Mortality

Mortality_AF

The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives.  Some are frighteningly young, and others are blissfully old.  But, eventually, that awareness either creeps in or hits us like a speeding train.  (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

mortality1

For me, my solace, my comfort, and my focus, come from my faith.  My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young.  (young for her, and for me too!) She got it.  She found clarity, but it was a few tough months.  And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer.  But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality.  I was 10 years younger than Mom was at the time of her diagnosis.  I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior.  When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

10.30-Refuse-Fear

And there was reality.  Unable to ignore.  Cancer had lived within me.  Could it live again?  Would it?  When?  Why was I going to be OK when so many others were not?  Was I going to really be OK?  What if they missed it, something bigger?

I was fortunate.  Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer.  I needed no treatment, no medication.  But, my status had changed.  In the eyes of the doctors, I was now an even greater risk.  Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed.  The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk.  A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages.  An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age.  The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet.  We live across the country and across the globe.  We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer.  While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits.  There is that “Sword of Damocles” hanging above our heads.  There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry.  We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children.  A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality.  We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore.  We have gently answered questions about family, and future, that have no real answers to date.  We ache for them.  We wish to take it all away.  We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

lori-1

Mortality will bind you, and if you’re not careful it can blind you.  That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died.  Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps.  The award was never granted, and I wanted to pursue it on his behalf.  So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006.  I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine"
My Dad, the “Irish Marine”

 

 

I sent 20 letters out.  EVERY SINGLE MARINE responded to me.  EVERY ONE.  Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences.  Many shared some funny anecdotes.  And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps.  I could not have fathomed the depth of that bond.  One after another, they all left me with the same heartfelt sentiment.  “You are the daughter of our brother.  We will help you always in whatever you need.”

marine

Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned.  My Dad battled his own demons for many years before our relationship began to form.  But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries.  In the end, we lost the battle on a technicality.  Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.”  The letter was cold.  The case was closed.

We lost the Purple Heart but gained so much more.
We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed.  But I was so grateful for the Marines who wrote letters of support.  I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result.  I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me.  He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself.  I met a group of Vietnam Era Marines, several of whom had served with my father.  I watched them together, in awe an amazement.  I was welcomed into their group with instant acceptance.  And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told.  Surely a contrast to the realities they had faced as young men years ago.  But, the bond between them was unbreakable.  There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways.  They lived it daily.  They buried their brothers.  They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life.  As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago.  And they have a bond that can not be explained.  It is amazing.

marine loyalty

And among the most amazing to me was the woman I met.  She was not local either, but she, like I, had traveled for this celebration.  It was not her first time.  She had been around for almost 10 years.  About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with.  She had never met her father, but here were father figures galore ready to embrace her.  And they did.

A bit ago her father’s diary surfaced from his time in Vietnam.  She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily.  His diary ends with, “When will it be me?”

marine brother

Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

 

Identity Crisis

Sorry it’s been so long.  I am working through an identity crisis.

At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.

IdentityCrisis1

Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission.  So, countless hours and a police report later – that is ALMOST resolved.

Then, last week we went to file my taxes.  Apparently someone already did that.  In JANUARY!

More hours on the phone.  More papers.  Just what I was hoping for -really.

The whole thing seems almost too hard to believe, almost.  It’s not the first time either.

Identity-Theft

And, I am pretty vigilant.

I mean I do blog – obviously.  And I am not super careful about personal information here.  But, with financial stuff I am guarded.  I online bill pay only through my bank – which incidentally changed this week.  I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.

I don’t use my debit card for anything.  I keep one credit card and monitor its online activity every 48 hours.

By all accounts I am on my game.  But, apparently someone else is there too.

And I can’t figure out why, although I have a host of suspicions.  Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way.  We fill out lots of papers, but we do so because we have to in whatever situation requires it.

What I want to know really is, does someone truly WANT to be ME?

identity

I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?

I’m not trying to say my life is THAT bad.  I can count dozens of others whose predicaments are worse – but it doesn’t let up.  Not for a minute.  Ever.

It’s like that hamster in  the wheel thing.  Not for the faint of heart.

I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two.  Maybe during a “fake” Spring Break?

fakespring-break

That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.

Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.

Or maybe they would like to copy the police reports, and mail them out.

Or perhaps they’s like to file the medical bills.  And then call the get the errors corrected.  And then call again when the bills go to collections for no reason.

Maybe they would like to drive.  Through Manhattan.  The place I swore many years ago I would never drive.  All day.  And pay repeatedly to park the car.

manhattan driving

Because this week I could have used some back up.  A 1 o’clock appointment Monday for me – genetics.  A story for another day.  And then yesterday to Long Island for one of the few doctors who listens to us.  And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan.  Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat.  I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.

New York traffic during rush hour

And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck.  We made the appointment, in time to hear his ideas, and hop back in the car.

Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.

kinnikinnick-frozen-pizza-crusts

Then, granola in the car and off to the other practice.  Where I sit.  Now.  Waiting.

Prior to my nutritional cleansing I would say I was exhausted.  Now, I am just tired.  Tired, and confused.  But I have strength and stamina that I never possessed before.

WON'T be without my Ionix!
WON’T be without my Ionix!

Where exactly is my real life?

Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve?  I hope not.  Because I don’t like the numbers and they don’t like my questions.  Something will have to give.

Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?

Probably not.

Identity crisis2

The good thing about an identity crisis is it forces you to focus.  It forces you to stop and think about who you are, and what matters to you.  It forces you to decide to be deliberate in your thoughts, words and actions.

Initially I spent a good deal of time very angry about the identity thing.  It took quite some time to start shaking it off.  I am much better now- although not thrilled, I’ve come far.

See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”

do something

Wise words from my preteen.

I am angry.  But it won’t control who I am.

Identity theft sucks.  It’s mean and it’s wrong, and it’s a time-consuming pain.

Cowden’s Syndrome is flat out horrendous.  The follow up appointments are enough to drive you mad.  If you let them.

Life seems to be tossing boulders.

boulder

Maybe my identity is “boulder catcher,” so I can put them gently down.

Or “magician” so I can turn them into something more gentle and flowery.

I know who I am.

And I can not, and will not be defined by the obstacles in my path.

I will not remain a ‘Victim” of identity theft – or anything.

identity theft

I have “Cowden’s Syndrome” but I will not let it have me.

I am a mom.

I am a wife.

I am a sister.

I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over… 

I think!

identity crisis

 

 

Happy 2nd “Boob Day!”

My math mind is full of numbers.  It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few.

I am pretty good – although not perfect- with dates.

Today marks three months since my father died.  Flying free with the angels I am sure, yet I miss him.  A lot.  A blink of an eye, and an eternity.

Tomorrow is my nephew’s birthday.  He will be 6.

I remember his 4th birthday quite clearly, although I didn’t see him that day either.

On March 5th in 2012 I had the “prophylactic” bilateral mastectomy.  The one that ended up being stage 1 DCIS.  Quite the surprise party.

Happy Boob Day

And while I don’t even miss my old boobs, the new ones get scrutinized a lot more than the old ones.  Well meaning surgeons, they say things like “that kind of volume falling away is normal,”  or “we can even that out whenever you want.”  The thought of someone coming near me again with a scalpel right now makes me ill.  They will have their chance – years from now when these girls have to be replaced.  Maybe then I will have time to care more.

The last 2 years have been a whirlwind.  Well…maybe even before that.  The scope of the changes in our lives in recent years require more than I can muster in a 10 PM post.  But, being a numbers person…

2nd-birthday

Between Meghan and I we have had 5 surgeries in the last 2 years.  She has me beat 3 to 2.  But, I have lost more body parts.  I am down 2 breasts, a uterus and 2 ovaries.  She lost her thyroid, and a vascular cyst in her hand.

I am still crossing my fingers about my spleen.  That one’s up for MRI in April.  Hoping the 4 tumors there are behaving.

spleen

There comes a point where you have to laugh I guess.  People think “Oh no! A mastectomy!!”

I think – “Whatever it takes…”  But then again I had a pretty good teacher. (XO MOM)

I guess it’s all about perspective.

Meghan is really into identity, and figuring out where she belongs.  This week I bought her a “Previvor” T shirt.  She was thrilled to wear it to school today.  She takes the opportunity to explain genetic cancer risks whenever she can.  While I am happy she is confident I shudder at reality.

This is only stage 1 in her life as a previvor, staying one step ahead of genetic cancer risks looming large.  This is only the beginning.

We run from doctor to doctor.  We alternate surgeries.  We try to laugh in between as we deal with the rest of life.  Time is very difficult to balance.  The constant running to doctors and the anxiety of waiting for them to find “something” can literally make you insane.

time struggle

If you let them.

And I think that’s probably the key.  And the message.

I am overwhelmed this week.  Really fried.  Having a tough time keeping it all together.

Then I think…

I was ahead of thyroid cancer 20 years ago before I knew the depth of the risk.

I am 2 years beyond the threat of breast cancer.

My girl is weeks past the looming thyroid cancer that threatened her.

Two years.  New boobs.  No sagging on this 40 something gal.

Plus I am a HELL of a lot better off than I was two years ago at this time!

Ash Wednesday.  Never raised to “give up” for Lent.  Rather to use it as a time for focus.

Time to get out of this funk.  Forget November.  Time to be thankful is right now.

And today I am thankful for this little girl whose diagnosis saved my life.

My body may be 40, but my boobs are only 2!

Thankful to God and this little chick!

This kid is clearly a "FORCE" to be reckoned with!
This kid is clearly a “FORCE” to be reckoned with!

FORCE

Stuck in the middle

The  sermon in church this morning had many parts.  And I am never sure if what I take away is the intended meaning, but the idea of being “stuck in the middle” spoke to me.

I don’t mean it in the sense you might think.

See, we are not poor by any means.

We are not rich by any conventional standards either.  But, if you asked a person who lives in poverty – well to them we would likely be affluent.

It goes back to a concept that I think about a lot.

It’s really all about perspective.

perspective 1

There are many angles to every situation.  The angle, or the lens you choose to view it from determines the outcome, and to a large extent the path you follow.

Now, as my daughter and I live with Cowden’s Syndrome, and all its ruthless cancer causing, malformation growing, pain invoking perils, I do NOT mean that if I look at things the right way, or if I am positive enough that that is any guarantee of good health.

never give up

What I do mean is that HOW we handle, not only the illnesses we encounter, but the threat of those illnesses will largely determine who we are, our level of happiness, and the effects we have on the people we encounter every day.

We have all been blessed.  We all need blessings.

The middle can be a powerful place to be.

There are choices to be made every day.  These choices change our lives, and the lives of others.

September is Childhood Cancer Awareness Month.

childhood cancer awareness

The fact that childhood cancer even exists is appalling.  Meghan and I live with the imminent threat of cancer in this house every day.  I don’t go a single day without remembering my daughter’s namesake, my cousin Meghan taken from us by Leukemia at the age of 6 over 20 years ago.  But, we could bury our heads in the sand, or we could choose to try and do something to make people realize the number of lives touched by childhood cancer.  We can quietly hope it doesn’t happen to us, or we can help the people it HAS happened to.

Friends of mine chose the latter this week.  They scheduled a “Cookies for Cancer” fund raiser, and are donating over $1000 to childhood cancer research.  I couldn’t be more proud to call them friends.  They said we were their inspiration.  I find them pretty inspiring.

October is Breast Cancer Awareness month.

october breast cancer

I know very few people unaware of Breast Cancer.  As a matter of fact some have become sick of seeing the marketing connected with “Pink Ribbons” everywhere you turn.

Breast cancer is an ugly reality.  Mom is still fiesty, many years after her battle.  Breast cancer messed with the wrong woman there.  And me, well, my scars have healed, and I have found all the benefits to these replacements I have to the “superfluous tissue” that was trying to take my life.  I cringe when I think of my daughter, and the foreboding reality that this will be part of her journey.

Choices.

I choose to empower my daughter with stories of strong powerful women.  Those she knows and those she does not.  I choose to teach her about early detection, awareness, and victory.  Together we are empowered to TALK about our story.  The more people who hear about Cowden’s Syndrome, the more people will realize.  Lives can be saved.  Breasts, well maybe those can’t be saved – but let me tell you about the freedom of being almost 40- perky, and often braless.  I’ll bring you over to the bright side.

sunshine

Choices.

Meghan’s health has been a struggle since birth.  Our treatments for her have evolved over time.  Long before we could afford it we took a credit card and a trip to an integrative medicine doctor who is still a huge part of our lives today.  We learned that for her, pure, natural, gluten, dairy, and soy free food was as necessary as sneakers and clothing that fit.

leap of faith

Slowly we evolved into a house that ate better.  We took what we had learned about Meghan’s needs and transferred them to our own.

Except habits die hard, and in the months following our Cowden’s Syndrome diagnosis, and my mastectomy, and hysterectomy, my husband ate his way through the stress to the unhealthiest I had ever seen him.

Realizing we need him- healthy — all the time.  We connected with Isagenix, initially to help him lose weight.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Well he did.  Fifty pounds.  And its still gone.  And then I read and read about the company and things came together for me.  I realized everything I had learned that Meghan needed was here, all in this organic superfood.  So we bought her some too.  And then there was stamina and endurance to complete workouts in the pool.  So my husband told me it was my turn.  Nutrition, simple, quality.

Choices.

The first 10 months on Isagenix we told no one.  Then we felt guilty NOT telling everyone, about the health we were experiencing,  The first year we paid for the products, and sacrificed where we could.  Now, Isagnix pays us because we share what we have learned and experienced.

This week Meghan’s pain was bad.  So much so that she was finding it difficult to walk on Friday.  We are trying desperately to lower her NSAID medication, but her body won’t allow it.

Friday I was discouraged – and inspired.  Stuck in the middle I guess.  I was so heartbroken for her agony, and so proud of the tenacity to get into the day, and DO IT.

Choices.

They are tough to make.

We are faced with countless ones each day.

The choices we make are directly connected to the quality of the life we live.  Our desire to do the best we can with what we have, where we are – essentially defines WHO we are.

Maybe we aren’t “Stuck” in the middle, but rather placed there gently through grace.

Choices.

Perspective.

You-Are-What-You-Think1

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.

My Wish

What would I do?
What would I do?

I have been quiet this week.  That in and of itself is unlike me.

I am tired – well bordering on downright wiped out.

There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.

Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.

Today she began her summer homework.  While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.

There is no camp for Meghan.  It is all doctors appointments – all the time.  And when it is not her appointments it seems to be mine.  She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.

Wishes 1

And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.

The geneticist  the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist.  The spleen survived its next cut – and can live for another 9 months.  The 3.5 cm roundish lymphangiomas are stable.  That’s all we ask for now.  The thyroid lymph nodes – not suspicious enough to biopsy.

The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day.  Not this year, but thanks.  Good to know the offer stands indefinitely.  For now, I have other things to do.

So I have only one more of my appointments lingering, a late July follow up with the breast surgeon.  I thought of blowing it off and then realized how dumb that would be – for so many reasons.  So, I will go.

But Meghan’s appointments, those are the ones that keep me up at night.  Those are the ones that strike fear and anxiety in the core of my soul.  My heart beats outside my body in this little girl.  I can not sum up in any number of words the depth of my love for her.

So to say this summer, and especially this week has been sheer hell would be the understatement of the century.

worry 2

Her appointments began the day after school ended.  The lengthy thyroid sonogram bought us another 6 months.  The pituitary function test was a train wreck, but the call this week claims the results were OK.  I want to feel more relieved.  But its hard.  I am waiting to read the report myself.  “Doubting Thomas?”  Maybe.  Realist – probably.  Something is not quite right, but at least its not SO wrong it has to be addressed today.

The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy.  In the interim I bought carnitine.  Lets see if we can cut that one off.

The vascular surgeon examined the wrist, painful since early June, and the knee.  He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year.  The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.

Saturday, as I wrote about previously was hell on earth.  I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core.  I was assured upon exit, that the results would be available to my doctor Monday that passed.  Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday.  “It’s a complicated read Mrs. Ortega.”

Wednesday morning  – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am.  They will make it by 3 I was told.

A return call to the surgeon’s office at 4:15.  “They just got here, but the doctor is gone – emergencies.  He should be able to look at them tomorrow.”

Some time around 4 AM my daughter climbed into bed between my husband and I.  She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist.  At about 6:15 this morning she nodded off.  I tried desperately to find my peace.

God's got this

And all day today, again, I held my phone.  We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.)  I refused to be far from my phone.  But as minutes became hours, my hope dwindled.

A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk.  He has office hours tomorrow.”

Six days.

Unnecessary torture.

Six days.

Wondering, worrying.

Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal.  It is real, and it is consistent, and it has gone on too long.

I wish for a lot of things in the world.

I wish for children and their parents not to suffer with illnesses or adversity of any kind.

I wish for relief for those in physical, mental, and emotional anguish.

I wish for peace in the hearts and minds of the caretakers of those who struggle.

But today I also wish something else.

I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions.  I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance.  I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response.  I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.

I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.

Then MAYBE, just MAYBE they will understand our torture.

Hang on Meghan.  Summer is coming.  Hang on.

summer

 

Moving Forward

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born.  I was in the 6th grade and giddy to get to know her.  I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987
“Angel Meghan” – 1987

Her feisty nature,  her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me.  She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them.  She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

My Meghan - Spring 2004

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy.  I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates.  I remember numbers.  Maybe this is how my love of math shows through.  I like answers, and things that are absolute, or make some sense.  Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating.  These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person.  They are all pieces of that every evolving puzzle.

I thought about the surgery this morning.  I thought about it being a full year since all my “girl parts” were officially gone.  I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me.  Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago.  And I got dressed with a smile.

happy hysterecomy

I thought about Angelina Jolie.  I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk.  I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk.  I myself had been tested for BRCA1  years before I ever knew of PTEN. I was negative.  The genetic counselor who tested me did not even have PTEN on her radar screen.  I know its rare – I do.  But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks.  I am sure there are more that I haven’t learned about yet.  Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well.  Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters.  You know the haters.  The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

butt out

If you don’t like the idea of a prophylactic mastectomy – then don’t have one.  Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do.  Then, maybe then you and I can talk.

damocles

Until then,  wish Angelina a good long healthy life.  Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.”  Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street.  We are some of the strongest and bravest and smartest people you will ever lay eyes on.  We stop and smell the roses.  We hug.  We smile.  We laugh.  We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day.  The first year is over.  Now on with the rest of our lives!

************************************************************

In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)

Prophylactic Bilateral Mastectomy – Not just for the movie stars

I have been busy this week – working a on a few new projects.  Trying to find some distracting hobbies.  I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

Isagenix

This week involved hosting an anniversary party for two overly deserving parents.  It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers.  I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

hope its in our genes

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago.  Of that I am sure.  And we will continue our grassroots effort – one person at a time.  Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie.  Having heard nothing of the story, I asked what all the fuss was about.

English: Angelina Jolie at the Cannes film fes...
English: Angelina Jolie at the Cannes film festival. (Photo credit: Wikipedia)

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer.  She is so brave!”

I smiled in spite of myself.  I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

yes_theyre_fake_real_ones_tried_to_kill_me_light_t

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now?  She is so brave!  I can’t imagine anyone doing that!”

I still kept quiet.  I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it.  I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

meg necklace3

I told them I my daughter and I had a rare genetic disease.  That the denim ribbon was the symbol for rare and genetic disorders.  They asked what the name of it was.  So as I identified “Cowden’s Syndrome,” the expected reply was given.  “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth.  Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies.  Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars.  And I am so grateful for Angelina Jolie for being brave and going public.  But there is so much more people need to learn.  Nothing comes in neat little packages.  Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

are there any other mutations

“I had my double mastectomy.  Last year.  They found cancer.  And I am ok.  Genetic mutations aren’t just for movie stars.  Bravery isn’t just for those who have wealth and power.  There are more of us than you think.”

I was grateful when the tests arrived at the table.  It changed the conversation.  People don’t want to talk about cancer.  Especially not young women with genetically caused cancer.  It makes them uncomfortable.

I am glad Angelina Jolie went public.  I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day.  It doesn’t take a star.  Just a conversation.

Let’s talk.  Let’s listen.  Let’s learn.  We can save lives.

Collateral Damage

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens's avatarbeatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

 

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack.  This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant. 

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless.  The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

View original post 337 more words

No more “Toxic” environments

Almost a year ago – in June of 2012 – my husband was introduced to Isagenix, a nutritional program designed to help him shed some unwanted pounds and help him feel better.

You see it had only been a few months since his wife and daughter were diagnosed with Cowden’s Syndrome.  Meghan had had knee surgery (her 4th) in February of 2012.  I had my mastectomy, with the subsequent DCIS diagnosis, in March, and a hysterectomy in May.  By June the stress eating was evident as he just didn’t feel well.  We all needed his energy level to stay high.  There was certainly no time for our anchor in the storm to get sick or run down.

So, with the guidance of a friend – an Isagenix consumer and “pro” herself, we got him started on a 30 day program designed to help cleanse his body of unwanted toxins.  The thirty day program was a breeze for him.  He is one of the most determined people I know when he puts his mind to it.  It wasn’t long into those 30 days when he started finishing the extra vegetables at dinner, and choosing water over soda.  He just FELT better.

The information below is from the Isagenix website.

http://www.isagenix.com/us/en/cleanse_overview.html

Nutritional Cleansing unlocks the miracle of the human body


Nutritional Cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

  • Accelerate the removal of impurities from the body.
  • Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. Many people notice an ability to reach and maintain their ideal weight.

So when the thirty days were up, he chose to continue on a maintenance program.  He uses the Isagenix for one or two meals a day,  and snacks.  It fits in with the “on the go” lifestyle of a NYC employee.

And, as he sees fit – he opts to do a “cleanse day” where he drinks a power packed vitamin supplement and lots of water.  He eats very little food.  And he always feels better when he is done.  He knows now that toxins build up in the body, and he knows when  its time to let them go.

10 months later he is down a solid 35 pounds and countless inches.  No fluctuation greater than about 3 pounds.  It is gone for good.  The future is wide open, because as soon as his schooling is over – the exercising will begin again, and the remaining 15  pounds he looks to lose I am confident will melt away.

Father Daughter Dance November 2011
Father Daughter Dance November 2011
Father Daughter Dance January 2013
Father Daughter Dance January 2013

So how does all this have anything to do with “Beating Cowden’s?”

Here’s how I see it.

I haven’t used the Isagenix program, because I have not had a need to lose weight.  But, I have learned so much from reading and watching.

Essential to the program is the release of toxins.

This, I know a lot about from being Meghan’s mom.  From a young age it was evident toxins were difficult for her body to process.  She seemed to hold onto things, food dyes, additives, “extras” in everything she ate.  Nothing seemed to agree with her.  An almost exclusively organic diet became essential.

We used Epsom Salt baths in the younger years to help clean out what her body couldn’t get rid of.

I learned about biochemisty, and methylation.  I learned about Vitamin B12 and its ability to help her get rid of toxins.

So, over the last few weeks and months, when Meghan’s pain level has gotten progressively higher again, it was time for me to reevaluate.

Looking closely at her diet, there wasn’t much to clean up.

I have Dr. Elice looking closely at her blood. 28 vials this week!

But, it occurred to me that stress – life experiences – could be equally toxic.  So I started to wonder if the stressful situations in our life were causing a decline in Meghan’s overall health.

ichoose

This week we changed churches and schools.

I haven’t heard her laugh like this in months.

There is a spark to her smile, and a hope in her eyes.

Her hip still hurts.  There is a knot in the side.  There are aches and pains – but somehow… she seems just a little less toxic.

Felix is taking the Isagenix – but we have all benefited.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html#  (Message me if you want to know more!)