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THE EXPERIENCE OF LIVING WITH CANCER

TOUCHSTONE THURSDAYS

by Veteran Cancer Fighter Janice Thorup

Do your work as though you had a thousand years to live and as if you knew you must die tomorrow.

Shakers, famous for their woodworking and simple lifestyle, took this bit of philosophy and made of their lives works of simple beauty.

The experience of living with cancer has provided me with a similar focus. What work I do must be done for the sake of the work itself. I may not live to see its outcomes. I plant a small garden knowing that I may not live to see the harvest and the act thereby takes on a greater significance—it becomes an act of worship, a gift to the earth, to those who will come after me. And the gift is returned to me in the pleasure I take in actions that are disassociated from their results. I bask in the action itself, in the moment at hand, without wandering into that unclear domain of the future.

In 1995 Janice was diagnosed with Chronic Mylegenous Leukemia and given less than a year to live. Proving cancer wrong on a daily basis, Janice is happily married, a proud mother and grandmother enjoying the good life in Colorado.

Click Here to Read Janice Thorup’s Short Story The Blast Cells

www.thewhyfoundation.org

MONDAYS AT RACINE a film by Cynthia Wade

FIGHTING CANCER CREATIVELY

“When your life is at stake, why is losing your hair so hard?”

The power of movies is amazing. Cancer representation is incredibly important and often overlooked. Mondays at Racine is a movie that really does it right! Thank you Cynthia Wade!

Click Here To Visit The Movie Website

www.thewhyfoundation.org

5 AND 5: MANAGING THE CANCER FIGHT

QUESTIONS, ANSWERS & TIPS FOR CANCER FIGHTERS & CARETAKERS

by Allison W. Gryphon

CANCER ANSWER TUESDAYS

Resting post op at my friend Isis's house with her cat Magic. They both made sure to remind me that part of 

managing the cancer fight is knowing when to rest.

Q: Fighting cancer is a full time job. How do I do this?

A: The impact of a cancer diagnosis changes everything for the cancer fighter and everyone around them.   Management of time and information is essential.  Everyone involved has a somewhat daunting new job so the best approach is to take a deep breath and then make a plan.  

5 MANAGEMENT IDEAS FOR A CANCER FIGHTER

1. Medical Profile. Being diagnosed with cancer means many new doctors who all want your personal and family medical history. Typing up a complete list along with your emergency contacts, insurance information, current medications and allergies to have on hand for your new doctors is helpful, efficient and a time saver for everyone.

2. Team Leader. You can’t do it all and you shouldn’t. Fighting cancer is a team sport. Pick a team leader. Having 1 or 2 people assigned to this position is a great help in communication and time management. You need to focus on fighting cancer. Let your team leader provide updates on how you’re doing and field questions and emails from friends, family and co-workers who want to check in and help.

3. Calendar, Notes and Questions. Keeping a cancer calendar can be a huge help. One calendar with all of your tests and appointments, notes from appointments and questions for future appointments is helpful in managing time, looking back if you need reference for billing, insurance or history, and so your team leader/s have one place to go and look up everything that is going on and has gone on with your cancer fight.

4. Schedule. Make a realistic schedule that includes everything you need to make your life go. Doctors appointments, grocery shopping, laundry day, rest periods, billing day, etc.. This will change of course, but having a plan and a system in place can help keep things on track and from being overwhelming.

5. Cancer Fighter Travel Bag. The Cancer Fighter Travel Bag is a bag that goes everywhere with you.  You will need all of its contents.  It's purpose is time, emotional and life management.  This is a fight that is not a sprint, but a marathon so consider all the things that make you happy, comfortable and organized when packing your Fighter Bag.  Your Cancer Fighting Travel Bag should include: 1. All of the information you need regarding your cancer fight 2. Things that make you feel good and practical items that are going to support what you are going through 3.Copies of your medical profile and insurance card 4. Your calendar 5. Snacks that travel well 6. An extra pair of socks for cold doctor’s offices 7. An iPod or something like it to record your doctor’s appointments that also has a selection of your favorite songs to put you at ease 7. A few photos of your favorite people to remind you that they’re always with you. 

5 MANAGEMENT IDEAS FOR A CARETAKER

1.  Phone Tree. In supporting a cancer fighter, you need support too. A phone tree including everyone willing and able to help, what they can help with, times they are available and what part of town they life in is invaluable.

2. Shifts. Don’t push yourself to the limit. Caretaking is a rough gig and a long haul. Form a team and work in shifts. Make sure all of the caretakers involved get not only physical breaks, but emotional breaks as well.

3. Calendar. Being a caretaker means the cancer fighter’s calendar merges with yours. Schedule your caretaking time, just like you schedule anything else and make sure you have a copy of your cancer’s fighter’s full calendar so you’ve always got a full picture of what’s going on.

4. Work Sheets. There is a lot that needs to get done when you’re a Caretaker. Many are things we never think. Creating simple worksheets for each task as they present themselves can help the whole team. For example, after my mastectomy and lymph node dissection I did not have the strength to open the refrigerator so my caretaker was sure to take anything out of the refrigerator that I might need before hopping in the shower or running out for an errand.

5.  The Caretaker Fighter Bag. Fighting cancer is full of appointments and surprises. Having a bag packed that includes everything you need to take care of you and your cancer fighters is very helpful. Contact numbers, copies of your fighter’s medical profile, snacks, things to keep your organized, nice distractions. Everything you need for the practical and emotional last minute surprises.

If you have any suggestions or questions for Cancer Answers: Managing the Cancer Fight please email us at info@thewhyfoundation.org.

www.thewhyfoundation.org

One Life

Power of Music Mondays

by Allison W. Gryphon

photo by jamesmorrisonmusic.com Talenthouse contest winner
Suelan Allison-Modrzejewski

“I won't let my soul slide away, I'll do whatever it takes. Coz this time's only borrowed.”

Oh right. He gets it. There is nothing more comforting that sitting in your cancer reality, looking at life with an entirely new perspective and then hearing a song that seems to hear what you’re thinking.  The first time I heard “One Life”, I had completed treatment. I was considered a “survivor” but whatever that meant I wasn’t sure. I’m still not sure. Yes, I survived the treatment. Yes, there is no evidence of disease in my body… and yes, I know that doesn’t mean I’m “free and clear”. Maybe that’s why this song has had such a hold on me since the first time I heard it. There is a profound simplicity to it. We’ve got one shot in this world. Me. You. Cancer. All of us.

CLICK HERE to purchase “One Life” from the album The Awakening.

CLICK HERE to visit the James Morrison official website.

"One Life"

When I was a young boy
I was living for the moment
The world was wide open
I had every choice
But with so many choices
I just didn't know what to do now
All I say is just forget it
If you tell me I'll regret it
Just let it be what it is
Coz it's so easy to say

If I knew yesterday what I know today, where would I be tomorrow
I won't let my soul slide away, I'd do whatever it takes
Coz this time's only borrowed

I got one life, one life, one life and I'm gonna live it
I got one life, one life, one life and I'm gonna live it right

My daddy sat me down, he said, 
"Son it's probably time to start making some plans"
And I said, "No, not right now"
With so many choices
I just didn't know what to do now
All I'd say is forget it when he'd tell me I'd regret it

Just let it be what it is, coz it's so easy to say.

If I knew yesterday what I know today, where would I be tomorrow
I won't let my soul slide away, I'd do whatever it takes
Coz this time's only borrowed

I got one life, one life, one life and I'm gonna live it
I got one life, one life, one life and I'm gonna live it right

You say the more you think you know what's right
The less you do what you feel inside
So I won't pretend that I always know
I just follow my heart wherever it goes
And I may not always get it right
But at least I'm living coz I've only got this... 

One life, one life, one life, I've got this one life.

If I knew yesterday what I know today, where would I be tomorrow
I won't let my soul slide away, I'd do whatever it takes
Coz this time's only borrowed

I got one life, one life, one life and I'm gonna live it
I got one life, one life, one life and I'm gonna live it right

When I'm an old man, hope I'll be rocking in my chair
Smiling to myself
I'll tell my baby girl
"You only get one life, so make sure you live it right"

More lyrics: http://www.lyricsmode.com/lyrics/j/james_morrison/

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.

The Blanket Fairy: Fighting Pediatric Cancer with Sprinkles of Comfort

TOUCHSTONE THURSDAYS

by Alia Tarraf

Here is the proof fairies are real and you don’t need money to make magic.

In 2009, Kim Ortega was a work-at-home mom who had been selling clothes, fabrics and handmade blankets online for years.  It was more of a passion than a job since she didn’t really make a large profit from it.  Kim and her husband, John, who was an Agency Operator for Hertz, had a happy life, the parents of two beautiful children, Zachary (5) and Madyson (1).

Then John was laid off.  That’s when things hit rock bottom.  In January 2010, Kim and her two children watched John drive away from their home in Arizona so he could start a new job in Missouri.  It was the only work available and the family could only afford for him to go. 

Brokenhearted and knowing they wouldn’t see him for five months, Kim would lay awake at night, missing John.  On one of her sleepless nights, she was online and came across a prayer request for Layla Grace Marsh on Twitter.  Layla suffered from Neuroblastoma, a cancer of the network of nerves that carry messages from the brain throughout the body.  Kim’s heart went out to her.  She stayed up all night reading.  Layla’s story stuck with her and inspired Kim to begin following other children with cancer on Twitter, wondering what she could do to help. 

Then she had an idea.  The blankets.  Kim began to contact the parents of these children struck by cancer and offered to make a blanket for them. 

The response was quick, the demand was high and the work was rewarding.  Kim began going on Ebay to ask fabric vendors for discounts or if they were willing to donate.  Two out of three companies offered to donate their fabric and materials.  Kim was shocked.  And excited.  Here was something she could do to comfort others, and indirectly, comfort herself.

Word spread and people began asking if they could help too.  Soon, Kim had volunteers all over the country at their sewing machines.  She had become The Blanket Fairy.

---

WHAT DOES THE BLANKET FAIRY OFFER?

Our mission is to make and donate as many blankets as possible to children with pediatric cancer.  We follow many blogs and websites and when we see a child that needs a lift in spirits while going through treatment, we contact their parents to ask if we can send their child a package.  The package includes: a handmade blanket, a pair of pajamas, a "The Blanket Fairy" T-shirt, slipper socks, coloring books, crayons, markers or paint, bubbles, glow sticks, books, a few toys and a handmade super hero cape.

   

 

WHY DID YOU FEEL IT WAS IMPORTANT TO GET INVOLVED IN THE FIGHT AGAINST CANCER?

When these kids are diagnosed, cancer is the last thing on their mind. Most families are not even aware of the symptoms. Once their child is diagnosed, they do not have time to do anything but care for their child. I feel it is up to all of us as a whole to raise awareness.
 

WHAT HAS BEEN THE BIGGEST SURPRISE IN BECOMING THE BLANKET FAIRY?

Support.  I thought I was just going to deliver a couple of things to the hospital. I decided to open The Blanket Fairy Facebook page and I just could not believe all of the support.  I am not rich financially but I am good at figuring out how to get things done so people reaching out really helped.

The biggest single surprise was from Ellen Degeneres.

In August of 2011, I sent Ellen a “Gold Package of Hope”, which included a beautiful blanket with her favorite football team’s colors: gold and black.  The gold represents childhood cancer.  I asked all of my fans to go onto her Facebook page and ask her to open the package.  A few hours later, a video was posted on The Ellen Show website.  My email blew up.  Hundreds of people were asking how they could help. They sent me packages with handmade blankets, toys, pajamas, socks.  Awareness was spread.  

  

HOW CAN SOMEONE GIVE AND/OR RECEIVE VIA THE BLANKET FAIRY?

My goal is to bring a smile to a child’s face while they are going through the fight of their life.  I follow many blogs and what I will do is if there is a child that needs a lift in spirits while going through treatment, I will contact their parents to ask about sending a package to their child.

The only requirement is that I get a picture of the child with their blanket and goodies so I can post pictures on the site so people can see where their donations are going.  I do not take requests because I pay for the shipping most of the time.  I will only approach parents once I know I have the funds to do so.  I do make a list and go down the list as I have the funds.

At the moment, I can only do this for children living in the United States due to the high cost to ship out of country.

HOW DO YOUR VOLUNTEERS HELP?

The volunteers make blankets or hold events to make blankets for me and some do toy drives.

  

Volunteers can sign up at:

http://theblanketfairy.weebly.com/about.html 

IF YOU WERE ABLE TO HAVE THE ENTIRE WORLD'S ATTENTION FOR FIVE MINUTES, WHAT WOULD YOU SAY?

I would tell them to look at their child and imagine for just a second, “What if my child was diagnosed with cancer?”

To learn more about The Blanket Fairy, visit: www.theblanketfairy.com

If you have a story idea for The Why? Foundation, please contact us at info@thewhyfoundation.org.

www.thewhyfoundation.org