Wednesday, November 21, 2012

Thanksgiving Past

When I was a very young girl, my mother let me skip the last day of school before Thanksgiving. How I loved those days.  A break from the ordinary, the air thick with anticipation for the fun, food and family that was to come.  

Every Thanksgiving, my family and my aunt's family would alternate houses.  It was a fact, a given we relied on without question.  Thanksgiving would be either here or there.  No where else.  I can still see my mother in our kitchen, white phone in hand, coiled wire stretching to wherever she was, planning menus with her sister, gossiping about in-laws.

It was great having a big crowd at our house, but so difficult waiting for their arrival.  When would they get here?  The slowest morning ever!

If we were the guests, we'd get in our car bright and early for the long two hour drive to my cousins' house out among the New Jersey cornfields.  Some years we'd detour through the Bronx (NYC) to pick up my grandparents and after four hours and a couple of bouts of car sickness, we'd arrive to a house full of cousins, games in the basement, platters of food, a warm kitchen and our moms -- Two sisters, together again, chatting non-stop.  We'd stay very late, fall asleep in the car and talk about doing it all over again next year.

Over the years, the usual crowd scattered about.  My brothers often went to their wives' families. My aunt had died swiftly and horribly from breast cancer.  My mother had dealt with her own diagnosis, but persevered, flourished for a long time and a happy Thanksgiving could still be found in our house.  I would leave my Manhattan apartment for the comforts of home, a long weekend with nothing to do, but eat, sleep and hang with family until it was time to go back to my insular world in the city.

One year my mother was too sick from her breast cancer recurrence to host Thanksgiving and didn't feel up to going anywhere.  My brothers were off with their growing families and I had been invited to spend the weekend with my boyfriend's (husband to be) family.  I wanted to go, but felt the pull of my parents alone on Thanksgiving.  I remember my father asking what I would do.  He said we'd have Thanksgiving.

The lure of a familiar Thanksgiving was too great.  Visions of it blotted out reality and when I arrived Wednesday night I was annoyed to find a dark, quiet house.  No bustle, no music, no warm smells wafting from a bright kitchen.  Not even a cold turkey taking up space in the refrigerator.

Zero signs of a happy life.  Just screeching evidence of one ending in a bed down the hall.

I'm not proud of my next moments.  Instead of understanding, pitching in, cooking, helping any way I could, I took the role of petulant child and gave my father grief for ruining my holiday.  I could have been somewhere with people celebrating, laughing...not dying.

There was no Thanksgiving here.

The words I said to my father still sting in my memory.

"Now, I'm stuck here for the whole weekend."

I remember his justified anger, his voice breaking, "Thanksgiving, it's her last one."

I knew that...somewhere inside, but maybe by wrapping myself in memories of Thanksgiving past I could ignore the devastating situation that was playing out right in front of me.  Pretend it wasn't truly happening and the unthinkable wouldn't, couldn't be real.  But, of course, it was and even the strength of denial couldn't stop it.

Less than 4 months later she was gone.

I want to say I'm sorry.  Sorry for being so bratty.  Sorry for acting as if my good time was more important than my mother or my father, who took such amazing care of her.  Sorry for the words left unsaid on that day, on many days...

Happiness is not a divine right and sometimes life craps all over it, but it's ingrained in me to be thankful for my childhood, for the love two sisters had for their families.  Thankful for the joyous anticipation I still feel and am trying to instill in my own children as Thanksgiving approaches.  As my mother did for me.

I'm thankful for my family and friends, near and far.  I'm thankful for NED and most certainly for the house full of people I'm lucky enough to surround myself with on this special day.

One, so very different, so very far from that dark, quiet house 12 years ago when there was no joy. I wish I could let it fade away, wipe it from my brain and focus on the many other days that bring me to still love this holiday.  Love it as my mother did.

I'm working on it.

And to all of you who read my words,

I am so thankful for you and your unwavering support and encouragement.  I wish you your best Thanksgiving yet.

xoxo



Monday, October 1, 2012

HOW and Why

Hello Blogosphere, it's been a while...

I was away doing what people do, whether they've been diagnosed with breast cancer or they haven't.  The things people do before breast cancer brings it all to a screeching halt.  I was taking care of my family, working a little, traveling a little and all the time pretending it was the old days when I could live this sort of life.  One of summer days and small boys, beaches and car rides. When drippy ice cream cones were my biggest problem of the day.

Remember days like that?

I spent my summer stepping back from cancer, from this blog.  No appointments to dread, just summer followed by the usual back to school bustle.  I have to admit, it was nice.  I was burnt out from writing about cancer.  From reading of online friends dealing with recurrence, the never ending pink fight.  It's all very draining, and though I thought of expressing it here, I couldn't.

In the two years since this blog's inception, I've had no problem sharing my angst and it was often met with great compassion, understanding and encouragement from our online community, but these days complaining doesn't feel right.  At this very moment in time all is fine with me and I can't complain knowing that.

If I've learned anything from writing here and meeting other women with cancer is there are thousands living these days with metastatic breast cancer and they deserve their place in our blogosphere.  They need to be heard, their stories shared and made to feel they matter because after all, metastatic breast cancer is what kills and it can hit anyone, anytime and I don't ever, ever go a day without remembering that.

So, though I lived a normal summer, acting as if all was right in my world, I felt like an impostor in my own life.

A wife and mother living as if the dormant monster chained in the closet couldn't possibly break free, but it was a lie.  I still looked over my shoulder, wondering, waiting, remembering it touched me once and by its very nature wants to again.

Even with no evidence of disease I can't let it go, because breast cancer doesn't let us go.

No one knows how or why it returns or really why it even starts.  Research is the answer. More research is needed to understand, prevent or cure metastatic breast cancer and only through more research can the initial causes of this hideous, relentless disease be determined.

“We need to go beyond a cure. We need to stop people from ever getting breast cancer in the first place.”
— DR. SUSAN LOVE

Today, October 1, The Dr. Susan Love Research Foundation is launching HOW, the Health of Women Study.  A worldwide, long-term online study open to women and men 18 years and older with or without breast cancer.  By compiling and studying answers to questions about one's health, family, job, and other topics, researchers will gain a better understanding of breast cancer and its possible causes.

By registering online at HOW you can help put awareness into action.  There is no cost or permanent obligation.  Once registered, you'll receive periodic questionnaires that you can fill out at your convenience.  If you'd rather not participate at any point, you can opt out of further communication.  There's no down side.  Your privacy is protected and your answers may contribute to the future prevention of breast cancer.

For the most part, breast cancer takes us by the hand and leads us down a path of its own choosing.  We stare it down with treatment and surgery hoping for many more years, but by participating in HOW, we're doing something more than waiting.

We're actively helping researchers figure out a way to stop breast cancer once and for all.

So no one need look over their shoulder ever again.

I hope you'll join me in HOW, Health of Women Study. 



Tuesday, July 10, 2012

Thoughts for Others

I have the long awaited follow up post about my journey with Dad nearly ready to go.  Though not quite finished.  It lives in a spiral notebook, sloppy script, words crossed out, waiting for its ending.

Despite having experienced the journey and enjoying the wedding, writing the ending is not something easily accomplished right now.

That post seems flippant, too quick to take lightly the unbelievable luck I had in being able to make that trip, travel with my dad, see my family, watch my cousin get married.  I can't post that right now because in this moment, I don't feel that way.

In the past week, I've read the words of two bloggers documenting their last days, one from Inflammatory Breast Cancer, the other from Ovarian Cancer.  Both ladies were diagnosed in the spring of 2009...like me.

I can't begin to know what is, or was, going through their minds.  I don't know how they managed to leave their doctors' offices after being dealt their new, shortened reality.  I guess it's like anything else...get out of the chair, move your feet, open the door, drive home...

I'm so sorry for these ladies, these young mothers having their lives cut short.  These women who sat in an office in 2009, as I did, but heard a very different prognosis.

I am not writing now out of survivor's guilt.  It's sadness.  It's anger.  It's a little push back into advocacy and a renewed desire to make sure people everywhere know what a crock pink fundraising is.

I'm writing with a mission to get everyone to sign up with Love/Avon Army of Women so researchers can learn the causes of Breast Cancer in order to understand how to prevent it.

I'm writing to say Ovarian Cancer is real and deadly, though it does leave some signs if we only know to look.

And finally, I'm writing to remind myself to appreciate the good stuff, even the not so good stuff, because it can all go away in an instant, blown by the winds leaving nothing, but words hanging in the air.

My thoughts and prayers go to Ashley's family.  I did not know her as she wrote her final words on Ashley: Warrior Mom.  My thoughts and prayers go to Tina whom I followed at Tina's Journey, almost since I started blogging.  I didn't see it ending this way.

I've mentioned in previous posts that I rarely write directly, as I am now, on my blog.  I almost always write in a notebook and then revise, revise, revise in search of the perfect sentence, tone, whatever, but today, at this moment I needed to share the emotion I sense building up.  The whole reason I write to begin with.  I may regret it tomorrow, but for now I feel better for sharing.

I love our blogging community.  I hate cancer.

xoxo





Tuesday, June 26, 2012

Two Roads

If you had the chance to change your fate, would you?

That question came at me recently while sitting with my boys in a theater watching a trailer for the movie, "Brave."  The main character, a young girl named Merida, asks that very question as the film fades to black leaving the opening date looming large on the screen.

June 22   

Just as it looms large in my brain.  The date of my bilateral mastectomy, three years ago.

Did I change my fate on that day?

I suppose I tried to.  The decision to have a bilateral mastectomy was mine. The idea...mine.  It was not the first suggestion of any surgeon since the only evidence of cancer was small and contained.  Lumpectomy was the preferred procedure.

Breast Preservation was a term I learned then and heard quite often in those early diagnosis days.  As if saving breasts were the point here, the ultimate goal.  As if just cutting out the cancer as carefully, neatly and least intrusively as possible was the mission and perhaps, for some, it is.  I remember sitting with the first surgeon I consulted thinking I was missing something because although saving breasts are intrinsically tied to saving a life for some, it wasn't for me.

I think here's where perspective comes in.  I had just seen too much.  Knew too many people who had died.  People who were declared fine for many years, only to… Well you know.  I'm actually tired of writing it.  The same old story.  The cancer came back.  So in my mind, as I sat being told survival rates for those with mastectomy versus lumpectomy were basically the same, I knew I couldn't do it.

Accepting that decision was another matter.  Acceptance did not come easily.

I was reminded of Robert Frost's poem, The Road Not Taken.

Two roads diverged in a yellow wood,
And sorry I could not travel both

My mental struggle took several weeks to clear.

Every person, every diagnosis of breast cancer is unique.  No two circumstances are ever the same and neither are the ways of approaching, dealing and living with this disease.  No one is right or wrong.  Each moment is personal and for me...I knew I couldn't walk away after a lumpectomy and weeks of radiation feeling positive about my outcome, in spite of comparable statistics.  I knew I'd question my choice everyday, worry I hadn't done enough, harbor regret.

In the end, I guess it mattered more for the peace of mind it granted me, rather than better odds.  I believe I had done all I could to stave off recurrence, knowing full well, neither method was guaranteed, but now I wouldn't second guess myself and that...was everything.

Did I change my fate that day?

Who knows?  But, three years later to the day I was far away from that time, that moment, even the place where it all happened.

Here, looking out at the sea and my boys, whom I've had the pleasure of watching grow three years older.


It's a good start, despite the difficulties of reconstruction and regardless of what may come, I believe in my decision and the path I started on that day.


Did you struggle with surgery options?

Any regrets?



Thursday, May 31, 2012

Follow the Butterflies

Nancy's Point today is remembering her bilateral mastectomy.  She's also wondering if a day can go by without thoughts of cancer.  I've been pondering that myself lately, as the three year anniversary of my diagnosis on May 1, has come and gone.

My head is still very much in the cancer world.  The anniversary of my own bilateral mastectomy is June 22nd.  I can't imagine now, how I was a functioning human being in the days between those two events.  I just don't know where I found the ability to get out of bed each day, but I know I did it.

In those days my oldest son was playing in the local T-ball league and I took him to games.  I remember standing on the sideline in the early evening light with my secret while he played.  He was also finishing up preschool then and I sat among parents watching their little ones dressed in cap and gown claim their diplomas, dreaming of a future, while I held my secret close wondering what was still to come.  What was yet to be.

Somehow, it's three years later and the other day I was driving to my breast surgeon for a routine visit.  My son's spring concert was later that evening and I had a concern to discuss. Things seemed eerily familiar.  What turned out to be a scar from one of the mastectomy drains, had me in a near panic.  Until I knew for sure what that ridge in the skin that I somehow never noticed before, turned out to be, I imagined the worst.

I saw no possible way this visit would turn out well.  I thought for sure I'd be scheduling an MRI or worse, a biopsy, as soon as possible.  And I wondered, as I drove in the rain, as I did the day I got my diagnosis, how would I handle it?

How could I sit there and hear those words, "scans," "biopsy," "cancer," all over again?  I didn't believe I could.  There in the car, I knew I wouldn't be able to handle it.  The last three years were such a struggle to climb out of the hole cancer dropped me in, there was no strength left to do it again.

In the midst of planning a good summer with my boys, my mind no longer envisions warm, sunny days, road trips, movies.  I no longer go there.  How could I make plans...what if its come again?  Everything goes out the window, life comes to a screeching halt...again.

I was driving alone.  Who would pick my crumbled heap off the floor when he said the word?

Where was the bravery so many talk about?

Certainly not riding along with me on this day.  I felt like a sissy.  Thinking I couldn't handle what might come my way.  How could I not?  What choice would I have?

My surgeon knew immediately what it was.  Drain scars?  As soon as he said it I knew in my bones, he was right.  The one scenario I never imagined, of course, the innocuous one.  He spent the next five minutes reassuring me, reiterating how positive he was, without a shadow of a doubt... But I still didn't breathe until he left the room.

I knew then, I could never truly live my life without thoughts of cancer.  It's stronger than my will.  Its very nature sucking me in like a black hole time and time again, with every symptom, every run of my imagination.  It's exhausting.  And sad.

Even when the news is good, when it's the best possible news, as on this day.  The emotional roller coaster is draining.  It's just not that easy to go from panic with entire visions of cancer playing out in my head to... All's fine.  Go home.  Live your life.

I'm grateful for the good news that day.  I know some people never get such a reprieve.

I wish I knew how to put cancer in a place where it couldn't haunt me.  Maybe the answer is more time.  Three years is not long enough to get a day free of cancer thoughts.


Maybe I just need to try harder to let it go.  Let the good win out.  

Follow the butterflies, not the spiders.





Tuesday, May 15, 2012

The Greatest Gift

This past Saturday, my boy turned eight.  Eight!

Where has my little one gone?  I looked away for just a moment and years slipped away.



I'm melancholy for days of a tiny boy dressed in onesies and blue jeans, small white sneakers on feet not yet walking.  A bald head, so smooth to touch, bright eyes and a smile.


My pal, my little man, who went everywhere with me.  Graciously listening to my ramble from his car seat, greeting me every morning with a smile and at night, a snuggle, while reading Good Night, Moon and Big Red Barn.  Those books, now tossed by the wayside, making room for Harry Potter and Diary of a Wimpy Kid.


What a beautiful baby you were.  Happy, curious, never once bothered by two strangers whisking you away from all that was familiar in a northern Russian baby house to a new home far across the sea.



I think you knew we belonged to you, as much as we believed, you belonged to us.


I ponder your birthday...the day you were born and how I wasn't there to greet you as you emerged into the world.

Who welcomed you?  Who was first to hold you?


Those thoughts used to break my heart, distraught I'd let you down by not being there in your first moments, your first weeks, as I've been everyday since you were six months old.

I'm better about it now.  I understand you were in good hands until you were in mine.


This year, your birthday and Mother's Day collided on the same weekend.  I wasn't a mother until you.  Motherhood was out of my hands until a woman I never met made it possible.  I owe so much to a stranger somewhere on this planet, maybe still Russia, maybe not, for giving me the greatest gift of my life.




You.

And I wonder, does she think of you?  Of where you might be, if you're safe?  If you're happy?

I hope somehow, she knows...You are.  For that is the only gift I can give her.


I see you now, my eight year old.  So grown up, in such a hurry to rush headfirst into being a teenager.  Before your time.

Before I'm ready to let go of my little one.

Slow down, please.


Happy birthday to my beautiful boy.







Sunday, May 13, 2012

A Mother's Day Wish

For all the mothers and their daughters.

For all the mothers loved by sons.
 
Please take a moment and read about Nancy Wyatt and her Mother's Day wish for a future without breast cancer and then like Nancy and myself, consider joining up with the Love/Avon Army of Women.

Together we can help researchers discover the causes of breast cancer and just maybe, learn to prevent it so our future generations of daughters can live a life without fear of breast cancer.

Thank you to Nancy Wyatt for sharing her story.


     --------------------------------------------------------------------------------------



This Mother’s Day, I Want to End Breast Cancer

To Every Mother, Daughter, and Sister:

    As a mother of two beautiful daughters and now grandmother to a pack of joyful and spirited grandchildren, I have made a simple wish for this Mother’s Day. I’m not looking for bouquets of flowers and bountiful gifts. This Mother’s Day, I want to end breast cancer and my wish is that we join together to be the generation that puts an end to this disease. Together, we can create a world for future mothers, daughters, and sisters without breast cancer.

When the “oldest” of my twin daughters found a lump in her breast at 32 years of age, we were all devastated. I was so scared for my daughter. This dreaded disease was an unwelcomed visitor in our family history, as my paternal grandmother had also been diagnosed with breast cancer. Sure enough, after a mammogram, ultrasound, needle aspiration, and finally a lumpectomy her lumps were found to be malignant. Her surgery was followed by a long year of chemotherapy and 8 weeks of radiation treatments.

Things seemed to be going well and we all thought she was doing just fine, when she discovered another lump in her scar tissue. She underwent a second lumpectomy and four days later, what the surgeon originally proposed as additional scar tissue, came back as cancerous. They recommended chemo again but my very tough, “I can handle anything” daughter broke down in tears, as she just couldn’t go through it again. After much thought and lots of prayer, she decided to forego chemotherapy a second time. She ended treatment in 1995 and today I’m happy to say that she’s healthy and still enjoying life to the fullest.

Unfortunately, this was just the beginning for me and my girls. Eleven years after my daughter’s initial diagnosis, her twin sister, who was 40 years old, had just delivered her 5th baby. While nursing the baby she felt a pain in her breast. Much to her chagrin, she discovered a lump in her breast. Sure enough, this lump turned out to be malignant, too. She, too, went through a year of chemotherapy. Again, I feel so fortunate to report that all is well and this busy mom of five is running around like crazy with all her kids and loving every minute of it.

We are thankful for every new day and try to put the ugly days behind us. But three years ago, we learned that breast cancer was not done with us just yet–when I myself was diagnosed. I, like my twin daughters, underwent a lumpectomy, followed by chemotherapy and radiation. Although science has made much progress with treatment options, we still don’t know how to PREVENT breast cancer.

I, too am now doing fine, but as the days go by and I see my granddaughters grow up I worry about what lies in their future. Successes and triumphs, relationships and heartbreaks are sure to come, but if I could be a part of eliminating one thing from their future…it would be breast cancer.

My daughters and I support the Dr. Susan Love Research Foundation’s Love/Avon Army of Women Program because its working to eradicate breast cancer and improve the quality of women’s health through innovative research, education, and advocacy. What sets the Dr. Susan Love Research Foundation apart from all other breast cancer organizations is its mission to move breast cancer beyond a cure by understanding the causes and ways to prevent it. They are conducting research that is focused on getting to the root of the disease and ending it once and for all. It is their firm belief that at the core of effective research is a need for scientists, women and funders to work together.

Talk to your friends and spread the word. Get everyone you know to sign up for the Army of Women, be a volunteer and help eradicate breast cancer! This Mother’s Day, give a gift to your daughters, their daughters, and their daughters to follow. To support our work, donate today.

Help build a world without breast cancer!

Sincerely,
Nancy Wyatt
Army of Women member, Los Angeles, California



Wednesday, May 2, 2012

Just Another Day

I'm supposed to write today.  I was supposed to write yesterday and the day before, but I'm not finding the words and my mind keeps drifting off to other things.  Like the bread I have rising in the kitchen.  Another 30 minutes and I can stick it in the oven.

But, how can I write about that on this day in May?

The beautiful month of May, normally treasured for my birthday, my oldest son's birthday and my little guy's adoption day anniversary, now marred by the memory of a phone call on a rainy May 1st, three years ago.

The phone call that lead me down a path I never wanted to wander, taking me right up to this very moment, to this very page on a blog I never could have imagined.

What am I supposed to say about that day?  I've written about it before, wrote about getting that call.  Where I was, what I did then, but now...I've got nothing.  The passage of time hasn't unveiled any clever insight. There isn't any great reflection spilling forth making sense of the whole mess.  Making it acceptable or okay, because it's not and never will be, not for me or anyone whose life is invaded by cancer.

If I could choose, I'd push it behind me and never look back, but the memories come.

I don't know what kind of person I'd have to be to escape thoughts of a very typical day, overflowing with plans of raising children, ideas of growing old with my husband or simply savoring a cup of coffee and seeing it all shattered by a moment on the wrong end of a telephone call.  All that..good stuff... scattering away to the fringe of normal life, leaving only room for the everyday, all consuming one cancer has just dumped on me.

How does one not think about that?

If it's possible to forget, I wish someone would tell me how.

Still, three years later, May 1st is just another day and my little guy had to go the dentist.  He had a cavity and though he's only five, this is not his first.

My little boy, it's always something.  His early days were constant sinus and ear infections requiring surgery at three to remove his tonsils and adenoids.  At one, he nearly broke his nose falling, carrying a small scar across the bridge of his nose to this day.  Two weeks ago, he had his front tooth knocked out in an unfortunate school incident and over the years he's had four cavities, despite having the same dental hygiene habits as his brother, but that boy, my older son shines on...skipping through life with a smile and a wave, unfazed, untouched by the troubles heaped on his brother, never slowing for anyone or anything.

It's my young one that falters and pushes on and this day, amidst my memories, I watch him soldier through another filling while clutching his stuffed polar bear.  Halfway through, when finally overwhelmed by the noise and the voices and the trappings of dentistry in his mouth, his eyes filled and his little hand raised as if to say, enough, and my heart broke.  I would have given anything to take his place, sit in that chair for him, have the dentist drill my tooth instead.  I could handle it.  I know how it feels to sit and endure until someone says I'm done.

If only I could do that for him.  Take away the dentist, wipe out the years of painful ear infections, wish away his continuing struggles to matter in the eyes of his big brother.  Take away the pain of disappointments yet to come on the playground, in his backyard, in his life, but I can't, just as I couldn't do it for myself that day three years ago.

My little one needs to find something within himself.  I could only sit near touching his leg, letting him know he wasn't alone and when I thought he couldn't take another minute in that chair, he amazed me with his perseverence.

He did it.  All done.  Off he went to claim his prize from the dentist's reward bucket.

Maybe, that's how I should see May 1st from now on, not for what it took from me, or dumped on me.  Maybe there is no lesson here.  It was just a day I got crappy news and like my little guy, I needed to stick in the chair until the hard part was over.

There might be prizes to be had.



Wednesday, April 18, 2012

Them and Me

I've been waking late at night to greet a returning visitor.

Hello, You that Shall not be Named, (stealing from Harry Potter).  The fear you inspire so powerful just saying your name might actually conjure you into existence.

So, I won't say it.  As, in the book, I don't want that dark spirit entering the room.  I don't want it finding me again...and just maybe if I don't face it, it won't see me.

But, I don't really believe that.

I've been trying to give up sulking, focusing less on breast cancer and more on life. There's not much to complain about in the big scheme of things, but lately, I'm haunted.

My friend, Debbie, wrote a guest post for me last September, Playing the Cancer Card and said her friend's younger sister had breast cancer.  Turns out, she wasn't young enough not to die from it.  She was just 48.  The exact age I will be in 18 days. She leaves behind her husband and 13 year old twin girls.

When I was diagnosed nearly three years ago, my husband turned to a co-worker with breast cancer for advice.  He is at her memorial service today.

I can't say I'm angry, as I have so often been.  These days I'm sad and overwhelmed by our new losses.  Which keep piling up, in what seems to me, epidemic numbers.

More women who do everything they're supposed to do.  Have surgery, endure treatment after treatment, make their way through each day with their wigs and their scarves, and their implants, and their Tamoxifen, carrying a small shred of hope deep down that something, somehow will make the difference.  That they will be the ones to beat the odds...but they don't and if they can't, how can I expect anything else?

Walls seem to be closing in.  Cancer all around.

The same small flicker of hope lives in me.  It's the one I call on late at night to ward off the impending visitor, to push away the question...Has it come?  A cold sweat breaks because I know next time, as with those ladies before me, there is no escape.

I've been diagnosed once already... I can't turn back the clock to a time before cancer cells invaded my body, to a time when the news might be good...not again.

Once diagnosed, in that one instant, we're changed forever.  Even with no evidence of disease (NED), recurrence lies waiting, taunting me, and nothing I do will scare it away.

I can only hope for the best and know there will be moments of failure on my part, weakness in the face of something sugary, or lured by the call of a comfy couch rather than a treadmill, but it is still my life and this is its path.

I can follow it ready to embrace all that's good or waste these days worrying about something yet to come.

I can choose to learn from these women.

These mothers, wives, sisters, and daughters who wanted to live just the same, just as much and be happy I'm still here to do it.



Thursday, April 5, 2012

Travels with Dad

Day one of my journey with Dad.  I've been pondering some serious thoughts about this trip, but before sharing that, here's an honest account of our first day together.  This may provide some insight into future posts.

-------------------------------------------------------------

The day seemed ominous early.  My oldest son threw up all over himself and the back seat just as we arrived at the departure terminal to be dropped off.  I felt badly leaving my husband and sons then, afraid things were getting off on the wrong foot, but tried to remain positive as we said goodbye and headed inside the airport.

Right from the start, I sensed trouble.  While waiting on the security line my father informs me he doesn't have to remove his shoes like EVERYONE else since he's over 75.

"Really, Dad, and you know this for a fact?  Just do what they tell you to do!"

Oh, wait, you didn't hear me because now you're informing the TSA agent he should accept your veterans card as proof of identification, but since he won't, you proceed to take out the fattest wallet in all of North America and dig for your driver's license.  No problem.  No one else is waiting.

As you can imagine, the "discussion" with the next agent about his shoes didn't take long.  No one was buying his theory on senior citizens...His shoes came off.

At this point, it's my turn to go through the scanner.  I've flown since getting implants, but this was the first full body scan I'd seen.  The one Nancy's Point mentions where you need to raise your arms.  Thoughts of Nancy and Ann Marie and their TSA troubles come with me as I brave the scanner and only briefly panic that I would be called to the side for something suspicious that was really just reconstruction.

I couldn't allow more than a brief moment of worry, though.  I had to find my father.  He was still behind me somewhere unloading his pockets.  Thankfully, his pocketknife was not among the collection of coins and keys in his tray.

After that, we were done.  Amazingly, we'd made it through security without further mishaps.  The thing about removing his suspenders didn't happen until the return trip.

Moving on, our gate, of course, was the one time forgot.  The furthest away from where we stood.  Thankfully, Dad's carry on luggage which he insisted on taking despite not having wheels isn't too heavy and I can place it on my wheelie one when he starts slowing down, which is pretty soon.  It's been a long day so far.  Only another 3,000 miles and a drive to the hotel left to go.

Finally, waiting at the gate.  What could go wrong here?  I start checking my phone for email and tweets and only then do I realize my father is loudly commenting on everyone's use of phones and laptops.  Why does he care?  I'm right next him to doing the same, which is what I'm telling him when a lady sitting two seats away starts yelling at him that she has to make phone calls, needs to check in with someone...

Umm, okay.  I turn to her and try to explain he didn't mean her specifically.  I can't believe I'm stopping a fight between my dad and some stranger in the airport about cell phone use.  Here's where I dig deep and remind myself this is supposed to be fun!  A great opportunity to travel with my dad.

Right.  Moving on.  Time to board.

We find our seats on the plane, thankfully, away from the angry, cell phone woman.  Dad is finally belted into his window seat.  I, in the middle and a very nice, blissfully unaware lady on the aisle.

A bad feeling settles in when we're still parked at the gate twenty minutes past departure time.  Please, no problems, please.  But, as we know, just because we say please, doesn't mean we get what we want.

Turns out, the co-pilot never showed up for work.

Yes, it's true.  He didn't show and apparently this was a surprise to everyone involved since a replacement wasn't called until the last possible moment.  A commercial airplane can't fly without a co-pilot, but not to worry, he was on his way and expected to arrive in...two hours.

Everybody off the plane.

I got Dad out of his seat and walked ahead of him. Past the pilot, standing in the doorway getting his head handed to him by an angry passenger about to miss his connection to Hawaii, when I turned to say something to Dad, who was suddenly no longer next to me.

Oh no!

I looked back to see my father standing with the pilot. He's laughing.  The pilot is not.  Oh no, again!  Get off the plane, Dad!

When he does, he said he was telling the pilot he'd stand in for the co-pilot.  That's nice. Just what the pilot wants to hear and before anyone asks... No, my father does not know how to fly planes or is the least bit qualified to sit up front with the pilot.

Two hours and one yogurt smoothie later, we're back on the plane.  We make up an hour in the air and only arrive one hour late.  After that, a $50 rush hour cab ride to our hotel, which...well, you can guess how that went over.  Not a good start, but then!  We walk to our rooms, and like our gate at the airport are as far from the elevator as one could possibly get.  It was really far, but, it's okay, I have a wheelie suitcase which carries his non-wheelie...

We're not changing rooms.

We've arrived.



Monday, April 2, 2012

Unexpected Reminders

It's impossible to forget - no matter how I try to stash it behind me.  Staying in the past is just not cancer's thing.  Paranoia and upcoming appointments push it from the shadows. I accept that.  It comes with the territory.  I get it, but what I'm discovering a lot lately is unexpected reminders.

Reminders I don't see coming.  Those that hit like a stomach punch bringing up memories I'd rather not recall and thoughts, I'd rather escape.

I'm learning television and movies love nothing more than a sad storyline and what's more tragic than a mother with cancer?  Like last night's episode of Mad Men.  If you're a fan and haven't seen it yet, beware, spoiler alert.

We see Betty, Don's ex-wife and mother of his three young children looking a bit heavy.  Still gorgeous, just carrying a few extra pounds.  This is attributed to real life pregnancy, but since she's not with child in the plot, the writers choose to put her through a cancer scare.

I didn't see that coming.

She gets sent for a biopsy where she runs into an old friend with cancer, we assume. The word is never said, but she's there for radiation treatment.  They speak of what it's like for this woman, this mother.  How she feels she's sinking into the ocean, alone, then suddenly remembers something her family needs, some housework, everyday stuff, but the underlying, accepted, message of the conversation is she'll die.

Don's new wife starts talking about taking in his kids, but he cuts her off.  Later, he admits he can't imagine his children without their mother.

Lines of dialogue that hit extremely close to home.

My husband and I watch together in the quiet of our bedroom.  The air thick with words unspoken.  No need to say anything.  Our thoughts are coming to life on the screen.

Then Betty receives her call...benign.  Her new husband said he felt he'd been given a gift after imagining the worst.  All the what might have beens and is relieved everything is fine.

Life as they know it will go on.

It sure makes for compelling television, but had I known, I might have chosen not to watch.  Like if I'd known the outcome that day nearly three years ago -- maybe I wouldn't have answered my phone, believing in a better ending.  

We didn't get a call like Betty's.  Ours, went another way, produced a different script. We get to live with the fear of children growing up without their mother, a husband losing his wife.

There was no choice for me that day.  I picked up the phone and heard the words, "You have...".

From that point words didn't matter.  Everything had changed.

I'm not sure there's a way to avoid this literally phenomenon of tragic illness.  It's prevalent because it's relatable, emotional.  It doesn't matter whether it's someone else's story, in some fictional life.  Even so, it touches me.  Looking away or turning it off doesn't change my reality.  My story remains the same and sometimes, I don't want to see it played out on television or reminded of it when I least expect it.


How do you feel about TV shows and movies showing women, mothers especially, with cancer?  Can you watch?

Wednesday, March 21, 2012

The Bright Side

And now for something completely different... a happy post.

Enough of sad, dreary ones.  I'm moving past the gloom and dark days of March. Perhaps, I can thank the warmth of spring.  Perhaps it's because my family has been enjoying some togetherness with the boys on break or perhaps it's simply my blank calendar.  Zero appointments cluttering my days, nothing looming large for yet another couple of months.

No doubt that's a big contributor to my lighter mood, despite disturbing, cold sweat rousing thoughts at 2am, but I guess we all have those. No matter who we are.  If I can push past and find morning, things seem brighter.

Later this week, my dad and I are heading to California to attend my cousin, Matthew's wedding.   Matthew wrote a poignant, guest post for me several months ago, "A Son Reflects."  He wrote about loss, about life without his mother, of things he'd never experience...His mom enjoying his wedding, smiling proudly at  the man he's grown to be, a mother/son dance others take for granted.

My mother and aunt had six children between them.  Matthew is the last to marry.

It's heart wrenching, not to mention frustrating, to think they're missing yet another milestone thanks to breast cancer, but we can't change that fact.  We can only move on imagining their wishes for us and I'm pretty sure celebrate as hard as we can, would top their list.

But first, I need to get to Los Angeles...with my dad.

Here's where optimism pays off.  I'm sure we'll have a wonderful trip together.  I'm actually looking forward to it.



No, really.

I'm excited to fly 3,000 miles with my 81-year old, tell it like it is no matter what, no holds barred, father.  For I've seen enough of life's losses to know such a chance may never come again.

Now, I realize there are some in my inner circle that doubt me, but I really am looking at the bright side.  I'm fortunate Dad's still around, lucky he can travel, grateful for this time together.

And I will carry that running mantra in my head our entire journey.  The power of that belief will see me through what may be some difficult moments.

-  I will not cringe or slip away if and when my dad attempts to carry his pocket knife     through security and gets angry at the TSA agent for confiscating it.

-  I won't be annoyed as he leaves the safety of his window seat to stumble over the middle and aisle passengers on his way to the bathroom 17 times.

-  I will smile politely at those seated nearby, acknowledging I do indeed hear the movie soundtrack blasting from his headphones, but please understand he won't hear me say turn it down.

-  I will truly believe it's fine if every person on the plane overhears his annoyance with the flight attendant over the lack of free food because surely it's her fault and can't she sneak over some snacks.

-  I will think he's charming as he loudly swears cross-country flights used to only take 3 hours.

I will grin and bear it all just to share my cousin's day.

Just so we can dance and talk of our mothers, those sisters that raised us.  How proud they would be of their children, all settled now, making their way through life as best they can, guided by the hands of those women.

Maybe we'll see some sign of their presence in each other and know they're watching.

How can we not, on this day?  They're the reason for us all.

It will be a day of celebration, a day of remembering, and a day to enjoy our blessings.

I just hope all that happiness and good feeling is enough to carry me and my dad through the return flight.  I cannot be held responsible if he gets lost in the airport or whisked away by security.

(Just kidding, Dad.)


Sunday, March 11, 2012

The Saddest Day Ever

     I'm fortunate my brother, Mark, has finally agreed to let me post something he's written and today, on the twelfth anniversary of our mother's death from breast cancer, he shares his memories of what we call, The Saddest Day Ever.
     Thanks, Mark.  I know writing this and letting me share wasn't easy, but I believe any opportunity to unveil the ugliness of breast cancer, its destructiveness and the havoc it wreaks on a family, is one we must take.
     As I've written before, breast cancer is not pink.  It is not a pretty, smiling face and not eased by bright pink well meaning messages.  It is a nightmare endured by those personally dealing with it as well as the loved ones left picking up the pieces.
     Serious research is needed to understand, prevent or stop metastatic breast cancer, so hopefully future families will never need to know such sad days.

___________________________________________________________________ 

      I had been planning a business trip to Los Angeles for weeks, but I wasn’t sure when I could go.  My mother had been dying for the last month and a half and I didn’t want to be across the country when the end came.  After postponing the trip for a month, and under scrutiny from my boss, I scheduled all the meetings, reserved the plane tickets, hotel rooms, and rental car.  I put  my material together to go.
      We were told in January that there was nothing else that could be done for my mother, that the breast cancer she had been fighting for years had won.  She was home now, lying in her bedroom in a hospital bed.  My father was taking care of her night and day, and my sister spent a lot of time at the house as well.
      It was a Saturday in March of 2000 the last time I would see my mother.  My boys, my wife, and I drove across the river to visit her.  It was another one of those damp, cold, depressing March days, a day we would later refer to as “the saddest day ever.”
       I went upstairs to her bedroom to see her.  I hadn’t been there since the previous weekend and I knew that her condition had worsened.  I didn’t know what to expect.  She was shrunken and pale, dressed in brand new blue pajamas. A dozen oversized white medicine bottles sat on the night table with the kerchief she had always worn to cover her hair loss.  My mother’s baldness was finally exposed.
      I closed the door, told her I was there and that I wanted to talk but that I would be crying.  I lied down next to her on my father’s bed, and thanked her for all she did for me during my life.  She put out her hand for me to take. In contrast to her appearance, her hand was warm and full.  I said I would miss her and I would take care of my father and my sister who was still unmarried.  I was sobbing so loudly that my wife came into the bedroom, worried that my mother would be afraid.  I told her I would be going to California the next day, but that I would be back on Friday and I’d come see her next weekend.
      We left the house in the evening just before dusk, made the drive over the Bear Mountain Bridge and home in a hard, heavy downpour .  God was crying along with us.  Later that night, around midnight, my father called and said that’s it, she’s gone, wait for morning to come over.
My wife and I had a cup of tea in the living room while I cancelled the trip to California.


One of the few photos I have of my brothers & I with our mom.
This one is my first birthday.



Thursday, March 8, 2012

March Days

What's up with March this year?  All sunny, spring like, daring me to leave coat behind and linger in the sun awhile.

I don't like it.

Here in my northeast corner of the country, March is typically cold, dreary skies with drippy, dirty snow everywhere.  Roaring in like a lion proves true.  March doesn't saunter in with a bright smile.  It's foul weather for foul moods.

March is the month my mother died from breast cancer and ever since, March reminds me of death, not the birth of spring.  No matter how hard it tries.




Though some years, it takes a few days.  I'll go about my business without a thought of that moment twelve years ago, but inevitably I'll wake one early March morning with a start, swearing I'd forgotten something, enduring a nagging, clinging feeling that lasts all day.

What have I lost?

Then I remember, all of it.  And it all seems so familiar now, like scenes from a sad movie.  Memories of a family holding vigil by a bedside, quietly coming and going. Whispered voices, a sleeping face, a turban askew.  The chilly, dark weather providing the perfect backdrop for the grief within the house, inside all of us.

I can't write of happy things in March.  Even now, years later.

Sorry, March -- I know it's not your fault.  You're a victim here, caught in a tragedy, forever to be seen as the month of endings.  Wrong place, wrong time.

Now, I spend these days pretending this month is like any other, but reminders are everywhere forcing me to face my loss.

In my son's school for library duty I accidentally come across the Kindergarten in the hall. My son's teacher calls out.  He'll be happy to see me, she says.  Someone is missing Mommy.

Near the end of the line my little guy was walking, head down, mouth turned under bearing some unseen weight.  He hadn't yet spotted me, but when he did he made a beeline for my side.  Without words, I knelt down, scooped him close and hugged as if our lives depended on it, as if I needed it just as much.

I hugged hard remembering someone who's gone.

I hugged hard because I'm still here.

I hugged hard enough to carry us through the unknown years ahead and I hugged hard because I knew how he felt.

After a minute I pushed away asking if he would rejoin his class.  He said yes and went off to finish his day cheered up by an unexpected rush of mommy love.

I went off too, feeling a bit better, hoping the power of that hug in this month of March when I'm missing my own mother, will last a long, long time.


Tuesday, February 28, 2012

Off the Mat

The road stretched out as we drove, first east, then north, with nothing but some duffel bags too small to carry our troubles of the last couple of years.

Beyond my windshield possibilities come into view.  Beaches calling for explorers, clams to be eaten, fun to be had, but buzzing most in my mind was not the joy ahead, but the crap left behind.

Thanks, Breast Cancer.

But I wonder, if I can't see it or hear it or deal with it, if my responsibilities end and appointments no longer clutter my calendar, can I forget it?

Can I be someone who pushes aside the faces and words of women who died and ignore the glaring realization, the knowledge it can be me?

If it seems there's a smidgen of chance to wipe my slate clean, it's not for long.  I know there's no escape.  My past travels with me.  Cancer rides along daring me to shake it off, leave it in the dust somehow and for a while I manage to do that, but as the days pass and miles to home trickle down, reality seeps thickly, slowly back through my pores reminding me my burdens are exactly where I left them.

Once home I wonder why it's easier to focus on the bad, when the good matters as much or more.  It sometimes seems my feet root in a pile of unpleasant memories and whither rather than seek fresh ground to thrive.

Such a waste of time and I don't want to waste any more.

Maybe if I change my thinking, approach things differently.  Since I can't outrun my own history, perhaps I can use it to my advantage.

Renewed and encouraged by this rare positive attitude I venture off to my second ever Pilates class (because, you know, it's good for me) only to have my mood squashed.

Pilates is hard for one out of shape and stiff from surgeries.  Moves prove difficult, limbs refuse to stretch, muscles shake with each position and then...The Plank.  Arms out, flat on my mat, lying heavily, painfully on my implants with zero strength to lift up.  It shouldn't be this hard, but like so much for those of us diagnosed, it is.  Cancer's roadblocks, again popping up when least expected, even here.  It's overwhelming.  I put my forehead to the floor and nearly cry.


Staying close to the mat for a second, I mourn my lost flexibility. I'm angry I can't lie on my stomach, disappointed by my weakness and pissed at breast cancer.  I wonder if anyone else here carries these thoughts, this story.  It can't only be me, but at this moment it seems so.

Somehow I had to push up...I managed, not gracefully, not smoothly and definitely out of form, but I got up and finished what I had started determined to get better.

Right after struggling through Pilates, I catch a television commercial overrun with happy, smiling people, some bald, some wearing scarves, surrounded by flowing pink banners excited for a breast cancer walk.

Why are these women so happy?  Has a cure been found I don't know about?

This really bothers me.  Those faces seem so clueless...don't they get it?  Breast cancer is not something to smile about.  If only the other side were portrayed in these commercials for the cure.  People speaking eloquently, passionately of those lost to breast cancer, describing their own disease and proclaiming awareness and early detection are not enough. Actual angry, fed up citizens demanding their donations go directly to research so pink walks are never needed again.

That's a commercial I'd like to see.

Maybe I'd be happier if I didn't know better.  If I still believed in the power of hope as those in the commercial, but hope without research leaves us nowhere and nowhere, like being stuck on my mat, sucks.

We need to gather all our strength, our collective voices and push.  Maybe together, we'll get somewhere.  Maybe hope will spin into action.  I have to believe that.

I'm starting today with Breast Cancer Action's "Think Before You Pink" webinar and seriously considering attending the National Breast Cancer Coalition summit in Washington, DC this coming May to learn how I can help change the conversation.

It's a start.



Monday, February 13, 2012

Stepping Out

Rachel was an "all in" kind of person.

If I didn't know that before I learned it Saturday when I had the privilege of hearing her friends and family, many of whom had come from as far as Australia and England, speak about her friendship, her wit, her joy for life. Her unbreakable commitment and passion for anyone and anything she cared about.

Rachel Cheetham Moro
If Rachel liked something about you, she was your friend for life.  She didn't do anything halfway, or half-assed like her dedication to exposing breast cancer's ugly truth or the horrendous fact that little has changed since the inception of pink awareness...Where does that leave us? How do we make a difference now?  Can we accomplish anything if we're not all in, like Rachel?

Feeling like a woman on a mission, I was fortunate to speak with Kathi Kolb, The Accidental Amazon and Sarah Horton, Being Sarah about my idealized, all-consuming quest to end breast cancer and both ladies wisely pointed out, it's nearly impossible to always be all in.

Rachel was an amazing exception.  Activism is tough, draining work. It's exhausting diligently keeping one's nose to the grindstone only to hit wall after wall with little results. That doesn't mean it's not worth pursuing, but sometimes, for sanity's sake, one needs to step back, look around, assess the situation, refresh and regroup.

I think it's time I step out for a while.  To refresh, regroup and process the losses, not just those of last week, but all the losses over the years, the nearly 30 years since my mother was first diagnosed.  When breast cancer entered my vernacular and never left.

To learn what I can do, discover my role.  Thirty years is a long time for breast cancer to linger around the edges and often the forefront of my thoughts.

It's time to contribute in ways that matter, in this fight to cure, prevent, eradicate this scourge that takes so much.  Maybe that means approaching this blog differently.  Being a better resource for those recently diagnosed.  I'm not a scientist.  The laboratory is not my place.  So I don't know yet, but I do know breast cancer cannot continue to steamroll everyone in its path.

I want to be all in and I'm off to discover what that means for me.

To figure out where to go from here.

While stepping out to regroup, I leave you with this:


Somewhere in the sands of the Jersey shore or hiding in the food court of the Monmouth Mall is my little son's tooth.  His first baby tooth to fall, lost forever while I was at Rachel's memorial service.

Time stops for no one.

Like the gray Atlantic waves Saturday, life moves on.

What are we going to do with it?





Friday, February 10, 2012

Rachel's Words

I published my very first post on October 20, 2010.  My husband knew and no one else on the planet.

Less than two weeks later my first comment from Rachel Cheetham Moro arrived.  She was drawn to a contrived word, Clogger = Breast Cancer Blogger.

I saw Rachel's comments as a stamp of approval.  As encouragement to keep blogging. My words and experiences worth sharing.  That it was even important to do so.  She reminded me women the world over needed to hear from those that had been through it. We would help each other.  

The word, Clogger, would fall by the wayside, but my ties to Rachel never would until the reality of breast cancer severed our strings.

Here are just some of the many, insightful, passionate words I was lucky enough to receive from Rachel.


November 2, 2010
"What I have discovered in the clogging (LMAO about that term!!!) world is that cloggers read other cloggers, and what an amazingly supportive, wonderful world it is."


December 23, 2010
"You know I've been thinking a lot about this social media thing and I think we're barely scratching the surface.  I have thought of trying to put together a breast cancer blogger summit of sort.  Need to think a bit more about it and of course, the technology, but I say, why the hell not?"


March 10, 2011
"Your Sherpas are with you today and every day."


Publishing new blog posts will never be the same, for I know I will never again find her funny, snarky, intelligent, caring comments in my mailbox.

Thank you, Rachel, for welcoming me into this "amazingly supportive, wonderful world." 

Thank you for opening my eyes to the inequalites in breast cancer fundraising and telling us all what life is and can be for someone with Stage IV breast cancer.

We will never forget there is more work to be done.

We'll take the reins from you now.

As you said and what you must know, "Your Sherpas are with you today and every day."





Tuesday, February 7, 2012

For My Blogging Sisters

I need more time, I think.  To do justice to what Susan Neiber and Rachel Cheetham Moro meant to me as a person with breast cancer, as a blogger, as a friend.

They need more time, they probably thought.  To inform others that breast cancer is not over despite how pretty it looks dressed in pink.

People still get diagnosed.  People still die.  People still get left behind.

My thoughts today are with Rachel's Beloved, Anthony and her devoted companion, Newman.

My thoughts are with Susan's husband and the two young boys she so often described as her source of strength and her greatest joy.

If I could dim the lights on my blog, I would.  This is the only way I know how.