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

BUDGETING AND FINANCING CANCER: THE “GETTING STARTED” CHECK LIST

CANCER ANSWER TUESDAYS

by Allison W. Gryphon

With my Friend Isis who stood by my side and helped me through every step of the way, 
including helping me figure out how to budget.

Cancer is a life change that is full of surprises.  The first surprise I got and the last surprise I wanted was the diagnosis. Unfortunately that is not the only thing that needs to be taken into consideration. Being diagnosed with cancer impacts everything in your life, including your finances. Below is a check list of items to take in to consideration in planning how to fight your cancer financially.... And for those of you who have not been diagnosed, but do have a cancer fighter in your life, there are many considerations below that can turn into wonderful and helpful gifts.

1. OUT OF POCKET MEDICAL COSTS

Depending on where you are and what your coverage is, you will most likely have out-of-pocket medical costs. This can be everything from visits to the doctor to stocking up on supplies at home.

2. TRANSPORTATION

Gasoline, parking, wear and tear on your car and taxi cab expenses go way up when you are going from one doctor to another several times each week.

3.  TIME OFF WORK 
Anyone going through cancer treatment that is part of the work force will need to take a certain amount of time off. For many, this will mean an adjustment in income that needs to be taken into consideration.

4. NEW CLOTHES

Whether it be surgery, chemotherapy, radiation or all of the above, cancer treatment brings changes in your body. It’s likely that you will want to make some adjustments to your wardrobe.

5. FOOD

Shopping for groceries and preparing food can change in many ways with a cancer diagnosis. Depending on the circumstances, the diagnosis may mean an overhaul of your diet and an added expense. In addition the act of shopping and preparing food can be exhausting. You may find yourself wanting to bring in help or order delivery more often.

6. HELP AROUND THE HOUSE

Cleaning, grocery shopping, laundry and housework all take energy many cancer fighters don’t always have and are frequently prohibited from post op. Depending on the support you have from friends and family, you will need to budget for help around the house.

7. ODDS AND ENDS

Now you’re fighting cancer and you will need to budget for the little things that are going to come up. A recording device to bring to doctor appointments to you don’t have to write down every word they say, a little cooler to carry your meals around when you go from appointment to appointment, a new soft pair of slippers since you’re probably going to be in them often. The list goes on and the costs will go up so the most practical movie is to create an allowance.

8. LET PEOPLE HELP YOU

The last thing to think about when getting started with cancer treatment is to let people help you. People will want to support you with time, services, gifts or finance. Budget in your emotional allowance to let others help out.

ABOUT 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 for Cancer Answer Tuesdays, we want to hear about it. Please email us at info@thewhyfoundation.org

www.thewhyfoundation.org

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

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.

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.