Author: sarambarton

Silence Is Not Golden When a Friend’s Cancer Returns

Post author By sarambarton
Post date July 7, 2014

Is there anything sadder than hearing that someone’s cancer has returned? Yes. It’s hearing that family and friends pulled away at a time when support for someone you care about is most critical.

A young woman — delightful, sweet, with the infectious optimism of Pollyanna in an adult body, recently announced her cancer is back, bigger and meaner than ever. She’s someone who has celebrated milestones, shared her thoughts and feelings on a number of subjects, and encouraged everyone to make the world a better place to be. There’s not a mean bone in her body, but there is cancer.

My first thought on hearing the news was, “^%$#@! This is so unfair!” After all, she has young kids who need her. She has a husband and a history of overcoming obstacles. She has family and friends who adore her. She has so many interrupted hopes and dreams she put on hold while tackling this disease. Now what happens?

Throughout the July 4th weekend, her plight stayed on my mind. Why? Because I wished I had the power to do something positive to make a difference in her life. Too many good people are swept up in the cancer struggle; it saddens me when the journey goes from uphill to downhill in the blink of an eye.

It means shifting gears for me, emotionally and physically. It means I must accept that whatever course her cancer takes. I will figure out a way to let her know she matters, even when I feel awkward and uncomfortable, even when my words seem inadequate.

But more importantly, her news reminded me of my mother’s struggle — not so much over the disease and treatment, but the reactions of people she thought cared about her. She found out the hard way that all her efforts over the years to support friends and family didn’t amount to a hill of beans when she most needed a kind word, a cheerful thought, or even just a friendly shoulder to cry on.

Was it because people didn’t care? I don’t think so. I think it’s because we have this reluctance as human beings to admit we are uncomfortable when someone is experiencing serious illness. We want to play ostrich and bury our heads in the sand until the moment, or the person, passes. But that’s all about us, isn’t it? It’s about making ourselves feel, or not feel, for someone we care about.

Real support for cancer patients means accepting that things don’t always go well during cancer management. Years ago, when I worked with hospitalized children, I often saw the same faces come through the doors of the pediatric ward over and over again. Back then, it was normal for kids with most kinds of cancer to die within months — there was no time for hope to blossom, nor a cure to magically appear. It was what it was for decades, until slowly and surely, doctors began to understand the complexity of the different types of cancer and learned to impact its control on the body.

Nowadays, more people manage their disease over time. The years go on while the cancer remains in remission or occasionally pop up, only to be knocked down again by this new treatment or that one. People get back to living their lives, until the day that horrible blow fells them once more and the prognosis is not optimistic. It can feel like failure when cancer comes back. It means there is something we have little control over in our lives, a beast that can ruin everything.

Maybe that fear of feeling helpless is what drives many of us to stay silent, to ignore the bad news, to pull away. Maybe we fear being emotionally overwhelmed by the reality that someone we love is in dire need and we don’t have the tools to rebuild that lovely, lovely life.

Maybe we need to accept that this isn’t about us at all. It’s about someone who matters. What does she need from us that we can give?

Even if we can’t make someone better, we can make her feel better. My mother was lonely after many of her friends, and even some relatives, pulled away from her. She did, however, receive glorious support from very loyal people. There were phone calls just to say hi, to let my mother talk about what mattered to her. There were notes to say, “Remember that time we went….” There were photographs that arrived in the mail, potted plants that were delivered to the door, and even people who just volunteered to sit with my mother. The brave ones in her circle reached out and made the effort, not because they were brave, but because they put her needs ahead of their own need for comfort. Letting go of our own fears and emotional pain is the way to become brave. We’re too busy thinking about someone else’s needs to think about our own desire to protect our hearts from sorrow.

We can’t make someone better, but we can always figure out a way to make her feel better. Sometimes it’s just knowing that she matters to us as a human being. We are still aware, and grateful, she’s with us. We are still remembering the way she made us think about this or laugh about that. We want the best for her because she’s been a ray of sunshine on a drizzly day. It’s really all about her.

Personal power isn’t about fixing people. Personal power isn’t something we wield like a sword and then we move on to the next triumph. It’s about connecting with the human heart and saying, “I feel small because I can’t do much, but I want you to know I care.”

The real power we hold as human beings isn’t in the ability to slay dragons. It is in the ability to love, whether it’s our immediate families or our extended circles. We love and that is the unification of the human experience, the coming together of the community in a positive way. We should celebrate our ability to care, even when our hearts are breaking for someone we love. We should take that step and reach out that hand. No one with cancer should ever look to us and find us hiding in the darkness, running away because we’re scared. Hearts are far more resilient than we know, but only when they are filled with love, hope, faith, and charity.

Garth Brooks sang a lovely song that succinctly sums up my feelings about embracing life:

“And now I’m glad I didn’t know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain
But I’d have had to miss the dance….”

From “The Dance” by Tony Arata

What Does a Cancer Diagnosis Feel Like?

Post author By sarambarton
Post date June 20, 2014

I have a very special post to share with cancer patients and their loved ones. The raw emotions and roller coaster ride of a newly diagnosed cancer patient is rarely demonstrated as well as it is here.

I opened an email from a hospice friend not long ago, someone I hadn’t corresponded with in a while, and got the shock of my life. But it was nothing compared to what she was going through.

Long after I read her letter, her words stayed with me. I couldn’t shake them. My first thought was to contact her and tell her how much she is in my thoughts, my prayers. But my second? I wanted to give her a chance to share her story, not only to give her a voice as a cancer patient, but also because I believe other people out there will benefit from her experience.

Before you read on, let me tell you that I have already heard further from her. Melody Webster’s sense of humor and determination to rise above are still strong. I asked her if she would consider checking back in, during treatment and after. She is very interested in doing that, so expect to hear from her again on my blog. And now, here is what she wrote:

I Have to Get This Off My Chest — Letter from Melody Webster

I found it necessary to write this so that years from now I could recall how I felt when I was faced with hearing I could have a very serious illness. I have worked in Hospice for some time now and meet many families that are faced with the reality of having a life threatening disease. Always thinking I knew how they were feeling and what they were going through couldnʼt have been any further from the truth. I am lucky, I only had to prepare to hear the worst, these families are living the reality of knowing their final outcome.

My heart goes out to all of them……..

We see our bodies every day. We notice every new line and wrinkle on our faces as we brush our teeth and put our makeup on. We see more and more grey hair as some of us try to hide them with color. We see the little new dimple of fat that may appears on our thighs. We touch the little pouch of stomach that may have appeared on our tummies. Some of us pull the falling face up towards our ears and think wow I could looks 10 years younger by having a little tuck behind my ears. We brush our teeth with whitening hoping to have the great smile we did when we went to the prom. We wear push up bras or athletic bras hoping to get a little perkiness in our girls.

Have you looked at your boobies lately? Do they look the same as they always did? My boobies started to look different over a year or so ago. Both my nipples were smashed in when I took my supportive bras off at the end of the day. I encouraged them to come out by pulling and twisting them. My thought was they were just a little tired of the effort to look young and smug. I thought that like everything else on my body they were loosing their elasticity and just wanted to take a break. No more having to put my arms in front of my chest when picking up a pizza in the frozen food section. Those little nipples kept themselves warm and snug by taking shelter in the comfort of my now bouncy, drooping boobs. I succumbed to the fact that my body wasn’t what it used to be and some things cannot be changed without a huge bankroll given to a plastic surgeon. I decided then that I loved my husband; he loved me no matter what I look like as long as I always applied a little lipstick before we went to the store together.

I paid attention to my yearly blood work that always came back good, not perfect but “great for a woman of my age”. I kept up with my yearly mammograms. Asked the tech if she had seen many women with a shy nipple and she assured me she has seen many. Believed it was again just a normal sign of AGING. I forgot to mention that my nipples were like tortoises. One always finally came out of its shell the other one remained hiding inside refusing to come out even when coaxed by manipulations Iʼm not going to mention.. The refusal of this stubborn nipple caused me a lot of anguish. I thought I had more control over my body parts, maybe not my bladder but other parts.

I spent many hours on the Internet searching for shy nipple syndrome. Everything that came up was very frightening….REALLY! Everything from Inflammatory Breast Disease, all sorts of other breast cancers, the list went on and on. Nipples that had never shown their smiley faces were ok but ones that started hiding later in life were a REAL warning sign that something isn’t right. I became obsessed with this nipple. I asked practically everyone I didn’t know if they had one. I was too embarrassed to ask people I know about my shy nipple for fear they would think I’m crazy.

Finally it got to the point that after every search on the internet I would clear my browsing history…. didnʼt want anyone to know that I was obsessed by this, especially since everyone was telling me that this was perfectly normal.

One day I told myself there is more to life than worrying about a shy nipple…..take action and resolve it now! Get the answers to all the questions so you can return to a normal life. I even considered having this nipple decorated with some sort of nipple ring to keep it out in the open.

I finally decided to take the bull by the horns or in this case take the nipple by the very small tip showing and demand someone explore fully why this baby wouldn’t stay out. I made an appointment with my primary care doctor. She looked at all my past mammograms and confirmed that they were all negative. Upon her doing a breast exam she notice that the breast with the shy nipple felt really dense and it was hard for her to determine if there were any significant lumps or abnormalities. She said since I had been worrying about this nipple thing it may be appropriate to have an MRI. Great I’m making progress even at the embarrassment of shy nipple. MRI scheduled….in a couple of days I would have some answers. Yeah!

Got a call from my doctor a few days after the MRI telling me they saw a couple of masses in my shy nipple breast along with an enlarged lymph node. Recommendation was to have a biopsy. Wow — reality hitting me.

Was I right all along that something very serious was going on and that my shy nipple was trying to catch the attention of everyone and no one way listening to the cry of help from this little precious piece of skin? Concerned about what this all meant I asked my doctor what the heck does this suggest. Her response was expect to hear the “C” word. Yikes is this really what I wanted to find out? Maybe I should go hide with my shy nipple. She went on to tell me that it was probably stage 3 cancer and that surgery, radiation and chemo were to be expected. “NO! ARE YOU KIDDING ME?” I thought. I asked her what about my shy nipple?

She said the nipple wasn’t involved as shown by the MRI.

She would set up the appointment with a breast surgeon so that it would save time. It would be right after the biopsies. I was really worried that maybe I had waited too long. Was I beyond early stage curable cancer? Had it spread to other areas? Was I so keyed into my vanity? Had I pulled the face skin back to my ears too many times to look ten years younger when I should have paid more attention to my shy nipple waving her arms as if saying throw me a life jacket I need help and I need it now! So many thoughts and not enough hours in the day to filter all the information.

I lost a couple of lbs over the past month or two in hopes of wearing a new bathing suite to the pool with my grandchildren this summer. OMG maybe I need those lbs. now because of all the surgery and treatment I’m going to have. My head is swirling. Iʼm too young for this. I need to take an Ativan to make it through the day and wine and Ativan to sleep only a few hours at night.

How will I make it over the next few days before the biopsy? My head is swimming with negativism. Everyone says to be positive for a good outcome. Positive…. Iʼm ready to pay the funeral director now in fear that I will spend our entire retirement fund at the casino to blot all this out. God please help me make it to the biopsy without having a heart attract or stroke………..

As many women before me have done I made it to the biopsy with fear in my heart and a sick feeling in my stomach. Its funny what fear can do to the body. All “systems go” if you know what I mean. When I woke up on the morning of the biopsy I felt pretty good. The couple glasses of wine and the melatonin before bed brought the rest I yearned for before my big day. I was fine till I walked through the door of the building that would inflict long needles in my breast. I squirmed just plucking one little hair I had noticed growing from my nipple in the past. Now several needles would be inserted deep and they told me I could even watch the whole procedure on the screen. Wow are you kidding me. I still remember the scene from Psycho in the shower. I never thought I would want to look at sharp objects going into a body again especially mine.

Well as it turns out there was very little discomfort from the needle that deadens the feeling in the breast but I thought since menopause I havenʼt had much feeling in that area anyway. Everyone at the cancer center was great. They must pay them a lot of money to create such a calm and peaceful setting. It was like a dream where you didnʼt want to wake up because everything and everybody was treating you so kind and so nurturing. I realized how selfish I was to think that I was the only one ever experiencing this. Itʼs not all about me I thought I am one of millions of women who have gone through this.

P.S. Infused some humor because that is how I handle life stresses.

Going home I felt numb not just in my boob but my whole body was in a state of shock. Things like this only happen to others. Then my mind starts thinking about all the families Iʼve met through hospice and I have just about given up hope for cure before the results even came back. At this point Iʼm just tired of ME. I think I went through all the stages of grief in the period of 2 weeks. I had to wait from Thursday till the next Tuesday to find out the results. Was it a piece of cake….not really it was several pieces of cake and a keg. My darling husband must have sent out an SOS to our relatives because my daughter-in-law and oldest granddaughter drove from Calif. to Sahuarita to spend Easter with us. Leaving the 3 other grandchildren and husband home alone on Easter. Wow did I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

Then came the day of reckoning … like the jury had reached a decision and I was awaiting my sentence. I was totally amazed at how hearing that I did have a cancerous mass but it was slow growing and I would receive hormone treatment to shrink it before hopefully only a lumpectomy could raise my spirits.

All the prayers that friends said for me had been answered. I was afraid that God no longer listened to my prayers since I have used all of mine up at the casino praying for a royal flush.

Smack me in the face — I have had to come face to face with my mortality and it was a scary thing to do. I send my most deepest respect and admiration to those who have had to go through what I have experienced and did a much more honorable job of doing it than I did.

God bless all you women who have fought the cancer battle. I canʼt say Iʼve walked in your shoes — maybe just in your flip flops.

Love to all for your support.

That’s it for Melody’s letter. She’s begun treatment and is on her way as a cancer survivor. I’m looking forward to hearing about her progress, and when she shares her thoughts on the road to recovery, I will post them here. And again, Melody, thank you for having the courage and gumption to speak up, to speak out, and to share your experience. We’re grateful.

cancer treatment family caregiver family reunion

Don’t Give Cancer the Power to Stop the Family Reunion

Post author By sarambarton
Post date May 31, 2014

It started some eighty years ago at the shore. A family got together for summer fun when they rented a cottage. Over time, the parents built a home with a big backyard, where everyone gathered. Children grew up. Some married and had kids of their own, and eventually even grandkids. Some didn’t. Some changed jobs and moved around. Some kept the same jobs over the years and put down roots. Summers drew everyone back together for cookouts in the backyard at the fireplace built by cousins, stone by stone.

My earliest memories of my grandparents, aunts, uncles, and cousins are all there. To this day, that scent of raspberry, mingled with confectioner’s sugar on powdered jelly donuts evokes the heartfelt warmth of happy family gatherings, thanks to the uncle who used to bring a brown box from the bakery every time he joined us on a summer weekend. There were group walks to the point, ice cream cones with sprinkles, lots of laughter, and relatives galore. This was the one place we all saw each other, our common ground in a rapidly changing world.

In later years, as the original cousins got on with their lives and people moved again and again, we no longer saw each other regularly. That all changed when Uncle James turned 75. His family planned a big birthday bash and invited everyone to come. What a wonderful day that was. There might have been a little sprinkle or two of rain, but I remember pine trees and people, and above all else, laughter.

The following year, my mother suggested we all gather again, this time at my parents’ home, for a reunion. This became the annual family gathering. For more than thirty years, the relatives have come to swap stories and share food.

When my mother had a heart attack several years ago, it was a shock. Despite all the previous visits to the pulmonologist for treatment of the increasing breathing difficulties, no actual diagnosis was made. That nagging shadow on her scan that signaled there was something ugly growing on the horizon, but what was it? That something was lung cancer, thanks to that genetic glitch that seems to run in the family.

My mother was devastated that over the course of several years, her cancer grew unchecked. As is the case with many cancer patients in similar straits, she was angry that it wasn’t discovered until it was inoperable. Chemotherapy, radiation, and supplemental oxygen extended her life. And with that time, she was determined to continue the tradition of the family reunion.

By then, I was my mother’s full-time caregiver, while my father continued to work. I took her to and from her medical appointments, coordinated her medications and therapies, and most of all, took on the task of helping her to live as full a life as was possible under the circumstances.

One of her most adamant wishes was that the family reunion continue. It was no small task. In a normal year, it takes me approximately forty hours over a month or so to get everything ready for the relatives — the equivalent of a full work week. As a caregiver, I had to squeeze those hours into my already challenging schedule, one that included constant trips to the hospital and medical emergencies. My mother insisted on knowing every detail of the reunion plan, determined to be involved with every decision that needed to be made, from the RSVP tally to the number of hamburgers and hot dogs we would need to feed the crowd to the coffee we would serve with dessert. She insisted on hanging onto the shopping cart and perusing the aisles of stores to gather items for the party, even as her energy flagged and her oxygen tank needed changing.

Some caregivers might have insisted on taking over, pushing the cancer patient aside, in order to get the job done quickly and efficiently. After all, when you are already caring full-time for a loved one, there’s little time for anything else. But it’s important to understand the devastating impact of cancer on “normal life”. Those chores, errands, and tasks most of us hate can sometimes be the perfect therapy for cancer patients who are terrified of what is to come. That great uncertainty that comes with a cancer diagnosis is hard for the mind to overcome; the more a cancer patient is able to stay in the game, the better.

For my mother, it was important to let her still be in charge, even through the fog of cancer treatment. After all, she and my father had invited the family to gather in their yard for more than twenty years at that point. It was their “baby”, their way of celebrating the extended family. The big question was how to make that happen even during cancer treatment.

I once had a profound conversation with a cancer friend/survivor/advocate that brought that point home to me. She said her siblings began to count her out of family discussions about the future because they didn’t believe she had one. Imagine how that makes a cancer patient undergoing treatment feel. It’s like the kiss of death. You’re already assuming the fat lady has sung her last aria. (By the way, that very same cancer friend/survivor/advocate is still going strong, still smart, and still more than ready to set the record straight. I’m so glad I know her.)

Another very valuable lesson I learned from my mother was that even the simple act of making decisions about the reunion kept her feeling positive that she still had something to give to the world. She could still bring people together to celebrate what matters in life — the family. For someone whose health is precarious, the sense of weakness and helplessness can be offset by positive successes. For my mother, the reunion proved to be an achievement of which she was proud, a joint effort with my father.

Just pause for a moment and think about this. She was in active cancer treatment. She was easily fatigued and vulnerable to hideous side effects. Most people would think that the best course of action would be to avoid the stress of the reunion, to pull the drapes and shut the door. After all, it’s too much for a cancer patient to handle, isn’t it?

To this day, I still remember my mother sitting on the patio, watching the reunion tent go up. She wore one of the many chemo caps I made for her, her oxygen tank at her side, and in those moments, she was delighted by what she saw. Tables and chairs came out of the barn and went under the big top. Tablecloths were spread out and paper plates, cups, and plastic forks, spoons, and knives were set down. My father made his usual run to the ice house for huge blocks of ice for the soda, beer, and meat coolers.

Chemotherapy can be a real beast, but my mother worked with her oncologist to make sure that her treatment allowed her to be as functional as possible. They scheduled her medication so that she would be at her best on the day the extended family arrived. Unfortunately, she was laid low with a sudden bout of intestinal upset that first year with lung cancer. Much of the day was spent in bed. I checked on her frequently as the guests mingled outside. Far from being distraught, my mother was surprisingly calm and content. Even as she felt “crummy” physically, she was happy that she managed to make one more reunion happen. To her, that was her crowning achievement, something she shared with my father. In this day and age of separate lives, they brought us all together for a day, to remember our roots.

On that second reunion after her lung cancer diagnosis, my mother was feeling much better. I still can see her sitting on the patio, with people gathered around her. Still tethered to her oxygen tank, she had a ball catching up with everyone. Despite the fact that she couldn’t walk far, the constant stream of people coming and going, pulling up a chair, put her right back in the action. For that moment, cancer took a back seat. Mama was once again in charge of her own life and there was much laughter.

We occasionally forget over time what family means to us. We stop discovering and rediscovering ourselves and each other. We presume to know what other people are thinking and feeling and don’t bother to ask. Family reunions are an opportunity to connect and reconnect with relatives we may only see once a year. For that one day, when we take advantage of the moments, we can recall those who are no longer with us, not by forgetting, but by remembering. We can watch children grow into adults. We can put aside opposing politics and philosophies to find what we have in common. On that one day, we’re all people united by the generations that came before us.

Even now, my father still looks forward to bringing the family together for that one day a year. He still spends hours tending to the yard and the pool in anticipation of the relatives’ arrival. He doesn’t do it to be a super star. He does it because he remembers what he got out of those days with his own parents, siblings, and cousins at the shore so long ago. He does it because he remembers those people no longer with us. It’s his way of preserving family.

Someone recently suggested we end the tradition. Thirty years is long enough. It’s time to move on. Not all of us feel that way. There are still those among us who want to honor that legacy my mother and father gave to us, the chance to get together for one day out of the year and remember we are connected. Time passes. People pass. But one thing we should never lose sight of is the power of family. Don’t let cancer steal that from you and your loved ones. Work around the obstacles and come together, with hearts that seek laughter and love. While the storm clouds accumulate on the horizon, gather under the canopy of the family tent and celebrate what is here and now, because the memories you form today are the treasures you keep in your heart tomorrow, come what may.

cancer fiction cancer management cancer media cancer survivor

Why Is Cancer Always the Drama Queen?

Post author By sarambarton
Post date February 22, 2014

It’s probably happened to you ten or twenty times over the last decade. You’ve entered the realm of fictional cancer and cancer survival through media. You’ve witnessed the hero or heroine battling cancer from your perch in the fictional trenches. It’s on the big screen in your local movie theater. It’s in the TV special that has you glued to your sofa. It’s in that bestseller you bought at the bookstore. It’s in that short story in your favorite magazine. By the time you finish living through the cancer experience vicariously with the main character, you’re emotionally exhausted.

But here are two questions for you. Why do fictional cancer tales always seem to stick with the same script? And why is cancer always the star of the show?

Oh, I understand all about the perils of cancer management. And you won’t ever find me dismissing the cancer experience as “minor” or “a blip on the radar”. But why do we always seem to put cancer up on a pedestal in fiction, whether it’s movies, TV, books, or short stories? Does the plot always have to be about the disease? Frankly, I’m far more interested in the people, real and fictional, who survive the experience.

Some of the funniest, sweetest, feistiest, smartest, most compassionate people I know in the real world of cancer survivors would make fabulous characters in amazing tales. It’s not because they have cancer, but because of who they are as human beings.

These people have lives beyond their disease. They are lawyers who happen to be talented musicians, journalists who live to box, social media experts who love their dogs…mothers and fathers, sisters and brothers, friends and neighbors who nurture fellow cancer survivors with some amazing outreach programs, — ordinary people who do some very ordinary things, even while they navigate cancer experiences as varied and as unique as they are.

If you were lucky enough to meet them, as I have been, the one thing you would not take away with you is the sense that life is a constant edge-of-your-seat drama. These are not hysterical, desperate people living terror-filled lives. Sure, it happens sometimes that things go wrong and inevitably another beautiful soul loses the battle. But for the most part, the cancer survivors I know are not afraid to speak up, to speak out, to take charge of their world. They make the effort to infuse their lives with laughter and love.

How I wish we could capture that spirit, that wonderful sizzle of spunk that often drives so many of these cancer survivors to live their lives out loud. How many times have I heard them say, “(BLEEP) cancer! I’m going to do what I’m going to do despite it! I’m going for it!” And that’s where the real stories of cancer can be found. Because so many choose to get around the obstacles cancer creates and achieve amazing things. So, why can’t our fictional heroes do the same?

One of the saddest personal stories I ever read was from a real breast cancer patient, whose treatment totally disrupted her marriage to a man she thought would be there forever. Like watching a train wreck in slow motion, I followed her tale and thought, “If only this doofus had some idea of what to expect from his wife’s cancer situation. If only he had heroes who had walked in his shoes and successfully managed to learn what to do and what not to do.”

To me, movies, television, and stories are the perfect place for us to find inspiration on how to live with cancer, but if we only see the terrifying tales of gloom and doom, we become conditioned to expect cancer to be a death sentence, a downer, a disaster. The truth is that for every life destroyed by cancer, there are many more that were saved by treatments. Shouldn’t our fictional characters share those experiences?

I was recently doing some research for a project I am working on as a mystery writer and I stumbled across something curious. Many of the writers who create cozy mysteries announce in their biographies that they are cancer survivors. Why is this? I have a theory. Cozy mysteries are all about people. We don’t like lots of blood and gore in our stories. We don’t like horrid characters who give us nightmares and do vicious things to our fellow human beings. In some ways, the cozy mystery genre is the perfect place to find comfort and happy endings for weary cancer survivors. Maybe that’s what attracts writers and readers to the genre. We want to believe that life can be good. We need to believe it, because we will take that inspiration and use it in our own lives, when we or our loved ones are diagnosed with cancer.

But it’s not only short stories and books that make a great platform for characters with cancer. Television and movies would be well served to utilize them. Why? Think about the people you know who have cancer. Think about the often profound changes they have experienced as they go through life after diagnosis. The truth is cancer changes everything. It’s that unexpected wake-up call no one wants to get, and yet when it comes, it often seems to shake us up in ways that are often unpredictable and unexpected. It’s not the cancer that makes people amazing. It’s what they do in spite of the cancer.

As for interesting characters, I can attest to the fact that many of the cancer survivors I have had the pleasure of meeting are inspirational and memorable. If you can keep your sense of humor after a cancer diagnosis, if you can maintain a sense of hope in the face of such terrifying news, if you can carry on despite the uncertainty of having too many lemons and not enough sugar to make lemonade, you’re probably going to have some great throw-away lines for any script.

The truth is cancer survivors are people who learn to live with the disease. They learn to manage it over time, to know when it’s time to get a “tune-up”, and even to expect that it might return at some point down the road. But as more and more cancer survivors go through multiple bouts of the disease and live to tell about it, our fictional tales should reflect this fact.

My hope is that one day, authors, publishers, scriptwriters, producers, and directors will come to understand that cancer shouldn’t always be the drama queen of a story. Sometimes cancer can be the fictional challenge that teaches a tenacious survivor how to get past even bigger obstacles. Or, better still, we can begin to treat cancer as the occasional footnote in our lives. For those whose cancer is caught quickly and wrestled to the ground, we might find fictional characters who use perspective and common sense to put cancer in its place.

Oddly enough, I think if William Shakespeare lived today, he would have done just that. Cancer would have been just one more challenge that his characters faced, some bravely, some cowardly, some with humor, but never without something interesting to share. I long for the day when cancer is not the lead player on the stage, but merely an act or two in a lengthy production:

All the world’s a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,
His acts being seven ages. At first, the infant,
Mewling and puking in the nurse’s arms.
And then the whining school-boy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress’ eyebrow. Then a soldier,
Full of strange oaths and bearded like the pard,
Jealous in honour, sudden and quick in quarrel,
Seeking the bubble reputation
Even in the cannon’s mouth. And then the justice,
In fair round belly with good capon lined,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slipper’d pantaloon,
With spectacles on nose and pouch on side,
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.

From “As You Like It”, monologue of Jaques, Act II, Scene VII

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No Such Thing as a Good Kind of Cancer

Post author By sarambarton
Post date February 7, 2014

Recently, there was great controversy stirred up by a UK pancreatic cancer charity, which launched a promotional campaign in which people spoke of wishing they had a different kind of cancer, because their outcome would be better. I was dismayed. Not only is this a misguided effort, it’s downright dangerous. It leaves viewers with the idea that there is some “good cancer” out there, and that if one gets it, “no problem”.

Such an unfortunate campaign sadly misinforms the public about the real face of cancer. In all my years, I’ve never known anyone to get a “good kind of cancer”. Cancer is cancer — a generic name for thousands of different kinds of biological reactions in the body that often attack organs and blood, creating tumors, autoimmune issues, and other maddening, life-changing, life-challenging issues.

In all my decades of life, I’ve seen so many things happen. People who had good prognoses died and people who had bad prognoses lived. You can’t always predict how cancer will affect the body, and the idea that having a “good cancer” means you will survive is just wrong.

Don’t believe me? Answer this question. Which vehicle would you prefer to be struck down in the street by at ninety miles an hour:

A. a 7-ton double-decker bus
B. a 2-ton Mercedes Benz
C. a half-ton Fiat 500

Did you say the tiny, “cute” little Fiat? Did you perceive that because of its public aura, its marketing campaign, its ability to navigate through tight spots that you would be safer being struck by one? At ninety miles an hour, does it really matter what type of vehicle strikes you? I think not. Impact on the body is a critical factor in a traffic accident. The same is true of cancer’s impact on the body. How much cancer is there? That’s what helps to determine outcome. If doctors have to treat a body riddled with cancer, the chances of survival are about equal to being hit by any type of motor vehicle at ninety miles an hour.

Here’s another question:

If you fell overboard without a life jacket, where would you have the best chance of surviving:

A. In the middle of the Atlantic Ocean
B. In the middle of Lake Superior
C. In the middle of the Amazon River

Three different bodies of water. Three different types of challenges and risks. You might think that the ocean is the most dangerous. After all, if there are sharks and other predators in the water, and the waves are rough, your survivability rate will be sharply curtailed. We know that the Amazon has piranhas, those nasty little fish that work themselves into a feeding frenzy, not to mention black caimans, those alligator relatives, and any number of other critters, so that’s probably not a great option. If you said Lake Superior, did you consider things like the shipping traffic? Or the ongoing risk of hypothermia? Or the dangerous rip currents?

Whether you’re about to be struck by a vehicle going ninety miles an hour or you’re dropped into the middle of a huge body of treacherous water, the end result is the same. It probably won’t end well.

The same is true for any advanced cancer. In this past two weeks, I have read the posts by friends who lamented the passing of this person and that person. They were all individuals with different kinds of cancer and they died.

I have also read wonderful things by people who survived their battles. Everywhere I go, in public, online, people share their stories with me. Never have I found that one kind of cancer is better than another when it comes to survivability. What matters is the stage, the treatment options, and the cancer patient’s ability to sustain the effort. There are so many variables, so many ways things can go, no one is ever promised complete cure or extended life, except perhaps in Stage One, where it’s easy to be optimistic.

Understanding the broad spectrum of diseases with the generic title of “cancer” is more complicated than most people appreciate. While the pancreatic cancer organization in the UK erred by their promotional campaign’s suggestion that there are better kinds of cancers to have, I’ve seen people make the opposite mistake. I once had a conversation with a cancer caregiver who actually thought her husband’s taking a pill once every couple of months was the same experience as my mother’s being at the cancer center five days a week for months of treatment. It wasn’t the difference between prostate cancer and lung cancer that was the problem. My mother was dying of the disease. She had no treatment options, other than to keep her comfortable. To have her cancer dismissed as the equivalent of an active man with managed prostate cancer fully engaged in life was hurtful. Four years after my mother’s death, the same man is still going strong, still enjoying life. Do I begrudge him that time? Absolutely not. I’m glad he made it. I wish everyone did.

But I also wish his cancer caregiver understood the difference between a well-managed cancer and one that is out of control — not through a failure by patient, caregiver or doctor, but because cancer is what it is. When it overtakes the body, options are fewer and the toll is much greater. We need to support cancer families in crisis with real action. We need to be there for them through thick and thin. These are the cancer patients who have the greatest hardships. These are the cancer caregivers who need a hand in providing care.

I wish everyone survived their bouts with cancer. That’s really the bottom line. Many more do now than did forty years ago. Some people manage their cancers for a while, thanks to new treatments and better diagnoses. But there are still some people whose cancers are so aggressive, it’s impossible for oncologists to do much other than try this or that. Cancer is still a mystery to figure out.

While it’s tempting to attack with an “Occupy Cancer!” attitude, as if we can sit in and force cancer researchers to cure this type of cancer or that type, the fact is the developments in disease treatment are often made in unusual ways. Just recently, there was an announcement that doctors think a new acid bath for cancer cells might be an amazing weapon in the fight against cancer. Acid bath? It sounds so much better than a cancer drug that knocks patients on their fannies and sometimes even coldcocks them. In reality, it’s not always the cancer that kills the patient. It’s the rigors of the treatments, with the dangerous side effects. Many chemotherapy patients find their organs permanently damaged by the very treatments that keep them alive.

Getting hit by a Fiat going five miles an hour is probably a survivable event — the impact on the body helps to determine the extent of the injuries. Getting hit by one going ninety miles an hour is probably not. Perspective is important when assessing cancer survivability, and the better able we are to see what is in front of us means we will act in good faith and to the best of our ability when meeting the cancer challenge.

Let’s stop assuming that the happy face social media slaps on cancer is the real story. Let’s stop thinking of the disease in terms of “good cancer” and “bad cancer”. Let’s stop thinking that some people are “lucky to have the good kind of cancer” and others are “unlucky”. We need to join together in supporting every cancer patient, every cancer family, without the rancor or bitterness. Cancer is cancer. It doesn’t care who you are or what you do or how much money you have in the bank. It doesn’t care if you’re a worthwhile person or the vilest of the vile. Cancer can’t be dreamed up or wished away. It’s a challenge that can only be met with a positive attitude, a realistic perspective, and a gritty determination to learn as much as we can to insure quality of life, not just quantity. Cancer is what it is, but life with cancer is what you make it. Choose wisely.

For more help as a cancer caregiver, visit The Practical Caregiver Guides

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What Do Cancer Survivors and Diamonds Have in Common?

Post author By sarambarton
Post date January 24, 2014

Diamonds…how do you make one? You bury carbon dioxide 100 miles inside the earth’s core and then you heat it to 2,200 degrees Fahrenheit. It’s all about high pressure and high heat. But a raw diamond isn’t really all that amazing, is it? It becomes something special when it is transformed.

Raw diamonds do very little to let in the light. They are obtuse rocks, chunks of pressurized carbon that don’t shine, glitter, or gleam.

Ordinary…common…plain.

The other day, I read a very touching obituary about a woman whose struggle with cancer began back in the 1970’s…forty years ago…four decades of battling this disease…can you imagine the pressure she faced to live her life in spite of cancer? This isn’t an undertaking for the faint of heart.

Cancer survivors live their lives under enormous pressure. They constantly rework the details of their lives around the disease, making the necessary accommodations that enable them to continue reaching their goals, even when they don’t know if they’ll reach them all.

It’s a myth that diamonds are unbreakable. Sometimes it happens. A tiny fracture, one that might exist as the stone is forming, creates a vulnerability that puts the diamond at risk. Sometimes if it’s struck at that vulnerability, it will crack, divide, or even chip. If the damage isn’t great, it can often be repaired.

Sometimes people, like diamonds, can break. No one is invincible. But the human spirit that chooses to rise above turmoil, that seeks to endure the unimaginable, often finds there is opportunity in wise design. Knowing our own flaws helps us to figure out our strengths and use them to our advantage when we construct, and sometimes reconstruct, our lives with cancer.

The myth about cancer survivors is that they somehow achieve greatness because of their experience with the disease. People expect cancer survivors to be extraordinary beings, super heroes who do amazing things because they have the Big C. In reality, cancer patients are human. Who and what they are is decided, not by disease, but by self-determination and wise counsel.

Cancer survivors aren’t all equal. Some are so overwhelmed by the rigors of cancer management that they lose themselves in the pain and uncertainty. Some stop living their lives. They lock themselves away and grieve for the time they won’t have, rather than living the time they do.

And some, despite being overwhelmed, in pain, uncertain, rise above the limitations of disease and move forward, upward, onward. They don’t do it because they have super powers, but because they gird themselves with courage they hope will hold them up. They are willing to take one little step more by drawing on their inner strength.

Most long-time cancer survivors can teach the world much about personal resolve, about what it’s like to find yourself knocked all the way back to Square One when you least expect it. Fighting cancer isn’t about sweating the skirmishes, but about surviving to fight another day. Seasoned veterans of the battle know that the first time you hear that diagnosis is horrible, and it never really gets easier to hear it again…and again…and again. But it sometimes happens. You do the best you can and you go on.

Some cancer survivors seem to thrive as human beings, and we often mistake this phenomena as a byproduct of the disease. Cancer didn’t improve them. Sure, it pressured them, heated them until they were sure they could take no more, but they CHOSE to transform themselves.

It takes a jeweler to see the beauty inside a raw diamond, to chip away the cloudy bits, to cut away the flaws, until it is transformed. Every facet of a well-cut diamond allows in light, and where there is light, refracting on those hard surfaces of the diamond, there is sparkle. But it is the human hand and the human eye that finds the beauty in the raw stone and turns it into a gem.

Every cancer survivor has the power to transform. Choosing the kind of life you want to live WITH a cancer diagnosis allows you to take back your personal power. That mindset, that self-determination in the decision-making process, is what empowers us as people to take what we have and make the most of it. If we believe we can find opportunities even in crisis, we will seek them out. And when we recognize them, we will use them to our advantage.

When selecting a diamond, most jewelers advise paying attention to the four c’s — cut, clarity, color, and carat. A good raw stone will yield an attractive gem in the hands of an experienced diamond cutter. It’s a matter of knowing what goes and what stays. The same is true for cancer management.

Long-time cancer survivors, honed by experience with the disease, often develop extraordinary clarity — they come to recognize their vision of what life should be and they work towards making it happen, even when there are obstacles in their way. They add deliberate color to their lives by being selective of time, energy, and desire. Things that don’t serve a purpose or nurture are cut away, until what’s left is the beauty they’ve created in a life touched by cancer.

To become extraordinary as a cancer survivor, it’s all about the four P’s — perseverance, personality, psyche, and passion. When you live mindfully, focused on what matters most to you as a human being, your determination makes you extraordinary, not cancer. Cancer is just the crisis that helped to form the rock. Without a master jeweler to cut and shape it, it is destined to remain just that…ordinary…common…plain.

You, cancer survivor, are the master jeweler, the artisan who will transform the ordinary into the extraordinary, the common into the remarkable, the plain into the magnificent. It doesn’t happen in an instant. You must work at it. You must become skilled and knowledgeable about the disease, about how to survive it. The more you know, the better your decisions will be. Seek out those people who have managed their cancer through the years. Recognize the efforts they make to stay on top of their disease and to maintain their quality of life. Let them share their wisdom with you, so that you, too, can be extraordinary. Fate brings cancer into ordinary lives, but ordinary people choose their own destiny. You can, too.

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Do Cancer Caregivers Have a Role in Medication Management?

Post author By sarambarton
Post date January 6, 2014

My mother was a big believer in quality of life. It mattered to her that her life with cancer was meaningful. She didn’t just want to exist. Knowing that helped me to be a better cancer caregiver. It enabled me to focus my efforts towards making her life as comfortable and active as possible.

I recently had a conversation with an elderly woman who wanted to share her discomfort with me. She wanted someone to know how difficult her life had become. In listening to her tale of woe, I was reminded once again that caregivers are often critical in making patients’ lives better. Here’s why. Her physician put her on a very powerful medication, one that my mother refused to take, and this elderly woman wanted someone to know that she hated it. I let her talk because she needed to “get it out of her system”. She was clearly frustrated with her medical situation, but it was more than that. She felt had nowhere to turn for answers or options. When she told me that the doctors never listen to her, I cringed. The truth is that doctor-patient communication is absolutely critical in pain management. Without effective and honest conversation, there’s no way a doctor is going to be able to solve a solvable problem. Doctors aren’t mind readers.

Neuropathy was one of the most frustrating side effects of chemotherapy for my mother. But the pain medication she was prescribed for this condition turned out to be more debilitating than the “pins and needles”. She felt like she was separated from her body and it “creeped her out”. When a patient reports feeling that abnormal because of a drug, sometimes it’s a drug interaction or reaction. The patient might need a lower dose or even a change. But if a patient doesn’t report this to the prescriber, how will the situation get better?

As a cancer caregiver, it was my job to understand how well my mother was tolerating the treatments she was receiving and to figure out ways of helping her meet her needs better. Sometimes that meant making sure that the medical treatment team had the important information they needed to make the best decisions. But for many cancer patients, it’s not always easy to share what’s really going on. Doctors often are busy, with back-to-back appointments. Cancer patients with fatigue are already dragging their feet as they go through the day. A high-energy doctor and a low-energy patient aren’t always a good combination. That’s why a wise cancer caregiver may sometimes need to step in and prompt a patient to share what’s really going on.

When you only have so much energy to get you through your day, when your thoughts are muddled by drugs, treatments, or even just the stress of having cancer, the path of least resistance can seem attractive. That means raising the white flag in defeat. Too many cancer patients turn away from the fight to get problems fixed.

This is why many cancer patients benefit from having cancer caregivers. We serve as support teams for our loved ones. We also serve as advocates. By accurately observing the symptoms our loved ones experience, and by putting these into logical context, we can often intercede to get the right help for our loved ones. We are sometimes the bridge between doctor and patient, and the better we can understand our loved ones’ experiences, the more likely we are to help them get what they need.

Is it because our loved ones feel like the walking wounded? Is it because they fear that the discomfort they experience is symptomatic of new issues? Or is it just that they don’t think there is any way to make a bad situation better? Sometimes cancer patients, especially those who have been in treatment for a long, long time, just kind of shrug off new problems with resignation. That’s why cancer caregivers have to pay attention and guide their loved ones to effectively communicate with the medical team.

In my mother’s case, the medication was just too strong for the amount of physical pain she had, and that meant that the medication, rather than relieving the symptoms, only made her feel “loopy” and not at all like herself. The solution was simple enough. She stopped that medication and went to something milder.

This wasn’t the only time that my mother was prescribed a pain medication during cancer treatment that made her miserable. She once was given a pain patch that drove her bananas. Some patients really don’t tolerate pain medications very well, and for them, the standard course isn’t always the right course. A good palliative care specialist always takes that into consideration when making adjustments. That’s the goal of pain management; to find the right balance between taking enough of the pain away to enable the patient to function at the highest level and making sure that the patient isn’t overmedicated. But, as always, the level of medication can be adjusted only when the patient and caregiver are able to effectively share the information with the medical team.

The loss of hope can have a profound effect on doctor-patient communications, especially when your loved one assumes there are no more options. A wise cancer caregiver understands that it’s not a matter of taking over and reporting to the physician on a patient’s situation. But it’s your duty to get real answers for real issues.

My mother was delighted to learn that things could indeed get better. Once she had the chance to see that the physician really did want to help her, she admitted she was having difficulty with medications. Mind you, there may be times when there aren’t a lot of alternatives. And sometimes where your loved one is with the cancer can effect the medication. But you should always encourage the dialogue. because sometimes the “not knowing” is worse than the truth.

My philosophy of listening and guiding paid off for the elderly woman. She called me a few days later, wanting to ask me some more questions about my mother’s experience with the drug she was taking. As she spoke, she acknowledged that her physician had previously prescribed a lower dose of the drug and she had felt much, much better. She couldn’t remember why he had recently increased the dosage, but he had. And the more she thought about it, the more she wished she could go back to the way she felt when the dosage was lower.

But she had already ruled out talking to the doctor, to the physician assistant, and to the nurse practitioner (right there you know there’s a significant communications breakdown.) What was left? The local pharmacist. Believe or not, sometimes the pharmacist who dispenses the medications can be a significant resource for caregivers and patients. Once I established the fact that she not only knew him and liked him, we discussed how approachable and personable he was. Could she feel comfortable asking him about the medication? Could she trust him to be straight with her on options?

The local pharmacist is often someone who can play a positive role in pain management, if for no other reason than he or she can be a fountain of information on side effects and ways to effectively manage these. Pharmacists can help patients and their caregivers navigate the issues without interfering in the patient-doctor relationship. If anything, a pharmacist can often help a patient understand better ways of communicating the real problems to the medical team. Is it because pharmacists aren’t usually perceived as intimidating, short on time, or uninterested, or is it because they understand drugs and drug interactions? Who knows. What’s important is that patients get what they need, and wise cancer caregivers know that any way you can make that happen, it’s a positive step in the right direction.

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Don’t Flee the Cancer Community! Embrace It!

Post author By sarambarton
Post date December 31, 2013

Life isn’t fair. It never really was. Some people seem to live charmed lives, enjoying idyllic days and happily ever after. Others seem destined to live in chaotic times, with moments of heart-pounding terror, when everything seems to be up in the air, the outcome can go either way, and life becomes a game of chance. It can turn on a dime, when you least expect it, ruining the best laid plans.

Cancer is a terrible disease. Well, actually cancer is a label for several hundred different diseases that we call by this one name, but it’s still horrible. And the outcome, depending on the type and stage, can be positive or negative. If you think I’m talking solely in terms of life and death, black and white, you’re wrong. I’m talking about how we face cancer. Our reactions, our actions, even our inactions — they all define us. Cancer may choose among us, but how we choose to manage this disease can make all the difference in the world.

Each of us knows someone who died from cancer of one form or another. Each of us knows many survivors in varying stages. But we are human, and in that humanness, there is a tendency to want to flee the sick. Maybe it’s a survival thing. Maybe we just don’t want to be reminded of our own mortality. Inevitably, many cancer patients find their social circle growing smaller when their cancer grows larger, as friends and family sometimes turn away, unable to face the expected heartache of saying goodbye to someone presumed to be on the road to death.

Is it the bald head of chemotherapy and the pallor that makes one look like a prisoner from Auschwitz that we can’t stand to see? Maybe that’s part of it. Or is it that we can’t seem to bear the struggle of day-to-day living with cancer, the inability to eat, to walk, to function? What if that impression is wrong? What if, rather than seeing the worst of life, we might see some of the most glorious moments of human spirit and endurance? What if there’s another way to look at cancer patients that will help us to live better, more meaningful lives?

When we embrace the cancer community, it’s not all pink ribbons and “life is good”. We know that as surely as we know some people will not be cured and their lives will end too quickly, some people will manage their disease for a while and we will have those precious months and years to enjoy, and some people will survive the disease and eventually die of other causes. But when you or someone you love lives with cancer, the quality of that life becomes paramount, no matter how much time on this earth is left.

The pain of having cancer is never more apparent than at the holidays. This is the time of year we so love to celebrate, and when someone we love can’t find the energy to do normal things, it’s a tough reminder that magic doesn’t happen for everyone. This is the season of miracles and the sharp jab to our hearts might make us hesitate or turn away. But we should never turn away from a cancer patient or from the cancer community, especially at this time of year. Why? Because we might miss some of the most important lessons of spirit and courage and love.

I say this as I follow several long-distance friends with cancer. Some have found success this year. Remission is a glorious word, one we celebrated with great expectations for continued success. It makes us want to do the happy dance.

Others haven’t been as lucky. New tumors arrived with a ferocity that is both stunning and terrifying. Old treatments failed, new treatments failed, and we watched as friends fell into that black hole of uncertainty. Every time another person teeters on the edge of life, we ache, but we ache together. Every time a member of the cancer community dies, we die a little too, but we’re there for each other. There is strength in numbers.

Recently, I read a heart-wrenching message from one long-distance friend. Someone she cared about lost the battle and she raged against the unfairness of it all. She was angry. She was passionate. I took heart from her diatribe against cancer. I thought about the young woman who passed away and what she would have taken from this. To know that you matter, that you were someone special in the eyes of such an eloquent and fiery champion, who wouldn’t want that kind of friend? No one is ever really gone with so many wonderful people to insist on remembering.

But the most glorious lesson I’ve learned in recent months comes from a young mother who has faced some enormous obstacles in her cancer journey. She has young children who depend on her. She has a husband, parents, in-laws, siblings, other relatives, friends, and even strangers hanging on her every word. We follow the ups and downs of her cancer treatment with hands on our hearts and prayers on our lips. “Please let this go well for her.”

Cancer really is a soap opera of the heart. We never know when an infection might set in and spoil everything or some tiny miracle might be found as a tumor is pushed back. In some ways, living with cancer is the ultimate melodrama. Sometimes that’s where the human spirit makes the most progress, whether we want it or not, whether we’re ready for it or not.

During Christmas week, I followed the postings of this long-distance friend as she tried to pack as much fun into the holiday as she could, not for herself, but for her kids. “They deserve this,” she insisted, and she’s right. She reached out to her following, explaining what she wanted to do, asking for help to make it happen. People responded. It was more than just hopes and prayers. It was a community’s belief that good things can still happen, even when cancer knocks you on your fanny. That’s why it’s so important for cancer families to remain connected to the support circle at every stage of cancer treatment and management.

A mother really can fight tooth and nail for her kids, even as this disease continues to smack her to the ground. Why is that important? Because she still has power to change the world. Every time my long-distance friend stands up to get something for her kids, she’s stronger than the disease. Her body may not be able to support her at this moment in time. She may feel unable to do the very simple things in life. But there’s still a fighting spirit here who demands to be heard, who insists on succeeding. She is motivated by love to give her children what they most need, the very best of her, and in that effort, everyone wins.

Her children will carry these lessons with them through life. The tough times have shaped them in ways that other children will never know. Was it unfair? Absolutely. Was it painful? Without a doubt. But these children have the gift of love like no other children have it. Come what may, they will know that you keep fighting to do right by those you love. They will know that when the chips are down, you find ways to get around the obstacles. They will know that love matters, family matters, and you don’t walk away. That’s because they have an amazing mother. Cancer didn’t make her that way. She was amazing before cancer. But when the disease took hold of her body, she decided how she would live her life with cancer. She recognized that she had the power and she grabbed it, refusing to let go. Cancer would not defeat her, because her spirit was greater than a disease. And she was right. She is so much more than cancer. That is what we celebrate with her. That’s what we learn when we follow her journey. And that’s what we can apply in our own lives.

When we come together, when we share, we’re learning to help each other rise above the hardships, the brutality of cancer, to embrace what really matters and to leave behind those ordinary things that have no real value in the struggle of life over death. It’s the triumph of spirit over sorrow, of determination over despair. A cancer community really isn’t just about cancer or about living with cancer. It’s about surviving and thriving despite the cancer and about not letting cancer have the power to decide how you find the true joy in life. Fate may have brought cancer to your doorstep without your permission, but your destiny is still your own to make. Learn from the cancer community and choose wisely. Live life, love life, and love.

Wishing you all a Happy, Healthy New Year.

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How Could She Die of Cancer Without Anyone Knowing?

Post author By sarambarton
Post date December 10, 2013

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago — a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer’s day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn’t find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

“This is a very special gift
That you can never see
The reason it’s so special is
It’s just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It’s filled with Love inside”

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn’t feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months — nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient’s complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It’s a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn’t feel right and that sense grows over time, demand to know — Could it be cancer?

Many times, the symptoms don’t show up until it’s too late for cure, but that doesn’t mean it’s too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn’t get better. Could it be cancer?

And if it is, don’t stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don’t stand on the sidelines and hope for the best. Don’t wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?

cancer caregiver caregiver education

Cancer Taught Me Not to Sweat the Small Stuff

Post author By sarambarton
Post date November 28, 2013

It’s been a tough couple of weeks for me. I was hit with some rather unsavory cyber stalking. My FB account’s been repeatedly manipulated by some creep with too much time on his hands and no conscience to speak of. Some strange woman has decided to launch a very nasty Internet rally of her like-minded friends because I don’t recognize her telepathic powers. (She’s decided I’m some kind of menace to humanity and she’s going to wage an epic battle to save the planet….) I’ve got bills to pay and things to do, but someone’s always stepping into my path as I try to get there. And today, I received news that my beloved cousin passed away. No more sweet letters. No more cards with that familiar handwriting. No “one last time” to say I love you. Life is so fragile at times, so unexpectedly fraught with ugly surprises and uncertainty.

Last night I started the preparations for Thanksgiving dinner, even as I tried to meet a publishing deadline for a holiday novella. I’m so far behind in my housekeeping, the Dust Bunnies have their own zip code. I decided that rather than try to squeeze all my work into one day, I would multi-task and do what I could in the time frame I had. I got my turkey ready (I know it sounds odd, but I’m not really expecting a huge crowd and I have a little trick I like to do with the bird, the stuffing, and some gravy). I cooked my carrots, made the glaze, and then got busy with the broccoli with cheddar sauce. I even prepared my potatoes. And I did it even though the microwave conked out on me. That’s right. My carousel popped a wheel. It’s the harried cook’s equivalent of a flat tire.

There was a time I probably would have thrown up my hands and walked away from the kitchen. I certainly did consider having a pity party for myself. After all, preparing the Thanksgiving meal is a lot of work for me and I have so many other things that need doing. But then my father mentioned my late mother and how she used to do Thanksgiving. His favorite thing? Helping her lift the big turkey out of the fridge, onto the counter, and then into the oven. We forget sometimes that it’s the little things that matter most, those tiny moments when we have a place in the world.

That’s part of why I cooked the turkey yesterday. I want my dad to be able to slice it with his carving set, to feel like he’s a part of the effort. He misses my mother, no more so than at the holidays. The idea of rushing him, of being tense and crazy as I try to put dinner on the table, made me want to shuck that nonsense and concentrate on what really matters.

My life as a cancer caregiver taught me to multitask in ways I never thought possible, to focus on what has to get done and forget about what isn’t really viable or necessary. I am, after all, just one person. I don’t leap tall buildings in a single bound. I can’t heal the sick with a wave of my hand. I wish I could, because I would use those powers to help the people who really make a difference in this world.

With all of my frustrations over the past few weeks, it’s easy to get wrapped up in my own drama, to feel frustrated. But I sit here now on Thanksgiving knowing that my mother’s cancer experience changed me as a human being. On this day, I do give thanks for the many blessings. For all the strange people who feel compelled to trip me on life’s highway, there are so many more who have offered me a hand up, who have shared a kind word or thought, who have impressed me with their grace under fire. I have met many cancer survivors who have done incredible things with their lives as the result of their experiences with the disease. Would they have tried so hard or dug so deep without that cancer? Maybe not. Sometimes it’s the hardships in life that define us as human beings.

I’m so glad that I didn’t walk away from the cancer community after my mother died. I certainly could have. But those people who share with me are my teachers. They constantly remind me that tomorrow is promised to no one and we must take advantage of today. When I think of the young mother trying to boost her immune system so she can survive to see her kids grow up, when I think of the cancer survivor who shopped for a fancy pair of shoes for a cancer gala with such delight, when I think of each and every cancer widow and widower,and the children left behind, struggling to find the joy in the holiday without a beloved spouse or parent, I am reminded that I am blessed with more than I realize.

Cancer is a cruel disease. It can wreak havoc and ravage the beautiful landscape of the human body. But in those moments of choice, when we men, women and children stand on the precipice, looking down on what is right there in front of us, across at what is out of reach, and above at what we aspire to overcome, perspective is everything. Sometimes it’s not what we expect to do that makes us amazing human beings. Many of us don’t set out to be heroes. But every time we reach out to other human beings and push back at that darkness, we do more than just gain some ground in the fight against cancer. We come back stronger, wiser.

Cancer doesn’t just affect the human body, it shapes the spirit. Fate hands us the circumstances of our lives, but destiny forces us to choose the path, even when we don’t know the outcome. When we take charge of our own selves and how the world affects us, we are no longer victims — we are survivors of the Great Lemon Wars, servers of the world’s best lemonades, sweetened with our compassion and commitment to do right by those we love.

We forget that cancer survivors are sometimes the greatest givers of love. Even when a cancer patient can’t do all the things he or she wants to do, the hand can reach out and touch another human being in need. For many cancer survivors, time becomes a tool for a purpose-driven life; they are thrust into the realization that “it’s now or never!” Until that final breath, there is time for one more moment of joy.

When a disease like cancer robs people of options to achieve their dreams, it’s easy to believe that there is nothing left to work for, to strive for, to hunger for; and yet, wise teachers that some cancer survivors are, there are those who show us that dreams can and do evolve when the spirit is determined to make the best of a bad situation. For every frustration, every failure, every fluke of nature, we can and should look for hope, for help, and most of all, for happiness.

To all of you cancer families out there, I wish you a bountiful Thanksgiving. Eat at the table, but don’t forget to feed your soul. Believe in something bigger than this senseless disease. We have much to be thankful for on this day. It’s not about a boatload of people who stumbled onto the shores of Plymouth Rock and sat down to share a meal with the Native Americans they met. It’s about life and the people we treasure. Without them, our world is a lonelier, colder, darker place. Long after they are gone from this earth, they still remain with us, We will treasure this day and what we make of it, so go have some fun today. Don’t sweat the small stuff. Hug and be hugged. Laugh. Share. Even if it means shifting your path for just a moment, make one person happier today. Life is for the living, but it’s also for the loving. We have this moment in time, so savor it. God bless you.