Author: sarambarton

Sometimes kids whose lives are touched by cancer remind me of deep water on a lake. The surface may be smooth and it all looks calm, but under the water, things are dangerous. You sometimes don’t know what lurks beneath until you explore those depths.

It’s always important for adults to understand the thought processes of children who have a loved one in cancer treatment. If you don’t know what a child is thinking, you can’t understand what a child is fearing. Monsters still have power over children, even teenagers, and if their feelings create their perception of cancer’s power, it can knock them off balance. The greater the empathy of the child for the loved one with cancer, the greater the impact of the fears and worries on the child’s emotional growth.

Sometimes it’s the children who act out that get the best help. They draw attention to their own pain and confusion. But many other children bury their emotions in order to keep the family copacetic during cancer treatment. They sacrifice themselves emotionally for the parent or sibling who is physically suffering. They hide their own pain out of love.

Children who have a family member with cancer need real support to deal with the fears and stress. It’s often difficult for the family to understand that even though there are no signs of any problems, problems can still exist. When a family member has cancer, children want to help. They offer themselves as comforters and carers. They may go to school, get through the day, and come home, prepared to sacrifice their childhoods to make a loved one feel better. This can mask what is really happening inside, and it can change how a child becomes an adult. When fear drives our emotional selves, we tend to get all twisted up in our relationships. This can create psychological triggers that can affect the rest of our lives, unless we learn to process our emotions and understand our experiences, even as they relate to those we love.

Children are never able to completely appreciate adult issues like cancer. Their minds aren’t well-enough formed to be able to cope with the complexities. They try to compensate by acting as little adults, but their hearts still beat as children.

Understanding how children are affected by the cancer of a loved one, and finding them the right support to process their fears is critical. Regardless of the outcome of their loved one’s cancer, the fears need to be understood in context with the reality of the situation, on a level that appreciates the different stages of child development.

There are many wonderful organizations and support groups that offer resources and information on helping children with this issue. Cancer centers and hospitals offer programs that are designed to meet these needs. Cancer camps and retreats also provide programs that address these issues, in addition to offering opportunities for families to bond in fun ways.

Don’t assume, because a child appears cooperative, that everything is fine and there is no reason to worry. Talk to your children about their perceptions of their loved one’s cancer. If you discover that your child is having a problem, get help. Look for ways to help your child cope with the fears and worries that cancer brings to the whole family. You’ll be glad you did.

On my way home from grocery shopping today, I passed a house festooned with banners and yellow ribbons. It was a welcome home for a member of our armed forces returning from war. How touching a sight it was to see. This is a family that made a big effort to let their loved one know just how missed he or she was.

As I wondered what that sweet moment would be like for the returnee, I also wondered how he or she would adjust to being home again. It takes time to reinsert yourself into “normal life” after you’ve been in a war zone. And that’s when I realized that many cancer patients have a similar experience after their treatment is over.

What do I mean by that? When you go through the rigors of cancer treatment and survive it, it can be hard to get back to “normal life”. If you’ve spent many hours at the cancer center, undergoing radiation and chemotherapy, if you’ve had surgery and dealt with the debilitating recovery, it’s fairly common to hold back a little part of yourself, to think that you’re not quite sure you’re really “home free” yet.

And in that way, you are connected to many of our returning troops. You want to trust in the good days, hoping they will lead to a permanent cure of your cancer, but the fear stays with you. Sometimes it’s right out front, in the open. Sometimes you might push it aside or bury it, but it never quite goes away.

How can you cope with the fears that accompany the end of your cancer treatment? How can you feel you are “home free”?

The truth is that, like any combat veteran, you will have to cope with the stress of having had cancer. Just as many an experienced combat vet might start suddenly and involuntarily at the sound of a car backfiring, until he or she has enough time back in the States to be able to recognize it as a car backfiring and not someone shooting, you’ll need to be patient with yourself. You may find yourself worrying constantly about every ache and pain. You might lie awake some nights fretting about whether the cancer is coming back. What can you do about it? How can you cope with it?

Time and experience are your best supports. The truth is it takes a while to feel that your body successfully beat back the cancer. You won’t know right away. But as your days evolve and you begin to shake off the side effects of cancer treatment, you are likely to feel more like your old self, and that’s a big sign that things are going well. As the days turn into weeks, and you begin to do more, your life will probably slowly resume its course.

I say probably because you’ve been changed by cancer. Even if you didn’t want it to, the experience influenced your life. It took away your sense of trust. It shook you to the very core of your foundation. It kidnapped your life and held it hostage until the treatments were done. It stole your right to choose, and in doing so, may have left you feeling powerless and weak, not only physically, but mentally and emotionally.

You’ve had a tough time with cancer, so be patient with yourself. Recognize that fear can sometimes interfere with your relationships and your outlook. Just like that combat vet returning home, it’s going to take time for you to feel comfortable moving forward with life again. You may be reluctant to jump in with both feet. If you find yourself hesitating, take a deep breath and a step. Build on the steps as you go. Understand that the people who love you may not understand the depth of the feelings you have or why you have them. If they expect you to be your old self again, now that cancer treatment is over, you may have to speak up for yourself. Be honest. You’re still sorting it out.

The people who love you will do their best to support you, even if they don’t always understand what you’re going through. Do the best you can and understand that moving forward is a process. You didn’t get cancer overnight; neither is there a magic cure. While you’re waiting to feel more like your old self, think about what you’ve learned. Did you know how many people care about you before your cancer experience? Do you have goals you’d like to reach when you feel better, dreams you discovered inside yourself? Start weighing your options and your strengths. As your mind begins to understand what you still have working for you, your confidence will return. Time will tell.

One of the toughest things for parents who have a family member in cancer treatment is to cope with the needs of the children in the family. It can be overwhelming when you have to constantly worry about a loved one who is very vulnerable. Healthy children tend to get shunted aside because their needs aren’t as great. That’s sometimes just the reality of cancer.

How can you help children to thrive while you have a family member in cancer treatment?

First, it’s important to identify the needs of the entire family. If you don’t stop and take a look at what is going on, you won’t be able to find solutions to the problems.

Second, accept the fact that cancer takes a toll on any family. Everyone needs support, resources, and problem-solving to meet the challenges. You should never feel like you’ve got to do it alone.

Third, remember that most cancer treatment centers and hospitals have wonderful programs to meet as many of your needs as they can. There is usually a cancer navigator on hand to steer you towards the programs that can help. Even if your loved one is not currently being treated, but is suffering from the side effects at home, the programs are available to the family. Take advantage of those that meet your needs.

Fourth, consider hooking your children up with individual mentors. If your attention is currently focused on your vulnerable family member, you don’t need to feel guilty about neglecting the children when you let other people help you.

What does it take to mentor a child? Who can do this? If your children have close friends whose parents are supportive of your situation, why not ask if one of your children can spend a little more time there once or twice a week? They may be willing to take your child under their wing. Giving a child a chance to have a more normal life doesn’t take away from your sick loved one. Allowing your children to spend more time with their buddies and their families can be very therapeutic.

What can mentors do:

Invite your children to dinner, so they can remember what normal family life is like.

Have your children sleep over, so they can laugh and play without holding back.

Take your children to ball games, sporting events, the movies, and even to the mall — all the things you don’t have time to do.

If your children are participating in school events or sports, having a mentor can be an enormous comfort. Every child wants someone in the cheering section, and the truth is that when you’re coping with a family member going through cancer treatment or suffering from the side effects, you’re already on overload.

What else can you do? Hook them up with their relatives. Aunts and uncles half a world away? In this day and age of high-speed communications, there’s no excuse for a favorite aunt or uncle not to take on the role of mentor to one of your children. They can call, SKYPE, and email regularly, to get updates of what’s going on in their lives. They can ask the questions you don’t have time or energy to ask. They can shower your children with the affection and attention you can’t give. If they live far away, they can take your children for school vacations or special trips here and there. If they live nearby, they can take your children out on the weekends, or have them to dinner or for sleep-overs. Get the family involved in helping you meet the needs of your children.

Why mentors? They pay attention to each child as an individual. Every child needs someone invested in how his or her life is going. If your time and effort are being funneled into helping your loved one, you just don’t have the extra energy to do this. By pairing each of your children up with a responsible adult, you’re telling them that the family isn’t going it alone. Mentors can lend an ear and a shoulder to cry on.

This is an opportunity to provide good support to your children. Sometimes school work can suffer. The stress of cancer often creates worry, depression, and anxiety for the rest of the family. It’s really hard to concentrate in school when home life is disrupted by the roller-coaster nature of the illness. Mentors can reach out to children when they need help, and once your children know there are other adults available to them, they can share some of the concerns and experiences they are having with someone who is invested in them. Children often feel guilty burdening their parents with what they perceive to be trivial issues. The truth is when cancer strikes a family, most things can pale in comparison.  Cancer can force children to become overly responsible or even to act out. Growing, developing children need adults to help shape and guide them, to offer them the opportunity to be children.

Mentors are never a substitute for parents. Your children will always be your children. That bond is forever. But the people you choose to mentor them are there to bridge the gaps that occur when you run short of time, energy, and opportunity, because your focus is on your loved one with cancer.

But how can mentors help you? Wouldn’t it be nice to feel that you’re not holding up the world all by yourself? By reaching out to people to mentor your children, you’re actually building a resource and support network for yourself. Mentors can often be called on in an emergency, to look after their special charges when you need to get to the hospital in a hurry or you need respite time. Caring for anyone with cancer takes a toll on the caregiver, and parents tend to feel guilty if they want and need to take a little time for themselves. Sometimes it’s nice to get away for a few hours without having to worry. Mentors can help the whole family.

If you’re still thinking that you can’t possibly use mentors, because it’s your responsibility to take care of everyone, consider this. Your situation will be ever-changing according to your loved one’s needs. There may be weeks or months when things are very hairy. In the good times, you won’t need them as much. That’s when you can give back. Invite your children’s mentors to join the family. Have pot luck dinners. Have backyard barbecues. Set up a ball game or a fun fair. Take the time, when life is going well, to embrace all of the people who stood by you. If you ever need them again, they will be there. And if you don’t need them, because the cancer was defeated, you’ll still have some really great people in your life.

For those of you old enough to remember the late, great Gilda Radner, you probably spent many a Saturday night laughing at her many wonderful characters. My all-time favorite was Roseanne Rosannadanna (followed closely by the ever quirky Emily Latella, of “Never mind!” fame).

I knew Gilda had died from ovarian cancer many years ago. Before she died, she fought the good fight, and after her passing, her husband, Gene Wilder, continued the fight. He did a lot of outreach in the years following her death. No doubt many women were helped as a result.

One nice thing about researching what is out there is that I often find wonderful cancer resources. This is one I would like to pass on to you. If you are in the NYC area, check out Gilda’s Club of NYC. The organization creates free “welcoming communities” for people with cancer and their families and friends, to network, to find support, and to join others in workshops, lectures, and other social opportunities. They rely on volunteers and fundraisers to bring all this to the public free of charge:

http://www.gildasclubnyc.org/

How can you not love an organization that gives kids with cancer a special play space, to share with others in the same boat? Who wouldn’t want to go to Noogieland? How can you not love a cancer club that does pot luck dinners and picnics? You just know that it’s all about the people.

Gilda gave us so many wonderful laughs. She clearly loved her characters and their personality quirks. When I look at the website for Gilda’s Club of NYC, it makes me smile. It’s colorful, bright, and over the top, just like she was. I bet she’d be proud of what her husband and her cancer psychotherapist, Joanna Bull, started. It seems to be spreading all across NYC, like a big warm smile, touching a lot of lives. It’s more than just surviving with cancer. It’s about thriving in a community that wraps around you like a big hug. Who wouldn’t love that?

Stopped at a traffic light this afternoon, I spotted a teenage boy waiting for the walk light. His hands tapped out a secret beat only he heard through his ear buds. His feet shuffled side to side. As I watched, I could see him struggle to keep his body from breaking out of its shell. This boy wanted to dance. Of that, I have no doubt. Had he been alone, he probably would have practiced his best moves. But with heavy traffic and so many eyes watching, he held back. He kept himself in check. He stifled that joy that wells up inside people who love to move, to launch their bodies into the air like they can fly. I wanted to say to him, “Go ahead! Get your groove thing on!”

Why do we never see a Gene Kelly singin’ in the rain as he heads down Main Street? Why does a Fred Astaire never skip down the stairs outside City Hall? Most of us have feelings that bubble up inside us on the first warm days of a winter thaw, when the promise of spring is in the air. It’s the promise of what will soon come, and it excites and delights us. And yet, even with a full-blow case of spring fever coursing through our veins, we hold back. We want to skip down that sidewalk and twirl ourselves around. We want to fly. But we stop ourselves. We refuse to grant ourselves permission to dance. What a shame. What a waste.

If tomorrow is promised to no one, shouldn’t we accept these wondrous moments in our lives and string them together like pearls? Shouldn’t we capture the sweetness of the fine days as they flow over us?

I can still remember the shock of the moment when the doctor announced my mother had lung cancer. I can still see that look of dread as that deep ache welled up in her. We knew the news would be bad, but we didn’t think it would be that bad. After the doctor broke the news, he stepped out of the room, to order more tests and treatment. That’s when I told her that no matter what happened, she wouldn’t sit out the rest of her life. We would make the most of the time she had. She would dance.

I kept that promise to her as best I could. On the days when she felt okay, we went out exploring. On the days she felt like something the cat dragged in, we had the memories to carry us through. Sometimes if she was tired, she would initially refuse to go out. Part of it was the sadness of how her life had changed. Part of it was sheer exhaustion. I made a point of being flexible. because I knew that it was more than likely the phone would ring and she would change her mind. She always had fun when we went out. Sometimes it was a trip to the lake or to the river. Sometimes it was lunch in a busy restaurant, where all the waitresses knew her and made a big fuss when she came in. All she really wanted was to feel connected to life. She wanted to put cancer aside and just feel free — to laugh, to linger, to live in the moment and cherish it.

That’s the thing about cancer. You will have good times and bad. There will be mornings it will be hard to get out of bed, hard to convince yourself to even bother trying. But there will also be days when the sky is blue, the air is clear, and you will feel the magic call to you, beckon you. On those days, don’t hold back. Give in. Let your body sway to the music. Get your groove thing on. Don’t think about what other people might think or say. Dance!

I’m not a political person, I’m a people person. I care more about what you do than what you say you do. When the conversation turns to politics, my eyes usually glaze over, my ears start to buzz, and I find myself physically twitching as the debate heats up. I’ve never been good at standing in muck and mire of political rhetoric, and I stink at being politically correct.

The reality is we have a financial crisis in this country that requires us to find new, creative ways to heal and support our sick with fewer dollars. To me, the important thing is to find  cost-effective ways to manage illness while educating and empowering families to give better care.

Watching a news interview of a politician last night, my ears pricked up at the mention of Stage IV colon and liver cancer. Did someone say Stage IV? Now cancer-free? Who is this politician? And what does he have to share about surviving?

I’ve spent a lot of time trying to figure out what helps people live with and manage their cancer. Are there certain life experiences that allow them to push on when most people quit? Is there something about their personalities that help them persevere when others drop out of the race? What kind of man gets through Stage IV colon and liver cancer, and what can he teach us about it?

Herman Cain is very clearly his own man. The son of working class parents, he went to college and became an Atlanta businessman. He’s the former chairman and CEO of Godfather’s Pizza, who took his business experience into the public arena as a columnist and politician. He even served as deputy chairman of the Federal Reserve Bank in Kansas City. Did any of this help him navigate his cancer diagnosis?

I’ve noticed that a lot of people who have organizational and management skills seem to direct their own cancer care. Does being pro-active about cancer treatment change the outcome?

Or is it his passion for challenges that helped him get through his cancer treatment and recovery? Do people who put their passion into surviving cancer fare better than those who see only the darkness of the disease?

He found out about his cancer in 2006 and subsequently had surgery and chemotherapy. In 2011, he says he is cancer-free and is actually thinking about running for president in 2012. Imagine that. A cancer survivor as president. Right there, he’s got my attention — not because of politics, but for his gumption. It takes gumption to not only survive cancer, but to thrive with it. And if this man is actually thinking about running for president, believe me — he’s thriving.

Can we have a Stage IV cancer survivor in the White House next time around? I don’t know. What I do know is this — it’s going to be a really interesting campaign year. This is a man who speaks his mind, who gets in there and puts it on the table. As a businessman, he worried about supporting his employees while building his company. As a political commentator, he no doubt has his own views on health care reform. But as a cancer survivor, can he deliver some of the secrets of managing and surviving the disease? I, for one, will be watching.

Why is it important for cancer patients to prepare for the worst and hope for the best? It’s all about having options.

When you consider the possibility that cancer may take a greater hold on your life, you acknowledge that you need to get your ducks in a row. You’re pulling your head out of the sand and admitting that you have cancer. This means you have the chance to plan your strategies.

Planning anything when you have cancer is a process. You are looking at where you go from here. What do you want your life to be, given the confines of cancer?

It’s really about options. Cancer may have dug in and planted itself in your life, but you don’t need to surrender all control to the disease. Knowing what your choices are means learning how to manage your cancer through different stages.

Some people are able to survive their cancer for decades, because they understand it’s about managing the disease. They look at where they are, where they will be during cancer treatment, and where they want to be when cancer treatment ends.

Sometimes people are afraid to consider the possibility that cancer will become too great a foe. But it can actually be very helpful to know what those options are, should your life come to that point in time.

When you organize your life to accommodate the needs that arise from your cancer, you’re not giving in to the disease. You’re taking charge of how it affects you. You’re choosing how you want to live with cancer. Do you want quality of life or quantity of life? This is a personal decision that each cancer patient must make for himself or herself. If you want quality of life, you want to be as comfortable as possible, and often that means that you choose to stop debilitating treatments when cancer has spread. If you want quantity of life, you are willing to do whatever it takes to live every day you can live, even if it means you endure difficult cancer treatments.

By actually making a conscious decision about what you want and how you want it to be, you are choosing the life you want to live with cancer. In order to do that, you need to recognize where you are in cancer treatment, what your options are, and what the likely outcome will be. And you need to know that if you decide that quality of life is more important than quantity of life, palliative care specialists can help you stay as comfortable and active as possible, so that you can enjoy the life you have.

This isn’t about dying with cancer. It’s about living with it. It’s your life. Enjoy it. Embrace it. But above all, choose it. Don’t let life just happen to you. Make life work for you.

Talk about a great idea! Macmillan Cancer Support is sponsoring CANCERTALK WEEK in the UK. Starting February 15th, folks are invited to share their thoughts. Using Twitter and Facebook, this cancer support group is going to get the ball rolling using a “word of the day”. The funniest responses will be shared. Cattywampus? Bumfuzzle? I’m pretty sure a lot of cancer patients will find creative ways to use these words:
http://www.facebook.com/#!/macmillancancer

On the surface, it seems rather lighthearted and fun, contrary to the seriousness of cancer and its effects on patients and their families. But the truth is that conversation shouldn’t always be heavy and dark. Cancer is a disease, but sometimes the journey is greater than the negative effects of cancer.

It’s important to look at cancer from many directions, even to have a chance to laugh about some of the more absurd experiences that arise during treatment. Laughter helps us cope. It also helps us bond. Having an opportunity to share with the entire cancer community is a good thing. Getting patients and their families to open up and speak their minds is more than just a chance to vent frustrations about cancer as a disease. It’s a chance for the world to learn more about how cancer patients and their families experience the disease. What works? What doesn’t work? What kind of support is helpful? What kind isn’t? What hurts? What helps?

Wherever you are, what ever your situation, if you have cancer or you love someone who does, why not check out the responses at Macmillan? Why not see if you can relate to the way UK cancer patients experience this disease?

If you’re hesitant to take the plunge, remember this. They are posting the funniest answers. If you’ve ever felt bumfuzzled by a doctor’s explanation of treatment, or you’ve ever found yourself cattywampused as you emerge from the dressing room after a medical exam, you owe it to yourself to fit a good chuckle into your day.

Speaking of cattywampused, my mom experienced this during radiation treatments. We would arrive for the appointments a little early. I wheeled her into the cancer center, big oxygen tank and purse in her lap. We navigated the long hallway maze to Radiology, where I would grab her a gown and take her to the dressing room. Once she was safely ensconced in the tiny cubicle, wheelchair and tank waiting outside, I would help her get dressed. She was so frail at that point in time, and the new dependence was very hard for her to accept. The only way I could cheer her up was to hum a little “stripper” tune as I removed each article of clothing. If I could get her laughing, I knew she’d be okay.

But the biggest cattywampus experience was the day my mom had her first treatment. She had unbuttoned her pants in anticipation of removing them, but the radiology technician told her it wasn’t necessary. Unfortunately, my mom forgot to re-button her pants. Wheeled into the treatment room, she was asked to stand up by Carl, the handsome, towering giant of a radiology student. Stand up, she did. The pants went down with the last remnants of my mother’s dignity. Unable to bend over to pick them up, she looked up at Carl and asked for a little help. Always the gentleman, Carl obliged. After that, he and my mother became good buddies. We learned about his mom, who worked in the UK and in Jamaica as a midwife, and whenever she came to the States for a visit, my mother was thrilled for Carl. He used to spot my mother across the waiting room when she came in for treatment, and he made a point of surprising her by popping up at her side unexpectedly. The world needs more Carls. He made cancer treatment more bearable for my mother.

FOR MORE INFORMATION, CHECK OUT MACMILLAN’S CANCERTALK WEEK PAGE ON FACEBOOK:
http://www.facebook.com/#!/event.php?eid=150785128311655

If a tree falls in the forest, and we are not there to witness it, does it make a sound?
What if a voice calls out from the wilderness that is cancer? Can we hear that?

I am often curious about my followers. Today, I read the tweets of one. Donna M., down in Florida, puts out little snippets of her life. What can I tell about her from these brief messages to the world? What can I know about her?

I know she is struggling with pain, with chemotherapy. I know it’s been tough for her. But I also know she is filled with a strong spirit. She’s trying to get through this battle without losing herself. She’s trying hard to rise above all those obstacles that cancer puts in her way.

I know there are days it’s impossible for her to get out of bed. And yet, she soldiers on. She gives it her best shot. Some days, she’s chilled to the bone and it’s hard to feel warm. This has been a tough winter for the South. Some days, she’s stuck in the waiting room at the doctor’s office for hours. We can all certainly relate to that, can’t we? I know Donna is a sports fan, keen on football and basketball (Miami Heat). I also know she treasures the good days when she can get outside and enjoy it.

In some ways, Donna M.’s tweets are a real learning tool. What role does spirit play in cancer treatment? So clearly, she is reaching out to the great, big universe, seeking peace, comfort, and kindness. In the midst of her own ordeal, she even offers a prayer for the people of Egypt.

Donna, I will probably never meet you, but thank you for reminding me of the real face of cancer. It’s not glamorous or glorious, this battle you fight. The days are not easy or kind. I will think of you from now on because I heard your voice cross the miles. You are real. You exist. And now other people know about you. We will all think of you, Donna M. in Florida. We will keep you in our prayers and wish you the best. When you face those dark nights and wonder how you can make it to the dawn, know this. The cancer community is there for you. Across the world, there are people who understand your struggle and we root for you, just like you root for the Miami Heat. Hang in there. Hold onto the good days, the good friends, the good memories. Wishing you blue skies, nothing but blue skies.

Every once in a while, it’s refreshing to find an individual with passion and compassion, who isn’t directly impacted by cancer, but who feels the need within to connect with the cancer community in a meaningful way.


Jill Trotta Calloway’s daughter, Katie, lost two friends to childhood cancer before she finished the fifth grade. How do you explain this kind of tragedy to a child? For Jill, childhood cancer was “the elephant in the room”, the subject that is hushed up and whispered about, but never really addressed. The limited number of children’s books on the subject frustrated Jill as a parent who wanted to help her child understand what had happened to these two little girls.


As a former social worker, Jill felt compelled to provide relevant information to children on childhood cancer. When you know from experience that education and support can make a difference, and you come across situations that expose these voids, it often provides the catalyst to propel you forward. In Jill’s case, “There’s an Elephant in My Room” was the result:
http://www.jilltrottacalloway.com/index.html


But Jill didn’t just write a book about childhood cancer. She donates all proceeds from the sale of the book to Striving for More Than a Cure:
http://www.striving4more.org/


Cancer touches so many lives. Families are often battered and beleaguered by its toll. By bringing understanding and compassion to those affected by childhood cancer and their expanded social circles, Jill Trotta Calloway offers others the chance to connect in a meaningful way.  Bravo!