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.

 

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.

So apparently the cancer's in the fine print

Hey my people, I just came across a mind-blowing story in Time magazine. It goes something like this. Scientists mapped the human genome a dozen years ago, and the 3 billion base pairs that make up our DNA boiled down to just 22,000 genes in different combinations. That accounted for 2% of the genome. The other 98% got labeled junk. This was clearly incorrect. The only existing substance that's 98% junk is Hostess Twinkies.  

Sure enough, science has now ascertained that the 98% of "junk" in DNA contains the mechanisms that tell the other 2% how to behave. I think this is nature's version of the fine print in the iTunes terms and conditions. You just click Accept, because nobody would read through that mess.  The cure for cancer could be hidden in there and you'd never know it.

Oh, wait. That's exactly what's going on in our DNA. Cancer happens when a cell gets ridiculously grandiose instructions, right? "Live forever." "Never stop growing." "Stand out from the crowd." Like a biological Nike ad that wants to kill you.  That bad advice is hiding out in our genetic fine print.  Knowing where is the first step toward achieving cancer treatments that fix our programming instead of bludgeoning every cell we've got.

And that's it. The cure for cancer. We can't quite reach it yet. But for the first time, we can see it.  It's one more reason to stay strong.  Because your future is on the fast track.

Check out this story for yourself: "Don't Trash These Genes," by Alice Park, in the Oct. 22 issue of Time. Here's a snippet to carry with you:

 

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?

She's baaack

Hey my people, so much going on at Well Again!!!! We're assembling our team, doing the right legal things as we establish ourselves as a nonprofit here to make life beyond cancer cooler for you. Oh...in the box? That's Bodhi, the company Maine Coon Cat. He's not so shy once he gets to know you. More to come...soon!

Catalina Zipline Birthday!

Hey my people, I've been off adventuring and, I hope, making new friends for Well Again. It's time to get back in touch .... And give a grateful Happy Birthday shoutout to my friend Benita. She invited friends (including me!) to ride the boat to gorgeous Catalina Island, and then whoop and holler in the treetops via the Catalina Eco Zipline Tour! Can you imagine? I'll post all the photos my little iPhone can grab.... Now all aboard--- and bring that leftover Zofran you're hoarding. The ocean is choppy today! xo Anne

Obamacare Lives and So Do We!

Hey my people, what a crazy day. Chief Justice John Roberts turns out to be the white knight who keeps us from dragging ourselves back to square one on this gargantuan problem of how to take care of our own in America. Thanks, Mr. Roberts.
We're not home on this by a long shot. The Affordable Care Act is a first step toward the unknown, an action after decades of paralysis. It ain't pretty, but it beats the heck out of nothing at all.
We cancer vets can argue convincingly that the ACA is a lifesaver. If stress makes us more vulnerable to cancer, then it follows that our old model of insurance coverage, based on denial of pre-existing conditions, is in itself a carcinogen. No more. At least not for this round of chemo. ACA is inelegant and imperfect. And for some of you-- maybe me too-- it'll be the cavalry that arrives in the nick of time.
Warmest regards, Anne

Our Well Again team is growing!

Hey my people, please know that folks you've never met are caring about you right now, right this minute. So far your Well Again team has grown to five: two tech genuises, a brilliant life coach; an exuberant designer; and me. Who am I again? I'm your biggest fan.
What are we doing now? Applying for nonprofit status.
What will we be doing in six months? You'll see!
Warmest regards, Anne

Joycatcher Moment: Watts Towers

Hey my people, here's what gave me joy today. Rising from the streets of a poor, tough LA neighborhood, a carnival midway of spiraling, fanciful towers made by one man, Simon Rubio. His materials were concrete, smashed dishes, soda bottles, tiles from all the building sites he worked over a lifetime as a tile-setter. Simon created his towers by himself, building up and around and past his own tiny house. It took him 33 years. He started in 1921 and worked through the Great Depression, World War II, the invention of the atom bomb, the dawn of rock 'n' roll. His tools were a couple of hammers, chisels, pliers, files. By the time he was done, he had no fingerprints. He'd worn them away.
You think miracles don't happen? Oh, but they do.

Joycatcher Moment: Reggie Watts rocks your molecules









Hey my people, here's my joycatcher moment for today. Musician-poet Reggie Watts is OFF THE CHAIN at TED Talks. It's not just his mad musical skills: At one point, he gestures to his body and observes in wonder, "You have the power to move this mass of molecules AT WILL." So true, Reggie. Why do we worry there are no miracles out there for us? We're miracles already.

What are your joycatcher moments? We want to know!

Warmest regards, Anne

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?

 

On Healthcare (spoiler alert! opinion follows!)

Cancer has no politics. We all get that. But much as I might wish to keep politics and health separate—well, I can't, can I? I'm far from the only cancer vet who's holding my breath and waiting to see whether the Supreme Court will strike down the individual mandate—the one provision that could help ensure that we'll be covered if cancer happens to hit us again. IMO you have to be dancing the polka in krazytown to conclude that requiring people to buy health insurance is nothing—NOTHING!—like making them buy auto insurance. 

But we're living in a time where ideology trumps common sense, not to mention common decency, at even the highest level of public discourse. So I'm not optimistic that the Supreme Court will factor into its decision the reality that without real change, all of us on Main Street are one medical catastrophe away from … total catastrophe. 

Chronic illness is not some rare occurrence. You and I have both read the projections that at least one in three of Americans will have cancer in our lifetimes. And so, I assume, have each of the nine Justices. A cancer diagnosis is forever, my people. Our current healthcare debate ignores that. Crying "Socialism!" is a great way to hide what opponents are really saying: Sorry, folks. No room in the lifeboats.

Without a sufficiently large pool of members, no healthcare organization can take care of people who are faced with chronic illness. As I was once told by an uncommonly honest HMO doctor, we're expendable. 

Really? Nah. Not buying it.

So here's what I'm thinking. Just something on my Wish List. If the Supremes strike down healthcare reform, I think I'll copy all my cancer treatment bills and just send the whole stack on over to the Justices.  I'll black out my last name and so on; the important thing is to top it all with a total number—the sticker price of your average cancer treatment.  In my fantasy, everybody who's had cancer in the last five years would do the same. Just gather up your bills, add up the zeroes if you can count that high, slap the total on a cover sheet, and address the whole stack to John Roberts. You can redact everything but the dollar amounts. Imagine the tons of paper raining down! It'll be the June Blizzard of 2012.

Why take the trouble? Because the justices are able to treat all of us out here as a gigantic faceless Other. I would like to interfere with that. Living through cancer costs money, y'all. And trying to match wits with an insurance company that profits by rejecting you is no way to get well again. Everybody knows this. I just think it's good to let them SEE it.

So what do you say? Shall we help the Justices get their heads around the optics and the metrics of cancer down here in the 99%? If you're interested here's where you write. And tell them annewellagain said hey.

Justice (or Chief Justice) (Justice's Full Name)
Supreme Court of the United States
One First Street N.E.
Washington, DC 20543

How's this for gutsy? Aerialist preps for wire walk across Niagara

Next time I go for a blood test I'm taking my inner Nik Wallenda. Ever hear of Nik's world-renowned family, the Flying Wallendas? Death-defying circus highwire performers, famous for working without a net? Nik is the great-grandson of patriarch Karl Wallenda, who invented the Seven-Man Pyramid and skywalked Georgia's Tallulah Gorge before he died in 1978 while attempting a highwire walk in Puerto Rico. Long before that, there were notorious accidents that saw two Wallendas suffer fatal falls and…the list goes on. So why doesn't Nik just hang up the tightrope instead of spoiling for a fight with Niagara Falls? I don't know, but the guy seems fearless despite the odds. I want to get me some of that!

What's Your Survivor Adventure?

Cancer made me hungry for adventure. I had always wanted to sail on a tall ship...and never dreamed I really would. After cancer, I did it. To my own surprise I went through with those strictly hypothetical plans-- booked the ticket, packed the sunscreen, and found myself sailing the Grenadine Islands in the Caribbean. Went scuba diving even! What's the adventure you dream of?

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.