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: Smile, doggone it!
Hey my people, this is not one of those viral funnies made from Photoshop and stock art. My FB friend and real-life acquaintance Sally V turned around in her pickup truck and this is what her dog was doing. For realz.
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.
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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.
Inspired by Science
Hey my people, I just heard what I think is the most optimistic and convincing program yet for discouraging...maybe even preventing!...cancer. This is not me being paid for my opinion; it's me being hugely excited. Much more in future, but today I'll just mention two names: Dr. Lise Alschuler and Karolyn A. Gazella. Their just-published book, Five To Thrive, is all about epigenetics---- which holds that you can actually change the way your body "reads" the genetic instructions it receives from your DNA. In other words, maybe our cancer-ish genes don't have to win. I would personally like to slap my genes silly for all the trouble they've caused me, and I'm thrilled to get the chance.
Again, the names are Dr. Lise Alschuler and Karolyn Gazella.If you'd care for a great big fact-filled shot of hope, get your google going right now. Warmest regards, Anne
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.
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: "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.
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.
So much more!
I've been dreaming up Well Again in my own mind for two years. I dreamed how great it would be to connect with even a few cancer vets out here in Survivorworld. After only two days of hearing your generous responses on our Contact page, I realize I had no clue how fantastic you are. You're SO MUCH MORE amazing than "civilians" know.
It's not just that you have courage. People are forever telling me how courageous I am, which is sort of silly in a well-meaning way. (What am I going to do, NOT run out of the burning building? Maybe you relate.) Our courage is not what people think. It's more like a beautiful defiance we learn as we're buffeted around between recurrence and the fear of remission. What I'm saying is, this is not well understood and it's nobody's fault, but people congratulate us for the wrong stuff.
So here we are with all these insights going on (yeah, a bunch we didn't ask for, but still). And there's nobody to tell!
I say we deserve more!
And from your messages, so do you. Well Again is going to be adding a lot of cool functions, including some you may never have considered. But that's yet to come, and I want to build our community right now. So I hope you'll think about working with what we've got at this moment. Let us get to know you!
You're seeing some of my favorite adventures in our Gallery; please post your own pix and stories at Well Again on Facebook.
And SEND ME COMMENTS on this blog! Y'all are way more interesting than anybody knows. Talk it on up, people! Whatever you care to share will be amazing. I can't wait. More next time.
Warmest regards,
Anne
Welcome to Well Again
I’m Anne Stockwell, founder of Well Again™, a new organization for cancer survivors and the people who love them. Well Again is not about fighting the fight or finding the cure. Thousands of wonderful people are meeting those challenges.
Well Again is about something more mysterious. It's about helping each other find the road back from cancer and into the rest of our lives.
Medical treatment is so set on mapping our progress, you’d think they'd have a map to get us home. But no. When you’re diagnosed, everything happens in a jumble. It’s almost hysterical—like a cartoon ambulance screeches around the corner, and cartoon orderlies jump out and take you off to Cancerville, where amazing people save your life. But then…it's over. The cartoon ambulance spits you out again—Bye bye!—and they’re off to save somebody else’s life, and you’re alone.
What now?
I've faced that question three times so far, and it's always been a gift. Crazy as it seems, cancer filled me with the capacity for joy. It showed me that my life was an adventure, and for 11 years, that's how I've lived it. (Check out my gallery for a few of the wonderful adventures that have come my way.)
Well Again is about helping every cancer survivor get home from Cancerville and rejoin the adventure of life. In my blog, look forward to Well Again updates, photos and stories from cancer survivors, links I love and your content, too! More on that next time.
Warm regards,
Anne