Learning to be a caregiver

BY GUEST BLOGGER | NOVEMBER 27, 2011

"I'll have a diet coke and the chicken sandwich with the veggies," I said to the waitress as I sidled up to the counter. I grabbed a book and began to read as I waited, trying to tune out the loud hum of the restaurant-goers. I've always loved coming to EJ's on my lunch break for both the atmosphere and the food. The large picture windows provide a clear view of the busy Little Rock street corner. The people walking by and the cars driving through the intersection reveal a city burgeoning with commerce and travelers.

The food at EJ's is good too. Besides the usual burgers and fries, they've also got healthier menu options like wraps, veggies and the like. I try to eat healthy as much as I can since my wife is always on my case to eat healthier. To be completely honest, I don't blame her. My diet will never be confused with Jack Lalanne's, so I'm fortunate my wife is always looking out for both of us. She frequently reads healthy cookbooks, so she can buy low-fat foods and cook heart-healthy meals. As a result, we've both been committed to healthy lifestyles and the two of us even ran a half-marathon last year.

At the EJ's counter, I tried to read my book over the sounds of the restaurant behind me when my phone began to ring. I normally don't answer on my lunch break unless it's the mayor (my boss) or my wife (my real boss). In this case, it was my wife, so I answered. I could barely hear her, so I pushed my seat back and stepped outside. "The doctor called. I have Hodgkin's lymphoma."

Boom! Crash! If my life were a cartoon, a ton of bricks and a grand piano would have fallen on my head. How could this happen? We were so healthy! What does this mean? What do we do now? What do I do? I would spend the next five months trying to figure all this out, flailing about in my new role as caregiver to a beautiful, 36-year-old cancer patient.

The idea of me as a caregiver is a bit laughable. To me, a clean room means I've piled my dirty clothes in a recliner rather than on the floor. A clean living room means I've moved the dirty dishes to the sink in the kitchen.

When faced with no choice but to sink or swim, one quickly learns to dogpaddle. Learning to be a caregiver is a similar experience (but not as wet). As I began my journey as a caregiver, I learned that everything becomes much easier when you're surrounded by supportive people and structures.

My own employer, the City of Little Rock, could not have been more supportive. I was glad to have an employer that wanted to make sure I never had to miss a single one of my wife's appointments, scans, exams or treatments. They have also been flexible on those days when I have needed to go home early on short notice or come in to the office late.

In addition to allowing me to take off when necessary, the city's policies allowed for me to take any hours I'm away from work providing care for my wife to come out of my sick leave rather than my vacation leave. Not that Elizabeth and I have the time or money to summer in The Hamptons, but it's nice to know I'm able to preserve the vacation days to do it if I wanted.

Being a caregiver is important, but it's not glamorous. Many people will recall that James Brady blocked a bullet meant for President Ronald Reagan in 1981, but even the most astute observers of American history would not recall the names of either injured man's nurses. Caregiving is humble work, focused outwardly rather than inwardly – a task more humbling in today's self-referential world of Facebook status updates, tweets and so on.

A caregiver's work is not measured by his own accomplishments but by the success of the patient. Success isn't found in washing the dishes or taking out the trash but in creating an environment in which the patient doesn't have to worry about such mundane things.

Through my role as caregiver, I've become a better person. I'm definitely a better housekeeper, but I'm also a better scheduler, a better friend and a better husband. With two chemo treatments to go (and radiation after that), my wife still has quite a road to travel, but it's a road we know will lead to better days ahead. I look forward to those days when I'll be able to sidle up to the bar at EJ's with all this a distant memory. Until then, I'll continue in my role as a caregiver, trying to dogpaddle as fast as I can.

Griffin Coop is a native Arkansan who works in the Little Rock Mayor's Office. He holds degrees from Syracuse University and Boston University and is currently pursuing a Master's degree in Public Administration at the University of Arkansas at Little Rock. Griffin enjoys college football, Southern literature and chasing the squirrels away from his bird feeder.

• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey
• Do men grieve differently?

The burden and blessing of childhood cancer survivorship

BY GUEST BLOGGER | SEPTEMBER 23, 2011

September is Childhood Cancer Awareness Month. While I am proud to be a part of the childhood cancer community, I sometimes feel that as our children graduate from active treatment back into the real world we can lose sight of the value of the close relationships we have formed along the journey.

This year, one of my objectives for childhood cancer awareness month is to shed light on the true scope of the challenges facing our youngest cancer survivors.

Childhood cancer survivorship is both a burden and a blessing for our children and a lifelong battle no matter how long that life may be.

My son Gabe is a 9-year-old cancer survivor. He was diagnosed at the age of 1 with a soft tissue tumor in his sinus passage. Gabe now struggles with the side effects of chemo, radiation treatment and repeated surgeries. Most acutely, 28 radiation treatments destroyed his pituitary gland and arrested the growth of his jaw on the right side. After falling off the growth charts for a while, he is finally growing with the help of a human growth hormone. Unfortunately, as Gabe's growth speeds up so does the deformity of his face on the right side.

Photo by Red Pepper.

Far from being singular in the late-term effects of cancer treatment, Gabe, in fact, is exposed to an amazing community of friends who live contentedly with amputated limbs, graft-versus-host disease, cognitive delays and/or secondary cancers.

It is vital that our children learn to rely on their cancer community as they are likely to live for many years after active treatment ends. As they grow, the long-term effects of cancer treatment become much more evident and extreme. Some, like Gabe, suffer greatly as their bodies and brains were not fully grown or developed when treatments were administered.

The side effects of childhood cancer are not only physical, there are emotional burdens of survivorship too. Guilt and worry are prevalent among parents of survivors. Our children are encumbered by having been exposed to very adult medical issues at such a young age that they can have difficulty relating to children their own age. Survivors of childhood cancer can be overly anxious and some even suffer from post-traumatic stress disorder (PTSD). Hardly surprising when most of them have to use both hands to count the number of good friends they have lost.

With all the responsibility of carrying the torch for lost friends and dealing with both medical and educational issues it may seem like the blessings of childhood cancer survivorship are hard to find - but they are in abundance.

As parents we are blessed to know that we are not alone in the issues of raising a survivor. We commune in online networks, in chat rooms or in-person support groups at organizations like Gilda's Club.

Our children are blessed to live in a time when there are survivorship clinics with incredible teams of doctors to chart and treat the long-term effects on our children's bodies and minds.

There are opportunities to find kinship and camaraderie at survivorship camps, where, for one week, our heroes lose the burden of being a curiosity and enjoy being around true peers.

As I work to educate families through my non-profit organization, Gabe's My Heart, I communicate a very clear message of optimism. The concept is that by encouraging and empowering families, we enable them to stay composed and focused as they face the diagnosis of childhood cancer together as a family. I strongly believe that we can carry this philosophy forward through to survivorship.

The relationships my family developed along our journey have helped guide us through the worst times in Gabe's treatment. Those same friendships are still the ones I rely on for support in my times of doubt and frustration. By nurturing those friendships I stay close to my cancer community, and I am reminded not to focus on the burdens of survivorship. We received the most amazing blessings from cancer survivorship, and that is Gabe himself. He is here with us still and we will face his late-term effects, whether medical or emotional, together as a family.

Photo by Red Pepper.

Lu Sipos is founder of Gabe's My Heart, a non-profit organization that provides education and support to families and children with cancer through its Chemo Duck program. She lives in Spring Hill, Tenn. with her husband Rob and movie star, cancer survivor, son Gabe.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• First day of school
• Walking the cancer journey
• Do men grieve differently?

First day of school

BY GUEST BLOGGER | AUGUST 29, 2011

September 1, 2009
Morning

It is my oldest son's first day of kindergarten, or really his first hour of kindergarten. My husband and I are taking him to be "oriented" to his classroom in anticipation for the real start tomorrow, sans parents. Given there is no separation involved in this orienting hour, I am aghast when tears begin spilling from my eyes, striping my cheeks. "We have made it to kindergarten," I tell myself. I take a deep breath and wipe my eyes.

My son, Harry, and I walk hand in hand down the corridor as kids and parents bustle about, the enthusiasm and excitement palpable. The 1600's brick school house is quintessential New England and quintessential kindergarten. Its large wooden windows are cracked a little, just enough to waif in the nippy fall air. The classroom walls are laden with 5-year-old art, its shelves lined with bottles of Elmer's glue, small red and white milk cartons and colored plastic trays. Memories of kindergarten 35 years ago come flooding back.

"Mom, are you staying with me today?" Harry asks for the third time of the day.

"Yes, honey, Mommy is not going anywhere." I shudder at the irony of the words.

My husband, having arrived by separate car, spots us coming down the hall and notices my tears. He gives me a nod that suggests he understands my typical mother-letting-go-of-son emotions. What I cannot utter, for fear of dissolving in front of my son, husband and a multitude of composed parents, is that my tears are not about letting go of my son as he enters kindergarten, but of complete joy and gratitude for being able to let him go. I had played this very scene over and over again in my mind, praying every day, all day, that I would be blessed to act it out. Here I am. Alive and cancer-free after my lymphoma diagnosis two years ago. Thank you, God.

Evening

I drive 30 miles north to glorious New Castle Island, NH, to pick up my nephews, Brad and Adam, for some back-to-school shopping. Adam is starting his freshman year of college and Brad his junior year. As they approach the car, I am struck by their stature, each over six feet tall.

"Are you registered for all your classes?" I ask Brad as we drive toward the department store.

"Yup," he replies as he checks his email on his BlackBerry.

"Don't forget to go to Health Services to check on your health care coverage, you have a doctor's appointment next week. We need to make sure you are still covered by your school insurance."

"Yeah, will do," he replies as his thumbs move quickly across his phone's keyboard. As we enter the department store, we separate. I head for the toddlers and boys section and they head to mens. I watch them go, remembering with a familiar ache when my sister and I would shop for them in toddlers and boys.

We leave the department store, exhausted and hungry, with carts overflowing with bedding, towels, and speakers – all later to be housed in dorm rooms.

"I'm starving," says Adam as he surfs on his iPod.

"How about Flatbreads," suggests Brad.

"Sweet," replies Adam, and I steer the car in the direction of the local pizzeria.

"How did Harry like his first day of kindergarten?" Brad asked as the waitress brings the large chicken and artichoke pizza, small white, and large garden salad. Man, can they eat.

We talk about Harry's teacher, the school bus and his new found ability to run faster in his brand new Nikes. I'm careful not to mention my tears.

"Thanks so much, Kit," Brad says as we finish every last bite of food.

"Yeah, Kit, thank you for everything," echoes Adam.

"Of course," I say as I raise my glass to them. It is hard to believe it is exactly five years ago today that my sister died of breast cancer. "Your mom would be so proud of the two of you starting school. And, I know she'd want us to be together tonight. I love you both so much."

For the second time of the day, my eyes well with tears, as her sons' eyes, no longer scanning their Blackberry and iPod, lock mine. My heart swells with love, loss and deep gratitude for being alive to share in their first day of school, too.

Kit E. Haber, PsyD, is a non-Hodgkin lymphoma survivor and a carrier of the BRAC1 gene. She aspires to share her stories of loss and challenge through writing in order to help others move forward through similar experiences. She resides in Saint Augustine, Fla., with her husband and three young sons. She is a licensed clinical psychologist and executive coach and can be reached at kithaber@gmail.com.

• Make a difference
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Walking the cancer journey

BY GUEST BLOGGER | JULY 28, 2011

As an intern, I'm up for anything. Except for getting coffee. I don't do coffee. Okay, if you asked, I'd get the coffee, but I wouldn't be happy about it! The point is, I'm eager to please and game for anything. So when I found out that a devoted reader from India would be visiting the CURE office on Tuesday, I leapt at the opportunity to interview them. I expected to meet someone who was just interested in a tour and a quick hello, but what I got was an afternoon of enlightenment from a man who has made walking the cancer journey with others his life's mission.

Niranjan Parikh has never had cancer. In fact, at 74, he says he's never even experienced a headache--a fact he attributes to his healthy lifestyle. Yet he's dedicated the past 17 years to counseling cancer patients at Mumbai's Tata Memorial Hospital, one of the largest cancer centers on the subcontinent. More than 50,000 new cancer patients visit the hospital each year and Niranjan, who volunteers his time, is half of a two-person team that supervises the entire pediatric volunteer and social worker support group. For the past five years, in addition to his work with the pediatric oncology division, he has facilitated Ugam, a group of childhood cancer survivors. You might think that such a heavy patient load would diminish his enthusiasm, but Niranjan spends five days a week providing what he calls "the biggest and most important role" of cancer care: communication.

As many of our readers know, when it comes to cancer, communication is everything. From understanding your disease and treatment options, to passing the information onto family members and loved ones, communication is an essential and daily part of the cancer journey. So in a country where the patient population speaks more than 14 languages, Niranjan and the medical team definitely have their hands full. Niranjan needs to be able to explain to the patients what's happening to them, which is why he says CURE is like a bible to him, due to the educative value found within. He says that he reads every issue and when the opportunity presents itself, he passes the information onto the family in need.

Niranjan, who has traveled to the US every June for the past 10 years or so, spends his time stateside visiting family members and volunteering at prominent cancer organizations to observe how they function and translate that knowledge back to India. It was during his stint at The Leukemia & Lymphoma Society in California that he found his first issue of CURE. He says he was so impressed by the information provided that he was instantly hooked. After attending a live conference back in 2007, he kept in touch with CURE staff, which is how he wound up at our office on Tuesday afternoon.

And although I learned a lot during the short amount of time I spent with Niranjan, the thing I'll take away from our encounter is his passion for what he does. He told me that from childhood, he had no desire for money and material things, however pleasurable, because such pleasures are temporary. Rather, he found lasting joy in serving others.

So no matter where you are in your own cancer journeys, I hope you, like Niranjan, have found your joy.

Taylor Walker, a graduate of the magazine journalism program at the University of Missouri-Columbia, is a summer editorial intern with CURE.

To contact, Niranjan Parikh, please email him at niranjan1937@gmail.com.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Do men grieve differently?

Thanking your caregiver

BY GUEST BLOGGER | DECEMBER 20, 2010

Sometimes, I find it easy to say thank you. There are just those obvious moments that clearly deserve a thank you: when someone gives you a card or a gift, pays a compliment or goes out of their way to do something nice.

And then there are the times that the emotions surrounding the action are so complex, I'm not sure how to begin to express gratitude. For example, how do I say thanks to a caregiver? It seems like the thanks should extend beyond a simple word or action. Or you can say thanks several times over, and it still doesn't feel like enough.

As I mentioned in my previous post, I've become more aware of the caregivers in my family. So how can I or anyone else who knows and loves a caregiver offer thanks?

One way to start is by telling the world how amazing your caregiver is. For example, take Stefani Spielman's story. When Stefani discovered she had breast cancer in 1998 at the age of 30, it was her husband who was beside her every step of the way. Chris Spielman was an NFL linebacker at the time and took a year off to support his wife. When she lost her hair due to chemotherapy, Chris shaved his head. And both Spielmans advocated for breast cancer research. But they also recognized the role the caregiver plays in the fight against cancer. And so Stefani's Champions started with Stefani honoring her husband as the first champion. Now, every year people can submit a short essay and honor the people who have gone above and beyond in helping out. Stefani's Champions honors people that exhibit three basic characteristics: puts family first, shows kindness and commitment to the cancer survivor and place's the survivor's needs above personal needs.

Still want to find a way to thank your caregiver now? There are plenty of things you can do.

1. Give them time off--guilt-free. Caregivers sometimes find it hard to ask for help, but time away will give them a chance to recharge their batteries. Be proactive and offer up a thought out plan for when they can take a break. Having a plan will reassure your caregiver that things will be taken care of while he or she is gone. Even if it's only for a little while, having some time to relax is always welcome. And caregivers can use the time in a variety of ways: either enjoying a night out and catching up with friends or maybe taking care of the essentials such as scheduling a dentist appointment that they might've put off.

2. Be thoughtful. You can always give them something small and personal. Maybe your caregiver enjoys movies but doesn't really have time to go out. Suggest a movie night. Do they spend a lot of time waiting? Create a customized playlist, maybe a series of songs expressing thanks or songs that are meaningful to your caregiver or the both of you. Or is there a hobby your caregiver enjoys or a book you think they might like? Invest a little money in the hobby (For example, if your caregiver likes knitting, maybe buy some yarn). Or give them a $5-$10 gift card to a book store. Little things can make a big difference.

3. Share with the world how great your caregiver is. You can write a letter to your local paper or a local newsletter, share in your church bulletin, have someone give them a public shout out on a blog or website. Even update your Facebook status to show your appreciation. (Or you can create a Facebook page for your person!) With the Internet, the possibilities for sharing your caregiver with the world are endless. You can also check with your medical facility to see if they have a program to thank caregivers, like the one at Beth Israel Deaconness Medical Center. If they don't have a program at your facility, talk to someone about starting one!

4. Create something special. A cheesy poem, fun video, or artwork may seem silly but could actually be a really good idea--no matter how old you are. I once wrote a story and presented it to my grandmother as a gift, and she framed it and put it on display in her living room. Something you create will probably be highly appreciated because you put forth effort to make something especially for your caregiver. Don't feel like much of the creative type? Then try leaving little notes in unexpected places. Maybe your caregiver took over making meals, so you could place a short note in the kitchen thanking them for cooking. Sometimes small surprises can be the best thing to get.

5. Return the favor. While many caregivers run, walk, and fundraise for their loved ones who have battled the disease, you can honor them as a thank you. There are plenty of ways to fundraise. You can start by finding something you're good at or looking into a specific organization. Ask your friends and family to join in the support and help you honor your caregiver.

6. Do something together that has nothing to do with cancer. Maybe go to a park you both enjoy visiting but haven't been to in a while. Or if you both enjoy visiting museums, make a plan to go and see an exhibit. Or suggest a Respite Weekend that's sponsored by the Well Spouse Association.

7. Say it. Even though it may seem small, just saying the words "thank you" is always a good place to start.

How have you thanked your caregiver? Or do you have tips for someone who wants to thank a caregiver?

Lindsay Ray is the editorial assistant for CURE.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey

Thanksgiving for caregiving

BY GUEST BLOGGER | NOVEMBER 23, 2010

On Oct. 29, President Obama declared November 2010 National Family Caregivers Month. (You can read the full proclamation at www.whitehouse.gov.)

Personally, I've never thought about having a month to honor and celebrate caregivers before. But these past few years have been different for my family. I've moved back home after being out of state for two years, and being back closer to my family has brought things more into focus.

I have watched family members be affected by various illnesses. There have been hospital visits and uber-clean environments. I have seen other family members step up and become primary caregivers while others take smaller supportive roles. These experiences have forced me to examine the many hats a caregiver must wear and to understand my own small part in the process.

Honoring caregivers in the same month we celebrate Thanksgiving is perfect. It's a great reminder of the people we have to be thankful for. And I know that as my very large family gathers around the turkey this year, I will be a little extra grateful for my family and the multiple ways they show they care.

To learn more about navigating the family caregiver role and find helpful resources, read CURE's 2008 article, The Invisible Caregiver.

Lindsay Ray is the editorial assistant for CURE.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey

Caring for someone with cancer? Surprise, you're a caregiver

BY GUEST BLOGGER | AUGUST 21, 2009

Lindsay Ray, a graduate student at the University of Missouri School of Journalism, is an editorial summer intern for CURE.

This summer my cousin was diagnosed with testicular cancer. As this is my first experience with someone close to me being diagnosed with cancer, my mind was immediately filled with questions.

What does this mean? How should I feel about this? How can I help? It was the helping question that proved to be the most trouble. Because my cousin lives a few hours away and being a poor college student, I couldn't drive to visit him often as I would have wanted. Instead, I decided to help out by doing some of the things I do best--research and baking. I volunteered to be the family medical researcher and baked a huge batch of brownies I mailed to him overnight.

Does this mean I consider myself a caregiver? Not necessarily--but maybe I should. While working on the article "I'm Not a Caregiver, Am I?" I got the chance to interview people on how most caregivers don't see themselves as caregivers. What I discovered in working on that article is that most caregivers never label themselves as such. They're so focused on the action of taking care of someone that they never sit back and think about the role they've been thrown into. Sometimes it takes someone else (most likely the patient) to help the caregiver think about their new role.

The main revelation I took away from working on the article is anybody can be a caregiver. The role of caregiver is hard to define for people because it encompasses so many different activities--from occasionally offering assistance from afar to helping someone daily. I still find it hard to consider myself a caregiver. I mainly consider my part as doing whatever I can (no matter how small it might be) to help out. If that makes me a caregiver, then I guess I am one.

What I do know is that caregiving is something that touches everyone's lives whether they recognize the caregiving role formally or not.

I think Rosalynn Carter put it best when she said, "There are only four kinds of people in the world--those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey

New cancer site combines social networking, research, and medical record keeping

BY GUEST BLOGGER | JULY 24, 2009

Anna Sobering, a senior journalism student at the University of Kansas, is an editorial summer intern for CURE.

Patients and caregivers have a lot on their plates when dealing with a cancer diagnosis and its treatment. Easy tasks such as keeping track of appointments, medications, side effects, medical records, and updating friends and family, can be daunting for patients going through the physical and emotional stresses of cancer.

The American Cancer Society recognized the cancer community should have a way to use available technology with the information the ACS provides that would satisfy the needs of those who are dealing with cancer.

Len Lichtenfeld, MD, deputy chief medical officer at the American Cancer Society says, "We begin to realize, as we live in an information age, that we will need to have tools that take advantage of the technologies that are out there."

As a result, the ACS launched Circle Of Sharing, a free social, organizational, and informational online resource tool for the cancer community.

In the development of this site, the ACS understood it must meet the expectations of a public that routinely uses the advanced social networks already available to them online. Therefore, with the help of Microsoft HealthVault, a free, secure, and private health service, the ACS built the Circle Of Sharing to function as a community networking application combined with a system that stores electronic medical records and provides a personalized collection of credible research and resources from the ACS.

In looking over the site, I've come to the conclusion that this tool could make the lives of those dealing with a cancer a lot easier. Instead of spending hours online researching and sifting through the vast amount of cancer information on the Web that could be unreliable or incorrect, Circle Of Sharing allows users to simply enter in information about their cancer and the site instantly provides them with personalized articles about their cancer diagnosis, treatment options, side effects, local resources, and support groups.

Lichtenfeld says the convenience of this tool makes it an extraordinary online resource for cancer patients and caregivers. "Being able to put all medical information in one place and putting the patient in control, really puts this Circle Of Sharing on a higher level than most of the other services that are available to the cancer community," he says.

Similar to an online social network, users can invite friends and family to become part of their 'Circle' to keep in contact with them or share updates regarding the status of their health. Similar to a Facebook page, users have profiles that they can customize and update. They can also choose to share any of the personalized information that is provided to them by the ACS with members of their Circle. To file their records in Circle Of Sharing, users will also need to create a Microsoft HealthVault account. Electronic medical records entered into Circle Of Sharing are stored in Microsoft HealthVault. Personal information entered in Circle Of Sharing is protected by the security and privacy enhancements put in place by Microsoft.

According to Lichtenfeld, users should not fear the security of their medical records on Circle of Sharing. "Microsoft has gone to great lengths to make sure privacy and electronic medical records are protected," he says.

Does Circle Of Sharing meet all the needs of the online cancer community?--Lichtenfeld says it's a step in the right direction.

• Learning to be a caregiver
• Have you nominated a nurse yet?
• The burden and blessing of childhood cancer survivorship
• First day of school
• Walking the cancer journey