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.

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.

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.

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.  

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?

True story: "Well again means giving more than I take."

Cancer Vets Speak: A Well Again Series

Hello, my people! Here's a tremendous message about life beyond cancer treatment. Thanks for letting me share this. We want to hear your truth, so don't be afraid to join in. Everybody's cancer story is different. Somebody out there needs to hear yours. —Warmest regards, Anne

Gregory's Story

"Three weeks after a year of aggressive treatment for rectal adenocarcinoma, a PET scan showed a golf ball sized tumor. So now I have another year of treatment ahead. I worry about burning out the people who support me. I was strong and athletic, and I don't know what to fill that part of my life with."

What's my Well Again?

"Being well again for me will mean a life without how are you doing? and the kind, loving pats on my arms and back. Well means giving more than I take; when I can ride my bike as long and far as I want; when I can lift weights without someone asking, should you be doing this? Being well will mean running into friends at the supermarket and talking about avocados and children and dogs, not my health.

"Some experienced nurses tell me that cancer patients are the easiest to work with. If that"s true, why are we like that? Is it because we try so hard? Because we're so grateful? I think it's in the way we make peace with our fear, but I can't say for sure."

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