Creating my reality in the Cancerverse

Hey my people,

“Reality is the leading cause of stress amongst those in touch with it.”

That quote, spoken by the great philosopher Lily Tomlin, is a founding principle of my work with Well Again. Let me explain.

We cancer people don’t take strength from our community. This has bothered me from the start. I could never understand why, when there are so many of us, we don’t look to each other for friendship, understanding, and the occasional dance party.

What are we? Chopped liver?

Actually, yeah. Kind of. Our medical caregivers group us by the organ or system they dissected: we’re breast or prostate or colon or whatever. We never see each other out in the world, living our lives. We never meet each other as people. This is a shame. If I’m going to be in a club, I want to be known for something other than my sutures.

For many of us, our medical treatment, bad as it is, is the least upsetting thing we go through. We don’t say this, but it feels like cancer attacks more than our bodies. This illness comes at us at a soul level. It undermines our sense of ourselves in the world. It wrecks our reality. Not just once, but again and again.

This is the kinship we don’t talk about. I don’t care how many breakthroughs science has made; the word cancer still hits us like a baseball bat. Over and over, every scan or procedure or visit, we brace ourselves for The News. Even if it’s good news, we’re exhausted afterward. (After 15 years of this, I refuse to go home from a scan without stopping for a chocolate shake. There’s gotta be some justice.)

 ...Want to read more? Check out my guest blog at clearidmonitoring.com

Tell em Lily sent you. 

 

Hey my people! Here's to us.

"Hey my people." That’s how I started my Well Again blog five years ago. I chose those words because I wanted you to know I’m different. I’m not a doctor or a social worker. Not a hospital caregiver whose job is to say the proper words and no more. Nor am I that other kind of professional we meet on the cancer voyage: I’m not a faith healer, conspiracy theorist, or lifestyle evangelist.

I’m something else. I’m a storyteller. We don’t usually experience cancer and stick around to tell about it. We run away the first chance we get, which proves we’re saner than people give us credit for.

If I’d only been diagnosed once, I’d still be on the lam like everybody else. But my cancer kept coming back until eventually I realized that it was a powerful change agent in my life, and I loved some of the changes.

Do you have a knack for joy? Do you notice joy coursing through every capillary and exploding through your fingertips? I do. My time with cancer made me a joycatcher. That’s my word, but you get it. I learned to dive into the joy of small moments and save the memories for later.

There is no describing how wonderful it is to eat on the first day you truly feel good again after chemo. One night I sat in a tiny Italian restaurant and they brought me hot bread and a bowl of pasta e fagioli soup. Ten years later I can still smell the white beans and see the steam rising from the spoon.

If I’d rather think about something else while I’m in the doctor’s waiting room, I can retreat into the memory of that soup, or a million others just as delicious. The journey is imaginary, but the comfort is real. That’s the power of stories.

When I was first diagnosed with ovarian cancer, in 2001, I regarded the experience with horror. In the oncology waiting room, I looked at the rest of you like you were…I don’t know what. Lab specimens maybe? Not people, and certainly not people like me, because this was not my story. I made it through treatment with a better result than anybody expected, and back at the magazine where I worked, I got busy turning my cancer trip into a tall tale. I made other people laugh, but my main audience was me. I wanted to be Brave Girl Who Beat Cancer.

I thought I had it made, too. Four and a half years went by. Then, in 2005, there was a little hop in the number on my tumor marker test. The number climbed and kept climbing. A year later, I was back in surgery and chemo and, forget the heroics, I was in a rage. Not just scared but mortified, ashamed, like I’d been impersonating a celebrity and now I was busted. My stories at this point turned black. Being a model patient hadn’t kept the cancer away, so I thought, The hell with this, I’ll do what I want.

What I wanted was to work like crazy on my career, and I did. If I couldn’t succeed at cancer, at least I could defy it. I remember standing at a conference table, bald, telling a group of startled young executives, “I’m not going anywhere!”

Aside from the Joan Crawford overtones, this big speech turned out to be the exact opposite of what happened. Six months later, my company was sold, I was out of a job, and my cancer was back. This time I thought, I’m going to die.

I started to change. With death coming, I got patient enough to ask about what might or might not be coming next. I made friends with other travelers on the cancer voyage. I became a person who was capable of showing up for friends as they died.

At some point, it dawned on me: This is my story. This is my tribe. These people, with the guts to stand and face this invisible minotaur, cancer—why would I want to hang out with anybody else?

As per usual, my predictions about my future were wrong. Thanks to my brilliant doctors and amazing advances in treatment, I’ve survived long enough to learn that cancer changes us for good. Now I work with my tribe, to share what I’ve learned and help people like us discover our own authentic pride and meaning in this voyage.

At this moment, 14.5 million of us are living on beyond cancer. Our story is greater than we know.

I’d like to hear yours. I invite you to write to me here and at clearidmonitoring.com, where I blog each week. Clear ID Monitoring is a groundbreaking liquid biopsy by Cynvenio Biosystems.

Happy holidays to Healing Odyssey!

I can tell you the day I started getting Well Again. It was 2010, when I signed on for an "empowering retreat" called Healing Odyssey. This amazing and innovative program for women cancer survivors was designed to reboot our physical confidence while jump-starting our emotional and spiritual recovery. It sure worked its magic on me! 

The founders of Healing Odyssey were two "ordinary" women working in cancer care--an oncology nurse and a social worker.  They had both seen that the cancer aftercare groups they facilitated just didn't give women a sufficient kickstart to get them dis-identified with their past, i.e., their identities as cancer patients, and reconnected instead with their lives going forward.  One of the biggest misconceptions I know is the idea that the trip home from Cancertown is automatic.  It's anything but.  Donna Farris, the surviving founder of Healing Odyssey, saw this and committed to designing a retreat program that could clear the way and provide a wonderful community experience too.

It's impossible to overstate the genius of Donna's idea and the depth of commitment she and her team have displayed SINCE 1994. That's 22 years of workshops, outreach, fundraising and generally making-a-way-out-of-no-way. 

You can donate to or volunteer for Healing Odyssey, and you should.  Check them out at healingodyssey.org

BACK ON THE BLOCK

It was a true loss to the cancer community when Healing Odyssey lost funding and had to suspend operations a couple of years ago.  But it was AWESOME when a philanthropist came forward to help Healing Odyssey get rolling again.

Here's HO President Donna Farris reading the letter that moved him to action.

 

Shake a broom with these bad Schwestern!

So we all have our bucket lists. Mine is heavy on parties I want to go to. Not red carpet parties. I've been to those. No, parties like THESE, with people shaking their asses just because they can. For maximum therapeutic value, dance with this video every morning, then tell cancer to frack off. Don't forget your warty nose!

Gene Wilder: the man with the moves

YouTube is all about Gene Wilder today, with his "best of" clips wreathed in loving comments. Lots of cancer-community people, including me, are picturing an uproarious reunion between Wilder and his wife, the great comedian Gilda Radner, who died in 1989 of ovarian cancer. I know, because thus far I've outlived that same cancer, that Gene and Gilda were loved by a generation of fans who are now seeing our own third acts right around the corner. Probably there are many people who don't know that, after Gilda's death, Gene took part in establishing Gilda's Clubs, still thriving and still providing a warm gathering place for folks on the cancer ride, along with their families. Another thing even Gene's fans may not remember: He was never funnier than when he was dancing. Take a look.

Bette Midler: the master at work

Back when I was working as a journalist, Bette Midler was my favorite celebrity interview ever. Brilliant woman, brilliant entertainer. So pleased to come across this clip again. I was lucky enough to see this performance live, and it still plays as fresh as ever. Bette has the greatest talent of all—rarer than just music or dance. She knows how to get the most out of a moment. She invites us to drink it fully, in all its joyful/sad/fleeting/timeless beauty. In my Well Again memory bank, this has a special place. Here's how the masters do it. Enjoy.

First edit of our film!

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Hey my people, 

It's been 10 months since we crowdfunded our short doc, "We Are Well Again." 

Today I saw a first rough rough cut, and I love it. It proves that cancer turns us into terrific badasses. We might look all normal and everything. Don't believe it. We are alive, loose, and fierce. 

Join our email list. I want you to be one of the first people to see the film!

Virtual/ Digital/ Dynamite

Hey my people, 

I just went to the future for a week. The 2016 Digital Hollywood summit gave me the chance to hear from dozens of seers who are remaking entertainment, marketing, and...medicine. You may know that virtual reality headsets are turning up all over the place (thanks, Google Cardboard), but I bet you don't know that if you "transport" a burn patient to the Arctic via a VR headset, that patient copes better with pain. I'm thinking maybe in a few years, we'll have VR headsets in infusion centers. If it distracts me from chemo, count me in! Meanwhile, check out these apps if you haven't already. 

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Attack of the Vitamix

Hey my people.

So, juicing. Antioxidants. Natural goodness. So easy when the Vitamix demonstrator guy does it. All that cancer-fighting nutrition, and no matter what you throw in, it comes out tasting like bananas.

Today I decided to juice my way to Well Again. I dumped in some ice cubes and a tub of raw spinach and jammed on the power. The noise was awesome; the blending, not so much. Just a grayish band of ice and a swirling green mulch. Still leafy. Where was the whirlpool of ice-creamy goodness climbing the sides of the pitcher?

I shoved the plunger down to speed things up.

THWACK ACK ACK ACK ACK! Instant, terrible uproar, like fighter planes strafing my kitchen. I lunged, hit the Off button, lifted the dripping plunger. A chunk of the tip was gone. A green rivulet oozed down where the pitcher met the base. I had cracked the plastic in a long slash starting all the way up at the old spinach-mulch line. 

I cleaned the thing out and made a new blend, which probably contained bits of real blender.  On the plus side, it did taste like bananas.

 

 

 

 

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.

Our Well Again movie is fantastic. Now help us reach our next goal. MORE FUN, LESS FEAR!

Hey my people,

In the last month, my film director, Mark Wolf, and I have been privileged to meet many extraordinary people who are sharing what it's like to embrace the adventure of life beyond cancer.  I am humbly grateful for this work and for the friends, family, healers, and thought leaders who have shared their gifts with us.

Well Again has been years in the making. Now we're ready. We spent lots of time trying to define "Well Again." Nothing clicked until we realized: It's our job to ASK, not tell.  

Our question became "WHAT'S YOUR WELL AGAIN?" And the amazing, moving, inspiring answers started coming our way.

Our first film will be released online for the holidays.  With your support, we will continue to shoot extraordinary encounters with new friends and old. 

Our heartfelt thanks to our FOUNDING DONORS, who made this film possible. Please follow their example!

MAKE YOUR TAX-DEDUCTIBLE DONATION  on our TAKE ACTION PAGE. We need your contributions and nothing is too small. Remember we're tax deductible.  

AND PLEASE DONATE YOUR IDEAS. What's that passion, that mission, that moment in your life where you're doing something you love so much, there's no room for fear?  TELL US YOUR WELL AGAIN, because it just might help someone else find their Well Again too. 

 

Mark Wolf on the job. The man never grumbles. Imagine!


Survivor Superstar: Terri Wingham and A Fresh Chapter want you!

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When I first read about Terri Wingham, I had this crazy deju vu, like: This woman must be inside my head.  She believes, as I do, that travel may be the most powerful way to jump-start your life beyond cancer. And she has created what to my knowledge is the very first organization that offers travel for survivors. Terri's nonprofit, A Fresh Chapter, puts together "meaningful travel" expeditions -- big trips that allow cancer survivors to reconnect with themselves through volunteer work.  From now through September 17, Terri's accepting applications for her next India Odyssey, in March 5–19, 2016. 

Interested?  Here's Terri herself to tell you more.

1. What gave you the vision for A Fresh Chapter?

In 2009, at the age of 30, I was diagnosed with aggressive breast cancer. Friends and family rallied around me during the early days of treatment, but after 3 surgeries and 4 rounds of chemotherapy, the support had waned and I felt a tremendous amount of pressure to "get back to normal." I had no idea how to return to my life - let alone to the person I'd been before the diagnosis. I found myself grappling with unexpected emotions of sadness, fear of recurrence, survivor guilt, and anger.

I didn't want to stay in that dark place, but didn't feel like a traditional support group was for me. In search of inspiration and something epic enough to overshadow cancer, I had a vision of volunteering in Africa. Although at first it seemed impossible, I couldn't shake this dream. With the support of family and friends, I was able to fundraise enough to spend 6 weeks volunteering in an underfunded daycare outside of Cape Town. This experience changed me forever and set the stage for helping other people impacted by cancer heal the emotional scars of cancer through volunteering and meaningful travel. 

 

2. Why do you think travel is important to survivors?  And why pair travel with volunteering?

Cancer can rob us of our confidence and turn the world from a friendly place into a threatening one. Thankfully, travel opens our eyes to the broader world and reminds us of the possibility of new adventures. In a world where more people are surviving and/or living with cancer, it's so important to help build bridges from the isolation of disease back to meaningful experiences. To help people connect back to the world and back to themselves.  

Volunteering helps us move beyond feeling victimized by the disease to feeling like we still have so much we can contribute. It also gives us fresh perspective. I believe that when we have the opportunity to form meaningful connections with other people who are dealing with their own challenges of poverty, access to clean water, HIV, etc, we begin to see our own stories of struggle with new eyes. Developing connections with other people who know hardship, but who also demonstrate resilience, can remind us that we can survive and thrive through circumstances beyond what we would have ever thought possible. 

 

3.  What have you learned from cancer?  About the world and about yourself?

I won't say that cancer is a gift. I wish I hadn't had to experience all of the pain of the disease in order to also experience growth. Unfortunately, like all adversity, it bludgeons us with challenges, but also encourages us to broaden our view of the world and of ourselves. After my diagnosis, I was angry for a long time. Angry that cancer had robbed me of the vision I had for my life. Angry at my friends who were getting married and having children while I was losing my hair and my breasts. But it was only when I was able to give myself permission to grieve the death of some of my dreams that I started to be able to imagine new ones. 

I have learned that life is about contradictions and learning to live with both joy and pain, fear and excitement, ease and struggle. There is no perfect or magic life. We can only choose to make meaning out of what is in front of us and welcome opportunities to grow. 

 

4.  What one message do you want to give cancer survivors?

I wish I had met someone who could have looked me in the eyes and said, "Terri - this is going to be messy and grueling and awful. You're going to emerge from the trenches of treatment and feel like a shadow of your former self. This disease is going to poke holes in your confidence, challenge you to learn to love a scarred body, and open emotional baggage you thought you had long since packed away. But lean into the discomfort. Lean into the sadness. Cry. Rage. Punch pillows. Because I promise you, on the other side of this marathon, you will find new opportunities that you can't yet imagine. I know this might scare you even more. With new adventures and opportunities come new fears and new uncertainties. But perhaps the words of Rainer Rilke will give you comfort:

You are so young. I want to beg of you, as much as I can, dear sir, to be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”

 

5.  What's your Well Again?

My Well Again is giving myself permission every single day to reinvent, reimagine, redesign my life. To learn from the mistakes I made the day before and continue to challenge myself to find time - even amidst the intense schedule of building the Fresh Chapter Alliance Foundation - to continue to dream. To lean into more of what brings me joy. To surround myself with a tribe of people who share the big dreaming spirit and who are lit up by life. 

After all, it is only when we feel lit up that we can ignite something in others. 

Click here to learn more about A Fresh Chapter's India Odyssey in March 2016.

Call me #twidiot.

Hey my people, 

You know how they talk about chemo brain?  When you're just a little bit off?  When your windmill is missing a blade?  Yeah, I have that, but chemo's not the culprit.  I had it in kindergarten.  At age 7 I took to eating my egg-on-toast balanced on the back of my hand.  I had a lot of fails with that system, but I guess I wanted more suspense out of breakfast.  In school I once went through fifth period before I realized my skirt was on inside out.  To this day, I can say the wrong thing and be just as surprised as you when it pops out.  It's just part of my makeup, like being left-handed.  (Go #lefthandersday! Oh crap. That was yesterday.) 

When I was a journalist, my editors knew that my stories would be gibberish until draft #3.  I don't mean disorganized.  I mean not in English.  

This is why Twitter worries me.  For you, it's a genius instant bond with the globe.  For me, it's that place where it takes one millisecond to tell the universe that there's a leak in my oil pan.

I learn something every day though.  #restingbitchface #humblebrag #princegeorge

See?  A #twiddiot can up her game.  Once upon a time, even rain was a learning curve. 



My Well Again list: Lin-Manuel Miranda's "Hamilton"

Why is a hiphop-musical composer in a blog about survivorship?  Because artistry like this makes me want to live.  If you love musicals, Lin-Manuel Miranda is a genius.  If you think musicals bite, Lin-Manuel Miranda is still a genius.  In "Hamilton," Miranda sets the story of Founding Father Alexander Hamilton to hiphop.  Just opened on Broadway.  Sold out through the Second Coming.  Not saying I'd kill for a ticket but I'd rough you up pretty good.  

Here's the man, previewing it at the White House back in 2009.

Marianne Williamson talks to Anne about why we get cancer

As a 3x cancer veteran, I hate being lectured by new age fans who preach that we “give ourselves” cancer. Whole Life Times gave me the chance to raise this issue with Marianne Williamson, one of the most respected leaders of new age thought.  I think you’ll be fascinated by what Marianne says on the cancer experience — including her advice on what to tell people who try to impose their opinions on you.  Enjoy, share, and comment....  We want to hear from you!

READ THE WHOLE STORY at http://www.wholelifetimes.com/7388/why-we-get-cancer/