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!

Type A, and Then Some…

Calm down.  Relax.  It’ll get done.  Take a breath.  Why do you get so worked up?

These words could be spoken in several alternate languages for all the good they do for me.  They make no sense.  I mean, on a cognitive level I understand the words.  And even the context.  But, they hold little practical application for my life.

I am Type A.  Yep.  For it’s highs and lows, positives and negatives, I am a Type A personality.  Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.

16 Signs You’re a Little Type A

Go with the flow.

I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me.  She has 4 boys.  (She used to be full on Type A.  Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)

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I am high-strung.  I am focused.  I am task oriented.  I am all about getting it done and getting it done well.  I get pissed when other people fall behind on their jobs.  I want order, structure, and routine.  I make lists on top of my lists, while putting alerts in my phone to avoid missing anything.  I have a hard time forgiving myself when I do.

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I am a work in progress.

But to some extent, regardless of your personality type, I guess that’s true of all of us.

September is chaos.  True, unequivocable chaos.  Here, in this house.  Here, in my mind.  September is the toughest month of the year.

And apparently I’m not alone, because this article really cracked me up.  September Is The Worst

If I could jump from August to October, it would be smoother.  And I’m not a big fan of wishing my life away.  But, transitions are especially tough on the Type A among us.

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And, when you’re a teacher – well.  That’s just a whole other story.  But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly.  With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can.  Figuring out who has allergies, and who has an IEP is another struggle.  Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing.  Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock.  There’s no way they even remember my name, let alone where they should sit in my room.  Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October.  Copies of the schedule, printed, Emailed, and hung everywhere.  Supplies, traffic patterns, expectations, all need establishing and reminding.  That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.

The agenda that is busting at the seams.  Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok.  Setting up the school and after school schedule for the child(ren) is a full-time job on its own.  August looks so nice.  The calendar lulls you into a false sense of security, as one by one the activities start-up again.  And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop.  Never mind hair cuts!  There’s the one time deals, like back to school night, and “returning parents swim meeting,”  Every minute of every day seems to hold something.  I know I have only one kid, but that doesn’t mean she can take herself to swim practice.  Or pick herself up.  Or that most of the time I can even leave her there, as lingering fears about her health are always present.  And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school.  And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release.  I think there’s a few minutes on Wednesday between 3 and 4 for sunshine.  Oh, wait… groceries…

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And to the left of me sits the Open House Schedule for High School.  Still shaking my head as to how THAT happened, I am trying to figure out their days of the week.  Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October.  There is the TACHS test, and the Specialized High School Test.  Although I’m not really sure when there would be time to prepare.  Unless, maybe there’s and app for that?

I haven’t even mentioned our health.  Isn’t that just funny?  It hasn’t rested one bit.  And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A.  Chances are good they like to excel at EVERYTHING.  And in my case, I am willing to throw it at them.  Hard.

Some time towards the end of August I had surgery to replace my implants.  Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time.  That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds.  Her levels were off again.  Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling.  More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks.  So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask.  I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning.  My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it.  But mail order takes 2 weeks.  And there was no telling whether she’d be on the dose for more than 6 weeks.  But, whatever.  I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.

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And then the real battle ensued.  I tried to get it from one doctor.  They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order.  I called the office of the endocrinologist.  Twice that Monday.  And again on Tuesday.  I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility.  The ‘ office said they’d send them.  The MyChart people said they’d look into it.  I waited.

Exactly a week.  There were no labs in my mailbox.  I called the endocrinology office again.  I got someone who promised to send them and did.  I called the MyChart people again.  No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.

REALLY???????????????????

Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records.  But, this, this is THYROID blood work.  She doesn’t want it.  TRUST ME.  She just wants me to give her what she needs to feel well.  That’s it.

I processed all I could about this at the same time that I got ANOTHER bill from this hospital.  The date of service looked familiar.  I keep copious records.  (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit.  And NOW, they were asking me for 2 additional Co-Pays.  Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits.  I called the primary carrier.  They reversed the charges, but told me the billing practice was not illegal.  Ok, then its immoral.  And it preys on people who are sick, or who have sick kids.  The insurance company also told me it was ON ME to call them when this happens.  ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.

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Good, cause I needed something else to do.

By the first Friday in September I had had it.  I found the CEO and Head of Patient Relations.  I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.

I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it.  One mail even came second day express.  Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.

I received a letter from Patient Relations that they were reviewing my concerns.  I’m not holding my breath.

That same Friday I tripped and fell and did some number on the pinkie toe of my right foot.  A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion.  The 3 hours I spent visiting the last podiatrist was a waste of my time.  So, I am in a post op shoe for some infinite amount of time going forward.  Because there is little chance in heck the right foot is getting into a sneaker any time soon.  Good thing it’s the perfect month to “take it easy on the foot.”  (Insert sarcastic grin here.)

Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold.  It still gets to be called “benign appearing.”  I was also told I have “significant vocal fold atrophy secondary to premature aging.”  Well, that sucks.  Because I thought atrophy took place when you didn’t use something.  And oh, I use my voice.  And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move.  It all comes back to Cowden’s somehow.

Over the weekend I noticed that the knots from the implant exchange were getting irritated.  This doctor like all the others had been warned, I don’t dissolve stitches.  But, as wonderful as he was, he also needed to be shown.  I clipped one of the knots myself and there was immediate relief.  Then I second guessed myself.  By Monday the site I hadn’t touched was red and warm, while the other was healed.  I took a photo and sent it to the PA.  Come in tomorrow she said.  So Tuesday afternoon, my surgical shoe and I trekked into Manhattan.  She pulled the stitches, read a low-grade fever, and marked the redness.  She scripted me with 5 days of antibiotics but told me to wait 12 hours.  Wednesday morning I sent her a photo.  “Looks better, right?”  I said.  “Start the antibiotics,” was the reply.  So, I did.

Friday, Meghan made it to morning swim practice.  5:15-6:30AM.  I dropped her off, and headed home to shower.  I met her with breakfast.  We stopped off to drop her bag, and were at her school by 7:22.  I picked her up at 2:20 and she made afternoon practice.  I was tired.  She made it to youth group too.  I was in bed by 10.

Friday I spoke to the endocrinologist – finally.  I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication.  I don’t think it will happen again.  We talked it through.  Wednesday the 28th we’ll head to the hospital lab to repeat.  We are going there because then there is no chance for anyone to blame a variation on a different lab.  But, that’s ok cause there is that free hour on Wednesday…  He will call me on the 30th with the results.  I believe him.

I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.

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This morning Meghan woke up with a sore throat.  She had to skip practice.  That’s always a tough call for her, but the right one.  She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.

Slow it down.

Hmmm.

I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold.  We have to gather enough spoons to save for something fun.  Anything.  But there are no spares.  Especially not in September.  (If that last paragraph confuses you – you can Google The Spoon Theory)

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Sometimes, when I have a minute, I  think about calling some of the friends I miss a lot.  But, I don’t.  They have crazy wild lives of their own.  My fears and anxieties and worries exist, and so do theirs.  But for some reason right now, they largely exist separately.  I miss them.  And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.

I am super-blessed with a husband who not only tolerates my Type A, but works with me.  He cleans, and cooks, and remembers to make me laugh.  A lot.  Often at myself.

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I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life.  One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world.  Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.

Instead of hiding, we remain,

#beatingcowdens

forever!

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A Letter to Me as a “Mommy-to-Be”

Dear 30 Year Old Me on Mother’s Day,

Listen up.  Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way.  Do me a favor and sit down a minute.  You don’t sit much, but you focus better when you do.

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Life is hectic, I know.  You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing.  You have a lot to do.  I get it.  There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade.  There is this small, ok, large human growing inside you.  There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time?  I mean it.  Force it in.  Make time for you and your husband to just be.  Make time to laugh.  Make time to rest.  Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back.  Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality.  And you will always have each other’s backs.  But, they will have husbands, and children and houses, and obligations of their own.  Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts.  (Yes, you’ll have a blog, but I’ll explain that later.)  You’ll regret not seeing them more.  Not sneaking in a few more dinners out, or some drinks and dessert.  The time for that will come again, but it’ll be much later.  And sometimes you’ll get lonely.  Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you.  Broaden your definition of healthy into a “spectrum.”  Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few.  Don’t bother looking at Pinterest.  Your life doesn’t work there.  Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever.  One day it’s going to make its way into the world in grand fashion.  And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine.  By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor.  She’s got a big head just like you.  The C-Section is inevitable.

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And, she’ll be the biggest baby in the NICU.  Right from the start you’ll hear about her feistiness.  The nurses don’t lie.  Right from the start you’ll have to change your perceptions of how this mothering thing was going to go.  From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely.  She will cry and scream and yell in ways that your family will forget, but you will remember for life.  You will learn how to function on raw nerve.  You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her.  Because you know she’s not “spoiled” even though she only rests on top of you.  You know it’s more.  You know it’s her belly and you will hang on when others want easy answers and excuses.  You will fight for her because you are her mom.  And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.”  This is only the beginning. Dig in hard and sharpen your instincts.  Trust yourself.  Ask tons of questions.  Learn early that doctors, and therapists are a dime a dozen.  Settle for nothing less than the best.

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Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl.  They will change your world.  Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist.  She’s going to confuse them, and amaze them.  She will start to retreat into herself.  All of a sudden she’ll be two, and not making a word.  Hang on and don’t let her go.  She’s not autistic, and never was, but she is medically complicated and she is not well.  You will try as hard as you can.  You will read, you will frantically research.  You will seek out expensive alternative specialists.  You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike.  You will slowly find your confidence.  You will become a master record keeper.  You will try things that are “different” just to see what happens.  You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk.  You’ll worry that she’ll never eat again.  You’ll get angry when you realize that the food she’s eating is making her more unwell.  You’ll learn about the immune system and the GI tract.  And by the time she’s two and a half you’ll get a whole lot of babbling.  By the time she’s three and a half the speech therapist will cut her loose.  Her belly will be flat.  She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down.  Because, like a detective you will spend nights poring over things to make connections.  You will have volumes of daily diaries, and binders of lab results.  You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually.  You’ll cherish every moment extra, because you’ll know from where she came.  She’ll have surgery after surgery, and a few more hospital stays.  There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body.  It will hurt you to watch, but you will be strong for her.  You will not give up.  You will not give in.  You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again.  “Cowden’s Syndrome,”  a “PTEN Mutation.”  And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions.  You’ll try desperately to wrap your head around the realities of this tumor provoking condition.  You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count.  Then, you’ll get that positive test result too.  That day when guilt takes over for a while.  That day when you realize she doesn’t just have your hair and your smile.  She also had this syndrome because YOU have it too.  Don’t hang out in the pity party for too long.  It’s not good for either of you.  Trust in the grand plan.  

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever.  I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there.  But, one day it will end.  Do me a favor and take a few extra minutes and cherish each of them.  Even if you’re really tired.  Swing by.  Say hi.  Pick up the phone.  You’ll be glad you did.  I promise.

Days will blend into weeks, and weeks into months, and months into years.  You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy.  Yep.  With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands.  Don’t stress over it for too long.  You’ve got good instincts.  The double mastectomy with immediate reconstruction will be one of your best decisions ever.  Get home to the angel that saved your life.  The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior.  You don’t need perfect breasts.  You need vigilance.  This beast will nip at your heels through a complete hysterectomy weeks later.  It will swipe at you.  Take care of yourself.  Recover quickly and completely.  Lose some weight.  Fill your body with excellent nutrition.  This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl.  There will have been 16 times when she was walked into an operating room, and put to sleep.  16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through.  And you’ll know in your heart 16 is only the beginning.  But don’t get caught up in that.  TRY to stop putting it all together.  TRY to just breathe, and enjoy the moments as they come.  

One day you’ll look at your baby, all strong and determined.  She’ll be taller than you and you’ll wonder how it went so fast.  She’ll be mature, and so smart.  She’ll be talented and compassionate.  She’ll still be feisty and competitive too.  She’ll be as athletic as her body will allow.  She’ll swim and sing and be active in fundraising and outreach work too.  She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face.  Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world.  You’ll blog diligently, as often as you can, making sure to have her edit most of your work.  

She’ll struggle sometimes, and so will you.  Sometimes you’ll even argue.  But, it’ll be the most amazing relationship you can imagine.  You two will spend more time together than most other mother-daughter duos.  Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other.  You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough.  Be sure she lives and breathes the reality she is loved.  Deeply, and sincerely.  Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is.  Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years. 

It’ll be a busy 13 years.  But, every single moment will be so worth it.  Trust yourself.  Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected.  If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine.  We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self

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Hyper-vigilance

Hyper-vigilance.  Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

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When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant.  Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different.  One is a state you may be in sometimes, when it is necessary.  The other is a place you never leave.  Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another.  That to me is silly.  I know LOTS of people who suffer on a regular basis.  I can’t say I would want to trade places with any of them.  And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

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I don’t view us as “sick” people.  As a matter of fact we are regularly called,” The healthiest looking sick people…”  But, we aren’t “well” either.  It gets complicated.  Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake.  Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress.  That means NEVER leaving the house without food.  JUST IN CASE.  It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window.  It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty.  It means driving far and long to get the right food at the right stores.  It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

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Hyper-vigilance means watching the medication intake.  To make sure we don’t forget an antiviral.  Because when we do it sets off a tirade of events that are hard to bounce back from.  It means typing the list, and checking it over.  It means teaching her to know her medicine on sight.  It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach.  It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.”  It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes.  It also means spending HOURS AND HOURS trying to make the mail order medication people get it right.  Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors.  All of them.  All the time.  It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule.  It means often following up on those appointments, with imaging studies and more appointments.  And then repeating those “unclear” imaging studies, again and again.  It means getting blood work done, often.  Usually at least once every 4 weeks.  It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better.  It involves medication adjustments.  Making sure it’s taken on an empty stomach, and every single day.  It means there is always a list nearby of who needs to be scheduled next.  It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

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Hyper-vigilance is hearing the symptoms every day and trying not to panic.  When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these.  Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own.  Hyper-vigilance is being very aware, but never panicking.  It’s a fine line.

Hyper-vigilance is Physical Therapy.  As often as we can fit it in.  Because something always hurts.  When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”.  The hip, the shoulder, the knee.  They all hurt, and it won’t get better.  It will only get managed.  For as long as we can fit in the PT.

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Hyper-vigilance is also finding balance.  It’s also searching somewhere for “normal.”  It’s making 4 swim practices a week, often on raw nerve.  Because she wants to feel normal.  She wants to compete.  And let’s be truthful, she wants to win.  It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.”  It’s getting her to drama, because she’s skilled there.  And she fits in.  And the teacher is awesome, and the kids know her for who she is.  It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up.  Too much stress is no good for anyone.  Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too.  It is making sure I am at my best so that she is at hers.  It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me.  It’s remembering they were worried enough to take the uterus and the ovaries too.  It is working hard, at my job, and my life, and showing her it can be done.  But it’s also about letting her know I get tired too.  Because in those moments she sees that she is normal.  And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes.  And she picked up the vacuum.  And she helped.  It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking.  Me.  Walking 4-5 miles a day almost every day.  Because my bones are already crapping out.  After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning.  It’s necessary for me to take good care of me.  To fuel my body properly.  To limit the junk in.  To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment.  It is having to say no, we can’t go.  It’s not being able to tell people in advance.  It takes away from advance planning, even the fun stuff.  Because life with chronic illness is day by day.  It makes me feel badly, often.  So sometimes I avoid making plans.  I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

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Hyper-vigilance can be very isolating.

It’s hard for some people to understand.  And I get it.  Because a few years ago it might have been hard for me to understand too.  It makes people uncomfortable that this thing we have is never going to get better.  People feel better when things can be fixed.  But it can’t.  We are not going to grow out of it.  It’s here.  It’s part of us.  Like the ‘elephant in the room.’  But, we understand other people’s problems too.  We get the myriad of health issues that surround us.  And we empathize.  And we don’t need to be sheltered from them.  As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting.  And today I took a two-hour nap.  Because my throat started to hurt.  And my body was giving me all the warning signs that I had pushed a little too far.  I shortened the walk.  I stayed in mostly.

It’s like training.  For real life.  Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay.  The only path to this end is hypervigilance.  And even then, just like in life, there are no guarantees.

We remain forever  Beatingcowdens!

To the Middle School Girls Who Doubt My Daughter…

July 20, 2015

To the Midle School Girls who doubt my daughter’s medical conditons:

I want to start by telling you, I know it’s not your fault.  You are generally healthy.  You were raised by people who are generally healthy.  You get sick.   It gets better.  You want your share of attention.  You resent that sometimes my daughter needs a little extra help in the halls.  It’s not fair that sometimes she needs to sit out of Physical Education.  You are tired too, right?  It doesn’t seem fair that she needs to leave early from the class right before lunch.  You’d like to stretch your legs too.  Why does she “get” to being her own food everywhere?  And is she really “allergic” to all those foods?  Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk?  She must be lying, right? Looking for attention again?  Why does she get to leave early so often?  You’d like to get out of last period too.  I get it.  I understand.  You look at people who look sick, and you are probably really compassionate.  Except now that you’re older, it’s time for me to let you in on a well kept secret.

Not everyone who IS sick, LOOKS sick.

Take a moment and process that.

Now I’d like to tell you a little about my daughter.  The real Meghan.  Not the one you always see, but the one I see.  The one who I have kissed before 13 surgeries, as she left me for the operating room.  The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital.  The one who has shed tears of pure frustration and anger over the things that have been restricted from her life.  The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.

Let me tell you about the Meghan who knows your problems.  The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok.  The one who understands deeply your anxiety about getting a blood test.  The one who “gets it” on levels you’ll never understand.

Let’s talk about the paraprofessional.  While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help?  Do you think she WANTS an adult escorting her through the halls?  Think about that for a minute.  She doesn’t WANT to be different.  Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.

And about the trips to the nurse.  Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all?  Any idea what it is like to never be spontaneous about just grabbing a bite of something?  Because your body simply doesn’t make the enzymes it needs to digest food without help.

Please don’t even get me started on the cafeteria.  In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous.  But, out of the house?  Not so easy.  You want to know about her allergies?  About how she can be “allergic” to milk and eat a product that contains milk?  I get your confusion.  But, here’s a tip; when you are confused, ASK, don’t assume.  She’ll probably willingly share the reasons with you if you are actually interested.

She spent a large part of her very young years vomiting a lot.  Sometimes so much that she ended up in the hospital.  Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3.  She had ear infections all the time and her head was full of fluid.  She didn’t talk much, (I know – hard to believe) because her head was clogged up.  She cried because she hurt so badly.  She was allergy tested for lots of things.   Nothing came up.  Nothing at all.  Then I used my brain.  And my instincts.  And we targeted some foods.

And do you know what we learned?  We learned that without milk, she doesn’t get ear infections.  And she learned how to talk right away.  And her head stopped being so full all the time.  And she could rest.

Then I kept looking.  And I learned that soy, in its purest form, caused a rash all over her body.

And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.

Are they “allergies” in a technical sense?  No, I guess not. But, they are just as important.  I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods.  Even strawberries.  Or anything with seeds.  Or anything too greasy.  Or cross contaminated.  (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)

So the meal bars she eats at lunch, yes they say, “conatins milk.”  But, you know what?  They agree with her.  She doesn’t love them, but she eats them for NUTRITION, so she can function through the day.  The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.

Why would she be anything less than honest about not being allowed to have regular milk products?  Do you know she has never had ice cream from the ice cream man?  I have to send her own pizza and chips and cake to parties.  Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs?  Does that really make any sense?  Ask yourself of all the things to be less than truthful about, does that even enter into logic?

And about physical education.  Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her.  Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain.  The girl who wants to play longer and harder than any of you, but can’t.  The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time.  But, she can’t.  Because the surgeon said not yet.  And even when she’s able to join in, it will likely be on a restricted basis.  Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair.  Walking more than about 1/2 mile consecutively is too stressful on the knee.

Oh, and the tired.  Yep, you are tired too.  I get it.  You were up late last night.  Probably watching a movie, or doing something fun.  So you are tired. But, she went to bed at a decent hour.  Hers is a different tired.  Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal.  Hers is from a body that makes a hobby out of defying her.  You’re both tired.  But, it’s not the same.  Trust me.

This is the girl who stays on stage during drama even if it kills her.  Even if the pain is at its greatest intesity, because no one has restricted her there, yet.

This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water.  This girl has to go to PT 2x a week just to get into the pool.  This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve.  This is the girl who took less than 2 weeks off from swimming after her knee surgery in May.  Because she WANTS to play.

And all those times I pick her up early.  It’s not for a manicure/pedicure.  Turst me.  See, Meghan has a rare disease called Cowden’s Syndrome.  She’d be happy to tell you more about it.  She got it from me.  It causes non-cancerous, and cancerous growths to grow all over the body.  She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.)  But, there is a doctor, and often a surgeon, for just about every body part.  There are MRIs and scans, and hours travleing to Manhattan.  No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt.  We do the hospital tour.  The average round trip is 4 hours, usually after a long day of school.

This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet.  This girl has had her mother diagnosed with cancer when she was in 3rd grade.  This girl has the same genetic condition as her mother, and the same cancer risks.  Some days she has a lot on her mind.

Meghan is not perfect.  I know this, and so does she.  And if you have a problem, talk it out.  Sometimes you’ll be right, and sometimes she will be.

Just don’t assume things.  There’s a saying about that… and it’s all true.

You see invisible illnesses, like Cowden’s Syndrome are very, very real.

Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.”  They would ALL benefit from your compassion.

Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.

Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious.  Forgive me the word adjustment.  It’s necessary to ensure her safety.

You see the hardest part about all this for me, is not being able to give you this speech in person.  For the last 12 years I have been her voice, her mouth, her protector.  Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this.  She has to find her own comfort zone.

And I have to watch.

My confidence in with my daughter.  She will pick the right friends.  She will speak up at the right times.  She will learn all about herself.  She will become her own best advocate, to you and to the world.

And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.

Don’t worry, she’ll pack her own snacks.

Sincerely,

Meghan’s Mom

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“She’s so unusual…” and Other Ironies

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days.  The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?”  Sometimes I find that question to be the biggest irony.  I struggle often, and deeply.  The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

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So often my writing is where I work it out.  I type.  I think.  I read and reread.  And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need.  And when I am unsure, and it just doesn’t sound right.  I wait.  Just like I advise people to think before they speak, “Is it true? Is it kind?  Is it necessary?”  I try to think before I publish.  So last night I sat wrestling with this.  And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.”  “I’ve never seen that before.”  “Typically…”  And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist.  Meghan felt something in the back of her mouth.  An X-ray revealed an impacted wisdom tooth.  She’ll be 12 next month.  The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm.  Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

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This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy.  Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density.  My next phone call needs to be to the vascular surgeon.  He had some success with the right leg in February.  The left leg is in dire need now.  That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk.  Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year.  They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser.  We’ve got some neat ideas.  It passes the time.

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For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,”  and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age.  One day we will take her to California for the Global Genes Advocacy Summit.  One day her vision of a denim ribbon necklace will come to fruition.  One day.  But not this year.  Because this year I am trying to schedule vascular surgery that weekend.  Because we have to prioritize.  Right?

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I have set some fitness goals this summer.  I am setting a 10,000 step a day minimum.  I am aiming for at least 5 miles a day.  My dog is in the cross-fire of this goal.  She is my walking partner.  Because she likes to walk – but maybe not quite that far- and she can’t really say no.

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I am always struck by the ironies in life.  I am stronger than I have been in years.  In many ways I am healthier.  I have found Isagenix, and I feel better.  Stronger.  More resilient. More able to cope with life’s obstacles.

Which is good.  Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes.  And many of us feel that way most of the time.  But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids.  I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either.  Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age.  I have lots and lots of people I like, but not too many friends to get together with.  Sometimes I wonder what it would be like to just get together.  And chat.  Maybe over lunch, or dinner, or drinks.  Or maybe have a barbecue, or even a night with other couples.  Where everyone socializes.  And no one is overly worried about anything.  But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating.  The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with.  And I get it.  And it doesn’t make me mad.  Because it is what it needs to be right now.  And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that.  What I write here is a simple representation of facts that are.  They just are.  And maybe one day they won’t be.  But, I have already learned not to wish life away, not even the uncomfortable parts.

stand alone

But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom.  I crave careless, schedule free days.  I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere.  Somewhere with an end I can not see.  There are stops along the way to make us stronger, wiser, and more patient.  There are lessons on empathy and compassion to be learned.  There are experiences that will turn us into the people we were meant to be.  The road is long and winding.  Sometimes the climb is tough.  But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost.  The song from Pippin had been in my head all day, resurrected from memories of ages ago.  Yet, I couldn’t shake it.  Where do I go?

This morning Meghan was well.  She woke up well, and early enough to make a two-hour morning swim practice, which she completed.  I had time to walk a few miles near the pool.  The sun was beautiful, and the air wasn’t quite that warm yet.  There were birds singing happily, and flowers to appreciate.

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After swim we made it to church.  It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give – 

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us.  The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ.  Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.  

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts.  As I chose mine my eyes were full of tears.  Not of sadness for those people, but of the promise that they are also enveloped in the love of God.  My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water.  And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

Bear-Ye

I am not “UP” by my doing at all.  I treat my body well.  I treat my mind well.  And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God.  That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

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.