My Cancer Quest for Meaning

I would never have presumed to compare my suffering as a cancer patient with that of a prisoner in Auschwitz. It took the thoughtful and compassionate Dr. Arash Asher, director of survivorship and rehabilitation at Cedars-Sinai, to show me the connecting thread.

I had asked Dr. Asher to help me understand how experts view the challenges of longterm cancer survivorship. He discussed physical and mental issues. "Then," he said, "there's the existential."

Ah. Among the zillions of words I've written about cancer, existential had never come up. It instantly clicked into place as that perfect expressioin that had been on the tip of my tongue the whole time.

"Have you read Man's Search for Meaning?" Dr. Asher asked.

I'm reading it now. Dr. Viktor Frankl's mighty work, rooted in his experience in three Nazi concentration camps, reveals that physical strength alone is no guarantee of survival. In Auschwitz, those most likely to survive were those who had the mental will to find meaning in their lives -- in life itself.

Frankl writes that his own life was saved more than once by his power to imagine himself elsewhere. He describes how, being whipped, cursed, and marched in the freezing wind to a work detail, he escaped into a vision of a loving conversation with his wife. "I did not know whether my wife was alive, and I had no means of finding out…; but at that moment it ceased to matter. There was no need for me to know; nothing could touch the strength of my love, my thoughts, and the image of my beloved."

Again, I don't presume to compare the circumstances. Yet during chemo I had similar experiences; my imagination came to my rescue. I supposed I ought to be facing reality. Throughout my childhood, I'd gotten in trouble for daydreaming. Yet when the adversary was cancer, I was sure that my dreams were saving my life.

The whole point behind Well Again is that cancer changes nothing less than our existence. Life beyond cancer can never be the same. So we get a chance to make it better.  We deserve to reimagine and rebuild our lives based on happiness, adventure, education—whatever 'Well Again' means for us.

TO BE CONTINUED......

Emily Jones: Cancer Dancer

After undergoing chemotherapy for six months and facing five more months of same, I found myself having a hard time talking myself into exercising, which is important to my continued recovery.  Sometimes it feels like there are two people living in my body and they are completely different personalities, each fighting for control.  I don’t even think they like each other.

One is a sweet gentle creature who likes to lounge in the world’s most comfortable recliner with a good murder mystery and a bag of Reese’s; the other is a restless, frustrated woman who starts new projects weekly, knowing full well she will never finish any of them.  She rearranges the furniture in her house at least once a month and recently swapped out the dining room for the living room.  Now no one knows where to go when she says “Dinner is served.”

 

With my new expanded living room, I have room for an activity both ladies can enjoy – dancing – but only when the curtains are drawn and no one is watching.  Oh, I also sing like no one can hear.   Not only is it fun and great exercise, I think those squirrels living in my attic have moved on.  They probably got tired of hearing all the stomping around to the tune of “Brick House” which rattled the windows of my old home – literally.

 

I began my dancing career while looking around for a new fitness program that doesn’t involve getting down on the floor or sweating in the summer heat.  I read a report in the New England Journal of Medicine that showed a lower risk for dementia among people over 75 who regularly danced during their leisure time. But what was so surprising about the report is that other types of physical exercise didn’t affect dementia risk — dancing was the only physical activity that made a difference.  Okay, that did it, I’m in!         

 

It doesn't matter what type of dance you choose.  Mine is “free style,” incorporating a bit of a high kickin’ Irish jig, the tango, the bebop, and watusi. It doesn’t really matter so long as your body moves constantly and energetically so that you're elevating your heart rate and burning calories. I draw the line at break dancing because I would probably break something including a lamp or a body part.  By all means, turn the music up to the max and sing along, but you might want to wait until your closest neighbors have gone to work.  

 

I may even install a pole and a disco ball so I can ramp up my routine even more.

Richard Powers, a dance professor at Stanford University, explains that freestyle dance actually requires more brainpower than choreographed routines. You make rapid decisions about how you move, rather than following a predetermined set of steps. Supposedly this helps reduces the risk of dementia more than any other physical activity.

Freestyle dancing is easy to do anytime, anywhere; you don't need a dance floor, a partner, or a wide space. You can dance standing in front of your desk, or on top of your desk for that matter.  You can dance around your kitchen as you prepare dinner. My favorite kitchen routine is called slap dancing.  You simply move your feet around while slapping together a tomato sandwich. 

I’ll never be on Dancing with the Stars but I have worked up a couple of routines I can perform during commercial breaks.  There’s the Omaha Traveler, where I hop around while swinging an imaginary baseball bat. I invented the dance while watching the super regional baseball games in Virginia this week.  

For even more fun, dance in front of a mirror if you can stand it.  I promise you a good laugh, and a better mood will follow you whereever you go the rest of the day.

 

Emily Jones is a retired journalist who edits a blog for bouncing baby boomers racing retirement.  She invites you to stop by www.deludeddiva.com.

Mandela, My Mother, and Baton Rouge

The year was 2000. My 83-year-old mother had broken not just her hip but her pelvis, only we didn't know that, because she couldn't tell us. She was on the downward path with dementia anyway, and the pain meds were making her hallucinate without relieving the pain. She was yelling things like "smooth out that sheet underneath me" and "pull up my socks." She was trying, in other words, to locate the source of that pain and fix it, but the pain wouldn't fix, and my mother would start the whole sequence over again: "Smooth out that sheet. Pull up my socks."

She was in her half-tester bed at home in Baton Rouge, screaming and crying through the nights, and my stepfather had had it up to here with taking care of her. Not that he was so good at it to start with. Her losing her mind scared him so much, I guess, that he went all ex-military on her and kept commanding her to get a grip.

I took my vacation days and flew down to give my stepdad a reprieve. I was going to show him how somebody with real compassion took care of somebody they loved.

I'm ashamed to tell you that within two nights I wanted to wring her neck. The repetition repetition repetition repetition repetition -- the intensity of the pain, the senselessness of the requests -- she worked my nerves and I turned right back into a sulky teenager.

I did see that she was too ill to be home. I called the ambulance and rode with her to Our Lady of the Lake hospital. Finally, finally, they got a morphine line in that got her to sleep. Her lips kept moving as she went under, her fingers gesturing as she spoke to a person or persons in the ether.

At three in the morning she woke up just enough to revive the "smooth out my sheet" routine. I was sleepy hungry angry lonely mean about it: "I'm not pulling your socks up again, I just pulled your socks up!" Finally we both dozed, and when I woke up, the sun was up and a doctor was looking her over. "I told your father she can't be cared for at home," he said. "We're going to need to get her into skilled care."

"What, like a nursing home?" He nodded, and pain hit me so hard my knees shook. One instant, many impacts: Wait my mother NOT GO HOME? no more not go home? And: Her last night of freedom I spent yelling I won't pull up your socks? And then: My god, my plane is leaving NOW.

Racing back to the airport, blind with tears, I kept reciting, Don't wreck the rental car you fool.

The scene at the Baton Rouge airport distracted me from my own drama. A long line of motorcycle police idled in formation outside Arrivals. What, a dignitary in Baton Rouge? Who the hell? Inside I could hardly get anybody to take my keys. Every employee in the airport, it seemed, was lined up and jostling at the escalator, waiting to see whoever had just landed.

"Who is it?" I asked the person nearest me, a young black woman in a Popeye's Fried Chicken uniform.

She said the name like a magic spell: "Nelson Mandela."

And it was. The great man swept through, smiling that smile, and his passage sent a visible wave of energy through the mostly African-American crowd. Baggage handlers, fry cooks, gift shop clerks, janitors. I saw their faces upturned, awestruck, suffused with ecstasy.

Then he was gone, vanished into his limo, with that uniformed police escort roaring into motion, all those white cops riding off to be his honor guard. My hometown, Baton Rouge -- the same Baton Rouge where I'd lived through riots when my high school was integrated, where I'd listened as a child to politicians holler the n-word on TV -- that same Baton Rouge had somehow evolved into a place that knew how to welcome Nelson Mandela.

My mother was going out, and Mandela was coming in. A great soul departing, a towering soul arriving. A small soul, weeping on a plane to L.A., with so far yet to fly.

What do you say to a sometime-y blogger?

A:  Welcome back!  We missed you!

Okay, that's a little over the top. In our digital world, nobody misses anybody because we're all opinionating all the time.  I understand what blog posts are supposed to be: spontaneous, timely, and interchangeable as Cheerios.  If it's a different subject, politics or media or James Gandolfini (god bless him), I'm so bloggified I can't blog fast enough. 

But friends, this is cancer.  I don't want to say anything dumb or insensitive. I don't want to make it worse for anybody.  Neither do I want to look backward, don't want to put us all through the blow-by-blow memoir of my treatment.  I want to say something new.  I want to build a community like we've never had and never imagined.

I mean, blogging is easy.  Blogging something true and memorable that makes us feel better in the face of this life-sucking disease, that's a little harder. 

They say "never apologize, never explain."  But I just have to.  I have to tell you I don't feel big enough to say anything that helps.

All I feel sure of is:  Wherever you are, whatever stage of this roller coaster ride you're on, I wish you joy.  I wish you a tomorrow that's better than today.  I'm on your side and in your family.  I didn't want to be family, of course.  Nobody wants in this club.  But cancer eventually made me understand that I'm so lucky to be here with all of you.  That's why I say, Hey my people.  Sometime-y as I am, I care.

Next post, we'll hear from Southern superblogger Emily Jones.  She knows how to rock this topic.

Anybody else out there want to chime in?

When the curse of cancer becomes a blessing

I just experienced what I hope will be my last chemotherapy treatment for a long, long time. (Forever would be even better.)  Some cancers creep up slowly; others pounce.  Mine swept in like a hungry tiger while I was looking the other way, bemused by commonplace things like thinning hair, loss of memory and just generally growing older. 

Chemo resolved all those complaints without so much as an apology.  It took ALL my hair, left me in a brain fog that made me drop everything I pick up, and it gave me the sudden desire to live to become a little old lady! Funny how that works.

But what has been most shocking was finding that a life threatening illness can be the catalyst for more blessings than you can ever imagine. One of the most serendipitous moments I’ve experienced was last weekend when my community celebrated its annual Relay for Life.  People of all ages came out to honor their loved ones who have died of cancer and to show support for those who are surviving and fighting the disease. 

During the opening “walk of survivors,” I stumbled around the track in awe that perfect strangers would come out on a rainy blustery Friday evening to cheer on a lot of people they may not even know.  I had participated before, but never with such a personal stake in the value of the event which annually raises millions of dollars to fight cancer.  My compliments and appreciation to my friends, Brian and Diane, and all the volunteers and workers from the American Cancer Society who spent months recruiting teams and planning a flawless event.

At dawn today, I sat out on my back porch and breathed in the combined fragrance of maturing mint and rosemary while making a list of all the good things that have occurred as a direct result of illness.  I won’t go into all the minor details - like losing unwanted pounds without a diet, getting a great head of hair (which I hang on the bedpost over night), and  falling in love with those heretofore dreaded green vegetables. The latter is thanks to Margaret Ann Wood, a restaurateur and longtime friend, who introduced me to Goya seasonings which can make the lowly canned green bean taste like the nectar of the Gods. 

The Big C also gave me a bizarre sense of humor.  I still chuckle at the look on that truck driver’s face when I was pumping gas during high winds which blew my wig right off my head and carried it across the parking lot.  He stared in dismay, probably confused by the smiley face a friend had drawn with magic marker on the BACK of my head.  I also got a kick out of the long black “Cher” wig my son sent me as a joke.  One morning I went door to door pretending to be an encyclopedia salesperson and not one neighbor recognized me.  Come on people, who sells encyclopedias these days?  

The greatest gift has been the deeper relationships formed with my family and friends who I often took for granted; the absolutely religious experience of feeling good again after being under the weather;  learning not to judge others who may be suffering from their own set of stressors; and the realization that material things will never provide lasting fulfillment.  That lesson was way overdue, but I’m a slow learner and like they say, it takes what it takes.

Someone once said that the hardest arithmetic to master is that which enables us to count our blessings, but when we do, they seem to multiply.  Oh, and here’s something else to look forward to.  I heard mosquitoes will take one bite out of a chemo patient and fly off to wash their mouths out with soap, spitting all the way.  Ah, Ha! 

Emily Jones is a retired journalist who edits a blog site for bouncing baby boomers who are entering retirement.  She was diagnosed with ovarian cancer in November, 2012.  Check out her blog at deludeddiva.com.

Meet Emily Jones, Guest Blogger Number One!

Hey my people, I'm so excited to introduce you to Well Again's first guest blogger, syndicated columnist Emily Jones.  Emily hails from Mississippi, source of 10 thousand funny stories and 10 million good recipes, most of which she can at least fake. Thanks to a run-in with ovarian cancer, Emily recently joined us here in survivorworld, but that's not the most important thing about her. 

Emily Jones is:  1. Hilarious.  2. Incisive.  3. Guru of her own website, deludeddiva.com, where she self-describes as a "retired journalist and master piddler who is slogging through the new world of culinary delights, gardening prowess and holding old age at bay at all costs."  As the Deluded Diva, Emily speaks to "bouncing baby boomers facing their second adulthood" and often facing the fight of their lives in the form of cancer.

Well Again is lucky enough to bring you a column from Emily Jones twice a month until she gets tired of us, which I hope will be never.

Emily's Well Again column debuts tomorrow.  Read, enjoy, share, and congratulate Emily on kicking cancer to the curb!

Sheep dreams, Seamus...

Hey my people,
Seamus and I duet on his sheep toy. He gets it in his jaws and shoves it against my knee till it squeaks. Then I answer--reach in on either side of his jaws, squeak the toy, draw back, and don't get chomped. Then he squeaks, then I squeak, and so on.
Might sound dull, but what with the teeth, it gets pretty lively.
Not till this week did I realize that Seamus was also using his sheep as a pillow. Does this count as multitasking?

Sequestered to death?

Hey my people,

Thinking about sequestration today. Honestly, is that any kind of name for policy? The word is so meaningless that it continues to resist explanation even as it's grounding airplanes and leaving seniors meal-less and wheel-less—and of course shutting down cancer research.

I've been reading a site called PhysBizTech. (Who knew?) You might want to check out Deborah Cornell's piece on how the sequester stands to damage that most precious asset for a cancer patient: the hope that if we can just hold out, there'll be better treatments before too long.

Here's the link: http://bit.ly/11BfDgd.

Cornell writes, "The federal government is the largest funder of cancer research, and the sequester threatens to cut this funding by almost 23 percent in real purchasing power."

These 23 percent cuts fall just when we're about to solve the jigsaw puzzle.

Cornell explains: "Many grants today focus on basic cellular biology to understand what causes cancer, what allows cancer to spread from one body part to another, which components to target for treatment, genetic mutations that characterize certain cancers...and so on. These are targeted toward finding more effective ways of killing the cancer without killing the patient."

What hurts most is what Cornell writes next: "Unless the large number of people who are affected by cancer ― as patients, family caregivers, healthcare providers, employers and friends ― stand up and tell Congress to get serious about cancer research funding, affected families will be left with few options and little hope."

Austerity is supposed to harm everybody equally, but we know that's not true. In practice, there is nothing so easy as cutting funding for invisible sick people. So what do we do? Are we supposed to storm Washington with an army of people with pic lines and port-o-caths and bandannas? Yes, I think we are. In fact, I suggest we wear our hospital gowns open at the back. Just so we can twirl around from time to time and show Congress the same respect they've shown us.

Thanks to jannoon028 and freedigitalphotos.net for the IV image.

Seamus Friday: Clear my desk and hold my calls!

Hey my people,

It's not easy to clear off a desk here at Chez Well Again.
And when you do, you're apt to find a big yellow dog snoozing on top.

Dancing for Roger Ebert

Hey my people,

Roger Ebert is my hero not just because he was so mighty in the face of cancer. I loved him because as a writer he ENGAGED with what came his way--love, art, death, and everything between. As a critic, Ebert was just what I hope to be, exacting but generous too. If he hated a film, he said so; but he also wished the filmmaker better luck next time. When it came to cancer, Ebert was the finest joycatcher I ever saw. Cancer took his voice; he re-created it. Cancer took his jaw. He kept his smile.

Hey Roger. Thanks for everything. Let's dance.

Israel's awesome new strides in cancer surgery

Hey my people, I dare you to check out this video and then tell me you feel hopeless in the face of cancer. Israeli scientists are already perfecting the tech breakthroughs to heal us. As the tourist slogan says: Israel. Who knew?

Seamus loves sneakers

Bring on the dog shame police--- our dog has a sneaker addiction. From time to time this gives him kind of a Hannibal Lecter vibe as he buries his snout down the nearest Adidas.

Joycatcher moment: car in bloom

Hey my people, check out what spring brought. Light, bougainvillea, Prius: Magic!

Chemo now, heart problems later?

Hey my people,

Considering the toxicity of cancer treatment, it seems like common sense that cancer survivors might be vulnerable to heart disease afterward. New research from Wake Forest Baptist Medical Center confirms the obvious: Survivors are at higher risk of cardiovascular disease than the general adult population.

What's surprising in the study is how few respondents were cautioned while undergoing cancer treatment that cardiovascular problems might follow.

The Wake Forest study surveyed 1,582 participants who had survived breast, prostate, colorectal or gynecologic cancers four to 14 years after diagnosis. Participants were asked to describe their cardiovascular disease risk factors-- smoking, body mass index, physical inactivity, hypertension, diabetes--and to report on their discussions with their health care providers about diet, exercise, smoking, and lifestyle change assistance.

Among the survivors, heart-hostile health issues turned out to be sadly common: 62 percent were overweight or obese, 55 percent reported hypertension, 20.7 percent reported diabetes, 18.1 percent were inactive, and 5.1 percent were current smokers.

Nearly a third of respondents who carry one or more risk factors reported that they had not been counseled on how to get healthier after cancer treatment.

This may be true, but I wonder whether they may have been offered more counseling than they heard. For me at least, hearing cancer mentioned in relation to myself still produces a roaring in my ears that drowns out anything factual. Especially if i'm being advised to do anything I don't want to do.

(Based on an April 17 report from RTT News)

Serena Burla, cancer survivor, unhurt in Boston Marathon

There's no sweetness-and-light story to be had out of this day's horror in Boston. So this post is not that.

Still, cancer survivor and first-time Boston Marathoner Serena Burla may have experienced a blessing in disguise: this elite professional runner didn't finish the course.

Cancer tried to end Burla's running days three years ago. What she thought was an injured hamstring proved to be a synovial sarcoma, according to an April 15 report on the Boston's examiner.com. Surgeons at Sloan-Kettering removed a malignant tumor along with the dominant muscle in Brula's right hamstring. She was told she would never run again.

But she did run--not just well enough to jog around the park on Sunday but to compete last year in the Olympic trials and the New York Marathon. By the time she was invited to run in Boston, Burla was rated number four among US women marathoners.

On Monday, however, the race didn't go Burla's way. For reasons not yet clear, she ended her marathon somewhere beyond the halfway mark. I hope the problem was nothing more than a stubbed toe. But how strange to feel relieved on Burla's behalf. Who knew that one day we might be glad a runner missed a finish line?

Introducing Seamus Fridays: Tales of A Dog and His Girl

Hey my people,

Why am I putting a dog in a blog about surviving cancer? If you've been to Cancerville, you don't need me to explain. The dog is one of my principal Well Again adventures. I've always been a cat person (and our cat Bodhi is a whole 'nother story). But my first dog is all about getting back out into the world, not contemplating, cat-style, at a distance. He reminds me that I'm alive way more often than I do.

Seamus the Goldendoodle belongs to my partner and me but with a few strings attached--we're his guardian home, keeping him happy and healthy until he's ready to sire many litters of puppydoodles. After his romantic job is done, Seamus is ours for good, and we can all get old and creaky together.
Seamus's human grandmother, our longtime friend Sheron, is a meticulous and expert breeder who lives in Colorado. She's interested in wonderful pets, not show dogs, and Seamus may be her greatest achievement yet.
His Mom is Charity, a champion golden retriever; his dad, Sky, is a mix of poodle and Saluki (also known as the Persian greyhound). Seamus is golden-sweet, poodle-brainy, and Saluki-fast. In practice, this means he stole my dinner roll last night, outran me, and was so adorable I didn't care.

You can expect to visit with Seamus and his growing family right here every Friday. I'll give you plenty of medical and practical info on cancer during the week -- but weekends are for fun, and Seamus is my Friday guy.

Who brings the Friday in your life?

Joycatcher Moment: Bee on the Job

Just when you're convinced that bees are about to disappear for good, here comes this guy working a flower like--well, like there's no tomorrow. Happy pollinating, my friend. Don't be a stranger.

Cancer, the Mystery. We, the initiates.

Hey my people,

When you run into friends after you've been to Cancerville, they smile and hug you, but there's a certain holding back. Right? A certain awkward silence that was never there before. You can read their minds, although you don't want to. They're thinking: Now that you're back from the dead, who are you?

In a world where cancer is rarely a death trip, that seems really unfair. Like, I've just been through hell and now I have to comfort YOU?

Well, yeah. You do. Cancer is a Mystery, the ancient kind, with a capital M. It's an initiation into a certain kind of priesthood. People fear you afterward, or put you on a pedestal, or get antsy and say dumb things and spill coffee in your lap. That's just how it is. We're different.

After cancer, we'll cook dinner and watch TV and walk the dog. But we'll never be the same.

The first time I had cancer, I wanted to forget it ever happened. The second time, I was so angry, I wanted to rip the world in two. The third time, though, I opened my eyes and saw that I'm in the world's best company. We've been tested, you and I. We've seen the Mystery, and if we can't talk about it to those who stayed behind, is that really so surprising?

Hey my people: That's how I start my posts because that's how I feel about you. If that seems presumptuous—like, if you'd rather be anywhere but in this club—I understand. But I want to be here if you pass this way again. You can't go BACK home after cancer. But you can live to build a new home up ahead. I'm here to help you find it.

My Dinner with Fran Drescher and Friends

Hey my people,
Talk about your holiday cheer! This week I dined under the stars with the one and only Fran Drescher and her close-knit creative family at TV Land's "Happily Divorced."
How'd I get invited? The famed comedienne from Queens is also a committed cancer activist who graciously gave me a listen about Well Again. Fran answered her own cancer diagnosis with her bestselling book "Cancer, Schmancer." After that, she created the Cancer, Schmancer Foundation, which continues to advocate for better healthcare, stronger awareness of environmental carcinogens, and above all, early detection. (Check it out at cancerschmancer.org.)

Fran stands out among cancer heroes because she can share serious information with a laugh--in her case, a laugh that deserves its own star on the walk of fame.

In person, the laugh and the lady are for real. Like Lucille Ball before her, Fran Drescher is a pro's pro who not only stars in "Happily Divorced" but also writes and executive produces it. "TV's very fast," Fran pointed out. "If you're not playing pretty close to yourself, you're sunk."

After our conversation came dinner, hosted by Fran's ex-husband and forever creative partner, Peter Marc Jacobson. The long table on his outdoor terrace glittered with glassware and candles. Healthy veggie dishes kept coming. Short ribs too. And chocolate. I faced Peter's blue-lit pool; behind me were the lights of Hollywood far below.

The conversation was even more fun than the view. I sat next to cast members Robert Walden, a straight-ahead nice guy who plays Fran's dad; and Tichina Arnold, Fran's onscreen best friend, who enlightened me about her own cause: the fight against lupus, which affects three out of five African-American women. Faced with Tichina, I'd say lupus hasn't got a chance.

And then there was Rita Moreno. One of my personal goddesses -- if you haven't seen her in "West Side Story," don't speak to me until you have -- Rita plays Fran's mom on "Happily Divorced." At 65, Rita is more beautiful than ever.  At least that's what I was thinking until Fran announced that tonight was Rita's birthday. Her 81st birthday. 

I had to laugh at life's endless unpredictability. When I was first diagnosed and the doctors were giving me 50/50 odds, did they imagine that 11 years later I'd be eating coconut cake with Rita Moreno?  Not a chance.  So if you're reading this, hold tight to life. Because even if it kicks you today, tomorrow it will throw you all the joy you can catch.