Personal Stories

And God said "GET UP!"

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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.

Rocking the Cactus Castle

Hey, my people,

Here's a bird with vision. See her up there? Staring down the wind, daring anybody to mess with her. I thought she just liked riding this massive cactus in the breeze. Who wouldn't? I'm getting the image of a pirate on a quarterdeck. "Faster, damn me eyes! Put every scrap of canvas on her!" Etc.

Leave it to my pragmatic partner to point out the obvious. "The bird's got a nest in there and she's protecting it." Okay. Still. It's got to be fantastic up in that penthouse of a plant. Those baby birds are going to be hard to please later in life.

We won't be here forever. Not the bird, not her babies. Not me. But just for today, what a view!

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?"

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."

 

The Courage to Be Seen, Part 1

Hey my people,

You know what? We are fighting back against the soul-killing after-effects of cancer, and we are being seen fighting back. I'm thinking about two viral videos I saw today. Both make me cry, not with sorrow, but with joy.

First came the most delightful, not to mention funky, homemade dance video, staged in the OR to Beyonce's "Get Me Bodied" by an awesome woman named Deborah Cohen and the medical team about to perform her double mastectomy. She termed it a Flash Mob and invited funky souls everywhere to join in. Here's how it went down.

 

Just five days after her surgery, Deborah's video has been viewed more than 6 million times on YouTube.  Nearly 200,000 people have visited her CaringBridge page, and many have responded to her request to film their own "Get Me Bodied" videos and email them to her. "I picture a healing montage," she writes. "Are you with me?"

You damn betcha!

 

Talia Joy Castellano. A woman to remember.

Hey my people, I don't want to cough up a lot of bromides about the fact that Talia Castellano is dead. I do want to say this: For me, Talia didn't lose her battle with cancer. Even in death, she won. To you that idea may sound clueless, not to mention tasteless. Death at 13 is an obscenity no matter what the circumstance. But this Florida tween with the million-watt smile was more than a YouTube phenom. She had the mettle of a real star. Talia took on the adventure of her own life. She kicked cancer all the way up and down the block before she left us.

This young woman spent her time abundantly well. She played every card she had, and did it with gusto. She charmed Ellen DeGeneres on TV and displayed her flair for makeup in an ad for Cover Girl. Talia got up from chemo and still had the psychic wherewithal to describe the sight of rain coming at you across a Florida field (see the 2012 interview excerpted here).

Talia said she wanted to be remembered as "that bubbly girl who wanted to do something about childhood cancer." I'll remember you, Talia. No problem there.

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......

 

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!

 

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.  

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.

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?

 

Surviving Cancer in the 99%

Cancer Vets Speak: A Well Again Series

Hey my people, we asked you to tell us: "What do you think is missing from cancer treatment now?" For Jen, it's affordable treatment.  Do you relate?  We'd love to post your story.  Talking with each other is the first step to improving our financial prognosis. —Warmest regards, Anne

Jen's Story

I am a 42-year-old breast cancer survivor of three years. I just lost a bc sister, mother of two, aged 38 — so I'm not really at the peak of a cancer cheerleading wave right now. Sometimes I'm more positive, but the last two weeks have been really, really tough.

But you wanted to know what I think is missing? I think we need truly affordable healthcare and financial assistance for those of us in the 99% and unlucky enough to be diagnosed with cancer. My diagnosis happened while we were already just trying to survive financially until both of our children reach kindergarten; while trying to maintain a freelance design business; while trying to send my husband back to school to obtain a teaching credential; and while just trying to maintain our household and some semblance of normal for us during my grueling treatment.

Why should a diagnosis mean financial disaster?

Having cancer is really expensive if you add in lost income, multi-thousand deductible expenses and additional cancer-related expenses not covered by insurance. It makes me sad and angry that so many of us have to hit rock bottom financially due to illness. It is outrageous that up to 65% of bankruptcies in our country are due to medical-related expenses.

And unless you have already hit rock bottom, you are not eligible for any basic government-related assistance. And even that -- when you are facing a shortfall of $15,000–$30,000 per year during and after cancer -- is just a drop in the bucket.

I am alive, I am able to be with my children, and my children are healthy, for which I am truly grateful. But the financial disaster of being diagnosed with a chronic illness is truly devastating. It has taken us two full years to begin to pick up the financial pieces of our lives.  That has taken a lot of the joy out of a time that should be filled with as much optimism and joy as possible -- to make the most of whatever time any cancer survivor has, and also to help keep recurrance at bay.

It's just really hard [to be optimistic and joyful] when debt is mounting, and making your modest mortgage payment is a struggle every month.  So, that's what I think is missing. Truly affordable healthcare and real financial assistance for survivors.

 

Social Media for Cancer Voyagers

Hey my people, Having a great exchange with Lynn, a new friend on our Well Again page on Facebook. She wants to send pix of her crocuses but she's not sure how to post. Anybody relate???? While the digital world was taking quantum leaps forward, a lot of us  were having cancer treatments that temporarily took up all our mental storage. So now here we are, and it feels like the world is just galloping ahead and how will we catch up? 

What if it's a matter of openness and generosity? We already know that isolation is one of the most painful things about cancer. We already know that the online world is an awesome tool to bring us together. Doesn't it seem like we could figure out a way to help each other master the online basics, so we could reach out and connect?

Anybody care to post on my Well Again wall and tell Lynn in three steps how to post a picture of her crocuses?  

 

Friends Help Friends Thrive

Hey my people, my friend Lisa Gates, a life coach with mad social media skills and a heart of 28-carat gold, took time today from running her own site, The Daily Thrive, to help me with Well Again. Check out Lisa's site and you'll see her generous spirit all over the place. It's this cool team of experts in various fields who are helping women learn more about balance, money, tech, organization, and…the toughest for most of us…negotiation. Lisa, thanks again!

The Magic of February 29

So today has been a gift of survivorship. We've enjoyed this rare leap-year phenomenon, February 29. Some of us had chemo today. Some of us got that first cold-water diagnosis. Some of us got—I love this expression—a clean bill of health! Some of us played with our kids; others, our dogs. A lot of us worried about various fixes we found ourselves in, which is another way of saying that today we were alive. Hope this was one of your good days, wherever you are. 

 

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.