Mother, Wife, Teacher, Advocate

First I was a daughter.  A sometimes mousy, sometimes mouthy daughter.  I was respectful, but hated to be stepped on.  I wrote letters to the editor when I was annoyed.  I let people know how I felt.

Then I was a teenager.  I was full of opinions and was quite sure they were all right.  I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

hand ove rmouth

I spent 4 years away at college.  Even though I didn’t want to – lol.  I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college.  I am not sure I would have done either.  At college I learned to stand on my own two feet.  I met all sorts of people from all walks of life.

time-warp

By the time I hit my 20s life had educated me some.  I still held strong convictions, but I was able to accept that it was ok for others to have their own.  I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband.  A match that many thought was destined to fail.  And unlikely pair we compliment each other in every way.  He was my missing piece.

bethlehem 4

In my 20s I became a teacher.  A lifelong goal realized.  I worked harder than I ever had in my life to be the best I could be.  I recognized the magic of teaching.  I became addicted to the “spark” in their eye when they “get it.”  I came to see that my presence and my attitude were as important as my lessons.  I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer.  And I learned what it was like to be scared.  And I learned what really really matters in life.  And she fought, and she won.  I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married.  I got my Master’s Degree.  We bought a house.  We tore it apart.  We fixed it up again.  We got buried in debt.  We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Disney 2012
Disney 2012

Mom said you do more changing in your 20s than in your teens.  She was right.  But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body.  I learned that I would never be as important as that little human we created out of love.  I learned about family all over again.

In my 30s I learned to live without sleep.  I learned to endure tears and screeching and pain as my heart ached for my baby girl.  I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God.  I learned that my relationship with Him transcends walls and buildings and people.  I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change.  And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance.  I learned that even though I miss them, they are there when the going gets tough.  I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed.  I learned doing something is way more rewarding that complaining.

dead-poets-society-1thoreau 3

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them.  And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.”  I learned words like “Cowden’s Syndrome.”  I learned about “tumor suppressor genes,” and “genetic mutations.”  I learned about risks and tests that could take worry to a whole new level- if I let it.

rare-disease-day-feature

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel.  Deeply and truly.  I care.  Often too much.  I laugh, and I love with my whole heart.  I know pain, and I know joy, and I have been intimate with both.  I know fear and bravery.  I know that I am not always right – but when I am… watch out.  Because little will stand in my way.

I know life is not fair.

Life's not fair

god-is-good-logo

I know God is Good.

This weekend I went to 2 wakes.  One for a woman who had lived a full life, and another for a young girl who sparsely got the chance.  There are too many wakes.  There are too many things that don’t make any sense.  Too many people gone way too soon.

I can wail and cry and wither away in my sadness.  I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win.  It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump.  But I will not let it paralyze us.  I will not let it win.

So we have our team of doctors.  We have our visits scheduled.  We check it all.  Sometimes its tiresome.  Sometimes its discouraging.  But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching.  My student – learning from how I react, how I fight, how I handle adversity.  My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

always believe

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it.  I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car.  I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix.  I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

photo 1

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.”  Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy.  Empowering.  Invigorating.  Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”

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!

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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.

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!