My story, our story

Talk given at the American Cancer Society’s Annual Meeting, November 19, 2009.

Good morning.

When I got sick, I had no idea how much my life was about to change.

I was 34, a mom of a toddler and a newborn baby, and my days were filled with caring for them, keeping the family going, and writing about our adventures on my blog.  I was totally dedicated to being a good mom, and giving my two little boys the best childhood that I could.

Then my mother-in-law was diagnosed with cancer.  We were told that she had infiltrating ductile carcinoma.  Although I thought I was relatively well-informed, I had no idea what that was.   So, after I put the toddler to bed and started nursing my infant, I googled it.  The American Cancer Society’s web page told me what it was, and that there were other kinds of breast cancer as well.  Infiltrating lobular carcinoma.  Invasive ductile carcinoma.  Invasive lobular carcinoma.  Words I’d heard but didn’t ever have the need to understand before then.  And then, at the bottom of the page, was something I’d never heard of.  Inflammatory breast cancer.  This cancer was uncommon, it said, and different from the others.  “Usually there is no single lump or tumor. Instead, IBC makes the skin of the breast look red and feel warm.”

That’s funny, I thought.  Sounds like mastitis.  But that’s common in nursing moms.  I think I’m getting a case right now.

“It also makes the skin look thick and pitted, something like an orange peel. The breast may get bigger, hard, tender, or itchy.”

What strange symptoms, I thought, and stopped to scratch something tickling my chest.

“In its early stages,” I read, “inflammatory breast cancer is often mistaken for infection. There is no defined lump…It usually has a higher chance of spreading and a worse outlook than invasive ductal or lobular cancer.”

Hmmm.

I tried to shift the baby to nurse on the other side, but, as usual, he would have none of it.  He fussed and cried, and I gave up, removing him from the dimpled breast.  The next morning, I called my OB to ask him about the baby refusing to nurse.  I’d been to the pediatrician and the lactation consultant many times in the past 5 months.  Why not, I thought, give this a try?

My OB didn’t know what to make of it.  “I’ve never seen this before,” he said.  “I don’t know what it is, but I don’t like the looks of it.”  And just like that, I was sent to the Lombardi Cancer Center, and my journey with inflammatory breast cancer began.

After a whirlwind week of appointments, a mammogram, an ultrasound, and a set of seven core biopsies on my right breast, I was at home, alone, waiting for the results.  My husband had driven out to help his mother after her lumpectomy, and I was on the computer, as I often was, thinking out loud on my blog.  I was reeling from my mother-in-law’s diagnosis, and, as the rash on my breast grew redder every day and began to spread across my chest, I had to talk about it.

So I did.  Tentatively at first, sharing the news of my mother-in-law’s diagnosis, asking for information and statistics on surviving breast cancer, because I trusted my friends online to know where to find the facts, and I was scared to do much research myself.  Then I read that 1 in 8 women will get breast cancer in their lifetimes.  My playgroup has 8 moms.  I was really struck by that, and I began to write about what I was learning every day.  As I went through the stages of testing, I wrote about the experience.  I wrote about what it was like to lie on the cold table while the surgeon plunged a needle into my chest, seven times, to take the biopsies.  I wrote about the waiting.  The fear.  The craziness that was watching this rash move across my chest in a matter of days.

And for the first time, I admitted that I was scared.

I thought at first that this would drive my readers away.  I mean, there weren’t many of them, and I was known for happy, positive blogs in the past.  But this wasn’t a happy, positive time.  This was real, and it was, in many senses, the unknown.

You see, twenty-five years ago, my grandmother was diagnosed with cancer.  I don’t know what kind.  They didn’t talk about it, and in fact she never told her own children whether it was ovarian, uterine, or cervical.  All we know is that it was “a female cancer,” and, at some point, she lost her hair from the treatment.  It wasn’t talked about in those days.  But if it had been talked about, and if I had any idea that I might be at higher risk, I might have been more informed going into this.

So I began to write.  Every day, I wrote about what tests or treatment I had, how it made me feel, and what I was thinking about for the next step.  I thought people would leave my blog in droves.  But they didn’t.  They stayed.  My friends stayed with me, and began to offer comments of support.

When I got the diagnosis of “cancer,” it came with a mandate of “chemo,” starting the next week, the day after the fourth of July, and our family picnic that we always host for my moms’ group.  I was devastated.  It didn’t make sense.

So I wrote about it.

I wrote about the fear of putting my life as I’d known it on hold, and starting something new.  I wrote about the rash that by then had covered my breast, and about how tired I was all the time.  I became weak, and scared, and spent many days in bed, too tired to move, too exhausted as my body fought off the cancer.

And then, I went to chemo.  More than anything at this point, I was terrified of the unknown.  Aren’t chemo wards for sick people?  What would it be like?  What should I expect?  And so I wrote about it.

And as I wrote about it, more people came to my side.  Friends of friends at first, and then friends of friends of friends.  My best friend made a logo, and asked people to post the logo on their site to show that they supported me in my fight, and it began to pop up everywhere, even on sites that I had never visited before.  I wrote an article about IBC and its symptoms, and asked people to post it, to spread awareness, to let other people know that if they experience a change in one breast and not the other, that they should notice, and call their doctor.

400 blogs reprinted my post.  My story was picked up by newspapers, TV, Health magazine, and CNN.

But that wasn’t what made the difference to me.  What made the difference to me, in my survival, was the incredible outpouring of support that these bloggers, these unseen faces typing at keyboards in kitchens and in offices across the country, were sending me.  They were sharing their lives with me, supporting me, telling me that I was strong, that I could do this, and, sometimes, that it was ok to be weak and to cry.

They became my link to the outside world.

Chemo was hard on me.  Because of the toll that it took and the risk of infection, I rarely left the house during my 6 months of treatment and recovery from the double mastectomy that followed.  The taxol caused such neuropathy that I lost the ability to move my legs at all, and I rarely left my bed.  I had to miss playdates, moms-night-out, conferences, and all the little things that make up a life.

But I had something.  I had a link to the outside world through my computer.

Through social media, I was able to write about my experiences – and get comments, validation, questions, and support, as soon as I hit “publish.”  I was one of the first to use twitter for real-time health updates as I prepared and then recovered from my mastectomy.  And let me tell you, hearing all the wonderful, supportive, loving comments that poured in during those terrible days of drains and blood and loss helped me face the next day, and gave me the confidence to go out in public again, even though I had no reconstruction and choose to not wear prostheses.

I attended the BlogHer conference in Second Life, soon after I was diagnosed, and in fact, I used it as a testbed for being bald.  I made my avatar, the little person that represents you on screen, bald, but in an elegant swirly dress and heels.  I began to interact with others as a bald woman, although I had not yet lost my hair in real life.  It was awkward, at first, but soon I found that it opened up space for real conversations.

And I found that nearly everyone has been touched by cancer.  And nearly everyone still hurts.

As my chemo treatments continued, I did lose my hair.  But it was not traumatic.  I had already dealt with the trauma on my time, in my space, in Second Life.  And I went through my treatment period without a wig, proud of my scars, because they mean that I was given a chance to fight.

Social media kept me connected to a world that I was otherwise cut off from the moment I began treatment for cancer.  It helped me build friendships, have people to talk to, attend conferences, and stay in touch with the people in the world even when I was confined to bed.

The funny thing was, I wasn’t just talking to survivors.  Everybody has a cancer experience, and nearly everyone wants to talk about it, and to help those currently going through it.  Daughters of survivors, and newly diagnosed patients began to find my blog as I finished treatment, asking for support, asking for advice, asking not to be forgotten while they spent their own time alone in the chemo ward.  I knew this was a project way too big for me alone.  So I started a blog called Mothers With Cancer, and invited other moms I knew to join me.  Today, the blog has 20 writers, over 150,000 hits, and a substantial archive of personal experiences indexed by type of cancer, treatment, emotions, and children’s age.

And what we’ve discovered is this.  No matter what we have to go through to beat this thing, it’s so much easier to go through it together.  Whether as part of our Mothers With Cancer site or simply by speaking out on our own blogs, the social media support has been critical to our recovery, helping each of us know that no matter what, we are not alone.

Hope for Anissa

Have you heard about Hope4Peyton? Peyton is a little girl in Atlanta who has fought the same disease we do — cancer — but at a much, much earlier age. Peyton was diagnosed with Acute Lymphoblastic Leukemia at age 3, and her mama chronicled the story of her fight — and her family’s fight — at a blog called Hope4Peyton.org. Together, they battled cancer, and won. Peyton just celebrated her one-year anniversary of the completion of treatment, and cheers were heard around the blogosphere, in support of her, and her mother, Anissa.

Tonight the blogosphere is bustling again in support of Peyton, now 5, and her mom Anissa. But this time the worry is for Anissa. Anissa Mayhew, blogger, mom of 3, and founder of Aiming Low, suffered a stroke last night, and is in the ICU.

Anissa is not a mother with cancer. But she is a mother active in the cancer-fighting community, a blogger, a mama, and a force behind the Friends of Maddie that supported MamaSpohr with the loss of her beautiful child earlier this year. She’s good people.

She’s good people. And she’s fighting for her life in the ICU. Whether you see the blog posts, catch the tweets (tagged #prayersforanissa), or just feel a little something different in the air this week, think about her. Send her prayers, or thoughts, or healing light, or whatever is appropriate in your faith tradition, but please, think about her as she fights for her life this week. I will be. I’ll be thinking about her, about her three beautiful children, and how very, very much I want her to recover and be her smart-alecky self again.

Hope for Anissa. #prayersforanissa. Hope, indeed, for us all.

Please leave comments at Aiming Low, where her family will see them and be comforted.

Happy Birthday, Margaret!

Nearly 30 years ago, the very first mother with cancer I would know was diagnosed with breast cancer.

She was in her thirties herself then, and the girl who would become my best friend and I were only children.  Because of that, all I know about her fight I learned much later, in the last few years, but even if I had been older, I suspect that I still would not have heard much beyond whispers of illness or seen much beyond the baking of casseroles and cookies for the children.

It was different in those days.  People didn’t talk about cancer the way they do now.  I’m chagrined to remember that my own grandmother was diagnosed a couple short years later, and soon died, of what was enigmatically labeled “a female cancer.”  No one, not even her daughter and son, knew exactly what kind — a fact that irritated me, and then made me angry, as I filled out health history form after health history form and didn’t even know what box to check.

But Pastor Margaret knew all too well.  She had a tumor, a complete mastectomy on the affected breast, and she had the full course of treatment then available.  She made her decisions, she made her peace, and then she made it work.  She made it work so well that those of us who met her later, after her treatment was complete and her hair had grown back, never even knew what she’d been through, unless she told us.

Pastor Margaret’s fighting a different kind of cancer now, and fighting it with a different kind of bravery.  You see, now, she’s fighting it out loud.  She’s blogging her journey, like her daughter Marty, and she’s taking us with her on her appointments.  She’s letting the world see what it’s like behind the cancer curtain.

I am so proud of her.  For then.  For now.  For sticking with it, and fighting so hard to be Momma to my best friend, Marty.  My heart is so full of happiness, and pride, and, well gratitude that she stuck it out, that her doctors were wise, and that she was blessed with more years of life.  With more time with her children.  With time to lead Sunday School, to see her children through school, and with time to go to Seminary and become the woman she is today.

Pastor Margaret.

The Momma who is teaching us about miracles, about unyielding faith, and about how to fight this hideous cancer, once, twice, and yet again.

Happy birthday, Pastor Margaret.  I am so, so grateful for the 29 birthdays that you’ve had since you first heard the word “cancer,” and I wish you many, many more.

Jen Ballentyne

Our friend Jenni Ballentyne has entered hospice.  It’s a good thing, my friends, for she is able to relax and be cared for, although of course it is a signal that all is not well.  All hasn’t been well for Jenni in a long time, though.  If you’ve ever read her blog, you know that.  You know that she has suffered in ways that most of us will never have to suffer.  And you know that sucks.

Because it does.  There is no good way to say this.  Cancer sucks.  Her kind of cancer has its own special horrors.  But Jenni has persevered through rounds of treatment, surgeries, crises, and indignities that no one should have to face — and Jenni has done it with a determination and a will that awes all who know her.

Jenni loves her children, Jack and Jamie, and is singlemindedly focused on what’s best for them and their future.  She discussed that in a comment this week, talking about her decision not to try maintenance chemo again, knowing that it will not significantly prolong her life, and it will make the last few months miserable.  She says it better than I could,

The chemo affects you so badly that you don’t even want to talk to anyone, you can’t lift your head, I mean I just don’t see the point. Say I have six months, say chemo will buy me an extra three, but the entire nine months will be revolting. Not worth it. The price is just too high. If it helped my kids then I’d do it, but it doesn’t help them to see me so ill that I can’t lift my own head, there is absolutely no good to come from that at all…. Leaving Memory Boxes, letters, just sweet, special things for my boys is my priority now and I am building on that each day.

And once again, she inspires me as she walks the difficult road that is life after a cancer diagnosis.

Go give her some love, will you?  She has plenty — oh, she has so much love — but it will make you feel better, just to be in her presence.  Pinky swear.

Go.  She’s worth it.

The appointment

As I stepped through the door, I remembered.

A single pale face looked up at me from the bench by the door, worry lines drawn from his forehead clear across his scalp. Another man next to him bent over, staring at his shoes, oblivious to the drama unfolding further in, where tension swirled round in a cloud of worry and mothers and fathers were transformed into patients and caregivers. Where a young woman sat, quietly, hands folded in her lap, patiently waiting to hear what the next six months would hold. A grandmother sat with her knitting, paused as if time had stopped while she waited to hear if she would be next. Older women in wheelchairs and old men with oxygen tanks shared space with a pair of thin Asian women and an outspoken Baba, asking everyone where the nurse was and why she hadn’t been seen yet. She had been there for over an hour, you know, she reminded her neighbors, she was there when they arrived, remember? And everyone else had been called, and yet there she sat.

There they all sat, waiting to be called, to learn their fate.

I dutifully took my seat, between a swollen woman in a bright purple
bandana and a gaunt girl-child wrapped in her grandmother’s shawl. I
too had been swollen, been weak, been bald, and been pricked so full
of holes they couldn’t find a vein. I too had been afraid, uncertain,
determined, and fierce as I fought my own body, and the traitorous tumor that formed within me. I too had been quiet, and then loud, shouting from the rooftops, “Life does not end with the diagnosis!” I too wondered if perhaps my protestations were not enough. For life would never be the same, not really.

The nurse called my name. I stood up, quickly and with embarrassing
ease, to be seen by the oncologist. But as I passed my comrades-in-arms, these wounded warriors, I remembered.

(In memory of bloggers Lisa @Clusterfook, Andrea @PunkrockMommy, Manda @AlabamaPink, and One Mother With Cancer, all lost in the last 13 months. And yes, I still link to their blogs.) Cross posted at Toddler Planet.