This is Our Reality

Alone, in a crowded room.

alone in a crowded room

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders.  I can’t seem to make conversation, or to pass the time socially as easily as others.  I watch.  I retreat as soon as I can.  I can’t quiet my head.  And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

occupied mind

“Those hormones?  Are they causing her headaches?  Or is it something more sinister?  How would I even know?  Do we need to use another MRI?  What if it is the hormones?  What choice do we have?  The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December.  They’ve already begun to schedule another D & C for July.  “You have to make sure…”  The uterus is a prime site for malignancy in Cowden’s Syndrome.  I got to keep mine until Meghan was 8.  Will she get to keep hers?  Will she have the chance to make the choice whether she wants to bear her own children?  And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment?  And at what cost to the rest of her body?  What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk.  That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12?  It seems so unjust.  This issue shouldn’t have to be addressed now, well not ever really, but especially not now.  And when she has the headaches I have to give her something.  What about the headache medicine?  What about that esophagus we are trying to heal?

 

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets?  Why should a slight indulgence cause such discomfort and vomiting?  Why does she have to be so careful all the time about everything?  No wonder she is so serious.  And what if it is the headache medicine?  What am I supposed to do to help her?  Tell her she has to deal with it?  I can’t imagine “toughing out” a blinding headache.  

 

The knee.  Oh the knee.  She tries not to complain about it, but I see when she struggles.  The AVM is finally stable, but the leg takes a lot of work to develop.  She works hard on it too.  But, the stamina isn’t there.  Hours in a pool yes, on land, no way.  Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain.  And pain causes fatigue.  And on the occasions she relents and allows the wheelchair into use, she struggles.  Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time.  She is proud.  She is frequently humbled.  She is conflicted.

 

And who wouldn’t be?  16 surgeries before the 13th birthday.  The need to be tough all the time, while you feel weak.  The desire to be stronger.  Having to fight, hard, for physical accomplishments.  Having to accept the ones that will never be.  Never giving up.  Pushing to be better.  To make the world better.  

 

She’s not perfect.  Never has been.  And oh, there are DAYS…  But she is good, in her heart.  She means well.  She has no spite or malice, and I can pray it remains that way.  I can pray that the children who don’t get it, one day come to understand her, just a little better.  That one day they can accept her,  for the good in her.

 

I scheduled 3 doctors appointments for the next three weeks.  Dermatology, orthopedics, and endocrinology.  The first is a screening.  Cowden’s Syndrome, melanoma risks.  Her father’s increased risk of melanoma on another unrelated genetic disorder.  Her grandmother’s melanoma this summer.  Every 6 months they told me.  Bring her every six months.  The others will work on long-term plans.  Spring break.  Every holiday, every vacation.  Every day off.  Doctors.  Not the mall, or a friend’s house.  Doctors.  For what?  And I’ve toned down the list quite a bit.

 

There are two bills of my desk.  One for her and one for me.  Both a battle.   Always a battle.  If it’s not the reality, or the appointments, it’s the bills.  And we are so fortunate to have insurance.  But, the hours.  Oh my goodness, the hours…”

 

I try to shake it off.  To stay focused on the good.  On the positive.  On the blessings, and they do abound.  But, so often it’s just me, and my head.  Working to get out of my own way.

I miss my Pop.  I miss my Grandma even though she’s still here.  I miss their goodness.  I miss my Dad.  I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me.  I smile politely and nod.  I stay quiet.  “It’s good.”  “We’re good.”  That’s about all they can handle anyway.  Even the ones who genuinely do care.  Why drag someone to a place where there is absolutely nothing they can do or say?

cheshire cat

This is our reality.  This is Cowden’s Syndrome.  This is every day.  As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head.  The reality remains that EVERYONE HAS SOMETHING…

been through something

I booked dinners for our Disney trip today.  I like to plan ahead.  Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!

 

Making the Most of It All…

Sunday night, coming home from a swim meet, Meghan outlined her goals.  Among them included, “no surgery for a whole year.”  To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

Your Recovery Green Road Sign Over Dramatic Clouds and Sky.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month.  Insanity.  Except to a young lady who is now growing into herself, and her abilities.

 

She wants to swim.  Hard and often.

O22lQ

She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time.  I know, because I am with her.  Or helping her stay organized.  Or transporting her at least.

This weekend we drove 200 miles.  Today at least another 60.  LOTS of time for car chat.  Lots of time to get to know each other well.

onthego

Sometimes she drives me crazy.  Sometimes I frustrate her so badly she wants to scream.  Sometimes she does homework, reads, or works on projects.  But, lots of other times we talk.  About anything and everything.  And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car.  I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

Captive Audience words on a ransom note in cut out letters in a message to forced or trapped customers or people

As a matter of fact after today’s appointment, she could easily be in the front seat.  All the time.  At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is.  Which I sometimes have to remind myself when I am busy expecting her to have it all together.  Sometimes she still needs me to help her along.

Today was the knee surgeon.  Six month follow-up.  He sees the shift in the patella.  He feels the scar tissue, and the clicking.  But, he said, she can wait.  She can wait until she’s ready before he cleans it out again.  With Cowden’s it’s a fine line.  How much pain can you deal with?  Because every surgery will lead to an overgrowth of scar tissue which carries its own issues.  Drag your feet.  Know when enough is enough.

Next we will have an MRI to check on the AVM.  As long as that’s stable, we should have a bit of time.  A bit of time to do some things besides recover.  A bit of time to be a bit more like a “normal” busy 12-year-old.  Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

This kid. My stength. My motivation. My hero.
This kid. My strength. My motivation. My hero.

Tomorrow she goes to another doctor.  And about this one I just pray.  A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind.  In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping.  After 2 years of holiday sadness, I am craving joy, and celebration.  I am craving the anticipation of the birth of the baby Jesus.  I am determined to remove myself from the holiday hustle and bustle.  I am determined to set my mind right.  Because none of us ever know.  Really.  And there is no promise of tomorrow.  Really.

But organization makes me happy.  And it’s about being happy.  And making the most of it all.  All the time.

organize

 

Three Year Old Memories

It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming ahead that morning was unlike any I had ever been through.

As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months.  Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome.  I had read and researched and didn’t like much of what I saw.  I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.

Cowden’s Syndrome was an explanation.  It wasn’t something we had just “caught.”  She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well.  But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.

We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid.  Emotionally scarring biopsy followed.  We met an oncologist for intake as well.  And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.

I sat up when Felix came into the bathroom.  I don’t remember much of our conversation.  Somehow I got myself up and dressed and into the car.

We drove to NYU in a good deal of silence.  I am sure I cried a lot.  I shook quite a bit too.  But it was time.  The decision had been made.

Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients.  I forwarded her my medical records before the appointment.  At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier.  We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.”  I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.

not if but when

“You will get cancer,” she told me.  “It’s not a matter of IF, but WHEN.”

I asked if it could wait till July.  She said absolutely not.  March 5th was as late as I could push her.

She ordered an MRI in February “just to be sure” everything was ok.  The MRI was clean.

Just a normal “prophylactic bilateral mastectomy.”  If there is such a thing as “normal…”

I met with the plastic surgeon, arranged for the implants.  I blatantly refused tissue expanders, much to her chagrin.

My mom, during the time of her surgery had once called her breasts “superfluous tissue.”  I tried to keep that in mind when I was making mind- numbing decisions.

We got checked in at the hospital before 7 AM.  There was a whirlwind of doctors and nurses traveling through.  Some had me signing consent, others were checking various things.  I wanted to run, and scream.  I felt like I was stuck in a bad horror film.  But, I sat.  And I signed papers.  And I waited.

And then it was time.

It was a long walk to the operating room after I kissed my husband.  I couldn’t much control the tears.  I was terrified.  The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing.  You’re doing the brave thing.  There is NO other choice for you.”

I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt…  sweet relief!

third-birthday-cake

Even now, as I think back three years later, I am certain that was my first, and most genuine emotion.  I felt relieved.  I felt empowered.  I felt victorious.  This was one battle Cowden’s was not going to win.  We played on my rules and my time… ok, well the doctor’s time… but still!  I knew of too many lives lost to breast cancer, and I would not be one of them.  One less worry.  More time to be the Mom and help my girl through this genetic mess.

every-test-in-our-life-makes-us-bitter-or-better-every-problem-comes-to-break-us-or-make-us-the-choice-is-ours-whether-we-become-victim-or-victor

I left the hospital about 28 hours after I got there.  The drains were the worst of it all.  There was pain, no doubt, but it was all tempered by the peace in my soul.  Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.

Pathology was almost an afterthought for me.

That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”

pink ribbon

At first I was confused.  I thought maybe she was just advocating my decision.  Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy.  There were all sorts of other markers too.  Cellular changes to indicate things were starting to go very wrong.  Because the DCIS was so far from the chest wall, I would need no treatment at all.  An hour before I didn’t even imagine I had HAD cancer.  Now, I was being declared cancer free.

“If you had waited for July to get this done, you would have likely been in a fight for your life.”  I will probably never forget that sentence.

piglet_gratitude_winnie_the_pooh

I stepped onto the street in NYC with my husband and my daughter.  We all took a moment to digest what had gone on.  We hugged.  Then I grabbed hold of Meghan.

“You my dear, saved your mother’s life.”

Confused, “How do you figure?”

“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery.  I would have found the cancer much later.  Possibly too late.  I am going to be Ok BECAUSE of you…”

As we let the gravity of that sink in, it was the ultimate lesson in perspective.

The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.

Every piece of our past is a bit of the puzzle we are forming with our lives.  Some of the pieces are confusing, and don’t seem to fit.  But, sometimes we just have to wait patiently and watch.

broken pieces into masterpieces

Three year old memories.

Gratitude.

Day One

Matthew West

from the album Day One (Single)

Buy on Amazon | iTunes

Play sample

Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back

Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that

I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’

It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one

Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there

See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out

It’s day one
And here comes the sun

Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun

Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over

Scars…

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

scar2

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

scar 3

And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

scar 5

It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

 

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.”  We met a lovely woman who was surprised we weren’t raising money for us specifically.  We explained that we were grateful.  I feel well enough to work.  We have good medical coverage. There are so many not as fortunate.
scar 1
When it gets to be too much, I know to fix my eyes on things far beyond the mirror.  I have a greater purpose right in my own house.  And WE have a greater purpose.

We are BEATINGCOWDENS… together!

I wish cancer got cancer and died!

Today was rotten.

And it is Saturday.  I hate it when Saturday is rotten.

And I am tired.  And worried.  And my heart is heavy.

I guess that makes me in the same boat as most people.

And then there was a text this afternoon.

And just like that breast cancer claimed another life.  Just like that two women had no mother, and a husband lost his wife.

To the best of my knowledge she didn’t have Cowden’s or BRCA, or any other genetic cause for her cancer.  But then again, neither do most people.  And I was reminded again that maybe having Cowden’s makes me a little luckier.

I knew to get the beast before it got me.

She was not old enough to die.  But, then again, who is?

cancer_sucks-112077

And even when I held her hands in June and looked her square in the eye, and told her to fight with all her might – I knew.  She knew too.  Deep in that place where the thoughts are that you just don’t want to think, or feel, or believe.  We both knew that this is how it would end.

Cancer is stupid, and mean and nasty, and ugly and awful.  It’s a big bully and I really hate bullies.

I’m pretty much over this “Breast Cancer Awareness” thing.

As a matter of fact I am over the whole cancer thing altogether.

Ready for a cure.

Broken hearts.  Lives crushed.  Too many wakes and funerals.  Too many people gone too soon.

My heart hurts.  My head hurts.  And I think some part of me feels guilty.

Guilty for having a “head start.”  Guilty for having the support to push me through the double mastectomy.

This is the first person in my life to die of breast cancer since my diagnosis.  I am sadly sure she won’t be the last.

And, like so many things that have changed since March 5, 2012 – this one hurts differently.  Worse.

Cancer really just sucks.

cancer sucks

Race for the Cure!

I woke this morning to the sound of my dogs running back and forth through the house.  They weren’t barking – just running.

The sound also woke Felix who is quicker in the mornings than I am.

“Weren’t you supposed to be up at 6?”

Gulp.  Sure was.  And that was my Mom at the door waiting to take Meghan and I to the Race for the Cure in Central Park.

As I quickly washed, my face, and changed my clothes.  I let Felix see to Meghan.  I was annoyed at myself for oversleeping.  I purposely set the alarm on my cell phone so I would have to undo the lock screen to shut it down.  Apparently I was THAT tired.

We have been going to this race for at least 15 years.  Some of the participants have come and gone, but Mom and I have been there together… well except for 2003 when Meghan was just about a month old.

RFTC 2013c

And, for the better part of the last 10 years Meghan has joined us.  She was always so eager to support Grandma, that once I had the title of “Survivor” too she was determined to support us both.

Except last year.  When she was sidelined.  Sick with a fever early in the school year.  As devastated as she was I convinced her this was the year that mattered.  This was the year I could say I was a FULL year without my breast cancer.

RFTC2013a

Dates matter.

When Mom was first diagnosed in 1997, I wasn’t sure she would be ok.  Although she battled through 2 mastectomies, and chemo, and 5 years of tamoxifen like a champ, it became important to celebrate the victories.  The milestones.  So Meghan has grown up watching me acknowledge Grandma’s “Pink Ribbon Anniversaries” three times a year. (First surgery, second surgery, end of chemo)  And while the acknowledgements are small they are an understanding between us that we remember.  We are grateful.

The race every September in Central Park was a natural outgrowth of that.  A desire to celebrate.  To be thankful.  To remember.

RFTC 2013B

Of course for me things feel a bit different sometimes.  Last night I told my husband I sometimes feel guilty wearing the pink “Survivor” T shirt.  He was perplexed.  I explained that I didn’t feel like I “survived” chemo, or radiation, or any of the things most women go through.  To which his sassy reply was, “You were tired of the old boobs? That’s why you had them cut off?”

See I wonder sometimes if would have been different if there was no cancer.  If the mastectomy had indeed been prophylactic would that change the fact that a genetic predisposition – AKA Cowden’s Syndrome (in ADDITION to having a first degree relative with breast cancer,) had pretty much predetermined the fate of my breasts?

I have “met” in this virtual world, and now in my real life, quite a few “previvors” who have taken an empowered approach to their genetic predisposition and had a mastectomy, and/or a hysterectomy.

I would say they are as much “survivors” as anyone.  Bravery, coupled with a desire to be there for your children and your family motivates these women to endure major surgery(ies.)

http://www.thefreedictionary.com/survivor  The Free Dictionary.com has the following definition of Survivor…

sur·vive  (sr-vv)

v. sur·vived, sur·viv·ing, sur·vives
v.intr.

1. To remain alive or in existence.
2. To carry on despite hardships or trauma; persevere: families that were surviving in tents after the flood.
3. To remain functional or usable: I dropped the radio, but it survived.
v.tr.

1. To live longer than; outlive: She survived her husband by five years.
2. To live, persist, or remain usable through: plants that can survive frosts; a clock that survived a fall.
3. To cope with (a trauma or setback); persevere after: survived child abuse.
So I put on my pink shirt, and we got out the door (t+Chai in hand) in just a few minutes.  We blew into Manhattan and found a spot on the street close to the park.
We walked through the “Expo” which was a little thinner than most years, took a few pictures, and then it was time to walk.
Although the weather was beautiful, Mom’s pinched nerve is not cooperating the way she would like, so she took a shorter route as Meghan and I headed to the starting line.
RFTC 2013g
For 3,2 miles, I pushed Meghan in her push chair.  She made friends along the way.  She met a police dog, and lots of nice ladies to whom she gave her “Cowden’s Card.”  And every time she gave it out I thought – Cowden’s Syndrome is more rare than BRCA, but just as lethal, even more so in some ways.  People should know.  I reminded her how glad I was – to have her
there.
RFTC 2013f
RFTC 2013e
Just before the 3 mile mark we were joined by Grandma, and the three of us crossed the finish line together.
And as we walked under the pink balloon arch and turned towards the car I forced from my head the reality that we were now 2/3 pink.  I looked at my little girl in her white shirt, about to start 5th grade tomorrow.  I prayed for lots and lots of years for her to not have to worry about any of this.  I thought about how much better she looks in white than pink.  I searched my heart praying for a cure.
RFTC 2013h
And in the depths of my soul I don’t go a day without considering her 85% lifetime breast cancer risk.
Dates are important.
Now March 5, 2012 gets added to our celebration list.
Life is uncertain.  Celebrate the little victories together.  They are what matters most.

Ramblings and Random Thoughts

thankful for the difficult

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes.  Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

let go of the toxic

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas.  I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

This one’s for you Mom – HAPPY SWEET 16!

celebrateThis one’s for you Mom.

My Mom doesn’t have Cowden’s Syndrome.  The tests confirmed that.

What she does have is strength, stamina, and courage unrivaled by most.  She is a tough cookie.  An inspiration with her determination.  Not once throughout her life have I ever known her to give up.

Mom is a survivor.

Long before she was a breast cancer survivor, she was a survivor of life.

She survived a divorce, two jobs, and raising 2 kids alone – with the help of my grandparents.

She survived sleepless nights, and worry.

She battled for her kids- fought doctors, insurance companies and the like. And, she even battled  with us on occasion… If you can imagine that!

Long before she was a breast cancer survivor, she was my Mom.  And she taught some valuable lessons I still use today.

(My sister posted the other day that “Some days I open my mouth and my mother comes out!”)

These are her words coming out of me these days….

I-plan-God-laughs

god-is-good-logo

But God is good - all the time!
But God is good – all the time!

thankfulAnd….

I really think I am OK with this concept, but we all need a reminder sometimes!
I really think I am OK with this concept, but we all need a reminder sometimes!

When my Mom was diagnosed with breast cancer I was 23.  I was scared.  She might have been scared, but she attacked it with her “matter of fact” attitude that I think is what has gotten her so far.

She went for her first mastectomy on February 24th of 1997.  She was just 48.  The second mastectomy followed in April when cancer was found in the other breast.  6 months of chemo followed.  5 years of Tamoxifen followed that.

And she just kept right on going.  Even though some days she felt like this…

several days at once

Truth be told, maybe we all did.  But I did what I could to help out with her, around the house, and with my little sister.  I was really just amazed by her drive.  But I think I still am.

Last year when I was scheduled for my mastectomy, the surgeon asked me who had been with my mother during hers.  I told her my dad and I had.  She said, “Well call mom and tell her its time to return the favor.”

I called her on the ride home and although I can’t imagine it was an easy call to take.  She never flinched.  She took the week off that I had the surgery (a HUGE compliment from someone who sparsely misses a day of work.)  My recovery went so smoothly.  And I had some of the best conversations of my life with Mom that week.

When my pathology returned DCIS, she was the first one I called.  Neither of us were surprised.  And, yet her reassuring words, that she knew I had “done the right thing,” gave me such peace.

Before Mom was diagnosed she dreaded turning 50.  After all she had been through she embraced 50 with grace and charm, and a few years ago gave 60 a great big hug.

Mom's 64th birthday - and 4 generations of tough ladies!
Mom’s 64th birthday – and 4 generations of tough ladies!

This is a picture from her 64th birthday a few weeks ago.

My mom may not be like everyone else’s.  She can be a tough lady.  She hasn’t had an easy life.  But she has a heart of gold.  And I love her for who she is.

As I grow I realize everyone does the best they can with what they have where they are.

I am thankful – so thankful – for these last 16 years with my Mom.  I am grateful she got to know my daughter.  I look forward to having her around for a long time.

A mother bonds with all her children, and she is close with my sisters – differently than how we are close.  That’s what makes each relationship special.

We share some things that can’t be put into words…

Just past the finish line.  Aren't we "Pretty in Pink?"   :-)
Just past the finish line. Aren’t we “Pretty in Pink?” 🙂

She will always be my friend.  I hope she knows just how much she is loved.

Happy Start to your 16th year - CANCER FREE!
Happy Start to your 16th year – CANCER FREE!

Don’t talk about my boobs unless you’ve walked in my shoes

“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”

http://well.blogs.nytimes.com/2013/01/21/facing-cancer-a-stark-choice/

The quote above is the last paragraph from a New York Times article published January 21st.  I first read about it here in this blog

Preventative mastectomies under fire

And I must agree with “The Pink Underbelly” as my blood is boiling a bit.

I underwent a prophylactic bilateral mastectomy on March 5, 2012.  I had been diagnosed with Cowden’s Syndrome, alongside my 8 year old daughter, just months before.  I was presented, in January of 2012 with an article putting my lifetime breast cancer risk somewhere around 85%.  Cowden’s Syndrome, as you all know – but I doubt the author of this article knew, is a rare genetic disorder with a 1 in 200,000 occurrence.  It is a mutation on the PTEN (Tumor Suppressor) gene and causes benign and malignant tumors all over the body – with the hot spots being the breasts, uterus, and thyroid.

I made an informed decision to undergo that mastectomy.  It was not a decision reached lightly.  My mom is a BILATERAL breast cancer survivor, and even though she does not carry my genetic mutation, I will always believe that her decision for a complete mastectomy is the reason she is with us today – the reason she ever got to meet her grandchildren.

That doesn’t even get me started on the fact that my “prophylactic” mastectomy revealed DCIS – stage 1, a centimeter of cancer in the left breast.  Yes, it was contained.  No, it hadn’t spread.  Yes, I was fortunate, and NO, it WAS NOT the breast that had seen 7 biopsies in the 12 years prior.  This one had never been touched. And, the MRI weeks earlier did not pick up the DCIS.  So, my informed decision.  My smart surgeon.  My gifted plastic surgeon. My husband’s support.  The support of my boss.  The sick days donated from a friend.  My raw nerve.  My desire to be there for my little girl for years and years to come.  The Grace of God.  All these things saved my life.

So, I get a little twisted when people infer, and imply that these are decisions made lightly.  That women are just randomly having their breasts cut off.  This was not a trip to Hawaii.  This was not a walk in the park.  This was major league, life altering, body changing surgery.  There is not a woman I know, who makes this decision without intense scrutiny and research.  And, thanks to this blog, and my online support group. I have “met” many of them.

This article says

“We are confronting almost an epidemic of prophylactic mastectomy,” said Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston. “I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”

EPIDEMIC- affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time <typhoid was epidemic>

Really?

and WHY?

Why not ask us?

Why not ask those of us that have lost mothers and grandmothers and sisters to genetic mutations?

Why not ask those of us who have had countless mamorgrams, MRIs and biopsies, with “suspicious” pathology?

Why not ask us, who have done the research, or read the research on diseases you haven’t even heard of?

Why not ask those of us who, facing our imminent cancer risks, have made a choice to LIVE?

So the article says:

“You’re not going to find other organs that people cut out of their bodies because they’re worried about disease,” said the medical historian Dr. Barron H. Lerner, author of “The Breast Cancer Wars” (2001). “Because breast cancer is a disease that is so emotionally charged and gets so much attention, I think at times women feel almost obligated to be as proactive as possible — that’s the culture of breast cancer.”

Damned right Barron.  Proactive.  We have kids to raise. Spouses to celebrate life with.  Memories to make.  Tears to dry.  Hands to hold.  Lives to live.

Emotionally charged?  You bet.

Come by.

We’ll have some coffee.

Then I will tell you about my prophylactic hysterectomy.  Reccomended by a top surgeon at NYU.  Ten weeks after my mastectomy.  Not an easy choice.  Certainly not one made on emotion.

Logic.  Try logic.  And gratitude that the tools exist, and the surgeons exist that are willing to save our lives.

Don’t talk about my boobs until you have walked in my shoes!

“I hope you never lose your sense of wonder…”

Meghan left tonight for the Father Daughter Dance with her Dad.  I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life.  She needs that time – to be happy and carefree.  She needs time to just be a kid.

Father Daughter Dance November 2009
Father Daughter Dance November 2009

I looked back on some old photos from dances in years past.  I know it sounds cliche, but I can not believe where the time has gone.  It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

Father Daughter Dance November 2010
Father Daughter Dance November 2010

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest.  I think I am not just sad, but angry.

And that’s ok.  I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome.   I am angry about the cloud it carries, even on the sunny days.  We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played.  Forever.

I have said before, and I will say again – if it was just me…

Father Daughter Dance November 201
Father Daughter Dance November 2011

But it’s not.  It’s her too.  That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow.  And, Meghan being my one and only, I am sure the pangs sting extra hard.  But, there is more than that.  We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well.  At her age, the biggest threat is thyroid cancer, and we are battling the beast head on.  We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back.  All  thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones.  She wonders.  Sometimes to herself.  Sometimes aloud.  When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first.  She asks that if she does have children… do they have to have a PTEN mutation?  Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old.  Too many questions for the string bean with the developing body.  Too many worries for my baby girl.

I am angry.  But thankfully she is not.  She takes each day as it comes.  She accepts the eventuality that one day the biopsy will not be negative.

Father Daughter Dance January 2013
Father Daughter Dance January 2013

I sheltered her for a long time, but they made me lay it on the line this year.  So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month.  I told her there was no guarantee she would get cancer.  So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer.  The number is small.

So we talked about the benefit we have that others don’t.  We talked about how constant screening means we will beat whatever beast tried to get at us.  We will be vigilant.

dance in the rain

We will win.

I get angry sometimes.  She just finds other ways to make me smile.  She keeps my heart soft.  She is my rock.  Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!