My story, our story

November 19, 2009

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.


Little Bear’s Fourth Birthday

February 23, 2011

… and I’m in better shape than I was earlier this week. My participation in the clinical trial is all but confirmed. My doctor says the additional week delay (total of 3 weeks since the PET scan) isn’t going to be a problem, and we’re all in much better shape emotionally than earlier in the week.

I’m happy to share that three of my online friends have posted information about the new partnership between LympheDIVAs and Crickett’s Answer and donated $1/comment for lymphedema sleeves this week, for a confirmed total of $500 from @ThatKristen, $100 from Marty/@canape, and a number of direct donations made for this project from the Internet (well, from PEOPLE on the Internet and using social media, but you know what I mean). Even better, the word is getting out that help with sleeves is AVAILABLE, and I’m cheered to hear that there are more posts from other bloggers (and ACS!) on the way!

I even have the first success story to share, from the first woman helped as we were getting this together back in November. She has additional disability and can’t drive, so she relies on metro and metro access to get to lymphedema treatment each week, taking time and energy that she needs to parent her young son. Without the sleeve, she had to come back frequently for therapy. Now that she has a class 2 lymphedema sleeve and glove to help manage her own care, she has been discharged from therapy and has that time, energy, and effort back!

The foundation has agreed to send her a second sleeve and glove to help with compliance. (It’s difficult to wash a garment every night for daily wear; having two really helps.)

As for me, I burrowed into work this week (trying to ignore the recurrence) and have come back here frequently to enjoy the love and lift my spirits. I’m hoping for amnesty from replying to every comment while I get things back to a kind of normal around here, but I thank you and love you all!

Except for the person who told me to read The Secret to fight this fourth cancer. You, I worry about.

Today, my “baby,” known here as Little Bear, is four. Tomorrow, we will laugh and celebrate and race fire trucks on homemade ramps, and celebrate the JOY of living – for today is a day I didn’t know I’d have, and, as I’m often reminded, I am lucky – very lucky – to be here TODAY, and to be his Mama.

Happy birthday, Little Bear. You are joy and laughter and happiness, and I just melt whenever you blow a kiss (rapid-fire), flash that grin that lights up a room, or snuggle in, with a quiet “I love you, Mama.”

I love you too, Little Bear. And every day of my life, I live now for you and your brother Widget. The pain and fear and uncertainty that you’re reading about in these archives – please know always that for you – for you – it was worth it.

Originally posted on Toddler Planet, January 14, 2011


A Survivor’s Story, at Relay for Life

January 29, 2009

It’s funny.  I do a lot of talking online about cancer and survivorship and what happened, and I give talks professionally all the time, but put them together and it’s a whole new level of scary.  You see, I started talking about cancer on my blog because I wasn’t good at talking about it in real life.  I didn’t call up my girlfriends and chat casually about chemo or mastectomy … or my fears.  I typed it here instead, telling all of you, but without the risk that face-to-face emotion entails.  It was the way I coped.

But last night, at @kbaumler’s invitation, I spoke to a room of 100 Relay for Life runners, team captains, activists, survivors (a few), and caregivers (many, oh, so many) about my story.  About what it was like to have cancer.  About what it was like to survive cancer, to help kick off their Relay for Life 2009 season.

I didn’t know what to talk about.  Kristina said, “tell your story.”  So I did.  The first draft came out kinda dark.  I think I brightened it up some with a subsequent draft but it was still not a happy story.  But how could cancer be a happy story?  Yes, yes, I’m thrilled to be alive again, but the end result of a year of struggle and pain and work is … that I’m at the starting line again.  I’m alive. … but so are all of you, y’know?  It’s hard to be grateful for — or happy about — cancer.

But today I am grateful, for I was able to help three people yesterday.

1. @alexcaseybaby, whose twitters about a friend having a preventative double mastectomy came just as I was doubting my words.

2. A woman who came up after my talk last night and told me that she was grateful that I spoke the forbidden words — acknowledging that the fight against cancer does not end with the good news that the tumor is gone.

3. Another mom, who happened to be sitting at my table last night with her two kids, as I sat there with my two kids, all of them eating fruit and snacks together, who left as I began my talk.  I worried then that I had offended — but as it turns out there was more to the story.  You see, she has cancer too.  She’s having surgery on Monday and has to tell her kids … today.  She needed to hear me talk, to see me standing there, to see that there is life beyond cancer.

And talking to her afterwards, as I told @mommy4cocktails, who so graciously came out just to hear me and sit by my side (and for which I’m forever grateful!), was the reason that I’d been brought there.

That made it all worthwhile.


My Life with Laura: A Love Story, by Chad Moutray

January 22, 2009

(If you want to enter to win the book go to www.clergygirl.wordpress.com )

 

“When the child was weaned, Hannah took him to the Tabernacle in Shiloh. They brought along a three-year-old bull for the sacrifice and a basket of flour and some wine.  After sacrificing the bull, they brought the boy to Eli. “Sir, do you remember me?” Hannah asked. “I am the woman who stood here several years ago praying to the Lord.  I asked the Lord to give me this boy, and he has granted my request. Now I am giving him to the Lord, and he will belong to the Lord his whole life.” And they worshiped the Lord there.” (1 Samuel 1:24-28 )

  

If you aren’t familiar with her story….Hannah makes a bargain with God.  She is barren and wants so badly to have a child.  She is one of two wives of Elkanah and his other wife has many children.  In 1,000 BC having children was a sign of prosperity for a woman.  So she vows to give over her son to the Lord if He blesses her with a child.

 

And God does.  And here’s the kicker….when he’s 3 and he’s weaned (yes, it was normal to nurse till 3) Hannah graciously and with dignity follows through with her agreement and takes her toddler, her precious gift, to the Temple and hands him over to the priest Eli for religious instruction, and ultimately to God.   

 

Whenever I read this story it grieves me and inspires me at the same time.  As a mom I cling tightly to my children.  At night I lay beside them as they fall asleep and pray for God to take care of them and to keep them safe and healthy.  I couldn’t imagine losing them.

 

So I think the only thing worse than having to make a choice like Hannah did…..is….well knowing you will need to say goodbye to your child, not of your own choice, but of factors beyond your control.  There’s something about the mother/child relationship that we are drawn to.  The bond is so incredible, and it hurts us deeply to see this broken by death. 

 

There are so many similarities between how Hannah lived and how Laura lived.

 

Having faced a cancer diagnosis I know how life shattering it can be.  But Laura didn’t let it shatter her life.  She lived fully, she loved fully, and she was the best mom to her daughter Charlotte she could possibly be.  She did her best not to let cancer slow her down.  She regularly got out for play dates and walks with Charlotte.  She remained active in her church.  She even took Charlotte to a harvest festival just weeks before she passed away. 

 

Hannah knew for several years there would be a point when she would lay Samuel’s tiny hand in to the hand of the Lord’s.  She would have to trust that God would care for him even better than she could.  I don’t know when Laura realized that she wouldn’t always be there for Charlotte, but she followed the Lord with obedience.  She trusted the Lord’s will.  She gracefully laid her child in the arms of God.  She didn’t do it kicking or screaming.  She didn’t take her family on an emotional roller coaster (not intentionally anyway).  She wasn’t demanding, and she didn’t become bitter. 

 

How hard it must be to give yourself over to God, a living sacrifice, ready and willing for anything, including death.  And trust that His way is far greater than our way.   His wisdom far exceeds our knowledge and understanding. 

 

 She was confident in a God who far exceeds our expectations.  Who loves us more than a mother, or a father, and who has a wonderful plan for our lives.  She was prepared for this before she ever got her cancer diagnosis and her strength and assurance carried her through a difficult battle.  She understood that this life is so temporary and life in Christ is so eternal.   She knew that we could never begin to know God’s big picture.

She had every right to be angry, depressed, to feel jiped.  Laura wanted more children, she had a 2 year old daughter and a new husband.  She had so much life left to live!  But she continued to glorify God, and draw hope from His Word, in the face of death.  When Hannah left Samuel, she did so in good spirits and in obedience.  She could have turned sour, but instead she praised her God.  Here is a few lines of Hannah’s prayer in 1 Samuel 2….taken with great liberties to share my favorite lines with you.….lol.

I’m bursting with God-news! I’m walking on air!
   Nothing and no one is holy like God,
      no rock mountain like our God.
     For God knows what’s going on.
      He takes the measure of everything that happens.

 

   God brings death and God brings life,
      brings down to the grave and raises up.
      He puts poor people on their feet again;
      he rekindles burned-out lives with fresh hope,
   Restoring dignity and respect to their lives 
      a place in the sun! 
    

 

Remember Me
Remember Me

I’m including a picture from a fabulous painter by the name of Naomi Cox.  When I used to preach I would love to use visuals, and looking around the other day I found this painting of Hannah taking robes to Samuel.  If Laura were here she would diligently pray for and care for Charlotte.  But she can’t.  She has left that behind for the body of Christ.  My prayer is that this painting will be a reminder of Hannah’s faithfulness and her obedience to God no matter how difficult the task, no matter how scary the outcome.  And that a precious little girl, Charlotte, and her father Chad need our diligent and faithful prayers as they continue on this life journey.

 

You can order the book here.

 

 


Hair’s My Story

January 4, 2009

My first chemo treatment was on Thursday, June 2, 2005.  My oncologist said I’d probably lose my hair within fourteen days.  Two weeks later, however, I still had a pretty good head of hair.  I’d started shedding a bit, but I had so much hair to begin with I thought maybe I’d be one of those rare women who kept their hair.  The following day, however, I accepted the fact my hair was dead.  It was like dry straw and I couldn’t style it or do anything with it.

That was one of my sad days.  I knew I was going to lose my hair and I spent that Thursday in mourning.  Here I was fighting for my life and the thought of going bald – even temporarily – was so depressing.  I was less upset when I knew I’d be losing a breast.  I even thought maybe there was something wrong with me, that I was much more vain than I ever thought.  But since then I’ve heard the same sentiments from so many other women.  I admit there’s a comfort in knowing I’m not totally off my rocker.  Or at least not all alone in being totally off my rocker.

Friday I called my friends, Beth and Rhonda, and asked if they would come over Saturday morning for a buzzing party.  In that moment I took control of my situation and my perspective on the whole thing changed.  And maybe that was the difference.  I had control over whether not I would have a mastectomy.  A lumpectomy may not have been a choice for me, but I still could have said no to the surgery altogether.  Stupid, I know, but I still had the control.  There was nothing I could do about losing my hair, but I had control over when I would lose my hair.

So Saturday morning – 17 days after my first treatment – we had a Free the Follicle Festival at my place.  Beth brought her girls, I made coffee and Beth & Rhonda brought donuts and juice for the kids.  After getting hopped up on sugar and caffeine we went into the kitchen while the kids watched a movie or played in the living room.  Beth had the sheers and Rhonda took pictures.

First Beth gave me a skater cut and then a Mohawk.  I think it looked more like one of those hedgehog boot scrapers, but whatever.  Beth’s youngest daughter, Baylie, hung out between the kitchen and the living room, acting as herald for the other kids with each new style.  They’d all come running in and laugh, especially when I was trying to do the Billy Idol snarl.

We tried gelling the Mohawk to spike it, but sadly it didn’t work. Finally the job was done and surprisingly I didn’t mind the buzz.  The small, nicely shaped head was a bit of a surprise.  Thank goodness it wasn’t lumpy!  And I guess all that thick hair I’d always had gave me the illusion of a bigger noggin.  I was given the name of G.I. Jen and fancied myself as a Demi Moore look alike. Until you looked anywhere but the hair. 

Wouldn’t you know all this had to happen on one of the weekends my husband didn’t come  home.  Rhonda took a picture of me and I hesitantly emailed it to Todd, a little anxious about his reaction.  Being one of the most wonderful husbands on the face of the planet, he called me and said I was beautiful and it only emphasized my pretty smile and big eyes.  I seriously love his delusions.

Sunday night my scalp hurt so bad I had to take some of the pain medication left from the surgery and by Tuesday as I stood in the shower my hair came out by the handfuls.  I think if it had happened a week earlier it would have broken me.  But because I had already done my grieving and taken control of the situation I had more of an “oh well” attitude.

The way my friends and I made it a fun event was so good for the kids, too. I can only imagine the uncertainty, among many other things, they had to feel. I’m thankful both kids were open and honest about what they were feeling, but I also know they both tried to protect me in their way. I may be way off, but I truly believe the way I handled losing my hair by including them and making it kind of fun was one less stress they had to deal with. At least I hope so.