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.

Helping Young Children Cope With Cancer

A few people have emailed me along the way about how I helped my children through my cancer diagnosis and treatment.  I wish I had amazing words of wisdom, but I don’t.  I can only tell you what we did and tell you that our children seem happy and well adjusted. 

Meleah probably took it the hardest, not that she really understood what was going on fully, as she was only 3 when I was diagnosed, but she is very fearful and often tearful.  I try to figure out if this is her personality or a little of both.  She is the one that wants to see everything that changes on my body.  If she sees me changing my clothes, she will say “mommy, I wish you didn’t have cancer.”  And I will remind her that I don’t have cancer anymore, and the scars are left from having had cancer. 

Elijah was only one when I was diagnosed.  He is an amazing little boy and just rolled with the punches.  I wasn’t ready to wean him.  I kept thinking  “just one more time.”  Weaning my last child, because I had to, made me angrier than anything else about cancer.  It stole the way I wanted to parent from me and I knew once it was gone I would neverget it back.  I left to U of M for the first night away from my baby boy, one week after my diagnosis, and I knew I would never nurse him again.  My breasts not only hurt from the cancer but they were engorged and full, and leaking milk like tears of grief and sadness.  It broke my heart and still does.

Charis was the oldest and understood the most.  We were up front with Charis from the start.  She could see that I was emotionally and physically not doing well, so it wouldn’t have been fair not to tell her.  Onemistake we made was reading a book for kids about cancer that we had not read before reading it to her.  At the end, someone dies.  I remember her eyes got very big and she said “Oh…that scares me mommy.”  I’m not saying the discussion of the possibility should never arise.  I just wasn’t prepared for the discussion.  However, I think my response was very sufficient for her.  I said “Mommy is going to do everything I can to get better and I’m going to go to the very best doctors.  They will give me very strong medicine that will make me look very sick, but I’m planning that it will make me better.  If  there is ever a time I don’t think I will make it, I will let you know.  Until then I don’t want you to worry about it.”  And she didn’t.  In fact a few months later when I did look sick and I didn’t have any hair I asked her how she was doing.  I asked her if she ever got scared about mommy’s cancer.  Her response was very wise I think for a 7 year old.  She said “when I start thinking about it and get scared I just run around and play and then I don’t think about it anymore.” 

So I guess my one bit of advice is that you need to be honest with your kids.  But not brutally honest.  We told them that mommy was sick but the medicine would make me sicker before I would get better.  That I wouldn’t look very good for a while.  We kept them ahead of the curve by telling them that my hair would fall out before it actually did.  We included them in the “shaving party” and had them help if they wanted.  (Charis did not enjoy this very much)  We told them early on that I would need to have my breasts removed and we reminded them of it occasionally so they were prepared.  We also told them how there would be a doctor later who would give me new “na-na’s.”  And so it was.  We just kept the lines of communication open and we helped them feel a part of everything.  And thankfully we did not have to prepare them for death, but we would have done that had we needed to do that as well. 

So a few weeks ago I was contacted by someone about a new resource for young children and they sent me a copy of the book.  I have to say that I wish we would have had the book back when I was diagnosed.   Here’s why I would have liked it so much:  There are over 50 pages of different scenarios addressing cancer for younger children so you can make your own book to help your child cope with your specific situation.   There are pages that deal with everything from mommy is having chemo, daddy is losing his hair, grandma is feeling badly but she will feel better soon, etc.  You can take pages in and out of the binder as you need them.  It’s a great resource if someone you love is going through cancer.  The book is called “Someone I Love is Sick.”  You can find more information and resources at their web site here.

New Diagnosis

Another member of the blogosphere has just been diagnosed with cancer.  Dermatofibrosarcoma, to be exact, and she has three little girls, ages 4, 8 months, and 8 months.  Brandi blogs at Ramblings of a Tired Mama and twitters as @brandi_b.  If you see her about the internets, please say hi.

Not ready

I thought I was ready to go back out in the world.

Not as a cancer patient.

Not as an object of pity or solicitude.

Just a mom, out with her friends at night.

But, as it turns out, I am not fully healed.

The mention of death (in the book we’d just read) made me flinch.

The fact that the man didn’t want to live anymore made me angry.

The comment, “I wonder where we’ll all be in 50 years” made me — unjustifiably — unbelievably sad.

For, truthfully, I will not be the only one dead by then.

Not all of us make it to 85.

But I?  I have less than even odds that I’ll make it to 40.

So I made a lame (if true) excuse and left the bright lights of the fancy cafe

To come home and snuggle with my children and put them to bed

Kiss my husband and

Say thank you for loving me anyway

breast envy

I find myself continuously inspired by the group of bloggers in our little community. Today’s post was provoked into being by Lahdeedah’s post “The Road to OK” and imstell (Stella)’s response, “Acceptance.”

I have always felt ambivalent about my breasts. As a young woman (I was an early bloomer, it must be said) they brought me attention that was at times unwelcome and at times confusingly gratifying. They fed two children for a total of more than three years. Once large and round, they were irrevocably changed by motherhood, as my nipples moved southward and seemed to stretch ever more closely towards my toes.

And then my right breast betrayed me, playing host to the tumour that would eventually spread to my lymph nodes and then to my liver. On February 2nd (“Groundhog Day!” I exclaimed when my surgeon told me the date. I had to explain that I was not objecting on the basis of this being a special holiday for me), I had a mastectomy.

I feel no less ambivalent now that I have only one breast. I was consumed with terror before the surgery and relieved afterwards to see only one bandage across my chest. I was frustrated by drains and then by the fact that healing seemed to take a step back two weeks after the surgery (no one had warned me this would happen).

More than two years later, I am still plagued with post surgical issues, including a limited range of motion and lymphedema in my chest, back and rib cage (when I showed this to my surgeon, couple of weeks after surgery, he shrugged it off as “just back fat,” so loathe was he to admit that he didn’t know. He actually said that the fact that my breast was no longer pulling it forward the fat was sticking out more. My physiotherapist just about had an aneurysm when I told her that story).

Radiation left me with serious scarring that exacerbated the lymphedema and made it painful to wear a prosthesis. Most days I am perfectly fine with this. At other times, I feel extremely self-conscious. Some days I dress to camouflage and some days I am quite content with the altered landscape of my body.

It is in the summer time when I most miss having two breasts, when I sometimes long to look “normal” in a tank top. It is also when I find myself (as Jill confesses in her post), ogling other women with envy.

However, I remind myself that how I look is perfectly normal to those who know and love me. My older son has even said as much, as has my spouse. And along with the lines around my eyes and mouth (I smile a lot), the stretch marks on my belly (I have borne and birthed two beautiful boys) and even the little scar that runs from the corner of my left eye (I hit a metal bar when I was chasing a cute boy in my class during a game of tag in Grade 6), the scar on my chest and my asymmetrical shape tell the story of the experiences that have shaped who I am.

The following poem was originally posted on my blog, Not Just About Cancer:

voyeur

Women’s breasts emerge in the heat of the summer.
Big ones and small ones.
Perky ones (I could fit them in my hand).
Breasts nursing babies.
Freckled cleavage.
Wrinkled cleavage.
And breasts that can’t possibly be real.
I stare at women’s breasts now with great fascination.
And not a little envy.
I have never seen a woman with one breast.
Except in the mirror.