And God said "GET UP!"

I bet none of my friends knew I died.  It happened about two years ago and this imposter has been keeping up appearances – mowing my yard and posting on my blog sporatically to make people think I was doing well.

Well, I wasn’t.  I was a total fraud, only pretending to be alive.  I’d been diagnosed with stage 4 cancer several years ago and had  just been sitting around waiting on my ride to a better place.  In truth I had already died and was stinking up the place.

How would you feel if you’d been run over by a two ton truck of guilt, shame and a bad case of PP (people pleasing)? It was all to the detriment of what I really wanted to be doing with my pitiful life.  And time was running out. Frankly, all that anxiety and chronic regurgitation of old failures and disappointments was probably what made me sick in the first place.

Someone (one of the few I still talk to) woke me up this morning with a bucket of ice water;  Or maybe I wet the bed, I’m  not sure.   But there floating up on the ceiling amongst the collecting dust and cobwebs was God.  And listen, He was steamed.  He told me to snap out of it because He doesn’t want me up there poisoning His heaven with my turgid attitude and pernicious lifestyle.

He was right. I had just up and quit living and didn’t even like my own company.  I buried my cell phone in the bottom of my laundry basket each morning and checked it once a day, rarely returning calls. I moved my favorite chair into a space at the back of my house where no human ever goes and didn’t answer the door while watching season after season of Netflix.  May I also say that Netflix is a poor excuse for living?

Margaret Ann called me once a day and yelled “Where are You? I’m worried about you.”  I couldn’t rustle up the energy to dial her back.

Then I got this message which mysteriously appeared in an email.  It was addressed to the woman “who was the first to  get naked, howl at the moon and jump into the sea.” (Something I have never done but always wanted to.) 

Wait. There was more. lots more.

This is for the woman who seeks relentless joy; knows how to laugh with her whole soul; the woman who speaks to strangers because she has no fear in her heart.  For the woman who drinks coffee at midnight and wine in the morning. and dares you to question it… who doesn’t waste time following society’s pressures to exist behind a white picket fence.  The woman who creates wildly, unbalanced blog posts surrounded by a ferocious fog most of the time. This – is for you.” 

I must tell you the above was loosely translated from a poem by Janne Robinson.  How it got to me I’ll never know, but I think I saw God give me a little wink.  I can’t be sure.  I challenge anyone facing health problems to stand tall and begin to do all those things you love to do and were too afraid to do because of your conventional narrow minded attitudes.

After writing the above in my journal, it was still dark enough outside to go out and howl at the moon. I went out on the porch wearing only a towel and squeeked out a wee little breathy howl.  It wasn’t much but it was a start.

—A guest post by Emily Jones
See more of Emily's writings at thedeludeddiva.com

Buen Camino, dear Jessica.

Jessica Jahnke died two nights ago, in Seattle, much too soon. If you've ever read my writing in this space, you know that Jessica was my role model for courage and defiance in the face of cancer. You won't remember -- but I do -- that Jessica sought me out several years ago. She was doing what she loved, traveling in her Nissan pickup. She was cheerful despite the fact that the truck was pretty much all she had left in the world after her cancer returned, her insurance ran out, and her condo foreclosed. 

Jessica had a plan to walk the ancient Camino de Santiago in Spain, where she also had family. She was not deterred by the metastatic tumor pressing on her spine. "The doctors told me that if I fall down, it could end my life," she said. "So I don't fall down." She told me this in the midst of a two-mile walk.

Jessica did find her way to the Camino. By then she was too sick to walk the distance. She went back home to Seattle. True, she was dying, but no way was she losing the battle with cancer. To struggle as Jessica did, with all the joy and heart you possess—that's not losing.

I spent the day with Jessica not long ago. She was just getting the hang of the motorized wheelchair that had been lent to her. She was delighted to be out of bed. Although her right hand was clumsy -- the tumor that had already deadened her legs was now numbing the hand as well -- Jessica made that wheelchair obey.

Without our friends, Jessica and I would not have met again. Phil Todd, chair of our Well Again board and my stalwart friend, bought my airline ticket. Thank you so much, Phil. The extremely capable and kind Seattle-based cameraman Brian Miller volunteered his day and his world-class equipment to help me film Jessica at her best, as she told us the story of her cancer journey. If you are ever filming in Seattle, please hire Brian and pay him double. 

I asked Jessica what she expected to find on the far side of death. That was the only question she turned aside.  "I don't want to say," she told me with an uncharacteristically diffident smile. "I don't want to be disappointed."

Jessica, if there's any justice, the disappointing part of your journey is all done. I see you on a new Camino full of endless sights and sounds and friends at every albergue. On this Camino, you won't fall down. Not ever.

Photo courtesy of Laurie Masover and Monserrat Riu Jover.

Grout Me Out

Hey my people,

Opinions please: Does a cancer diagnosis bring on DIY fever? That's how it's been for me. My temperature registers in the lower end of the spectrum, I admit: When I get a grand idea, like making a little covered hut out in the yard to house all that exercise equipment we never use, It takes all my energy to buy the list of materials. Every label has to be read and, half the time, deciphered with the help of YouTube or Wikipedia. Is it water- or oil-based? Toxic to children and animals? Long-lasting? Quick-drying? Does it require molly bolts? (I am not interested in molly bolts. The term sounds like a Revolutionary-era sexually transmitted disease.)

If you're like me, you spend a lot of time whipsawed between that cancer-survivor urge to take control of your environment and the chemo-brained reality that you are willing to exert yourself only in short bursts and then only on ideas you've already had.

I do get tired of the half-assedness that plagues all my projects. Also, it's new year's resolution time. So when my nephew-in-law, a professional tile guy, explained how to regrout the kitchen counter, I decided to Do It All the Way.

I was at it for three days, digging out all the nasty-greasy old grout in preparation for the fresh batch. Then came the rubber gloves, the cool water--not too much!--the bucket, the stirring, and, in about two minutes, the frenzied race to the finish. The instructions said to ply the tile float at a nice even pace, just ease that grout on into the crevices. Yeah, well. Not the way this stuff was drying. I wound up tearing around the counter at a dead run, raking big globs of black muck out of the bucket and stuffing it into every hole I could see.

It was like finger painting. It was fantastic.

There was collateral damage, it's true. Talk about the fog of war: There is now a thin layer of gray-black grout all over me, the floor, the dog, and the cat.

But I did it. No pile of unused supplies taking up permanent residence in a corner until I forget what they were for. No big swath of countertop left undone, with the promise to resume "next weekend," meaning "never in this lifetime."

No, for once I followed all the way through. That's what I told my nephew.

There was a brief silence on the phone. Then he asked, "You regrouted the whole kitchen?"

Lady Lymphedema's Birthday Blog

(ED NOTE: Not my legs. Believe me.)

Hey my people,

Here we are at my birthday, December 22. This is a big one. Actually, as the astute blogger Lisa Bonchek Adams points out, they're all big ones once cancer has entered your life. But this is a flip-the-decade birthday, y'all. This is me getting to say I've somehow lived thirteen years since I was first diagnosed with ovarian cancer. I've had all that time to grow, change, rant, cry, love and learn.

I haven't wanted to complain on this blog, because considering how much life I've saved up, how rich I am in memories, complaining is just bad manners. But just this once, since it's my birthday, please indulge me. 

So I dropped a heavy box on my foot in September. It hurt like hell, but I figured that's what I get for cleaning out the storeroom when it's 95 degrees. Couple days later, I look down and holy crap, my foot and ankle are all swollen. Mrhuuhhh?  

X-rays, orthopedic boots, hot packs; nothing broken, says the podiatrist. Once we've eliminated hairline fractures, he looks at my chart, sees that December 22 birthday approaching, and goes, ah, wink wink, at this age we don't heal as fast as we used to. This was inarguable but also, it turns out, irrelevant.

I found out I had lymphedema only after I started an exercise program at my alma mater, Cedars-Sinai. Unlike the podiatrist, the cancer folks knew what to look for when they saw my by-now-mild swelling. Thanks to their sharp eyes, I'm lucky enough to have caught my problem early.

It still sucks. I'd gone 13 years without pelvic lymph nodes, no problem. Then some idiot, probably me, packed the storeroom and neglected to post avalanche warnings. All it took was one injury, and there's cancer, up in my face yet again, delivering another of those little insults that make it such a pal even after it's in remission.

Now my leg is swathed in bandages out to here, and will remain so for the next several weeks. Then I get fitted for my new style statement, a compression garment. Excuse me, what? Yeah. A compression garment. Like Spanx for your foot, for life. 

On the other hand, behold the power of words. Spanx for your foot. Doesn't sound bad when you write it, does it? Sounds like something you might buy at Macy's to complement your tankini. Maybe my compression garment will make me look svelte. Ten pounds lighter. No cankles here!

Or maybe lymphedema just sucks. Regardless, even if a compression garment is the last birthday present I'd want, it is my birthday. I made it to 60, and I'm celebrating.

The glory of the everyday: "Make Our Garden Grow"

Hey my people, when I came down with cancer, I had a powerful weapon on my side: I already believed that even life's smallest moments were worth fighting for.  This song is one of the things that gave me that idea: "Make Your Garden Grow," from the musical Candide. 

Who's Candide?  He's one of the dumbest, numbest, most gullible characters in the history of storytelling—basically, an 18th-century Forrest Gump.  Candide maintains his blind optimism throughout a fantastic series of disasters that include war, shipwreck, the Inquisition, and prostitution (endured by his girlfriend Cunegonde, who gets quite a kick out of it—but that's a different song). 

When Candide finally wakes up and sees what a fool he's been, he sings "Make Our Garden Grow." It's the climax of the show, and it's hair-raising. The lyrics are about doing a simple day's chores—baking bread and chopping wood. But wait for the third verse, where those homely tasks are elevated in a rush of music that would flood a cathedral:  "We're neither pure nor wise nor good/ We'll do the best we know/ We'll build our house and chop our wood/ And make our garden grow."

In two weeks I hit the cancer center for my six-month checkup.  I take the blood test and wait for the result.  I don't like it and I don't have to.

But today I grouted tile, fed my handsome dog, and listened to "Make Our Garden Grow."  I'll take this day with me when I go.

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......

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.

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.

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. 

Joycatcher Moment: Red Leaves, Green Okra

Hey my people,
Cancer taught me to be a joycatcher, and even though it's hard to explain your own joy to anybody else, I keep trying. Because joycatching is helping to keep me here, and I think it could help you too.
This weekend I drove to a memorial service. Yes, it was for a friend who'd died of cancer, although nobody in his right mind would say she lost her battle etc etc. That woman had more fight in her than the Crips, the Bloods, the Marines, and the World Wrestling Federation. I think she just got tired and moved on.
Afterward we found ourselves walking down a sunny street where red leaves danced, ending their journeys in style. We ate Burmese food, our first ever -- new tastes and smells and reasons to celebrate. Life was good. As it always is.

Happy Dia de los Muertos! Because why not?

Hey my people, here in L.A., it's not just Halloween we're all getting ready for. No, in this territory that once was Mexico, we're all about the Day of the Dead. This isn't maudlin and it isn't weird. It's Halloween with the mystery left in. It's a time to remember all the ones we love, and by remember, I mean party. The Dia de los Muertos tradition centers on the creation of figurines that can be scary or endearing, like this esquelato (skeleton) made by kids at a local elementary school in tribute to Michael Jackson. In a blog about life beyond cancer, why am I bringing up such a dicey thing as, you know, death? Because it's good to remember that whenever death comes, it might very well be a party. Why not?

True story: "Cancer is with me every day…"

Cancer Vets Speak: A Well Again Series

Hello, my people! You've been sending me amazing stories about life beyond cancer treatment. Thanks for letting me share them here. We want to hear your truth, so don't be afraid to join in. Everybody's cancer story is different. Somebody out here needs to hear yours. —Warmest regards, Anne

Liz's Story

"I'm a 35 year old breast cancer survivor, diagnosed in August 2009 at 32. Just at the time when seemingly every woman my age I knew was having babies, I was having chemo! It was really hard to stay cheerful at baby showers. I've really worked hard to find my new normal and to embrace the life I have, but cancer is with me every day and always will.

"My number one cancer pet peeve is (and was) war metaphors: "kick its ass," "you're going to beat this thing," "he's a cancer warrior," "she lost the battle'" etc. Like it's just a matter of trying hard enough or something. I know people mean well; I guess that's why it's more of a pet peeve than something that truly enrages me.

Disclaimer: Well Again does not give medical advice. For cancer advice, see a doctor.