… to make you feel better, Mommy

This week was the first I’ve had alone with my second child, my babykins, 4.5 year old Little Bear, since his brother went off to nursery school three years ago and left us aimless, wondering what to do with ourselves during the day.  It was only three hours back then, but what long hours, sitting on the stoop, waiting for brother to come home, trying halfheartedly to entertain ourselves until we got into the groove of pre-preschooler play again.

But this week was different.  This week, when Widget went to school and LB waited for his to start, was snuggles and playdoh and friends popping by for a playdate and me pushing myself to drive to an adjacent neighborhood so that we could have a playdate with LB’s first friend that he made all. by. himself at nursery school two years ago, on HIS first day, and that we’ve had playdates with nearly every Monday since.  She invited us over, and she’s not really aware of this cancer thing, and I want their friendship to continue. . . so I drove us over there, and I sat on her couch instead of mine, and we had preschooler snacks and juice and milk and it was a lovely couple of hours.

I wouldn’t have not done it for the world, for him, for them, for us.  He deserves his own friends, in addition to the kids of Mama’s friends, or the younger siblings of brother’s friends, and I’m so proud of him for making and trying to keep them.  So I pushed myself to drive, and to sit, and to drive home, tired.  He and I came home exhausted, and we slept all afternoon.  He woke four hours later and was upset that “me never go’ed to sleep!” But he had, of course.  We had, and a dear friend stepped in to watch my older child so we could keep sleeping, and it was peaceful as we woke up that afternoon.

Sleep has played a big role in our lives this week, as I skipped chemo (it’s my week off), but felt the pressure of the treatment, the forced sleep, the weakness that makes getting up unimaginable, and all of that regardless on Wednesday, Thursday, and Friday.  I didn’t know how to explain it, and I raged inside, angry that I couldn’t even feel great on my week off.  And then I realized that it was the effects of last week’s chemo, making themselves known as they peaked 5-7 days after treatment.  Right on schedule.  Whoops.

So apparently the fantastic weekends I’ve been having, paired with the unexpected slowdowns on Wednesday before treatment, are right on for this chemo, although they are backwards from what you’d expect, and from what I expected, from previous treatments.  I’m still getting used to this new normal, and really it has felt anything but.

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Moments to remember:

On Wednesday, I was so very tired that when Little Bear brought me a stuffed elephant and asked me to play with him, I agreed, suggesting we play with the elephant in the blankets in Mama’s room.  Despite not having done much yet that day, I was exhausted, and went to lie down in bed.  Bear brought me stuffed animal after stuffed animal, piling them on top of me and tucking them in around me as we played.  The soft lamb, the cow and his daddy, the horse and his mommy, all had adventures with us as I rested my body and talked softly with my little boy.  It was a beautiful moment, and when I fell asleep, surrounded by the stuffed animals he loves, he climbed quietly down from the bed and found his Daddy downstairs.

Thursday, I fell asleep even earlier, at 11:30 after a visit from a friend and her child, and Little Bear fell asleep with me as we read a chapter from Pippi Longstocking.  We slept again all afternoon, and Daddy took Little Bear to pick up brother at school without even waking me.  When they returned, I was rested enough to pull out the milk and cookies, and hear all about Widget’s day at school.  (It was only a “5,” but that may have been because he asked me what the average was, and that’s what I said.)

Later that night, I was in pain as I put the children to bed.  I tried to keep it to myself, but as I turned on my side, I let out a quick cry as the nerves by my spine pinched.  Bear crawled down from his bed, and I started to correct him for getting out when he should be staying in, but he turned around and gave me the biggest bear hug, saying, “I want to make you feel better, Mommy.”

Another time this week, as I lay in bed, waiting for the morphine to take effect to relieve the breakthrough pain, Bear and I played with toy cars.  He stopped, looked up at the afternoon light, and said, “Mommy, we are so lucky.”  What?  I had just been silently berating myself at the lack of educational plan for the day, and how crappy a mom I was to parent horizontally again, as J used to say — and at the exact same time he was thinking he was lucky.  In this case, he said, it was because we have so many toys.  But I heard what he meant loud and clear, and I resolved to cut myself a little more slack for not running races with them outside, or taking them out to great adventures, or even going with my three guys to the grocery store.  I’m using my energy for them.  I’m reserving my energy for what’s important – for my writing, yes.  For my friends, yes.  But most importantly, for my children and family, and I am getting pretty good at making every minute count.

And more than anything else, they know, oh, they know, how I love them.

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In light of the new Facebook game this week, I’ve been asked several times for the post I wrote decrying status updates as a form of activism, and teasing about bra color instead of real action fighting cancers of all kinds.  Here’s the link.  Thank you.   In the name of awareness….

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Dear President Obama:

Thank you for your support of the fight against breast cancer.  By turning the White House pink last week and issuing a proclamation October 1, you joined so many in America (and the previous administration) wishing us well, thanking our caregivers, and approving of the research that gives us hope.  I’m sure it was beautiful.

I didn’t see the pink White House, because while you and your staff were lighting your house pink, I was just a few miles up the road, explaining to my little boys that Mommy was too tired to play after dinner because the chemotherapy I take is fighting the cancer cells spread throughout my body.  That I couldn’t pick them up from school because the chemo takes so much energy that I had to nap instead.  That I was fighting as hard as I could, and that it would get better, but for now, Mommy had to rest.  Because Mommy has cancer. 

I’m a three-time survivor of breast cancers that don’t get a lot of attention, even during breast cancer awareness month.  Despite all the pink saturating our government buildings, the grocery store, and the pharmacy, there is still very little research on inflammatory breast cancer, the most aggressive of the breast cancers, and the one I’ve gotten twice in three years.  My hope for a cure lies not in the giant breast cancer organizations, but in the rare research grant that could bring a breakthrough in this terribly fast-moving cancer that will surely kill me before I have the chance to see my children go to middle school.

I’m lucky in many ways.  Had I been diagnosed with inflammatory breast cancer thirty years ago, I wouldn’t have seen my children go to kindergarten, because 98% of women with IBC then did not survive five years, and my youngest was only a baby when I found out that I had the disease.

I’m here today because of research.  But I’m also here today asking for your help for more funding for research for inflammatory breast cancer and for all cancers.  One in eight Americans will get cancer in their lifetime, and nearly all of us have been personally touched by this awful disease. 

Touched is an understatement.  Where just five years ago, I was a vibrant young mom, a NASA scientist, with my whole world at my fingertips, now I am too weak to travel.  Too weak to help my children at the playground.  Too weak to go to the grocery store, and too weak for date night with my husband.  I spend my days in bed or working at my desk, trying to eke out a life while the cancer and the chemo ravage my body, steal my energy, take away my hunger, and make me tired in my bones. 

Cancer is not pretty.  It’s not pink.  And it doesn’t really care about all the games being played in its name during breast cancer awareness month.  Cancer is a deadly, bloody, life-taking disease that has killed too many of my friends and is trying to kill me as well. 

I’m doing everything I can to fight this disease, with my medications, with physical therapy, with donations to research, and with my words as I tell my story so that others can understand what it’s really like inside breast cancer.   

Are you?

Or is changing the light bulbs the most that this White House can do to fight cancer?

In the name of awareness

If you’re on Facebook, you’ve seen the meme going around the past couple of days.  Women the world over are posting colors to their status updates.  Lots of black, some pink, some white, a virtual rainbow.  It’s a game that several of my circles (high school, local friends, blogging friends) are playing right now, and it looked cute if harmless.  I wanted to play.

I tracked the game back a couple hours and figured it out — they were writing their bra colors!  I put hands to keyboard and wrote … nothing.  Truth is, I didn’t know what to write.  I wanted to frivilously play along — the boys had gone to bed, and this was MY time, after all — but I couldn’t.  And why couldn’t I?  If you know me, you don’t have to ask.  But if you’re new here, I couldn’t play along by posting the color of my bra because I don’t have one.  I don’t own one.

Two years ago this month, I underwent surgery, you see.  I had a double mastectomy to remove the cancer that was trying to kill me.  In my right breast, Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years. (Statistics have improved somewhat since my diagnosis, but it’s still the second-deadliest cancer, second only to prostate cancer.) In my left breast, potential.  Potential that the same cancer would recur, as it was in my lymph system, coursing through my body, even as we tried to kill it with six months of tri-weekly, then weekly chemotherapy.

We had been through hell.  First the cancer, then the chemo tried to kill me, and both of them almost succeeded.  I was in bed for months, too tired to move.  I couldn’t leave the house for fear of infection during flu season — and we had to take my oldest out of preschool, to keep those germs at bay.  At one point, the taxol had ravaged my nervous system so much that I lost the use of my legs.

After all that, we had to wait for my body to rally after the last chemotherapy treatment and become strong enough to survive the surgery.  As each day went by, I would grow stronger — but so would the cancer.  and if it grew faster than my white blood cells rebounded, then the surgery might not happen, and the tumor would be inoperable again.

It was terrible.

But eventually the day came, January 23, 2007, and I was able to have my breasts removed.  I’ve never felt so relieved in all my life.  This was my one big shot at getting rid of (most of) the cancer in my body, and starting life anew.  This was it.  This HAD to work.

And it did.  I made it through surgery just fine (twittering when I woke up, and blogging about it the same day).  I went through the gory aftermath of breast removal, and the difficulty of explaining it to my children.  We found out that the second breast was not innocent at all, but fostering its own little type of cancer, Paget’s disease.  If I had not removed it preventatively, I could have been back in chemo within the year — if it were found in time.

So I have some history here.

But I tried to shrug it off and play along.  I wrote “None — In fact, I don’t even OWN one! :-)” and watched my friends play along in their own way, hoping I didn’t make anyone uncomfortable.

But what I saw was nothing short of amazing.  I’d forgotten for an instant that this wasn’t about my story.  This was about our story, and the Mothers With Cancer were coming out to play too.  Here’s what they wrote:

“Nude.”

“Nothing.”

“White, with pockets.”

And then, in the comments, some amazing things began to happen.  Their friends came out to support them, cheering them on.  Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.

Really?

Awareness?

Aren’t we aware by now, people?  Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed?  Don’t we know that we need to talk to our doctor about thermography or mammograms?  Don’t we know?

As I talked to friends on twitter about it last night, a single message came through from my friend and fellow survivor @stales.  She said something that struck me to the core.  She wrote to all: “Time for a little less “awareness” and a whole lot of “action”: the time to act is now: address the causes!”  She’s smart, that @stales.

Other cancer survivors joined in, telling me that they felt left out too.  After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.

That’s what it is, you know.  It’s not a choice.  It’s not just another treatment option.  Women have mastectomies, double mastectomies, reconstruction (or not) because we have no other choice remaining that will give us a shot at life — life with our children, our partners, our families, and our friends.  And so we tearfully bid our breasts goodbye.  We submit to surgery, weeks of the aftermath, drains and gashes where our breasts once were.  We submit to doctors and nurses and students gawking with surprise when we disrobe for exams (not the oncologists, of course, but we still need regular checkups like everyone else, you know).  We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage.  We submit to lymphedema therapy, taking up precious time, time that we fought for, time that we sacrificed for, but time that nonetheless much be used for even more medical treatment, to deal with the aftermath.

And then we go shopping.

Clothes that fit just a few months previously don’t fit anymore, you see.  Every. single. shirt. is stretched out over the chest, and most new ones don’t fit right either.  Princess seams, sewn to flatter the big-busted and small-busted alike only serve to remind us, the no-busted, that we are no longer princesses.  V-necks are flattering, but only if they are not too deep, cut to show no cleavage, as our cleavage has been taken from us as well.

And, for a while, the reminders are everywhere.  Every TV commercial with the Victoria’s Secret angels rankles.  Every low-cut shirt sparks the tears.  Every nightgown cut to flatter falls — flat — and we cry into our pillow.

We are aware, you see.  We are all too aware, and we work to escape the reminders.  Our friends dance around us for a while.  They don’t invite us to the pool (have you ever gone swimsuit shopping without your breasts?).  They are gentle, and careful, and form a wall of support around you.

But eventually, life moves on, and the wounds scab over, and the scars begin to form.

Until one day, one day, when a harmless meme rips them off, and you realize once again that you will never be the same.

Edited to add:  Well, this struck a nerve.  Over 35,000 people have read this post, and many have written in asking what action they can take.  Here are some ideas.

Breast Cancer Awareness Month

Happy Breast Cancer Awareness Month!

If that’s not a contradiction in terms.  You all have heard so much about breast cancer here over the past few months that I won’t bore you with the details again.  You know that there is more than one type of breast cancer.  You know that there isn’t always a lump with breast cancer.  You know that 1 in 8 women will contract a form of breast cancer in their lifetimes.

You know how to do your self-exams.  You know to call your doctor if there is ANY change in one of your breasts.

You are an amazing group of women and men.  You are Team WhyMommy.

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If you happen to do a Breast Cancer Awareness Month post yourself this month, or an event like CandyGirlFlies, please let me know — I’ll be happy to link to you and feature you on this permanent page of my web site!