How did we get here?

January 22, 2012

— A conversation with my husband, shortly after arriving home this afternoon with fresh oxygen tanks, spots on my liver, fluid pushing around my lungs (likely filled with cancer, as are the tumors inside) and at least one broken vertebra that must be healed before we resume any kind of treatment. —

How did we get here? I asked my love, across the bed strewn with children’s toys, books, and an oxygen tank.

We got here because of your amazing strength, commitment, and love for your family that you have shown since you were diagnosed – almost 5 years since diagnosis, 4.5 years since we were afraid it would end, 3 years after most IBC patients make it, all because of you. The medical details don’t matter. Our life has been a nonstop adventure.

Nonstop. I agree. And because of you, always at my side, supporting me, joking with me, taking me to yet another appointment and holding my hand. Kidding me about the speed I drink the contrast shakes, and raising eyebrows with me as the tech’s hands jiggle as he tries to place the line.

What, aren’t you going to blog anymore goodbyes?

I am not blogging goodbyes. I am not saying goodbye to you yet. I won’t.

You will have to soon. Hospice comes in an hour, and since I need Pallative radiation to fix the latest spine fracture, I can’t go to treatment anymore. We need hospice, at least for a time.

No matter what, you deserve to feel better right now, and you deserve a chance to enjoy family and friends, and if that means we use hospice, or go to the moon, or paint you green, then we will do those things. I have dibs on the paintbrush.

Green’s really not my color.

I have not yet encountered a color you could not make yours. Purple?

Purple. I’ll change clothes and listen to her when she comes, but I can’t promise that I’ll be sparkly to the hospice lady.

I’m willing to bet the hospice lady is not expecting to be greeted with confetti and song.

Good point. More tomorrow, my friends. I hope.


Pain

October 4, 2011

I’m in pain, I whispered to the organizers of last weekend’s retreat.

  • They brought me a couch to lie on for two days, and we developed ideas for coping with chronic pain from my metastatic cancer, among many other coping tools and discussions that weekend.

I’m in pain, I softly explained to a stranger who saw my tears and stopped me in the hall.

  • He said comforting words, put his hand on my shoulder, and began to pray (more about this story later).

I’m in pain, I cried to my mama, and to my husband’s mama.

  • They tucked me in bed and brought me water to flush the chemo out of my system.  My father, and my husband’s father, bustled around the house, playing with the kids and finishing projects that we had left undone since their last visit.

I’m in pain, I cried to my sweetie,

  • He cuddled me and comforted me, night after night, and arranged the pillows about me.

I’m in pain, I cried to my friend,

  • And friend after friend after friend has brought me casseroles to free up my afternoons for snuggling with the children, comforting them as well.

I’m in pain, I cried to my blog,

  • And many, so many of you have brought me sweet words of comfort and calm and words telling me that my words have helped you, or my IBC work helped a friend, or that Crickett’s Answer has given out lymphedema sleeves and gloves to 52 needy women who didn’t have what they needed before.

I’m in pain, I cried in my doctor’s office on Thursday,

  • She ordered CT scans and MRIs, passionate about finding the cause.  Why would the pain be increasing when the chemo was attacking the cancer cells inside?

I’m in pain, I told the pallative care specialist,

  • He tripled my dose of oxycontin, increased the other as-needed drug, and reassured me that I’m still on the low-middle end of need.  He has patients on ten times my dose, and they’re functioning.  If I need this to function, to sit and stand and walk, then it’s fine for me to have these drugs.  That’s what they’re for.

I’m in pain, I told the psychiatrist I found after it all went to shit in July and I was hospitalized for pain that took away my normal life.  I’m sad because I’m in pain.  Do I need more meds?

  • No, he said.  This is real sadness, because you’re in pain.  And he offered me a chocolate bar, dark with sea salt sprinkles.

I’m in pain, I whispered to my sweetie as we drove back home, nibbling the chocolate and clutching the scrips.

  • I know, he said, but I love you.  And he took me out for pizza in the warm fall day.  As the sun shined on us, I smiled again, for all of it is do-able because of those three words.  I love you.

After the clinical trial

March 23, 2011

Lego Warrior Princesses go to the oncologist

We stopped the clinical trial.  I believe I mentioned that before, but since then I’ve seen my oncologist (the army of princesses came with me, as you can see at left) and we’ve agreed to quit the trial completely, and to stay OFF the meds that made me so sick this year (I was actually bedridden, and layers of my feet kept peeling off… not fun!).  I’m still taking the Femara, which will hopefully starve the cancer cells of the estrogen they need to grow, but the other medicine is gone, and I am actually *gaining* strength and energy every day.

I’m finally feeling like myself again.  Yes, really!  This is a Big Deal for someone living with cancer, and it was absolutely, positively the right decision for us.  No, it is not the best chance we have to beat the cancer back (I think. But we don’t really know, as the medicine combo that was being tested is still being tested for effectiveness, and I *am* gaining strength without it, which has to be a good thing). YES, it was the right decision FOR US.  Stopping the trial HAS given me back my quality of life, and I both celebrate it and guard it jealously. 

Something in the morning light reminded me of that long-ago Fall in 2007, as I lay in bed trying not to die of cancer *or* the treatment that promised me new life, as the “red devil” (A/C) chemo took its toll on my body and my hair and even the use of my legs.  I lay in bed in pain and worry, terrified that I wouldn’t even live to see the Spring.  I remember those days, but for now I can just remember, and then put them behind me, as memories of a time that is not now.  Today, there are new buds on the trees, signs of new life, and daffodills at the playground. 

I did live to see the Spring.  I did.  I lived to see Spring 2008, 2009, 2010, and 2011.  Four Springs – and Summers, and Falls, and Winters that I only got to enjoy because of the wonderful and terrible miracles of modern medicine.  And while treatment is never fun and often painful, each step in the treatment has eventually brought healing, and along with that opportunity.  Opportunity to create wonderful memories of stargazing with preschoolers, opportunities to pull back the curtain and start discussions of things that never should have happened, opportunities to write my book about the people of recent space missions, and opportunities to spend time with old friends and new, even those who, if there were no treatment, I never would have even met.  That’s pretty amazing, isn’t it?

This Spring, I live with purpose.  I am grateful for the opportunity, each day, to live.  I laugh with my children and cheer them on when they explore new things – even if it’s climbing a little too high in the trees at the park, or “making soup” out of woodchips and water in the dog’s bowl that we have to clean out and clean up afterwards.  We talk and laugh and cry and dream together — because the terrible treatments have given us a new opportunity to be with and to love one another.


Elizabeth

December 8, 2010

Elizabeth.  Oh, Elizabeth. 

Just yesterday, we heard that Elizabeth Edwards had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my body.  For fifteen weeks, I’ve been faithfully taking a chemo pill designed to sweep my body clean of any stray cancer cells left after this spring’s surgery and this summer’s radiation treatments.  We had hoped to finish the treatment with three more weeks, but it was not to be.  I’m too tired.  I’m in too much pain.  My body isn’t getting a break, and it isn’t getting a chance to heal. 

Like Elizabeth, I have two young children.  Mine are 3 and 6, about the same age as hers were when she was first diagnosed, but mine are veterans of the cancer treatment dance after more than three years of treatment, remission, and recurrence.  My children come to the hospital with me for checkups and blood draws.  They wait patiently during physical therapy appointments, playing with matchbox cars as the scar tissue is ripped off my chest and I work to regain function in my arms.  They help me pull my lymphedema sleeves on in the morning, settle for quiet playdates instead of park and museum adventures, and have adjusted to quiet, easy pets like fish instead of boisterous puppies as we had planned.  They cuddle with me in the afternoons when I have no energy, and happily share their legos and playdoh when I do.  They are my constant companions, my joy, my loves, and my reasons for living.

And when the little one woke me in the dark of night worried about monsters outside his window, I held him and comforted him and sobbed and sobbed, as I thought about Elizabeth’s children – and my own – and how no child should ever have his mother taken from him because of cancer. 

Not hers.  Not mine.  Not the women that we’ve lost this year or the women we’ll lose next year. Cancer is a thief that separates mothers from children and tears our world apart, one mother, one child at a time.  The grief that we feel at losing Elizabeth Edwards, mother, daughter, advocate, and friend, is real, even if we never met her, because she has showed us the depth of a mother’s love for her children, a love that keeps them close and touches us with its strength – and yet, she was taken from them anyway.  If she couldn’t triumph over cancer, how can we? 

Susan Niebur writes at Toddler Planet and Mothers With Cancer, a group of twenty women writing their truth online.  To help find the cause and the cures, please join the Army of Women participating in research studies.  If you need help, please call the American Cancer Society at 1-800-227-2345.  No one has to face cancer alone.


Last time, this time

November 27, 2010

Little Bear, while Mommy was waiting for test resultsLast time, my love for my newborn baby and his big brother — and the Daddy who danced in the rain with us — pulled me through.

This time, they pull me — but my work pushes me.

And this time, I make time for that work, for I understand that it drives me forward into the future.  A future that I can create.  A future that maybe, just maybe, can be about more than surviving to erase the maybe-days of a sad childhood that otherwise awaits my children* — a future that is also about me.  My work.  My loves.  My legacy. 

A future that is still open to me creating a new legacy, unlimited, rather than a month here and there alloted to put the polish on the small little legacy that I once thought would sit quietly in the corner of my lifetime, had it ended with my diagnosis in the too-bright summer of 2007.  Two little boys.  A five-year career with NASA.  An overgrown garden.  And a love that was at once the foundation and the fruit of all of these.

To this, I will add a return to faithA book, or two.  A job well done.  A little extra exposure to a shared love of science among children of the internetA tight web of friendships among people who had no right to ever expect to meet.  And with faith and science and love comes hope.

hope that i am not done writing my legacy.

* It is a cold calculus, but true nonetheless:  Every day that I can bear the chemo and push forward with confidence is a day that my children can live and grow in the sunshine of a “normal” childhood, and a day that I know that they are not saddled with the sadness of living without their mother.  I seek normalcy for them above all else, and I do not hesitate to add moments of joy and abandon and paddling in the creek without our boots on.  For of such everyday magic a childhood is made, and I am determined that my little loves will have good memories of growing up, of nature, and of being with their mama as she loved the world, and, for a time, it loved her back.  Today I embrace nature, and faith, and joy, and hope without reservation, in the hope that it will be reflected in their own lives one day.  If I cannot be there for them as they grow all the way up, I can at least give them a good foundation to build on.  I can give them today.  


BlogHer Voices of the Year

August 6, 2010

BlogHer Voices of the YearIn April, Amy @Teachmama nominated me to read this post at the BlogHer Voices of the Year Community Keynote.  I was selected (yay!) but the original post was far too long.  Here’s the short version, which I hope I’m reading right about now in less than four minutes.  🙂 

In the name of awareness

Six months ago, colors started appearing in my friends’ facebook updates.  Lots of black, some pink, a virtual rainbow.  I wanted to play along by posting the color of my bra too, but I couldn’t because I don’t have one.  I don’t own one.

Two years ago, I had a double mastectomy to remove the cancer that was trying to kill me.  I had Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years, and presents without a lump.  First the cancer, then the chemo tried to kill me, and both of them almost succeeded.  I had to have my breasts removed.  After that, radiation, more surgery, and – well, I have some history here.

I tried to shrug it off and play along.  All I could write was, “None. In fact, I don’t even own one!”  I watched my friends play along too, 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?

I talked to friends about it on twitter.  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 – amputations – 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.  We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage.  We submit to weeks of 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 are gentle, and careful, and form a wall of support around you.  

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.

Thank you for visiting my blog!


Fighting breast cancer — with our actions, and our words

August 3, 2010

BlogHer asked me to write a post for them this week.  I dillyed and I dallyed, hesitant to dip my toe in over there, and to ask the blogosphere for a single thing more.  But in the end, I did, because the cause they asked me to write about — blogging about the Avon / Love Army of Women and the opportunity to make a difference with our words on October 1, was important. 

Here’s how it starts.  I hope you’ll click through to read the rest.

One in eight women will get breast cancer.  But you know that, right?  You walk in the walks, you do your self-exams, and you worry about your friends who find a lump or start treatment at an early age.  October floods the shelves with cutesy pink ribbons, yogurt lids, and vacuums, and you roll your eyes in private at all the attention given to breast cancer awareness.  You’re AWARE already, and lament that with all the attention and funding given to breast cancer, there should be a cure by now.

You’re right.  There should be a cure by now. (more at BlogHer)

Comments are welcome here or there.

If you’re going to BlogHer this weekend, please join me at any or all the following events:

Session 1: Stimey‘s session: 

Blogging Autism: Shattering Myths, Opening Eyes, and Finding Your Tribe 

Session 2: Change Agents: @fakeplasticfish @lawyermama Melissa Silverstein and Gina McCauley speak on

Creating Tangible Social Change: How to Move People to Action

Session 3: Change Agents:  @JessicaAPISS, @TechSavvyMama, @Teachmama, and I are facilitating a Room of Your Own for discussion and community-building:

Resource Blogging: Serving Your Community One Post at a Time

Community Keynote, BlogHer Voices of the Year Gala and Art Auction

Featuring my gold shoes, and a post yet-to-be-announced

Session 4: Our friend @punditmom, @phdinparenting, and @stephanieroberts talk about the power of women blogging online:

Change Agents: Radical Blogging Moms: Don’t Even Think About Not Taking These Moms Seriously

Morning Keynote:

The International Activist Blogger Scholarship Recipients Esra’a Al Shafei, Dushiyanthini Kanagasabapathipllai, Marie Tringona and Freshta Basij-Rasikh are appearing on BlogHer occasionally, and their words are a peek into a different set of worlds I was not even aware still existed. This is important, and I’ll give up a competing sponsor event for this. These women are incredible, speaking up wtih their words as their very lives are threatened.

Session 5: Change Agents: Morra Aarons-Mele and Stephanie Wilchfort are leading an intriguing action-based session that I’m really looking forward to:

Screw Work-Life Balance: We Need Work-Life Policy!

What other sessions are you going to?  Why?