AHCA, High Risk Pools, and My Child’s Future

I am angry.  I am hurt.  I am worried.

I have stayed out of politics through the entire tumultuous 2016.  I have serious issues with many politicians.  I am not here to talk about them directly.  I am here to talk about an issue that transcends political party affiliation.  I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far  more serious, and more important than any of that.  This is about my daughter.  It is about her life.  Her future.  And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America.  I will even agree that healthcare the way it exists today needs change.  However, when I look at a situation that needs change, I think it through carefully.  I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins.  That’s not just the math teacher in me.  That’s real.

Three years ago I was in a car accident.  It was a terrible situation, and I was T-boned at an intersection.  I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection.  I had the stop. I stopped.  He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving.  Because the stop sign was mine, I was assessed with most of the fault for the accident.  It made me furious.  I was told speeding could not be “proven” despite the absence of skid marks.  The other 6 accidents that happened at that intersection in the months preceding were not helpful either.  In the end, I was grateful for my life.  I walked away and took the penalty on my insurance.  I paid that accident penalty for three years.  And, while it did not make me happy, I did it.   The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once.  It might happen again, but it will not happen regularly.  I am 25 years driving, with one accident and no moving violations.  I have proven I am not a reckless driver.   I have control over that.  Full control, and I take my driving very seriously.

I also take health very seriously.  Unfortunately, there are aspects of my health I do not have full control over.  My daughter and I have a rare genetic disorder called Cowden’s Syndrome.  She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined.  Cowden’s syndrome causes tumor growth.  It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus.  It carries also significantly elevated risks of kidney, colon, skin, and other cancers.  Many of our tumors are benign.  Some are not.  The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk.  Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer.  I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords.  It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee.  Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee.  After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee.  There is wearing away of tissue causing the patella to shift.  There is extreme pain, not just in the knee, but all through her body.  Her right foot stopped growing years ago, but the left one kept at it.  Now a full size apart,  different in length and width, her 5’8″ frame feels the repercussions with every step.  She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment.  Pain medication caused such GI distress in 2014 that she spent a week in the hospital.  Cellular changes in the esophagus are not good in anyone.  At 10, with a condition that causes tumor growth, it was certainly another wake up call.  We gladly purchase 2 entirely different shoes every time she needs a new pair.  We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth.  She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10.  We still work to balance levels synthetically.  She had had TWO D&C procedures to eradicate suspicious tissue in her uterus.  She has had a lipoma removed from her back and vascular malformations from each palm.  She has lost her gall bladder.  She fights, stands up.  Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance.  I got it.  I am on it.  All the time.  And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us.  The copays and travel costs are often daunting.  But, we are fortunate.  We have two good jobs my husband and I tell ourselves.  We have good insurance.

We are careful with every morsel of food that enters her body.  We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants.  Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered.  Yet, still we prioritize health because we realize its value.  And we remember how fortunate we are.  We have good insurance.  We have two good jobs.

My daughter is awesome.  And, not just because she is my daughter.  She is a respectful, kind-hearted young lady.  She has the voice of an angel.  She acts in the plays at school.  She reads for fun.  She swims passionately.  She is an honor student.  She talks about her future, and what she will do with her life.  I have no doubt she has the capability to make a real difference in this world, regardless of her career path.  Today however, I am left to wonder.  Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.”  This is not like my car accident.  This is not a minor inconvenience.  This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away.  We have this genetic mutation with all its risks and ramifications for life.  Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from.  I’d ask you to indulge in a theory with me a moment.  My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968.  My mutation was traced to my father.  He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me.  Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter?  Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related.  I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American.  In addition to my Dad, I have three Grandfathers who were World War II Veterans.  I value the principles this country was founded on.  I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives.  I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices.  And if you do not like the site this link came from – scroll to the video.  Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition,  a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive?  Are they less valuable?  Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me.  But, I will not be controlled by that terror.

This post will reach my Senators today.  Social media can be used for good.   I have a voice.  I will not be quiet about this.

Tell your story.  And if you can’t find your own words, share mine.  Let our Senators know that we are real.  We are not numbers.  We are not a cost-cutting measure.  We have faces, and names.  We matter.  We all matter.

We are determined to remain

#beatingcowdens

We will not be silent!

5 Years and “Sag-less” in my 40s

5-years

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU.  I signed all the papers with my husband by my side.  I shook.  I prayed.  I was terrified.  But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.  This mutation is responsible for increased tumor growth, both benign and malignant.  It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things.  After our diagnoses, we began aggressive and age-appropriate screening.

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Meghan was 8.  I was 38.

They started with her thyroid.  And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group.  Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer.  (She does not have the PTEN mutation.)  I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology.  But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012.  She introduced herself to me, having already torn through my previously received medical record, and said we should set a date.  When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why?  “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively.  “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon.  The date they came up with was March 5th.  I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking.  “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative.  I am still amazed by that.  Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders.  She reminded me that the results would be “imperfect.”  I knew I could not delay my recovery by months.  I had a daughter, a family, and a job to return to.

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The surgery was uneventful.

I vomited repeatedly as I left the house that morning.  I cried as I walked into the OR.  My surgeon called me “brave.”  I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later.  There were drains and wrappings, but there were things to do.  I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there.  The plastic surgeon was the first to mention how lucky we were we caught “it” early.  I was confused.  She said, “The cancer.  It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

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She realized then she was the first to share the news.  Our next stop was the surgeon.  I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay.  I have not traveled the road as they did.  I will forever admire them.  But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us.  That is a feeling, and knowledge that can not be explained.  You either know it, or you don’t.

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My implants lasted less than 5 years.  The life expectancy is 15.  This past summer they were replaced.  Scarring was severe on the right side, and the scars needed to be broken up.  A new pair replaced the old.  Nothing flashy.  Quick surgery, quick recovery.  No big deal.  Just a reminder of the reality that will follow me forever.

 

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model.  My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals.  I celebrate even through miles of survivors guilt.  I celebrate despite my broken heart as so many around me are taken by cancer.  I celebrate because that is what they would want most.

Once you’ve been there.  Lived it.  Watched it.  Seen it.  You get a deeper sense of how precious life is.  And you celebrate what you have each day. It’s not easy.  Life can be messy.  But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

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Set Up Surgery on Safari – check

Last Tuesday, on Meghan’s 13th birthday, we woke early and headed to the airport for what has become an annual family vacation.  Disney World is a “happy place” for all of us.  Despite crowds, and heat, we seem to be able to locate so much magic there.  Plus, it’s not here.

I like it here.  In my house, with my family.  But being “here” in a broader sense means doctors and tests, and appointments and procedures.  And traffic, and waiting.  And bills, and phone calls, and all sorts of obligations that often keep me tied to my desk chair.

In Disney someone produces allergy safe meals for us.  In Disney there is no driving.  In Disney there are fireworks and parades and shows.  While we are in Disney Mom watches the dogs and the house.

Those 8 days designed as a respite.  A safety zone.  A doctor free area.  And we look forward to it every year.

This year was even more special because Meghan brought a friend.  She got to bring a kind, compassionate, witty young lady who had been by her side through some ups and downs the past year.  There is not a long list of people who Meghan trusts enough to take into confidence, and I can’t say that I blame her.  But, this young lady has similar loyalty standards, and held her composure as Meghan threw some tough stuff at her.  Meghan is forced to think about things and process things that are not even remotely acceptable to have to deal with at her age.  Most peers are overwhelmed.  Many shy away.  This young lady did not NEED Meghan as a friend, they CHOSE to be friends.  As different as they are, they compliment each other nicely.  So we set off on our adventure this year as a party of 4.  The Ortegas plus one!

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Once we found our groove, (adding a wheelchair takes finding a balance) we were off and running.  Great food, lots of laughs, and the highs and lows you’d expect from two spunky teenagers.

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I was distracted Friday when my cell phone rang, while we were on the Safari at Animal Kingdom.  I should have seen the NY number and known what was coming.  But, I answered quickly.

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It was my plastic surgeon’s office.  The one who had told me they could fix my implant some time in the spring… well, they were offering me a spot on August 19th.

If you don’t have the back story on this I’ll give you the quick version.  After a double mastectomy in March of 2012, I opted for immediate reconstruction.  I was very pleased.  Then in November of 2012 I was in quite a car accident.  I took a good hit to my totaled Hyundai.  The implants were intact, but likely never quite the same.  By the summer of 2015 I had been experiencing some pain and discomfort on the right.  I went back to my plastic surgeon in November of 2015.  She told me the right implant had fallen a bit, and I should have (non-emergency) surgery to pull it back up.  Except, she was no longer accepting my health insurance.  The year that was had Meghan in the OR I believe 5 times.  I struggled to get the courage to call the new plastic surgeon.  I was annoyed to have to do all this again so soon.  The initial estimate on the implants was 15 years.  This was under 5.  I finally got an appointment with the new plastic surgeon a full year later, in July of 2016.  He concurred that a surgical procedure to “tighten things up” was a good idea, and that I could schedule at my convenience.  So, I tried to get it scheduled for the summer.  Then I tried for October when we have a few days off.  Then I tried for December… and before I knew it I was looking at spring break, almost another year of what had transformed from pain, to just an odd sensation, all the time.

I listened as I was told I could have the date one week away.  I looked around at the animals on the African Safari.  I tried to keep my conversation low enough to make sure the girls, and no one else on the vehicle was following along.  I promised to return the call in an hour.

I hung up and managed to share the story with my husband.  Then I called my Mom.  Then I called the plastic surgeon back.  “Let’s do it.”

So the following Monday was spent ducking away to make phone calls to set up pre-operative appointments.  Because the plane was due to land at midnight Tuesday.  I needed blood drawn, and a physical Wednesday in order to hold the spot.

Tuesday we left Disney.  The step count on my FitBit was over 142,000  I had covered over 62 foot miles.  I was tired, but happy.

We did have a great week, and while I was bothered on some level that the surgical planning creeped in, I am skilled at managing many things from my cell phone.  And, the thought of getting all that straightened out months ahead of schedule was exciting.

Tuesday it rained.  In NY and in Florida.  There was lightning.  There were delays.  Lots of them.  Our plane landed well after 1 am.  I hit my bed hard at 3 and was on the bus to NYC for the lab work by 9.  After battling NYC traffic there and back, I went for the physical.  Passed, and papers faxed to the plastic surgeon by 4:00.  Success.

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Life moves quickly.  We have to keep up.

The call came Thursday to be at the hospital at 6 AM Friday.  While I am not a morning person, only the surgically experienced would realize that is like hitting the jackpot.  It means you’ve got first case.  And that is a giant win.

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There was little time to share the plan with anyone.

Yesterday morning I had bilateral implant repair between 7:30 and 10 AM.  I slept till 1, had some ginger ale and crackers and was home by 2:45.

Last night I laid in my bed catching up on Email and I caught one from Meghan’s endocrinologist.  The thyroid numbers have gone a bit off again.  He wants to play around before repeating labs in 6 weeks.

Medication readjusted.  Again.  Illogical.  Like so many other things.

Apparently #beatingcowdens involves scheduling surgery on an African Safari and readjusting medications hours post-operatively.

We’ve got this.

Thank goodness for our time in the “Happiest Place on Earth.”

 

 

Body Betrayed

The first time I felt the pain it was last summer.  It was under my right implant, and from my armpit a bit down my side.  The pain lasted a few days and then eased itself into a chronic state of discomfort.  I went from almost 4 years of barely noticing, and sometimes forgetting the silicone implants that had replaced the breasts in their earliest stages of cancer in March of 2012 to thinking about them all the time.

Now I knew the right one was there.  And it was bothering me.  For physical, and deeply psychological reasons.  It was getting in my head.  Messing with my focus.

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I went to see my plastic surgeon in November of last year.  I adored her.  I wanted her to make it better.  Her words were reassuring to a point.  The implant was intact.  There was some minor movement.  I should get it taken care of but it wasn’t an emergency.

Then there was the bombshell.  She was no longer accepting my health insurance.  I definitely cried right there in the office.  She cried too as she apologized, handed me the name of the doctor I needed to see and scurried out of the office.  I still adore her.  But, I’m sure I’ll never see her again.

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So, faced with the reality that I needed to start over, on a journey I wanted to forget ever happened, I did the logical thing.  Nothing.

I lived in a state of denial for months.  And slowly I started to restrict the activities I would do with my right arm.  Certain basic tasks would make it bothersome.  Fitness-wise, push ups, planks, weight lifting, and even the elliptical were out.  I no longer trusted my own body weight on that arm.

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One day in December I mustered up the courage to call the office of the new doctor.  It took a lot.  I trembled.  I had my calendar set up for January and February.  I was ready to schedule that consult.

“Late March…”

I heard nothing past that.  After I was told the earliest appointment I could get for a consult was late March.  I hung up the phone and did what I do when excessively frustrated.  I cried.

When I saw my breast surgeon for our annual check up in February, she noticed the subtle problem.  She asked who was looking at it.  She also proclaimed it, ‘not urgent.’  I told her about my experience trying to get an appointment with apparently the only plastic surgeon that does breasts and takes my insurance left at this hospital.  She vowed to have her scheduler help me get in.

I met with the scheduler.

I never heard from her again.

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March came and went.  Life was busy.  Meghan was in and out of surgery, Pop had been so sick, Grandma was struggling, we had the fundraiser…I found a reason not to call every single day.

Then I really wanted to work out my arms again.  Walking was getting boring.  I mustered up the courage in April to call.

July 18th.

I had to take it.  I cried again.  I tend to cry most in my life when I am frustrated.

I brought Mom with me to this appointment.  I never need another pair of ears.  I did this day.  I was a wreck.

The doctor was wonderful.  Kind.  Sensitive.  Funny.  Everything I feared he would not be.  I exhaled.  He said it was again, not an emergency.  But, he saw my issue, understood my discomfort and agreed at my convenience he’d try to fix it.  He ordered one test for a sensitive spot under my arm, and asked me to try some physical therapy when I could.

I talked it out with my mom.  I talked it out with my husband.  After waiting almost a year, I was ready to get it done and stop favoring my dominant arm.

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I called to make the appointment for the test.  Except it had to be done in the hospital.  And it needed insurance pre-authorization.  And I tried for one solid week to get in touch with this doctor’s office staff.  Three Emails, 2 phone messages and several canceled appointments, I finally got a human.

I got them moving quickly, and they got the insurance authorization immediately.  I scheduled the test, and it was fine.

Then I called to schedule the surgery.  I was thinking I could still make August.  I was wrong.

What about September?

UGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I took out the calendar once again.  We have 4 days off in October…  No luck there.  No, he doesn’t work December the week I’m off.  And in February we have the fundraiser…

Looks like once I calm down I’ll schedule for Spring 2017.

When the time came to have the double mastectomy I opted for the quickest route.  I was out of the hospital with reconstruction complete in 28 hours.  I wanted this done.  I was so incredibly fortunate not to need treatment.  I was grateful.  More energy to focus where it mattered.

Except once cancer has lived inside of you there is this uneasy feeling that can not be explained.  There is this knowledge that somewhere in your body those cells did what they were not supposed to.  There is this feeling that you were violated and betrayed by your own body, from the inside out.  It damages trust deeply.  It’s hard not to trust your body.  It can really mess with your mind.  So understandably, I was interested in functioning without that thought process.  I had become adept at ignoring my scars and “nipple-free” implants.

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Until I started to feel them.  Every damn day.

This is minor.  This can be fixed.  And it will be.  Just not in a time-table anywhere close to my liking.

I picked up the free weights again today.  Really light.  In my chair.  What’s the worst that happens?  Really?  If it becomes an emergency they have to move faster.

Otherwise, I’ll balance that full-time job, that beautiful, active 8th grader, and a boatload of afterschool activities.  I’ll try to get out of my own head.

But, no matter how vigilant, or how confident…  thoughts of the potential renegade cell, lurking like a thief in the night never quite go away.

#beatingcowdens is a full-time job

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.

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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.

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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.

 

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 … Continue reading

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.

Happy Birthday to my boobs!

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors.  Making sure Meghan was packed for school.  Triple checking my hospital bag.  Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident.  It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor.  Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body.  Don’t wait till the summer – she somehow convinced me.  March 5th.  Get it done.

one_year

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM.  I can remember every detail of the morning.  It is imprinted in my subconsciousness.  It may fade over time – but for now…

My brother in law called my cell phone by six.  We prayed together.  Then, I just focused on breathing.

Checking in takes forever.  Everyone stopping in.  Lots of waiting.  I paced that small room so many times I swear my footprints are probably still there.

run-clock

And my husband – my pillar of strength – just waited with me.  When I wanted him to pay attention – he stopped and held my hand.  When I wanted him to ignore me, he dutifully read comics on his iphone.  I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in.  Well this was not an easy concept for him.  Apparently that is just what everyone does.  The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon.  I had no desire to have giant boobs.  Nope.  I was sure.

She can keep her award...

She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery.  (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in.  After a lengthy discussion, she agreed.  It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right.  They were to put in whatever one of these fit best – preferably a matched pair.

fake boobs

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees.  Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team.  Two women who are talented, compassionate, and understanding.  They gave me the peace of mind I needed right before the anesthesia.  The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.”  After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience.  I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated.  I was so relieved.  The storm had been calmed.  It was done.

jesus_storm_calms_4

I left the hospital about 28 hours later on March 6th.  I couldn’t wait to see my girl.  The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old.  At least that’s the day I adopted them.

And what a year it has been.

A roller coaster ride!

A roller coaster ride!

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer.  Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?”  It was done.  I was OK.  By the Grace of God alone – the cancer was out before it was ever a problem.  And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment.  Without Meghan, and without her diagnosis.  I would have never proceeded with such an aggressive surgery.  God gave me my little girl, and spared my life.  We will use that gift as often as we can.

helping others

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now.  So, in May we went back.  This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan.  It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

I really did love my Hyundai

I really did love my Hyundai

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears.  I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!)  I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs.  One year with the new and improved CANCER FREE version.  One year of countless blessings.  One year of boobs that will never sag!

getting over pain

HAPPY BIRTHDAY TO MY BOOBS!

one

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

http://pinkunderbelly.com/2013/01/23/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!