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

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 Courage to Be Seen, Part 2

Hey my people,

Here's the second unbelievably cool cancer-fighting viral video I told you about:  "Molly's P.INK Tattoo," which came to me from upworthy.com. Click to meet Molly Ortwein, founder of P.INK.org, (P.INK as in "Personal Ink"). After her double mastectomy, Molly elected to adorn her reconstructed breasts with tattoos. Colby Butler, of Unfamous Tattoo in Miami, did the inking on two gorgeous representations of Brazilian pernambuco blossoms, reflecting Molly's love of all things Brazil.  

This story so far is lovely but not groundbreaking, right? Okay, here's the groundbreaking part. Molly has gone on to found P.INK.org -- a nexus that pairs women who want to answer cancer with tattoos with tattoo artists willing to offer their time and talent to help. I hope you'll check out the P.INK Pinterest page. Maybe recommend this idea to somebody you love. 

Brave women like Molly Ortwein and (previous post) Deborah Cohen are confirming what we all instinctively know: This is a momentous time in the wide world of cancer. The big C is losing its power to make us hide and talk in whispers. We're fighting cancer, and we're willing to be seen fighting cancer.

There's a fierceness cancer gives us, and although I bleeping hate the cancer, I love the fierceness. 

Molly is a perfect example. She may cry here and there during this video, but she's not remotely embarrassed about that. She's planning to work those tattoos, honey.  Talking about plans for her next trip to Brazil, she says with a grin: "I am so looking forward to marching my ass around the beach with no top on."

Dancing to Kill the Cancer Demon

Hey my people, meet Ananda Shankar Jayant. When she was diagnosed with breast cancer, she called on her mastery of Indian classical dance to mobilize the goddess Durga to conquer her cancer.  Since Durga kills demons, the analogy could not be better. Here, Ananda tells -- no, shows -- her audience at TED how she becomes Durga, riding the tiger into battle and emerging victorious.

Watching Ananda's dance unfold, I asked myself:  Who is my all-powerful cancer-conquering deity? I know I manifest someone because I feel myself breathing in courage in the parking lot of the cancer center.  I can feel myself putting on armor as I step inside. Where's that armor coming from?

That's my question for all of you, my friends who've walked into a diagnosis or a date for chemo: Who's your all-powerful cancer-conquering deity?  Who do you become when you walk off the elevator and into the cancer center?  Tell us and show someone else how it's done!  

Laugh-Riot Grrrls to the Rescue

"What's the funniest thing that happened to you this week?"

That’s the way most conversations begin for a group of my high school friends who get together at least once a month for some laughter therapy.  We don’t really plan it as “medicinal,” but the feeling of total relaxation after we whoop it up for an afternoon is a testament to the stress-reducing properties of laughter.

We guffaw in the most unladylike manner as we recall our friend who accidentally swallowed her hearing aid battery instead of her osteoporosis pill. We collapse onto the floor laughing about another friend who grabbed a jacket out of his garage to attend a fancy cocktail party.  At the party someone asked if he knew he had a dirt dauber nest hanging on his sleeve.

That same friend accidentally maced himself while driving a borrowed car.  He thought the innocuous little can on the passenger seat was breath spray. (Ha, Ha, giggle, snort.)  

Then there’s the classmate who accidentally dropped a contact lens into the potato salad at a church picnic.  It never was recovered.  

Let’s face it, life can be pretty funny. These stories are valuable little gems we carry in our memories to be pulled up when the world crowds in on us or you get a bad CT scan. 

American journalist Norman Cousins came down with a fatal illness and was given one month to live.  He checked out of the hospital and into a hotel where he treated himself with megadoses of Vitamin C, chased with hours of laughter induced by old Marx Brothers films. 

"I made the joyous discovery that ten minutes of genuine belly laughter had a healing anesthetic effect and would give me at least two hours of pain-free sleep," reported Cousins. Long story short, he went on to live for 26 more years.

Laughter is that delicious sound that occurs involuntarily and bubbles from deep in your soul. It can sometimes leave you breathless and in tears.  I wish someone would package it.

Look, we have split the atom to the nth degree, put men on the moon and mapped our DNA, but no one has figured out how to give us laughter on demand.  Personally, I always get a kick out of America’s Funniest Videos.  With Rebel and Lucky Dawg at my side we laugh hysterically  – even Rebel, who is a bulldog with a perpetual scowl.

We especially love the clips involving pets, small children and people falling down at their weddings.  Ha ha ha, cares forgotten. 

Be forewarned, laughter is highly contagious and may add years to your life.  I guess that makes my friends and me about 125 by now. 

Emily Jones is a retired journalist and ovarian cancer survivor who edits The Deluded Diva, a blog for bouncing baby boomers racing retirement.  She invites you to stop by www.deludeddiva.com.

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.

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!

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.

Meet Jessica: Cancer Road Warrior

"If I fall down, it could kill me, so I don't fall down," Jessica told me -- as we set out on a two-mile walk. Like me, Jessica is a three-time cancer vet. Unlike me, she has complications that threaten her spine.
Jessica's backbone, however, is rock solid. Cancer ended her job, sapped her savings and forced her out of her home, but she's not bemoaning her losses. She and her pickup truck are hitting the road to see America.
I had the privilege of meeting Jessica when she came through LA. To me, she embodies what Well Again is all about. Cancer has done rotten things to her. She's responding by doing things she's always wanted. Jessica's filling her eyes with new sights and her heart with new memories. She's not falling down. She's embracing the adventure.

If you appreciate Jessica's attitude, then how about sending her a shoutout here on the Well Again blog? Better yet, tell Jessica what town or landmark in America you'd most love for her to see.  

On Black Friday, Joycatching means Bargain-snatching

Hey my people, fierce shopping is part of getting Well Again. They tell us to exercise, right? If the Black Friday rush ain't exercise, I don't know what is. So if you're out today in Macy's, Target, Best Buy etc, I say: Take no prisoners! If you survived chemo, you're definitely strong enough to chase down a flat screen TV. When you get home, tell us: how did it go? Send pix so we can gloat with you! Extra points if you're still bald and you leveraged the sympathy factor to get the last XBox bundle.

True story: A bad girl "trying to be healthy every day"

Hey my people,

Meet my friend Gin B, who's dealing with recurrent breast cancer. I would not care to be the cancer cells messing with Gin B.  She is a strong, smart woman, and she's winning: Her numbers are getting better and her hot spots are getting smaller.  (Suck it up, c cells.)  Had we met a few years ago, Gin and I would have bonded while closing down bars and drag-racing motorcycles. We both inclined to the bad-girl worldview, is what I'm saying. In our peer group, nutrition was not a priority.

But these days Gin has been exploring new ways to kick butt.  Like juicing. 

"I'm on this carrot, beet and orange juice kick, and I LOVE IT!" she told me yesterday. That's after her two daily shots of wheatgrass. "Some days I eat french fries, but I just keep trying to be healthy every day." 

I don't think this rules out racing motorcycles. I figure if there's one thing stronger than juicing, it's juicing with attitude.  

What's your experience? Does defiance come in handy? Or does it make your cancer journey harder?

Can I afford to come out about cancer?

Hey my people, Check out The Sickness Closet, a brilliant column in Salon today by my awesome fellow cancer vet Mary Elizabeth Williams.  The subject is: do we let people know we're dealing with the C, or do we keep it secret? 

I mean, keeping it all a secret just can't be good. I get this picture of my trillions of cells trying to fend off the cancer while also pouring out energy to explain my oddly long lunch hours and my blood-test band-aids, and, who knows, whether my wig is on straight. Talk about your strength-sappers!

On the other hand…  Next to the shock power of the C word itself, the second-most-awful C word comes from your insurance company: CANCELLED.  So the closet starts to look pretty good. Except that hiding encourages people to think cancer is worse than it is.  If we're sick one day, we'll be better the next.  We're not dead.

We're alive, thank you very much!

Most of us who come down with cancer go right on living.  For every curve the illness throws at us, we discover new strength and new purpose. The folks who count us out… and those who want us to keep cancer a deep, dark secret… I'm guessing they're really scared of cancer themselves.  Not that I blame them.

But here's the thing. If I'm hiding my cancer journey, how can I help with yours?

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.