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Jan 31
I woke up to a sky of silvery blue and the insistent shouting coming from down the hall. My daughter, Chloe, now almost seven months old, was calling for me, “Mamamama..maMAH! MaMAAAAH!”

I pulled myself out of the downy warmth of my bed and grinned at the sound of her insistent little voice, calling for me.

“Good morning, Chlo-Chlo” I said, rubbing the sleep from my eyes. She was in her purple-footed pajamas sitting up in the middle of her crib. The pale yellow of her room cast a warm glow on her upturned face and I could see she was clearly delighted with herself that her little commanding call produced such quick results! I reached into her crib and pulled her toward me and nuzzled her warm, soft neck. As I held her, Chloe belted out another ‘maMAH!’ for good measure and then she shrieked with laughter. Her dark brown eyes danced with mischief and her little face was bursting with delight.

I was so exhausted from single parenting that I can’t recall the exact moment when Chloe figured out that “Mmmmmamah” would have me running to her side. However, from the day she was born, I mulled over all the milestones I would experience with her all alone, without her dad there to share them with me.

Her father, Will, the love of my life, died five months ago from a rare cancer. I knew someday, her baby gurgles would turn into more complex words with deeper thoughts behind them and perhaps questions why she didn’t have a daddy like the other kids she played with at the neighborhood park. If Fate had been more kind, Will would have recovered from his cancer and we would have laughed as we stumbled through the joys of juggling careers and parenting together. Being competitive journalists, I’m sure we would have been locked in a good-natured competition to see which of us Chloe would recognize first and say out loud, “Mama” or “Da-da”?

Even now, I can imagine Will screaming with joy, “She said, ‘DADDY!’” and me running to grab the camera to capture the special moment.

But what will my baby girl do with her daddy out of the picture and not a daily presence in her life? Will her d-d-d-d’s become “Da-Da’s?” or something else? What will it feel like for me when I hear her say “Da-Da” for the first time?

I wasn’t sure.

Time went by with Chloe pointing at just about everything and saying “Mama.” There was “Mahma-aaaaaaah!” the cry that told me she was in pain or “Mama?” when she wanted to show me something. And then there was “Mamamamama” when she was being coy at bedtime.

But no sign of “Da-Da.”

I knew she was overdue for another word. I looked around our little house, trying to get a feel for what she saw and what cues I could give her to help expand her vocabulary. There was the pile of toys, her little rocking chair and pink blankie in the corner. Outside the picture window, we could see the tall oak trees in our small backyard with patches of grass that never seemed to fill in and the neighbor’s swing set that I envied next door. From time to time, CNN was on TV, usually tuned in to Wolf Blitzer’s show, “The Situation Room,” since I felt politics was not too violent for a baby to see. There were pictures of Will on top of the television credenza—his tosseled blond hair and goofy smile, his half moon dimple on his chin that looked just like Chloe’s. And there was our wedding picture, with Will playfully holding two fingers over my head while we assumed a traditional bride and groom pose. My favorite was of him posing against the windswept San Francisco Bay.

Although Chloe's baby-sitter would often point out Will in his photos to her and say over and over “da-da,” I never did. I was still too emotionally raw from losing him. I wanted Chloe someday to ask, “Mama, is that my daddy?” but I needed more time to pass so I wouldn’t cry at the sound of his name. And though I put his photos out so he would be part of our everyday lives, a part of me dreaded the moment I would hear her say, “da da” or worse, thinking of what to say when she asked, “Is that my daddy?”

So, on this morning, as we did every day, we had breakfast together and I would point out all the things we could see from the kitchen, “T-t-trees! B-b-b birdie!” But I could see Chloe had something on her mind as she sucked on her milk in her high chair and purple pajamas. She drank slowly and steadily, her tiny hands holding the bottle as she surveyed the family room with great purpose and then her eyes fixed themselves with laser-like focus in the direction of Will’s photos.

Suddenly, she dropped her bottle on her plastic tray table with a clatter and pointed directly at the credenza and our family photos. My heart jumped. This was it. The long awaited moment had come.

“B-b-b-BEEE-YEEEE!” She said, pressing her lips together. “B-b-b-BEEE-YEEEE!”

Huh? I focused more closely in the direction of her pointing finger, wondering why Chloe was calling her father, “BeeeYeee.”

Just then, our family cat, Billy, a black and gold tabby who weighed more than twenty pounds, lumbered around the credenza, meowing, ready for breakfast. “Beee-Yee, Mama!” Chloe shouted the cat’s name again, so proud she found another word that expressed her world.

Chloe was not pointing at Will’s photos, after all.

As I looked at Chloe’s beaming little face, I realized that, over time, she will express her own joys and sorrows and they will be different than mine. Will’s photos stand as a reminder that he is an important part of our lives but Chloe is on her own timetable. It will be up to me to help her understand who her daddy was and how precious it sounds to me when she asks about him and says his name. Eventually.

And when she does say his name, I owe it to her to be able to tell her about her dad without tears of sadness and remorse.

“B-b-b-BEEE-YEEEE,” Chloe said again, pointing at our cat. “B-b-b-BEEE-YEEEE.”

This morning, I was so grateful Chloe was giving me more time.


Former CNN anchor, Carol Lin is the mother of one daughter and the co-founder of TulaHealth.  She is a regular ShareWIK.com contributor.  Visit her on the web at CarolLinReporting.com.



More Carol Lin articles, click here.


Aug 15

This is a column I’ve wanted to write for some time to clear the air.

 

Recently I wrote about my friends Ron and Dianne moving away, about our friendship, about how they stood by my little family through good times and bad. I count them among a very special group of friends who rose up to support my first husband, Will during his dying days suffering from cancer and gave me the courage and emotional sustenance to raise our baby daughter alone, without him.

 

I can honestly say there is no way I can repay people like Ron, Dianne, Pam, Peter, Adele, Jim, Simon and Alicia and so many others, for their kindness, patience and generosity of their time and compassion. I know these are just names to you, but to me, they represent the ultimate conundrum: how can I adequately thank the people who raised me up in the worst of times? 

 

In the years since Will’s death, I have learned I can’t.  I can’t thank them enough, honor them sufficiently, and as a result, misunderstandings flared, friendships waned and in some cases, we—my friends and I—are left wondering whether even the strongest friendships can withstand the chaotic imbalance of giving versus getting when a family is in crisis.

 

The fact is, I received much more than I'll ever be able to give back.  And knowing this left me frustrated and feeling guilty, just as I think it left some of my friends feeling disappointed, hurt, our relationships strained.  

 

Seven years after Will’s death, I wonder, can this be fixed? 

 

During Will’s last days, he and I and our newborn daughter, Chloe moved in with my best friend from college and her husband.  They made sure we had food, managed all the communications with CNN and friends, and they made sure Will held a glass of wine to his lips and watched a beautiful sunset each night—even if they had to carry him to a spot to take in the view.  Others held his hand, rubbed his back, held nightly dinner parties and never, ever judged his changing appearance. 

 

If I’m honest with myself, I must admit that Will was the one who always made the friends. I was the one who made it home from the last breaking story I was covering to eat at the table he and our friends set.  And many of those friends are the friends I loved dearly, still have dreams about, and think about in church when I pray "forgive me for my trespasses.”  Because many of them are no longer part of my life.   

 

I blame myself.

 

Will remembered the birthdays, bought the gifts during the Holidays and kept up with everyone's news. After he died, I tried to pick up the mantle of friendship, but as I've said before Will was the Golden Retriever; I was the German shepherd.  I was the worker bee who found it much easier to run off and hide behind covering a war in Kosovo or the test firing of a nuclear missile in North Korea instead of sending a birthday card in a timely fashion.  After a while, it was just easier not to send the card instead of apologizing and then having to explain why their card was always arriving a few days late.   

 

I think the survivor, the bereaved has a particular burden and responsibility. First, there is the work of grieving and learning to live without the one you’ve lost.  But then comes some of the most emotionally challenging work of all: being someone worthy of helping and becoming someone wise enough to know how to help others in return.

 

Former CNN anchor, Carol Lin is the mother of one daughter and the co-founder of TulaHealth.  She is a regular ShareWIK.com contributor.  Visit her on the web at CarolLinReporting.com.

 

More Carol Lin articles, click here. 

©ShareWIK Media Group, LLC 2010

 

 

Aug 29

My brother, Stan and I are as different as peas and kumquats and have been since the day we were born. He is reserved; I am loud. He became an academic scientist, the kind who forgets to change his clothes while contentedly watching cells divide in a Petri dish for days and days; I loved the designer clothes that became a must-have for my career in broadcast news.  He lives on the east coast; I live on the west coast, 2857 miles away from him. 

 

When we were growing up, I thought my mom loved Stan more than me. She worked as a biochemist at Los Angeles’ Children’s Hospital and my brother was an ace chemistry major. I was more like my philosopher father. I loved books. I loved to write. I was emotional and broke every Asian math-whiz stereotype as I agonized my way through algebra and geometry. I still remember peeking in to our kitchen well past my bedtime to find Stan and our mom sharing hot chocolate and a private joke, or the latest New England Journal of Medicine.

 

“Why can’t you be more like Stan?” our mother would say, shaking her head in wonder at my latest report card filled, like it usually was, with mostly B’s.  Stan, on the other hand, made earning straight A’s look easy.  I was always “Very Good” in my mother’s eyes; Stan was always “Excellent.”

 

Her comparison haunted me and I have longed for her approval for nearly 30 years after my last report card.

 

When our mother was diagnosed with cancer, I wondered to whom she would turn for comfort?  Me, her “very good” daughter?  Or Stan, her “excellent” son?   

 

Despite Stan’s Ph.D. in cancer research from the esteemed Johns Hopkins University, he did not take leave from his academic career at Wesleyan University to manage our mother’s cancer treatment.  He stayed put.  I couldn’t understand why.  It was his calling. She was his mother and he was her favorite.

 

Instead, I flew back and forth from Atlanta where I worked for CNN, to Los Angeles to look after her and help her make decisions.  I was the one who took my mother’s HMO to task for not diagnosing her cancer sooner.

 

Where was Stan? 

 

Rightly or wrongly, I imagined him working happily in his lab, spending quiet nights grading his students’ papers, ordering take out and watching TV in bed, while I juggled single-motherhood, a demanding career and our rather grouchy mother who was losing her hair to chemo.  I did not call Stan and he did not call me.  It was much easier to imagine what the other sibling was thinking or feeling. Our differences through the years prevented us from sharing the most important moment in our lives. The silence grew into resentment. After years of playing second fiddle, I had a starring role in my mother’s life but it was not what I bargained for.


“Stan’s so busy, Carol. He can’t just
leave,” my mother would say.      

 

I did not feel her gratitude or my brother’s admiration.  I felt used.  I felt like my brother was lost in academia. I wanted to shout over the phone, wake up! You’re the one she loves the most!

 

Cancer calls us to rise above our own expectations of what we think we can tolerate, or what we think we can give. It took months for me to understand this about my brother who in his own quiet way was doing his best. I didn’t fully understand this until I called him after our mother’s doctor told us she had run out of treatment options and said she “only had a matter of time now.” 

 

Stan paused for a long time over the phone. He did not react to the diagnosis. Instead, he shared a memory: “The last time I was home with mom, I was watching her through the garden window. She was moving slowly from rose bush to rose bush, pruning the dead flowers from the stems.  She seemed so small, so old.  But she was strong.  I can’t believe she could be anything else.”

 

There was nothing more he could say.

 

Stan stayed away in order to let something else grow:  Hope. His scientific mind would not allow for that. As a cancer researcher, he knew the odds of my mother’s survival. Her rare cancer, a skin lymphoma, was slow but adaptive and clever. He knew too much. 

 

I had chosen a life of diving fully into the lives of people in a breaking news story.  Stan had chosen science as a refuge, only to be tormented by our mother’s condition and the limits of modern research.  In the months—and now, years—since our mother’s diagnosis, we have all grown closer because indeed, modern research, a clinical trial has inexplicably bought our mother more time at the kitchen table, where the three of us can share our lives together, all doing the best we can.    

 

Former CNN anchor, Carol Lin is the mother of one daughter and the co-founder of TulaHealth.  She is a regular ShareWIK.com contributor.  Visit her on the web at CarolLinReporting.com.

 

More Carol Lin articles, click here. 

 

©ShareWIK Media Group, LLC 2010

Dec 19

It wasn’t your usual family gathering.  My mom had summoned all six of her children home at Christmas so she could go from room to room, assigning each of us her possessions. 

 

She was dying of a terminal illness, already a year into her death march.  One down, three to go, it turned out. 

 

“I think this will look nice in your front hall,” she said to one of my older brothers, her hand resting on a chest of drawers.  And so it went, on and on.  A macabre ritual demanded by our well-organized matriarch, able to square off against Death in the realm of the mundane, but unable to face the broken and stressed out relationships looking right back at her.

 

“And I don’t want any fighting about any of this after I’m gone,” she said. 

 

This was my mom at her finest: in control of both her possessions and our fragile feelings.  We were her obedient children once more, as well as contestants in her game show of random kindness. 

 

I didn’t want her stuff, but then again, I did.  For that was the yardstick of her love: she gave to her favorites, her favorite things. I was a little girl, again, and I hated her for making me feel that way.  All I wanted was to hear her tell me how much she loved me.  But a family heirloom covered in dust, broken and tucked into the back of her closet would have to suffice.  It was the only love she knew how to give me. 

 

When all of her earthly possessions were dispensed, she told us there was one more thing.

 

“I want you all to know,” she began slowly. “That when I feel the end of my life is near, and while I’m still able, I’m going to take my own life.”

 

She sat looking at us, with her hands folded tightly and placed demurely off to the side of her lap.  Her spine was rigid and straight against the back of the chair; her chin was raised high, her legs crossed at the ankles.  She had orchestrated this moment and I could tell it was playing out exactly as planned.  She had declared her intentions, trying to extend a hand of control upon a disease already so out of control.  And now, she sat there, quietly, triumphantly, almost daring us to stop her or even object.  And then she went on, saying something about how much our family’s been through and wanting to spare herself from a death without dignity.  She said something else about it being her right.  I tried to protest, but you didn’t change my mom’s mind once it was made up.  No, she just bulldozed her way through yours.

 

After I returned to my own home in another state, I tried to go back to my daily routine but found myself startled every time the phone rang, anticipating the news that my mom was dead.  But as the weeks tumbled into months, it was my mom calling, telling me only that she was taking another trip, going back to school, planting her vegetable garden, repotting her geraniums, lunching with friends or simply calling to say “hi.”

 

“Just checking in,” she’d say whenever I’d answer, launching into all the happenings of her day, including another doctor’s visit, where she learned a new pain was caused by her advancing disease.  During many of these phone calls, she’d be somber and reflective, as she talked about her burgeoning personal faith, her hopefulness in seeing my children again, or how good the sun felt on her skin, that she said, “felt so cold all the time now.”

 

She seemed to be experiencing life with a new richness—thrilled with the simple and content in her acceptance of the inevitable.  As her horizons narrowed to only the view outside her bedroom window, there was no complaining for the opportunities lost, only thankfulness for the gift of another sunrise, and the sound of my voice.  The physical pain she had feared so much, was controlled with medication and never came close to the emotional agony she twisted in prior to her terminal diagnosis.

 

“Life is such a precious gift from God,” she told me.  “Don’t waste your life or any of the time that God gives to you.  Promise me that, okay?” 

 

We battled for so long, both of us feeling completely justified, and so full of pride and self-righteousness.  The deadline of her death launched her on a soul trip and in taking me along, we were able to call a truce, leaving me to mourn what could have been, not the torment of what was.

 

In the hospice, as she lay gasping for breath, holding my hand, looking right into my eyes, she said, “This is the sickest I’ve been isn’t it?” 

 

I held her hand and thanked her for being the best mom she knew how to be.  I thanked her for so many long talks and hugs and for not killing herself. 

 

She smiled and squeezed my hand back with all her might as she struggled to say, “I would’ve missed out on so much.”

 

Diana Keough is the mother of four sons and co-founder and editor-in-chief of ShareWIK.com
   


 

Read more Diana Keough articles, here. 
 

 

©2010 ShareWIK Media Group, LLC    

 

If you’ve ever had something traumatic happen in your life that changes it forever, there probably has come a time years later when you look back and think, “ If this hadn’t happened, my life would probably have taken a whole other direction.” 


Having recently talked to my stepsister, together we pondered this question.  Her father, my stepfather, died of prostate cancer only three short years after my mother had married him.  By her own admission, still today, she views him as the “love of her life.” 


They married in 1963 and being an only child for the first 12 years of my life, I suddenly had a 10-year-old stepsister, 11-year-old stepbrother and a 13-year-old stepsister, which was quite an adjustment. 


But we did adjust and managed to blend into a Brady Bunch kind of family. The irony was that my youngest stepsister was always mistaken for my mother’s daughter since the other three of us looked surprisingly alike.  In retrospect, that helped some of my awkwardness because I grew to feel more and more like I fit in.  Life was good.


But in the winter of 1967, my stepfather was told he had prostate cancer. Back then such a diagnosis was synonymous with a death sentence.  At 16, that time period was a blur of my mother taking him back and forth to what was then, New York Hospital, now Sloan-Kettering Hospital, for radiation treatments using cobalt irradiation. 


During the 1950’s and 1960’s megavoltage radiation was the treatment of choice.  The x-ray beams penetrated more deeply with this method and had fewer ill effects.  It wouldn’t be untill two decades later that the high energy X-rays became increasingly popular.  Also in the early 80’s the role of the Line Accelerator as the most common form of external beam radiation therapy (EBRT) was established.  But these advancements unfortunately came too late for my stepfather who died quickly in the spring of 1967. 


As a result, my stepsiblings moved to Pennsylvania to live with their mother; my mother and I moved to the other side of town but remained in the same New Jersey suburb so I could finish my last two years of high school.  Just as seamlessly as we came together, we fell out of touch for many years, all grieving in our own separate ways.


Now over 30 years have passed and last October I attended my 40th high school reunion, during which a number of old friends asked about my stepsiblings.  Once again my curiosity was rekindled.  Reluctantly, I opened up a Facebook account and as it was meant to be, my oldest stepsister found me.


Since then we have had numerous conversations, piecing together our past histories.  Laughing and crying over what was and what might have been.  Just like any dear old friend, we so easily “picked up where we left off.”


She became a physician’s assistant and I, a therapist.  We talked about our different career paths – though different, both helping professions.  Her interest in healthcare sprang out of her activist nature, always involved in political and health related causes.  Whereas, my passion had always been for supporting people in sorting through and healing from their emotional pain in order to move forward with their lives.  Certainly becoming a therapist gave me the knowledge and insight to heal and move forward with mine.


We reminisced about our days together as a family, how happy our parents were together and how sad and tragically it ended.  Our family was broken apart so abruptly.  Life is so ephemeral.


Perhaps saddest of all though, is the knowledge that if he had had prostate cancer today, he would probably still be alive.  In the last 30 years the medical advancements in treating prostate cancer have grown significantly.  Today he would have had multiple treatment options from brachytherapy and hormone therapy to cryosurgery in combination with radiation and/or chemotherapy. 


But as it is said, timing is everything.


Who knows where we’d be or what we would both be doing, had this tragedy not occurred?  But as I see it, the silver lining in this story is that out of disconnection, reconnection emerges and the pieces of two life puzzles can join together and become whole again. 


Allyn St. Lifer has been a therapist in private practice for over 30 years and specializes in teaching clients mindful eating to determine physical hunger and the point of satisfaction.  She is the founder and director of Slimworks, a mind/body, non-diet approach for managing weight and transforming one’s relationship with food, body and self.  To find out more about Allyn, please visit her website: www.slimworks.com.  She is a regular ShareWIK.com columnist. 

 

Read other Allyn St. Lifer columns here

 

©2011 ShareWIK Media Group, LLC

 

 

In the words of Eduardo Louring, "Love and justice are rooted in the broken heart." Louring runs an unusual ministry for the homeless, Open Door, that offers direct daytime services like showers and meals. By far the greatest expression of its generosity is the authentic offering of love and relationship.


As part of an "Experiment in Living," my 14-year-old daughter, along with a dozen classmates and two teachers, spent a school week on the streets of Atlanta, immersed in the world of homelessness. Other than a safe place to sleep at night (though still exposed to the elements), and the awareness that at week's end they would return to their families and their beds, these kids walked a mile (actually about 10 a day) in the shoes of another (literally). They volunteered at facilities like Open Door, getting to know the problems of homelessness from those experiencing it, themselves.


Upon their immediate return to "civilization," which I was privileged to witness, the lesson these kids shared that resonated most strongly with them was the healing, restorative powers of love and respect. Throughout their immersion they experienced the de-humanizing effects of assumptions and labels. They learned, first hand, what it felt like to be seen for their external circumstances and appearances, not for who they are as humans. 


At the same time, they witnessed the benefit' of 'being loved' on self-confidence, self-esteem, and self-acceptance. Open Door's mission profoundly links those two concepts. When people are treated as human, worthy of love, they are able to receive that love. That sense of self worth, in turn, has a validating and humanizing effect that allows for greater individual success.


It's a powerful message to be sure: people do better when they believe they are worthy.


Life is an uncertain journey for all of us. No matter how well we create our plans or execute them, all of us will arrive in difficult circumstances where we find ourselves wondering, "how did I get here?" or "why is this happening to me?" At those critical junctures in life, success lies in the ability to see beyond our condition to the possibilities outside our 'reality,' and the belief that we have a 'right' to something better.


So what does this have to do with pediatric cancer? After all, I'm sure we could ALL agree that children deserve and are worthy of good health.


While very often kids do feel worthy and deserving, it doesn't take much to shake their confidence. Why do you think we all bring so much baggage into adulthood? Let’s be serious. Kids blame themselves for everything from causing trouble to causing divorce. So kids with cancer run the risk of internalizing and blaming themselves for their illness and the hardship it brings on their families. Reinforcing the message that they DESERVE to be healthy, that they are worth the effort (and more so!), can have a powerful healing effect.


Another risk kids with cancer face is the potentially traumatizing experience of being and feeling 'different.' Whether it be a bald head, a missed term at school, having to miss or avoid certain activities, or undergoing 'procedures' on a regular basis, a kid with cancer -- or any severe medical condition, for that matter -- runs the risk of being seen as the disease itself, rather than as a person experiencing a disease. It can actually have a de-humanizing effect. Separating the person from the disease helps to keep a kid focused on his own value, his sense of self worth.


When we love our kids intensely and vociferously, that alone is restorative. But it pales in comparison to what a child can do to aid in her own healing by believing in herself and visualizing a healthy future. When a child sees herself as loved and worthy, and is therefore able to visualize a better future for herself, she becomes a part of her treatment, rather than a victim of circumstances.


Regardless of prognosis, children can be –  and should be, I venture to say –  empowered to choose how they look at their life, whatever their circumstances may be.  We can help them see that they are loved, that they are worthy of that love, and that they are so much more than their disease.


As Louring's quote suggests, despite the pain of heart-breaking illness, when we look beyond a crisis to see a human being, justice can come from the love we express. My daughter and her classmates learned that while they may not be able to end others' suffering in an immediate sense, they can provide tools to improve their situation with love and respect. And that gift -- reinforcing the belief that people are worthy – is a universal message of hope that surpasses class, race or health status.

 

Elaine Taylor-Klaus is a Life, Leadership and Parenting Coach and the founder of Touchstone Coaching and ImpactADHD™.  She is a regular ShareWIK.com columnist.

 

Read more articles by Elaine Taylor-Klaus here.


©2011 ShareWIK Media Group, LLC 

 

Aug 14

I want to share the experience of a very special man’s journey with the diagnosis of prostate cancer. The Reverend Paul W. Zeckhausen, my wife’s uncle, was diagnosed with prostate cancer in 1992. Six months after his diagnosis he gave a sermon to his congregation and I have borrowed and slightly edited his sermon with his brother’s permission. Following Paul’s words is a postscript from his brother, Bill Zeckhausen.


Paul’s words:


“This past December I felt as healthy as at any time I can remember. In mid-December I had a routine exam of my prostate, casually assuming to be reassured that “everything is just fine.”  However, upon finishing the doctor was frowning and said that it was probably nothing to be concerned about, but he didn’t like the way it felt.  He wanted me to have a blood test known as a PSA or Prostate Specific Antigen.  


I was confident that the blood test would show that indeed there was nothing to worry about. But in fact, the results pointed toward the likelihood of cancer.   Now my own anxiety level went up as more tests were scheduled for the day after Christmas.


I went through the motions of the beautiful Christmas Eve services at church, and our usual family celebration the next day.   But my energy and focus were centered now on my own health. The tests, an ultrasound and biopsy, were positive confirming the presence of prostate cancer.  I was told that it was a slow-growing cancer, and there was an excellent chance that the cancer was confined to the prostate and could be cured by either radiation or surgical removal of the prostate.


Less than a month later I was in pre-op getting ready for my surgery and in very good spirits. Even though I had that dreaded disease, it had been detected early, and in a few hours I would be cured.


My wife and our adult son and daughter were together in the hospital waiting room while I was undergoing surgery.  The surgeon walked in somewhat sooner than expected with the news. “Paul is all right,” he said. “But we did not remove the prostate.  Unfortunately we found that lymph nodes were involved; the cancer has spread.  I’m so sorry,” he said.   “But we will be doing hormone treatments and the good news is that 70 percent of people in his situation live for another 10 years.”


That did not really feel like good news.


I had a roommate at the hospital, Kent, who was a wonderful man whose surgery would take place a couple of days after mine. He came into the hospital the night before his operation, and I introduced myself to him and prayed with him for a good result.  I was wide awake when Kent was wheeled in to our room from the recovery area.   I overheard Kent’s wife telling him that the doctor reported that Kent’s cancer was limited to the prostate. I listened to him telephone the good news to his children that he was cured. That was one of my most difficult moments as I tried not being angry or resentful.


Of course I was glad for him, but I was also overcome with self pity.  I think I had some idea of what it must feel like to be a woman who goes to the hospital to give birth, whose baby is still-born at delivery, and then is placed in a room with other women who have just given birth to healthy babies.


Now, seven weeks after the surgery I am mostly recovered from the operation, though my energy level is not very high.  I want to tell you about a profound religious experience that I had in the hospital while undergoing the CAT scan.


 A dye was injected into my body, but first a technician had me read and sign a sheet of paper that listed the possible crippling or even fatal results from the injection of the dye.  After I signed the waiver and the dye was injected, I was left alone in the large room, wearing a funny looking hospital garb, lying on a narrow cot-like slab on wheels known as a “gurney,” with this very large white semicircular machine towering over me.  I could feel the dye moving in the area of my chest and abdomen as a warm, glowing sensation. All alone in the room, suddenly a feeling overwhelmed me, a profound sense of love for God, something I had never before experienced.   It was a wonderful, powerful moment and I found myself saying, “I love you, God.”   I don’t know whether I said it aloud or not, or why it came so unbidden, so unexpectedly, at that moment. 


In my whole life I have been many times touched, moved by the realization of God’s love, the love of God for me and for others.  That has been very real, very meaningful for me.   I have certainly been aware of the biblical command to love God with all our heart and mind and strength, but I had never felt so convincingly my own love for God.   There was a really deep sense of peace and comfort associated with it.  The moment left as suddenly as it came, and was perhaps a wonderful foretaste of more such experiences.


Another powerful thing for me during the last several weeks has been the enormous comfort of prayer – of people praying with me and for me. I have heard many people over the years say something like: “If you‘ve got your health, you’ve got everything.”  And there’s alot of truth to that. 

But good health is not everything. Bernie Siegel, the renowned surgeon who has written and spoken so persuasively about the power of positive thinking, of love and prayer in healing, once wrote: “A dear friend of mine, Anita, whose husband is ill, said, “When you have your health you don’t have everything.  Good health is easier to buy than good love.   But when you don’t have your health, if you have someone who cares, you have everything.”


I have been lifted up by colleagues in the ministry who visited me in the hospital and held my hand and prayed for my healing. I have received unwavering support of my loving family, of this congregation, of so many within the church and others all over the country who wrote personal notes, sent cards, put me on their prayer lists, brought food to our home, sent flowers, and other gifts. All of this has been meaningful for me beyond what I could have imagined before my diagnosis.


I do not know with any certainty how my health will be. But there are things I do know. I know that I love life more now than before my diagnosis,  that I am enthusiastic about being with people I love, that faith and prayer and a good doctor in whom I have full confidence, will sustain me. And I fully expect to win this battle!


I feel more vulnerable now. I cry more easily and I laugh more heartily.  I am more sensitive to some things and more appreciative of little things, and I am thankful for that.


There is a spiritual that goes something like “Jesus walked this lonesome valley.  He had to walk it by himself.  Nobody walked it for him.”  But you and I are not alone.  Scripture affirms that we are “Surrounded by a great cloud of witnesses.”   We help each other. I consider myself to be a very fortunate person, blessed by God in so many ways and I am thankful for this new challenge.

I want to conclude with these words of Bernie Siegel, M.D.


"The message is to choose life in this moment, not to try and live forever.  Some day when you're tired and sore and want to leave your body, your death will be a healing- not a failure. You will have been an example of how to deal with adversity and leave a legacy of love."


A postscript from Bill Zeckhausen. Paul died in February, 2009, outliving his prognosis of a possible 10 years, by 7 years.  He died on a Sunday night, not of cancer, and in seemingly good health, having delivered the sermon at the UCC church in Suffield, Ma. that morning. He loved ministry and knew that he was loved.  He wasn’t cured.  We’re all incurable. But he was healed.

  

Gerald Drose is an Atlanta-based couples sex therapist.  He is a regular ShareWIK.com columnist. Visit Dr. Drose at Powers Ferry Psychological Associates, LLC.   

More Gerald Drose articles, click here

©2011 ShareWIK Media Group, LLC

Sep 24

The death of Eleanor Mondale Poling, daughter of Vice President Walter F. and Joan Mondale, just two days after the demise of Kara Kennedy Allen, daughter of the late Sen. Edward M. Kennedy, serves to remind us of the tyranny of mortality and its indifference to age and station.


People find rueful satisfaction in whispering about “the Kennedy curse” when yet another young member of the clan dies but the survivors, parents, brothers, sisters, children, have always been real people who hurt and grieve and must cope in the flare of public chatter.   Kara Kennedy was a producer whose work centered on a variety of non-for-profit endeavors in health and recovery.  Eleanor was an actress and artiste of considerable renown.  Both women had battled cancers; both were only 51.


 When I interviewed Walter Mondale for a book just a few months after his defeat by Ronald Reagan in the 1984 presidential election, I came with a grim coincidence.  I had just officiated a day earlier at the burial of a youngster whose parents were understandably inconsolable.  

Mondale was deeply empathetic for the family and told me to call him by his nickname “Fritz.”  


At one point he said, about losing a child, “It’s something I couldn’t simply imagine.”


Joan Mondale, who was not present at this meeting in the legislator’s Washington law office, once worked as a curator at the art museum in my hometown of Cincinnati.  Everything about the plain-speaking Minnesota Mondales is guileless and straightforward.  The former vice president and senator taught me the concept of “critical love” when it comes to true patriotism that is devoid of entertainment values.  He knew he had meager chances of unseating the incumbent Reagan in 1984—particularly since Reagan brought his incomparable, image-making Hollywood skills to the enterprise of the presidency.


“I hated television and knew it didn’t do me any good,” Mondale told me that day.  He also admitted that likely lost the 1984 election the moment he stated that “I will raise taxes.”  He was just telling the truth, he muttered to me.  Every president since then has raised taxes in one way or another but was universally disingenuous about it. 


So you are left with a strong impression about young Eleanor’s household.  The Mondale family has never shed their cold- prairie honesty and their lack of infatuation with flair and theatrics.   The former vice president and ambassador to Japan has been a stalwart liberal supporter of civil rights since 1948, when he was already a protégé of the garrulous but unabashedly populist Hubert H. Humphrey.


But what Fritz Mondale has always been most intensely is a father.  Along with Joan, he surely is walking through a parent’s worst nightmare with his usual dignity and unashamed anguish.


And my God rest the souls of two broken songs, Kara Kennedy Allen and Eleanor Mondale Poling.


Ben Kamin is one of America's best known rabbis, a multicultural spiritualist, NYT Op-ed contributor and author of seven books, including his latest, "NOTHING LIKE SUNSHINE: A Story in the Aftermath of the MLK Assassination."  He is a regular ShareWIK.com columnist.

 

 More Ben Kamin articles, click here 

 

©2011 ShareWIK Media Group, LLC

 

Nov 19

Steve Jobs is only the latest. Over and over again, during the past five years of my cancer journey, I’ve been reminded that I could die from this disease merely by listening casually to the news. Farrah Fawcett, Patrick Swayze, Peter Jennings, Ted Kennedy, Tony Snow, George Harrison, and Dan Fogelberg all died of cancer – many before their time.


In 2007, when I heard Fogelberg died, I listened to his music, especially my favorite, “Nether Lands.” Two lines particularly hit me: “I want to do all the things that I never have done,” and “Where do you go when you get to the end of your dream?”


Each new death hits me like it never did before my diagnosis. And something in each death talks to me. In the case of Jobs, my mind keeps dwelling on the report from his biographer, Walter Isaacson, that Jobs regretted the fact that he waited nine months before getting surgery that his doctors, family and friends had immediately recommended. He tried acupuncture, a vegan diet and herbal remedies.


After my diagnosis, I read dozens of blog posts to the Inspire support community of Ovarian Cancer National Alliance written by women who had the same diagnosis, recommending their favorite “miracle cure.” I write that in quotation marks even though I know that these women take their remedies seriously. Whether it’s shark cartilage, essiac tea or curcumin, these survivors attributed their good fortune of still being alive to something they ingested, something over and above their conventional medical treatments.


Surgery and chemo are pretty much automatic for ovarian cancer diagnoses. But after that, what do we do to extend our lives? We may change our diets. I spent a lot of money getting advice on macrobiotics, bought some of the suggested spices and vegetables and debated whether to strictly adopt the diet. Then I consulted with a friend who had tried the diet. I researched the founder and learned that both he and a family member died of cancer. Next idea.


We know that cancers feed on sugar and some people say women with ovarian cancer should not eat dairy foods. But then again, they shouldn’t eat soy either because of the estrogen. Nor eat fried foods. Everyone seemed to have a different suggestion on what dietary supplements I should take. Some I tried, some I didn’t. I admit that my daily pill popping includes anti-oxidant-strong fruit and vegetable supplements, astragalus, curcumin and selenium, and that’s in addition to a couple of named products that are designed to strengthen my immune system.


I will tell you that I didn’t get any infections during my four months of chemo. Whether or not this can be attributed to my supplemental diet, I’ll never know. Nor do I have any idea whether I’ve survived these last five years because of these supplements.


I remember many discussions about diet with a friend of mine who was also diagnosed with ovarian cancer. One of her friends with ovarian cancer had followed a very strict healthy diet, and she quickly had a reoccurrence. My friend and I both eventually came to the conclusion that yes, it’s preferable to eat a diet full of vegetables and fruit, but we also have to be flexible and allow ourselves an occasional ice cream.


We want to enjoy whatever amount of time we have to live.


But Jobs’ recent death and his initial refusal of conventional treatment, remind me that those of us diagnosed with cancer, or probably any life-threatening disease, truly want to believe that we have some control over our fates. There’s so much that we can’t control, the idea that we can choose among hundreds of alternative medical treatments, finding that which we’re most comfortable with, makes us feel that we’re not totally powerless.


And that’s really important.

 

 

Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. Click on: http://www.caringbridge.org/visit/janjabeneilon

You can read Jan’s blogs here

 

©2011 ShareWIK Media Group, LLC

 

 

 

Dec 28

Not long after my cancer diagnosis, but before I started the chemotherapy protocol my doctor said was necessary, I prepared for losing my hair. The doctor said it would start falling out about 14 days after my first chemo infusion. I spoke with other women who lost their hair during chemotherapy and I researched my options.


Preparation came in many forms. The hardest, of course, was the psychological side effects of going bald. Most of my adult life I’ve had hair that at least reached my shoulders. Although I’d tried short hair, since mine is curly, I never liked the way it looked. I had no idea how I’d look bald.


I knew I wanted a wig and fortunately, the beauty parlor where I’d been getting my hair cut for years, also offered wigs. I visited the specialist and chose a hair color and length and approximate curl level to my own. I wanted to look as normal as possible during the long months I’d have no hair.


Just before I knew my hair would start falling out, I decided to get my hair cut short. That way there wouldn’t be mounds of hair in the shower and on my pillow, and everywhere else. I couldn’t contemplate that image. Not knowing how traumatic it would be to get my hair cut to about one inch, I asked my sister to go with me. Before the woman started cutting, I asked to have my chair turned away from the mirror. I just didn’t know if I could handle watching.


As it turned out, I must have already prepared myself emotionally, because I was not upset at all. In fact, I had fun picking out scarves and hats with my sister. So much fun that when I went home, my husband felt left out, so we went shopping for more hats! This wasn’t going to be as difficult as I thought.


Or, so I thought.


I remember joking about who was going to shed more, my dogs or myself. As my hair started loosening on my scalp, I recall sitting on my deck in the sun and actually plucking the hair whose roots were already weakening. I figured that it would be better for the hair to fall on my deck, then inside on my couch or bed.


I was already wearing a baseball cap. As I became bald – only a few strands held tight over the four months of chemo – around the house I’d wear a babushka-style scarf. In public and at work, I’d usually wear my wig or sometimes a hat. Except when I went to sleep, I always had some head covering.


But honestly, sometimes I would look at myself in the mirror sans covering and feel that the baldness was a straightforward reminder that I was fighting cancer; a reminder that somehow I occasionally needed.


Although women lent me their beautiful scarves, my scarf-wrapping ability left a lot to be desired. I just couldn’t master it. I remember one acquaintance offered to come to my house to show me how to wrap and beautifully tie on the scarf around my head. I agreed. She’d had a totally different kind of cancer, and at that point in my experience, I didn’t realize that all cancer journeys are different – even with the same type of cancer. She told me horror stories of her experience: that I should get my own parking place at the hospital because I’d be there frequently with infections and other side effects of the cancer. Her stories scared me so much that when it was time for her to come over to my house, I backed out. I decided I didn’t want to be around someone who made me feel so afraid of my chemo treatment.


That experience taught me an important lesson. I learned how important it was for me to screen my exposure both to other’s cancer experiences and also to other people’s advice. This education expanded over the years since my diagnosis as I became more confident to make my own choices in how I’d battle, or live with, cancer.


As I look into 2012, I know that I will most likely go through another set of chemo treatments. I’ve done a lot of thinking about how I’d lose my hair again. In some ways it’s harder to face this time because I know how long it takes my hair to grow out.


But I decided that I would handle it differently. I realized that this is my opportunity to experiment and try a hair style and length that I’ve never had! I’m going to go for bold, creative and fun.


No, not purple or red hair, but something entirely different.


This is my chance!


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.


In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year.


Click on: http://www.caringbridge.org/visit/janjabeneilon


You can read Jan’s other blogs here


©2012 ShareWIK Media Group, LLC

Feb 08

After about 10 surgeries (I’ve lost count), it’s getting to be almost routine for me. I’m facing another surgery any day now and, although I know more what to expect, that doesn’t necessarily make it any easier.


I don’t like the idea of having my body cut open. I don’t like losing up to about a week in the hospital and I don’t know how many weeks recuperating. In this case, like an operation in 2006, my abdomen will be cut open. That means stomach muscles sliced. That means no driving for six weeks, lifting anything remotely heavy, low energy and basically, being dependent on others – which as a Type A control freak, is rather unsettling.


It’s true that since I was diagnosed with ovarian cancer and had to undergo four months of intensive chemotherapy, after surgery, I did learn a little bit how to let go. I understood I couldn’t be in charge of everything around me. Although I managed to continue working at my part-time job at the time, I allowed myself to be, I’ll say, indulged.


Thanks to friends and fellow congregants at my synagogue, during my chemo weeks I was provided with full dinners for my husband and myself a couple of times a week. I placed an ice chest outside my front door so that people could drop off food without knocking on the door or ringing the doorbell or, essentially, disturbing me in case I was napping or didn’t feel up to having company.


You can’t imagine how much I appreciated people taking the time to plan out well-balanced dinners, usually beautifully prepared with heating instructions and generally enough for leftovers for lunch the next day. Initially, my husband felt uncomfortable accepting these generous offerings, but I think he even grew to appreciate not having to plan meals, shop for the ingredients and prepare the meals.


Since my last surgery, a bit over two years ago, I also know how to get ready for the hospital stay: what I will need to have with me at the hospital and what I will need at home to make myself more comfortable afterwards. Since before my last surgery, I also now have an updated “durable power of attorney for health care” and a living will. I am making copies to bring with me when I am admitted to the hospital.


Perhaps most importantly, I now have a much better, more knowledgeable, idea of what questions to ask beforehand. I will ask how long I am expected to be under anesthesia; how long the surgery should last; how long I should expect to be hospitalized; how long will the recuperative period be; and what prescriptions I will need to get filled when I return home. That’s just to start…


In addition, I also know that I can make some of the decisions about my surgery. When I had my hysterectomy in 2006, which included a debulking or removal of all apparent cancer cells, I didn’t know that the doctor was going to implant a chemo port into my stomach, or intraperitoneal (IP) cavity. At that point, less than a week after my cancer diagnosis, I had no idea what questions to ask. I just trusted my oncology surgeon. In hindsight, I agree that he made the right decision.


Research indicates that receiving chemo both systemically, through an IV port, and directly into the abdomen works better against ovarian cancer. I also know now, however, that most women can’t complete the whole course of IP chemo because it can be painful. I actually made it through my six cycles of chemo. And I give partial credit to the IP chemo for the fact that I’ve gone so long free of chemotherapy.


But this time, when my doctor mentioned the possibility of him implanting another IP chemo port when he does my upcoming stomach surgery, I decided – no way. I haven’t seen any study that indicates it will have any benefit this time and in all my discussions with my doctor in the past five years about reoccurrences and a new chemo protocol, he never once mentioned that I should again undergo IP chemo.


So, I’m not. And I feel very good that I have control over this decision because, after all, I am a control freak!

 

 

Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.  

 

Click on: http://www.caringbridge.org/visit/janjabeneilon

  

You can read Jan’s other blogs here

 

©2012 ShareWIK Media Group, LLC   

For a species as enlightened as we are, we have some surprisingly closed-minded ways of handling life and death. I mean, we know we’re mortal, we are aware that no one lives forever, and yet we have entire industries founded on postponing the inevitable, prolonging life at all costs. We fight death at every turn, and often consider it a defeat. 


Yet, there is so much life to be found in the dying process. This is not just a pollyanna approach, seeking a silver lining to sadness. In truth, there is opportunity to take advantage of, to appreciate, to find joy and celebrate. 


I called my grandmother “The Mighty Sylvo,” and she called me “gorgeous.” We were a mutual admiration society of two, though we occasionally let my mother and grandfather in to play with us. Let’s just say: we were tight.


I’ll never forget the day my mother called to tell me “The Mighty One,” my other name for that 4’10” master of the Toll House chocolate chip cookie, had been diagnosed with cancer. The news wasn’t good. Her days were measured.


I cried all the way from my office to her apartment, “NO!” screaming loudly inside my head. I wasn’t ready to lose her. I had so much more life I wanted to share with her. It just wasn’t time for her to go.


Of course, all those messages were about me, not her. But that understanding came later.


It turned out, she wasn’t quite ready, either, and we had two more wonderful, intentional years to share with each other. It got harder for her over time. The pain intensified. I still didn’t want her to go, but it was increasingly more difficult to hold onto that position.


It’s crazy the conflict we often feel, wanting to keep our loved ones alive for us, and yet wanting them out of their misery. As the cancer grew, large cell after another taking up residence in her lungs, battling with fresh air for breathing room, the conflict intensified.


That, I believe, is the essence of grief – it is love locked in a tug-of-war with death.


Meanwhile, as the cancer’s foothold became a stronghold, I was busy growing joyfully in a pregnancy I hoped would lead to the birth of my first child. I was anxious – I’d lost a previous pregnancy quite late, an IUFD (intra-uterine fetal death) discovered in a routine ultrasound. It was a pretty harrowing experience for me. Apparently, my grandmother had taken it to heart, as well.


Around the time we prepared to bring in hospice for my grandmother, I was approaching my 20-week ultrasound. The interplay of life and death in my world was palpable. I entered the technician’s theater with a good deal of fear. 


We emerged tearfully, excited and confident in a healthy pregnancy, and drove immediately to my Mighty Grandma, videotape in hand. We wept together, celebrating the potential life that was flourishing.


About 12 hours later, my grandmother died.


Now, all the time I was holding tight to not wanting to lose my grandmother, I am convinced that she was waiting to let go. She wanted to know that all was okay with my pregnancy, and she’d held on until she felt confident she could leave me. I must admit, I have a mixture of gratitude and guilt about that.


When my daughter was born, nearly five months later, I knew from the moment she arrived that she had a guardian angel. Now, 18 years ago today, I am more certain of that than ever before. It’s a good thing, too, cause that kid has definitely needed extra loving, watchful eyes.


When I think back on the loss of my grandmother, and I merge it with more mature experiences when my grandfather died 15 years later, I’ve come to understand a few things about life in the midst of death.


Here’s What I Know Now:

“Losing” people is all about us, about those of us who stay behind. While it is a legitimate perspective, we honor our loved ones when we are aware enough to try to keep the focus on their needs, not ours.

“Letting go” is a job for all parties involved with the dying process. 

           • For those of us who stay behind, we must try not to focus so much on ourselves, and let our loved ones go. 

For the dying, peace comes with the “letting go.”

Our loved ones often need our encouragement, our permission to let go. We don’t have to be afraid to share it clearly, out loud. They know they are dying. It helps them when we acknowledge it and remember that its part of life.

We keep people alive with our memories. It’s not just a saying – it’s true. None of my children ever met The Mighty Sylvo, but you’d never know that to talk to them. As she has been alive in my heart and mind, she has been a presence in my children’s lives. Over time, the pain of her death has absolutely shifted to the joy of knowing … that she would have loved a moment, or a gesture, or even a particular piece of cake.

As such, our relationships with relatives no longer alive take on a new quality, but the relationships remains. Human bonds are, indeed, eternal. 


Elaine Taylor-Klaus is the co-founder of ImpactADHD.com, a virtual coaching community for parents of kids with ADHD. She is a regular columnist on ShareWIK.com and MySpecialNeedsNetwork.com, and writes for “Living Without” magazine. Elaine coaches women and parents from around the country, on the telephone, to live full and empowering lives. She works together with her husband, David Taylor-Klaus, in their company, Touchstone Coaching.


Read more articles by Elaine Taylor-Klaus here.


 ©2012 ShareWIK Media Group, LLC

Jul 24

Years ago, when I lived in Israel, I took an extensive course to learn how to teach the Holocaust. And since then, I have taught various classes to both high school students and adults. I have had the opportunity – now dwindling – of meeting with survivors of the Holocaust. And I have instructed students how to question them.


One question that has always stuck in my mind is: To what do they attribute their survivorship? Without exception, they have responded -- luck. I understand that the answer is partly due to not wanting to take any personal credit for surviving, because that would somehow infer that their loved ones who did not survive were responsible for their own deaths.


I have also spoken with survivors about their feelings of guilt for having survived, while their families and friends did not.


I was reminded of this recently when I suddenly felt a wave of survivor’s guilt. I learned that a friend of mine, who was diagnosed last year with ovarian cancer, Stage IIIc, like me, learned that her cancer is growing again and her doctor has put her back on chemotherapy.


Another friend, whom I actually met because of our shared diagnosis and with whom I have lunch occasionally to compare notes and share our common paths, has been on chemo more than off the last five years. And two of her friends, with whom I have met a couple of times, also have had to return to chemo infusions.


And I feel a sense of guilt. It’s been over five years since I finished my six rounds of intensive chemo. It’s true that my blood test numbers had climbed well out of the normal range before my recent surgery, and that I thought chemo was imminent for me. But my doctor and I agreed that we could wait it out a bit, and fortunately for me, it’s worked well. 


My friends have different doctors who believed that they could not delay their chemotherapy. The women, also, felt more secure receiving the chemo to fight back at their cancer.


I always wanted to minimize the amount of the poisonous chemo I put in my body. I know that the cancer could kill me, but I also know that chemo weakens the immune system and kills healthy cells as well. If the chemo isn’t essential, I’d rather pass.


I tell everyone that I have been phenomenally lucky on this cancer journey, and I whole-heartedly believe it. I do not take any credit for it. I paid more attention to the proper diet than some, but less than others. But all cancers are different, even all ovarian cancers. And our doctors are different. And we are different.


But I still feel somewhat guilty that I’ve been so lucky. I hesitate to get together with these other women who haven’t been so lucky. And when I’m not feeling overwhelmed with this sense of luck, I feel a sense of loneliness. The other women I know can share stories about the chemo room and the difficulties of obtaining certain chemo drugs because of the nationwide shortages. I’m not in that world.


On the other hand, I’m not entirely in the world of the healthy, either. I was diagnosed with a treatable, but not curable cancer. I’ll be living with this the rest of my life – however long that is.


So I don’t really fit in either group. Yet, I really can’t complain. I live in the blessed group of the lucky. 


I am a survivor.


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. 


©2012 ShareWIK Media Group, LLC

Aug 23

There is truly an acronym for everything! But what would we do without them?


And, truly, what would we do without some of these support groups that we only learn about after we have been diagnosed with a disease that had never crossed our radar screen previously?


For me, it was two specific acronym-known support organizations that changed my life after I was diagnosed with late-stage ovarian cancer in November 2006. And, honestly, I cannot remember how I learned about these groups, but I am forever thankful that I did.


The first one was OCNA, or Ovarian Cancer National Alliance. Although I have partaken of various services that they offer, it is their online Inspire (subscriptions@inspire.com) service that was my focus. Subscribers can write journal entries, ask questions, and launch email correspondence with other subscribers.


During the first year or two after I was diagnosed, I worried about anything that seemed out of the unusual. And, of course, I primarily worried whether the cancer would return after I completed my four months of intensive chemotherapy. So, often, it was me writing a question to my fellow sister-survivors, seeking reassurance and possible answers. I always received them. I also read what others wrote, hoping I might find someone who had gone through exactly what I was experiencing. 


I receive emails five days a week from Inspire, providing me with the latest journal entries or questions. One day about 18 months after my diagnosis, I saw something about disability payments through Social Security. I learned that a couple of years earlier, a Compassionate Allowance list was created that fast-tracked approval of people who had been diagnosed with the diseases listed. The list included late-stage ovarian cancer. Having quit my job about six months earlier, I was eager to learn more.


I joined the online discussion, asking several questions and receiving a lot of support. I didn’t quite believe the women, though, who said it would be easy to get approved for disability payments. Still, one Sunday I completed the online application. The next morning, before 8 a.m., I received a phone call from the local Social Security office. I drove to the office with my signed form; I followed up with my doctor’s office to make sure they completed the forms required of them; and I worried.


Long story short, within two weeks, money was automatically deposited into my checking account, and every month since, I’ve received a payment. I figured that the odds of my living to retirement are so low that I am receiving my Social Security stipends early. And the funds have been enormously helpful since I am no longer employed.


Another group that strongly influenced by life is known as FORCE. Spelled out, it stands for Facing Our Risk of Cancer Empowered. The support group is for women impacted by breast or ovarian cancer due to the genetic defect known as BRCA. If a person has the genetic defect, he or she is more likely to get breast or ovarian cancer. Once I knew I had the genetic defect, I became involved with FORCE.


It wasn’t easy at first. I remember my first meeting, at a Cheesecake Factory. Most of the women had had prophylactic surgeries, either removing their ovaries or breasts, or both, because they had mothers or sisters who had died from one of these diseases. I was overwhelmed. They compared notes about plastic surgeons and types of reconstruction. At this point, I had not yet decided to have my own prophylactic double mastectomy.


But as I came to that decision, these women were invaluable, sharing their knowledge and experiences. And I was soon introduced to the practice of going into the women’s restrooms at the restaurants where we met, so one or two of the women could display their chesty works of art. I remember being flabbergasted at the quality of the surgery. It certainly relieved some of my fears about undergoing the operation.


I’m sure there are other acronym-named support groups that would be helpful to me, but I haven’t sought them out. I highly encourage anyone suffering from a medical issue to investigate what groups are available to them. With Internet nowadays, it’s as easy as ABC!


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. 


©2012 ShareWIK Media Group, LLC

Sep 17

It was about six years ago. I remember distinctly that for weeks I was popping Tylenols day and night for the pain I had in my abdomen. I noticed an increasing fatigue. It took me awhile, but I finally made an appointment with my internist. It was a few weeks away, though, because she was out of town. But I was patient. Too patient.


Somehow, though, I knew something was wrong. I had few ideas and the one I had is embarrassing to admit. I went online to check whether females could get prostate cancer. I didn’t think so, and this was confirmed, but I obviously sensed something. It never occurred to me that I would be diagnosed with ovarian cancer.


How could I? I had never heard of its symptoms.


This month is ovarian cancer awareness month and, unlike six years ago, television advertising is blaring the symptoms: abdominal pain, fatigue, frequent urination, changes in bowels, bloating and feeling full quickly without eating much.


I wish I had known then what I know now. I know now that ovarian cancer is called the cancer that whispers because symptoms are too easily dismissed – even by doctors. I know now that if a woman has any of these symptoms longer than two weeks, she should go to a doctor and make sure she is heard.


I know now that there is no early detection test, unlike Pap smears for cervical cancer or mammograms for breast cancer. A full 80 percent of ovarian cancer is diagnosed at a late stage – making it harder to survive. If it is diagnosed early, there’s a 92 percent chance of surviving five years. If the cancer is diagnosed in a late stage, there’s only 30 percent chance of surviving five years. Overall, 50 percent of women die within five years of their diagnosis.


Ovarian cancer is the number one killer out of all gynecological cancers. Although there are now fundraising walks for ovarian cancer, their formations are relatively recent. That’s because there didn’t used to be any survivors. The Ovarian Cancer National Alliance is only 15 years old.


No one knows the cause of ovarian cancer, but research shows that there are ways to reduce the risk: carrying a full-term pregnancy, taking oral contraceptives, breast feeding and prophylactic surgery to remove the ovaries (oophorectomy).


I consider myself lucky. One morning before my scheduled doctor’s appointment, I awoke with severe pain in my right lower abdomen. I thought it might be appendicitis. My husband took me to the emergency room where they took a CT scan. I remember the doctor coming into my cubicle and asking, “Did you say the pain was on your right side?” “Yes,” I nodded. “The CT showed a mass around your left ovary.”


I knew right away that it was cancer. This was confirmed the next day when I saw my gynecological oncologist for the first time. Five days later I had a complete hysterectomy and my cancer journey started.


Like many ovarian cancer survivors, I now want to scream out the symptoms so that other women don’t follow in my path. Ladies, know your body. If you have any of the symptoms longer than two weeks, see your doctor. And when you see a teal-colored ribbon, it’s not a mistaken pink: It stands for ovarian cancer.


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year.



©2012 ShareWIK Media Group, LLC

Oct 05

The term “doughnut hole” lurked somewhere in my future like a partially hidden, but particularly scary, boogey man. Since I’ve been on Medicare, I have heard about this frightening apparition, but I preferred to ignore it. I didn’t want to understand it because I didn’t want it to apply to me.


For those of you lucky enough not to approach Medicare’s “doughnut hole,” essentially it is the gap between Medicare’s regular and catastrophic drug coverage, in which seniors and other Medicare recipients are responsible for footing the bill of their prescription drugs. Of course, it’s more complicated than that, but I’ll try to simplify it.


There are four stages of drug payment. The first, quite simply, is one’s yearly deductible. The second stage is called initial coverage. According to the information I received from my prescription drug insurer, “during this payment stage, the plan pays its share of the cost of your drugs and you pay your share of the cost.” Seems fair. The information my insurer sent to me explained that I stay in this stage until my year-to-date “total drug costs” reaches $2,930. At the end of July, I was just a few hundred dollars short of that --- with five months left to go in the year.


So what comes next? The “doughnut hole” coverage gap. In this stage, although I can receive a discount on some brand name drugs, I have to pay 86 percent of the costs of my generic drugs. In other words, before the coverage gap, the cost of my prescriptions was split between me and my insurer. Once in the gap, I get to pay the full cost!


That is, unless my “out-of-pocket costs” reaches $4,700 and then I would be in the catastrophic coverage stage during which my insurer pays most of the cost of my covered drugs. The gap, then, is the hole between initial coverage of prescription drugs and the catastrophic coverage. And that’s where it can get expensive for the insured.


If you are still in your 50s, you may be in luck. Thanks to the Affordable Care Act, passed under the current administration, this abominable doughnut hole will disappear from the program in the year 2020. 


According to Health and Human Services Secretary Kathleen Sebelius, the health care law makes Medicare prescription drug coverage more affordable. So in 2010, anyone with Medicare who hit the doughnut hole received a $250 rebate. In 2011, people with Medicare who hit the hole began receiving a 50 percent discount on covered brand-name drugs and a discount on generic drugs. These discounts and Medicare coverage gradually increase until 2020 when the doughnut hole is fully closed.


“The health care law has saved people with Medicare over $4.1 billion on prescription drugs,” Sebelius says. That amounted to an average savings of $768. That’s the good news. 

Of course, if the Affordable Care Act is repealed by another administration, Medicare recipients will continue to fall into the doughnut hole.


As I did. 


When I saw that I was quickly approaching that coverage gap, I imagined prescription drug costs breaking my bank account. My insurer recommended that I order the rest of my year’s drug supply from a mail order service to save money. Once I received that recommendation in the mail, I was on the phone. For nearly an hour. The guy I spoke with, David, was patient, letting me ask my myriad questions and giving me understandable explanations.


He compared how much my prescriptions would cost me for a 90-day supply – in my new doughnut hole status – from my local pharmacy versus from the mail order company. I quickly did the math, and reached for my credit card. 


It was scary. Here I was, charging hundreds of dollars on my credit card for prescriptions to keep me healthy during the remainder of the year, and yet, apparently saving more than another one hundred dollars.


For now, I can breathe easier. In 2013, I will start all over again, accumulating my “total drug costs” until I reach next year’s doughnut hole. But it will be another seven years after that  before I can truly exhale and no longer worry about that looming drug coverage gap ever again.


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. 


©2012 ShareWIK Media Group, LLC

Dec 04

It may be due to my age, or most likely the fact that I was diagnosed with a non-curable cancer six years ago, but I now read the obituaries in the newspaper. Not every day, but often. I read the “New York Times” on a daily basis, but it is the Sunday Times that carries the longest list of obituaries.


That came in handy a few weeks ago when I checked to see if there was a listing for the mother of a friend of mine who had died two days earlier. I was going to the memorial for her that afternoon and I knew she was originally from New York and quite prominent. Fortunately, I found it, and was able to cut it out and take it to my friend that afternoon. It was much appreciated. (And his wife noted that it wasn’t surprising that it was me who found it for them.)


Yes, I look over the obits, but primarily to see the cause of death. 


I know that sounds morbid, but bear with me.


Whenever I see a photo of a young woman, I particularly note it. And, as I suspected, the cause of death is often ovarian cancer, my diagnosis. Ovarian cancer is the deadliest of all gynecological cancers. And, unlike cervical cancer, which has the PAP smear, there is no diagnostic test for ovarian cancer. Unlike breast cancer, which has the mammogram, ovarian cancer is rarely found in an early stage, when it’s most treatable.


One obit I read recently was for a woman in her 50s who died of ovarian cancer. She was predeceased, according to the article, by two sisters who died of breast cancer. Sounds like a genetic connection to me.


It’s true that cancers, in general, are most often cited for deaths in the obituaries. Sometimes it’s a heart problem, or complications of Alzheimer’s, but usually it is cancer. And I appreciate when the obit just comes right out and says the person died of cancer. I hate the attempts to sugar-coat it when the obit reads: “after a long illness.” Of course, I also don’t like the oft-used phrase, “died after a long battle with cancer.”


I don’t think the recently deceased, at least in many cases, was solely concentrating on fighting cancer; I think he or she was focused on living. And because I feel so strongly about the wording of an obituary, I decided years ago to write my own.


Although I haven’t started it yet, because I don’t feel the imminent need, I want to have it written, just the way I’d like, before I die. This will make it much easier on my family. And, let’s face it, this way I can control, at least somewhat, what it says.


I will write it not about the years I lived with cancer, but who I am and how I lived my life. I am not a cat person so I won’t write that I’ve lived nine, or however many, years. I call the parts of my life, “chapters.” So I talk about the various, sometimes, incongruous, chapters that I’ve lived. 


For instance, there’s the single life I lived in a downtown high-rise in Chicago, working as an international editor for a publication and flying all over the world to give speeches or meet with my foreign correspondents. That was preceded by the life I led with my first husband, much of which I don’t remember. And after Chicago, there was my exciting, challenging life immigrating to, and living in, another country.


Of course, there are threads that hold this diverse life together, such as family and friends, but I don’t want to spoil the suspense of the story. You will just have to wait to read about the other chapters when you read my obituary. And I hope you have a really long time to wait!


Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. 


Read more columns by Jan Jaben Eilon here



©2012 ShareWIK Media Group, LLC


Feb 11


After my last annual physical, my physician called to say that I had blood in my urine, or what is called hematuria. I think normally she might have ignored it, but given my medical history, she didn’t want to take any chances. She wanted me to see a urologist.


So I did. 


I didn’t realize it at first, but this was the same urologist I’d seen six months before I was diagnosed with ovarian cancer. I’d always wondered whether she should have been able to detect the cancer at that point, possibly saving me from a late-stage diagnosis. She had performed an ultrasound on my stomach at the time. And when I was later diagnosed, I had a huge tumor in my abdomen that had even pushed aside my bladder. So why didn’t she see it?


I debated whether to say anything to her, but when I saw her, I decided to lightly mention it, without any condemnation. I think she heard me. She decided she, too, did not want to take any chances of overlooking anything serious. She said I needed a CT scan and a cystoscopy.


The common causes of hematuria are a stone in the bladder or urethra, an enlarged prostate gland (which wouldn’t apply to me or any other woman), a urinary tract infection or cancer.


I was okay with the CT scan. I’d had dozens of them and although I wasn’t wild about the thought, I knew what to expect. That wasn’t true with the cystoscopy.


The last time I’d had a cystoscopy was on Aug. 9, 1974. I remember this because it was the same day that President Richard Nixon resigned due to the Watergate scandal. (I used to connect my surgeries to something in the news. I had another surgery the day that John Lennon was killed, Dec. 8, 1980.)


I could already determine that the medical procedure had advanced quite a bit in the nearly 40 years since I’d last had one. This was going to be on an outpatient basis and I wouldn’t have anesthesia. Just some numbing jelly. Still, I was scared. Really scared. Both of the procedure and of the possible results.


I remember lying on the examination table debating with myself: Should I have agreed to follow-up on my GP’s suggestion to see a urologist, thereby inflicting additional tests on my body? Why did I put myself through this trauma and stress? On the other hand, wouldn’t it be better to detect something early rather than get another late-stage diagnosis of something like bladder cancer? 


I agonized, and I had too much time waiting for the procedure, so I tormented myself with these questions. And I pictured myself later that day safely, warmly, comfortably tucked into my bed.


It was over in two minutes, with no problems. I mean, no pain, and the results, at least so far, seem excellent. No bladder cancer, no kidney stones, no infections. A more thorough reading of the CT scan by a radiologist is anticipated, but I don’t think they’ll see anything. A copy of the scan will go to my oncologist who hasn’t seen a CT scan of my abdomen for about one year, so he’ll see if anything looks threatening. And I hope he doesn’t.


Later that night, lying happily in my bed, I was amazed how quickly and easily the whole procedure went. Had it been a nightmare, or was I dreaming now, that it was all over and I lay comfortable and safe in bed?


I was also thankful that medical practices had advanced so much in my lifetime, something I’m repeatedly reminded of. Thanks to more highly developed surgery and chemotherapy, I am alive. Thanks to pacemakers, I am alive. And thanks to more flexible, easily insertable cystoscopes, I didn’t need to suffer to learn that I don’t have another cancer. 



Jan Jaben-Eilon is a long-time journalist who has written for The New York Times, Business Week, the International Herald Tribune, the Jerusalem Report and Womenetics. She was a founding reporter for the Atlanta Business Chronicle and was international editor for Advertising Age before she fulfilled a lifelong dream of moving to Israel. Jan and her Jerusalem-born husband have an apartment in that city, but live in Atlanta.

 

In November 2006, she was diagnosed with late stage ovarian cancer and has kept a blog on her cancer journey since December of that year. 


Read more columns by Jan Jaben Eilon here


©2013 ShareWIK Media Group, LLC



Mar 16


I am sitting in a hospital family room and 30 feet away Theo is fighting for life.  Theo is the 15-year-old son of some of my dearest friends.  I should be in despair.  But I can’t find it.

Theo’s medical nightmare began during my last trip to Florida in October of 2011.


We picked Theo up from a soccer game.  He had bruising all over his body. It didn’t make sense and couldn't be ignored.


After multiple visits to hospitals and doctors from Boston to Florida Theo was diagnosed with Myleodysplastic Syndrome (MDS).  It’s the same disease Robin Roberts of “Good Morning America” has been fighting.


Theo went through a bone marrow transplant last year, but his body has been rejecting it.  Accordingly, his immune system has become so compromised he has been infected by a deadly fungus.  There is every reason to believe that it is presently in his blood stream or shortly will be, and the result should be fatal.


Medically speaking, Theo should have been ushered to heaven by now.  


Medically speaking it will happen today or tomorrow.


There is nothing more the doctors can do to attack the fungus. 


Either the medicines kick in in the nick of time or God performs a miracle of healing. Actually, either would constitute a miracle.


As I sit here with Brant and Emily, Theo’s Mom and Dad, we should be overwhelmed with grief and sadness, if not bitterness.


But we are not.  Rather we are experiencing the most curious thing: peace.


There is an overwhelming presence in our midst that is speaking peace to our souls.  It is telling us all will be well no matter what happens.


The presence of peace in this time and place makes no sense, but it is undeniable.


Why is it here?  Prayer.


How can I be so certain?


I’ve experienced this before.


When I lay dying.


I’ve fought thyroid cancer for over a decade and had many surgeries and hospital stays.  During those times people from all over the world have prayed for me. 


And I got what I didn’t ask for.


Peace.


People prayed for healing, but what I received was the presence of the God of peace. 


Since it is not what I prayed for I’ve never adequately appreciated it for the gift it is, until now.


As I sit with Brant and Emily I am overwhelmed with the presence of a peace that cannot be understood.


We pray for healing.  The world is praying for healing, but the gift we have been given is the presence of God.


I’m only now beginning to realize that I’ve been praying for the wrong things even as God has answered the prayer I should have prayed for but didn’t.


I’m 54 years old, an ordained minister and until now I’ve missed the point of prayer and faith.


I’ve been so obsessed with asking God to take away people’s pain; I’ve not understood that there is something far greater than asking God to be a pain reliever.  God wishes to grace us with his presence from the first day of our lives to the first day of the rest of lives.  It is not healing that matters but being held in the arms of God and knowing his presence.


He doesn’t take away the pain, but he wishes to grace us with a presence that transcends the pain and carries us through all manner of pain and sorrow.


How do we get to access such comfort?


Prayer.


It has never been the case that I was miraculously healed, or so I perceive, but it is the case that on those days when the world was praying for me I felt this unexplainable deep sense of peace.  The sense that I am being held in the arms of God and that all will be well, despite looking at the specter of death.


People on every continent, who have different religious convictions, are praying for Theo Menswar and I am sitting here in the hospital, with his parents, being blessed by the answer to these prayers, the presence of God.


I don’t know how many days Theo has.


I don’t know how many days I have.


None of us do.


But I know that what matters is being in the presence of God and that God listens to us when we ask, even as he responds in His own way.


I think he is trying to tell me what what we need is not "healing" but to abide in His presence yesterday, today, and forever.


Nothing else matters. Truly.


What good would it be to be healed and not feel what we feel now: the presence of God?


Keep praying for Theo.







Rev. Dale S. Kuehne, Ph.D. is the author of “Sex and the iWorld. Rethinking Relationship Beyond the Age of Individualism.”  He is a Professor of Politics at Saint Anselm College and founding director of the New Hampshire Institute of Politics at Saint Anselm College. Dale serves the Evangelical Covenant Church of America as an ordained minister, and is presently the Interim Pastor at the Monadnock Covenant Church in Keene, NH.  He a regular ShareWIK.com columnist.  



 

©2013 ShareWIK Media Group, LLC


©2011 ShareWIK Media Group, LLC. All rights reserved. ShareWIK does not provide medical advice, diagnosis or treatment. For more information, please read our Additional Information, Terms of Use and Privacy Policy.

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