER ANSWER TUESDAYS: CARETAKERS CORNER

by Allison W. Gryphon

Q: My friend, family, co-worker has cancer and I’d like to send a gift, what should I do?

A: Fighting Cancer is overwhelming and there are so many wonderful gifts that you can send to both a cancer fighter and a caretaker. Having been through it, I’d say my strongest suggestion is to make sure you are giving something that the cancer fighter and/or caretaker wants or needs over what  you’d like to give. Secondly, don’t forget the caretakers; whether you are one or you are interacting with one, caretakers need a little TLC too.

5 IDEAS FOR GIFTING A CANCER FIGHTER

                                                          

1. Grocery and/or Meal Delivery. Shopping for and preparing food while you’re fighting cancer is not only an expense of time and money, it can really zap your energy. Making shopping or meal preparation easier in any way is both a wonderful and helpful gift.

 

2. Music. A personalized playlist or a music gift card is great. Music is the one thing that a cancer fighter can take almost anywhere and enjoy any time.

3. Lap Desk. In bed, on the couch, in the car, a lap desk is light weight and comfortable for everything from eating dinner to reading, doing paperwork and propping up a lap top.

                                          

4. Comfort and Style. Feeling good makes you look good and looking good makes you feel good. Soft, stylish, comfortable clothes that are easy on and easy off for a cancer fighter in treatment is always nice.

5. Laundry. On top of all of the tasks involved with fighting cancer, laundry can be one of the exhausting ones. It’s hot, heavy and time consuming. My friends Alia and Dwight frequented my house during treatment for little laundry folding parties. It was always a nice visit and an incredibly helpful gift.

5 IDEAS FOR GIFTING A CARETAKER

1. Movie Night Gift Cards. Escape. Adventure. A night off. Caretakers need little breaks so they can relax and recharge their battery. A movie is a great evening of “me time.”

2. Pampering. Taking care of the caretaker is just as important as taking care of the cancer fighter. Massage, manicure, meditation, spa and yoga gift cards are wonderful.

3. Dinner. Caretakers are often preparing meals for the cancer fighter they love. A wonderful treat to make dinner for the caretaker or send them out with a gift card to their favorite restaurant.

4. Comfort and Style. Caretaking means lots of running around. Comfort is imperative and style makes most people feel good. A comfy, stylish edition to a caretaker’s wardrobe is always a nice treat.

5. Gas Cards. Taking care of a cancer fighter means loads of driving, which means loads of gas. A gift card is a wonderful practical gift.

If you have any suggestions or questions for Caretaker’s Corner please email us at info@thewhyfoundation.org.

www.thewhyfoundation.org

Power of Music Mondays: “Into The Mystic”

Power of Music Mondays

by Allison W. Gryphon

“Let your soul and spirit fly into the mystic.”

Cancer is hard. Treatment is harder. Being sliced into, doused with the chemicals from chemotherapy, burned through and through with radiation and stripped of my being down to the core, both physically and emotionally, brought me to a level of life I never knew existed. All that remained was the true me.

I have never been so aware of my soul.

There was nothing scarier than the journey that got me there and no words to describe the bliss of arriving in that state of life in its purest form. Total freedom.

In this song, one that has rocked my gypsy soul for as long as I can remember, I found comfort and release throughout my cancer battle, in knowing that I finally understood what it was to step into the mystic.

Click Here to purchase “Into the Mystic” from the album Moondance on iTunes.

Click Here to visit Van Morrison’s official website.

"Into The Mystic"

We were born before the wind
Also younger than the sun
Ere the bonnie boat was won as we sailed into the mystic
Hark, now hear the sailors cry
Smell the sea and feel the sky
Let your soul and spirit fly into the mystic

And when that fog horn blows I will be coming home
And when the fog horn blows I want to hear it
I don't have to fear it

And I want to rock your gypsy soul
Just like way back in the days of old
And magnificently we will flow into the mystic

When that fog horn blows you know I will be coming home
And when that fog horn whistle blows I got to hear it
I don't have to fear it

And I want to rock your gypsy soul
Just like way back in the days of old
And together we will flow into the mystic
Come on girl...

Too late to stop now...

About Power of Music Mondays

I received many gifts while I was going through my cancer fight. They were all amazing and helpful. What stands out to me more than anything is music. The songs and playlists I was sent became a huge part of my treatment. It’s the one thing you can always have close by. It can turn you around and slip itself around your soul to make everything ok, if even just for a moment. Looking back, I'm not sure how I would have done without it. ~Allison 

The Power of Music is extraordinary. The right song can inspire, empower, comfort and redirect anyone. Cancer fighters and their families are no exception. 

Every Monday, The Why?Foundation will celebrate a song and an artist that has given us a musical gift.

If you have a song that has helped you or someone you know fight the fight, we want to hear about it. Please send an email to info@thewhyfoundation.org with your story and your song.

LAUREN MIYAKE, FIGHTING CANCER THROUGH THE LENS

FIGHTING CANCER WITH STYLE WEDNESDAYS
by Allison W. Gryphon

Lauren Miyake on location with Piper Gore and Allison W. Gryphon at the
"Fighting Breast Cancer with Fashion" Photo Shoot

Two years ago my friend, Lauren Miyake, put down her camera to start a new career. Not too long after, in the midst of my cancer battle, she picked it back up to fight cancer for and with all of us, through the lens.

Lauren captured the tattoo that came out of my cancer fight for the December 2012 Skin & Ink Magazine and for the companion Needles and Sins blog. More recently, she shot the Piper Gore ~ Allison W. Gryphon Fighting Breast Cancer with Fashion look book due out this summer.

Close to my heart, and a great message to everyone, Lauren's work reminds us all that you don’t have to be a doctor to make a difference. We all have talents. Use yours to fight cancer. 

Wednesday – Fighting With Style Wednesdays

If you have a story, question or idea on how to help others fight cancer with style, we want to hear about it. Please email us at info@thewhyfoundation.org.

www.thewhyfoundation.org

WHAT DOES RADIATION LOOK LIKE?

CANCER ANSWER TUESDAY

by Allison W. Gryphon, Stage 3a Breast Cancer, Diagnosed April 13, 2011

 

Before Radiation begins each cancer fighter goes through a planning process to make sure that the radiation is targeted to exactly the right part of the body. Every cancer and every person is uniquely different. This photograph was taken on the day of my planning. I was scanned and tattooed to pin point the exact location the radiation would need to hit my body. I received 8 very small tattoos. 

Here you can see all of the pen mark-ups applied to take all the needed measurements in determining where my tattoos would be placed. This photograph was taken while I was in lymphedema therapy, which is why I have the black compression sleeve on my arm, and a short time after my first reconstructive surgery, which included fat grafting and is the reason I’m wearing compression pants.

The dots in between each of the lines you see in the middle of my chest are spots where I was tattooed. The tattoos allowed the technicians to properly line up and target my radiation treatment each day through the 30 days of treatment I received. Planning is a precise and lengthy process. I was there for about two hours and was required to remain relatively still for about an hour of the appointment. My tattoos were a quick jab with a needle. It didn’t feel good by any means, but it wasn’t awful either. I received a total of 8 tattoos.

This is the side of my body where there was no cancer. No radiation was done to this side, but my entire body was taken in to consideration in the radiation planning process to ensure they targeted the cancer and did not hit anything other than what required radiation therapy. 

In radiation treatment my body was thoroughly positioned and accurately aligned by the technicians, who then stepped out to the other side of this door to reduce the risk of radiation toward the medical team. 

This is the bed which was configured specifically for the radiation of my breast.

Lying down in the radiation treatment bed, looking straight up at the ceiling, I saw this camera and more importantly it saw me. This is how the Radiation Technician was able to watch me and the process as the radiation was being targeted.

Outside of the treatment room, the Radiation Technician had a video image of me on one monitor and the details of my treatment on two others.

Once I was situated on the table, it took between 1 and 3 technicians to line up my tattoos with radiation machine's lasers.  It is a very detailed process of lining up the body with pinpoint accuracy. It took anywhere from 5 to 15 minutes to line me up for each of my 30 treatments.

Here you can see the lasers lining up with my tattoos.

Receiving radiation took about five minutes once I was in place. I was able to breathe normally, but didn’t move. I heard the buzz of the machine, but felt nothing as it was happening. To help me get through it mentally, I was able to choose whatever music I wanted to listen to. The Rolling Stones took me through pretty much every treatment. It was surreal to say the least.

Cancer Answer Tuesdays

What can I do about metal mouth? What is a good gift for a cancer fighter? How do they do radiation tattoos? How can I prepare for surgery? What should I say to someone I work with who was just diagnosed? How am I going to get through today?

Every Tuesday, The Why? Foundation will present a small, but big cancer question and answer about fighting cancer day-to-day, hour-to-hour, minute-to-minute.

If you have a question or a helpful tip, we want to hear about it. Please email us at info@thewhyfoundation.org.