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

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

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