Forever…

When I married my husband I committed to forever.  It was a good call.

When we decided to have a child, we understood she would be our baby forever.  No regrets.

forever

But some time in the fall of 2011 a doctor diagnosed both of us with a rare genetic disorder.  This forever, well, this one we did NOT sign up for.

At first there was no time to process the concept of forever as it connected to Cowden’s Syndrome.  There was too much to do.

Neither of us had an “easy” medical history, so putting a name on it had its pros and cons.  But, we were handed lists of appointments to make and things that suddenly needed immediate attention.  We were quickly schooled on tumor growth and cancer risks.  We were told to remain vigilant, and that we would be “fine”.

Stay Alert

There was no time to process as 2012 had a traumatic thyroid biopsy in January and an embolization for her Arteriovenous Malformation (AVM) in her knee in February.  Then, there was my double mastectomy and my “surprise” cancer diagnosis in March, followed too closely by my hysterectomy in May.  And soon after that hysterectomy, Meghan had breast, pelvic and kidney and bladder sonograms.  There was also another MRI of the knee, and two thyroid ultrasounds that brought in 2013 with a surgical thyroid biopsy.

2012 was salvaged largely by a third grade teacher who I swear was an angel placed in our path.  Because there was real life too.  There was work, and school, and activities, and appointments that were quickly starting to overwhelm.

There was probably close to 2 years after the initial diagnosis before I even looked up.  And, when I did I had a whole host of emotions.

Forever had taken quite a toll on my girl.  Tough as nails.  Driven.  Strong.  Focused.  Always.  But, apprehensive, concerned and full of worry she was way too young to have to shoulder.

Forever.  I did my best to keep as much “normal” as I could.  Early therapists cautioned not to let the disease “define” us.  I kept the schedule delicately balanced between the necessary medical screenings and the “fun” activities.  She needed to be “like everyone else”.  So there was swim, later theater, some voice lessons, all interspersed with surgeries too many to recount again.  Some traumatizing, some annoying, some isolating, and some worrisome.  All time-consuming.  Some required physical rehabilitation, and others emotional.

busy-calendar-2

Forever.  The highway became our bonding place.  She could read and do some homework in the car.  We scheduled appointments on holidays as often as we could.  We scheduled appointments after school.  It made for some long days- often traveling 2 hours each way, and waiting forever in the offices- but we did it to preserve school attendance, and to keep her at as many activities as we could.

Forever.  She grew up.  Not just physically, but mentally.  She has broad shoulders, literally from hours of butterfly, and metaphorically from carrying way more than she should at her age.  The knowledge that this is her forever is difficult for all of us.  We make the best of it.  We talk about how grateful we are to know what to look for.  But, that gratitude, while sincere, can never replace the innocence of youth.  Innocence lost.  Forever.

Forever.  The wait time at most appointments is close to forever.  No one typically knows what to say to us.  They look at what they need to.  They offer some empathy, sometimes.  Then, sometimes out loud, and sometimes in their heads, they show gratitude that they are not fully responsible for us.  We wait hours and hours so often.  We have learned patience.  We have learned to quietly accept that if they “google” us before, it means they actually care.  We are rare.  We are 1 in 200,000.  This diagnosis is forever.

late doctor

This summer we have already gone to our 16th appointment between us.  There are 4 more just next week.

Yet, this summer she performed with a wonderful, talented, warm and welcoming group of young people at Staten Island Children’s Theater Inc. in a production of “Legally Blonde Jr.”  They like her.  Some of them know what she does with the rest of her life, and others don’t, and it’s all okay there.  They give me hope that some people, teenage people and adults as well,  are just good people.

She has been at swim practice most mornings between 6:15 and 8:15.  She has spent this week in small group lessons for swim from 8:30-3.

She has accomplished a good deal of her summer work for school.  She had peppered in the appointments in the crevices hidden in the schedule.

Forever.  The reality is not lost.  But, I am so proud.  So proud of how hard she works to stay in this world, while living in the world of chronic pain and rare disease.  It is hard work.  She does it pretty gracefully most days.

Forever.  Perhaps I could use a lesson or two from her.

Somewhere in the midst of this medical whirlwind we live.  Somewhere in the midst of working full-time, and managing surgeries and appointments, and life as it happens to all of us, I have lost track of myself.

lost

Forever.  I have one speed.  I operate in constant motion, or I am asleep.  There is rarely any middle.  The yellow legal pad is to the right of my computer, capturing every thought.  The iPhone calendar alerts me to the plans of the day.  My house, although not as clean as I’d like it, is in constantly good order.  It is a control issue.  I will own it.  There is so much flashing by in the blink of an eye, I can be sure to get the dog fur off the floor once a day, and know that it actually got done.

Forever.  I’ve lost touch with most of my friends.  Life is busy, theirs and ours.  There are only so many times you can tell the same story to people.  Our story could be recorded.  It just repeats itself.  Doctor, testing, surgery, follow-up, rehabilitation, next body part, routine appointment, maintenance, worry about a potential problem, 6 months to watch it…  I used to have other things to talk about.  Now I would be one of those people I used to laugh at on night-time TV.  I am so out of touch with the world.  My experiences are significant, but without variety.  They are heavy and too much for most people to hear.  There are no answers.

Take-time-to-enjoy-where-we-are

Forever.  The summer will pass.  We will force in a vacation and we will hold those days to be without doctors, and without summer assignments.  Then, we will do our best to put our feet in sand once.  Just to listen to the water.  We will try to get a few people to swim in our pool, so the activities of opening and closing it are not totally futile.

Forever.  Life is busy.  Too busy.  And that’s not just a Cowden’s Syndrome thing.  I heard of three deaths this week.  All three tragic.  One at age 19, one at 31, and another a bit older.  Tragedy.  They had plans.  They did not think their forever was going to end this week.

Forever.  My conscious mind doesn’t need but a split second to list dozens of real and significant blessings.  There are countless things in my life that bring me to my knees in gratitude.  But, the inner conflict is strong.  With the knowledge of the wonder and beauty in my life, I should be able to take this diagnosis, this “Forever” that is Cowden’s Syndrome, and put it in its place.

Forever.  The struggle is real.

Forever.  Stopping to find the moment, and to embrace the joy right now is not as easy as it sounds.  I can talk the talk better than anyone.  The raw truth is that I can not always walk the walk.

Our Cowden’s sisters and brothers span the globe.  Estimates are about 1,800 of us are in the United States.  I do not know the world numbers.  I know some of the people though.  One in Australia just underwent 2 MORE brain surgeries a few weeks ago.  Another, a teen who is with her Mom in Cleveland right now is waiting for news that is surely churning mom’s heart.

Forever.  It’s such an arbitrary concept sometimes.  I became a wife with the intent of forever in my heart.  I became a mother with that same intention.  But Cowden’s Syndrome threw forever at us.  It’s got the same dictionary definition, but not the same feel.

Someone asked me recently why I can’t just take time off, or block my appointments so we have “breaks”.  The truth is, I try.  Doctors want what they want in terms of follow-up, and being vigilant means I need to comply.  Most visits run us a minimum of 4 hours round trip.  Many can not be “stacked”.  I have a full-time job.  I have a high school honor student.  We need to be at work and school.  I suspect those who ask are just trying to help.  But, it makes me feel like maybe if I just tried harder…

waiting doctor

Forever.

It took me 7 weeks to write this post.  My attention span is not what it used to be.  I have a whole lot of reasons to keep making this work.  Forever.  I am blessed.  I am grateful.  I am tired.  I am human.

This blog was started in hopes that people stumbling upon it would read the story of a real family, fighting the same thing they are.  With that comes real, raw, and honest emotion.

Forever is beautiful when you connect it to things you signed up for.

Forever is not so easy when it connects to a rare disease that wants to grow things throughout your body.

Forever.  It is promised to none of us, that forever will last longer than today.  It is our decision what we do with the gift of the time we have.

I am a work in progress.  I am a wife.  I am a mother.  I am a survivor.  I am worth the hard work.

Today I will start by opening all the blinds.  Time to look at the sunshine.  Time to look at the blue sky and the flowers.  Time to breathe. In and out.

One step at a time.

We  will remain

#beatingcowdens

Forever.

 

 

 

 

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.

hypervigilant1

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!

Forever- it’s all about perspective!

Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation.  New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.

Schoolbooks

Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.)  Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.

There are some people she misses from her old school.  There are some people I miss.  There are circumstances neither of us miss at all.

This wasn’t the plan.  But really, as I keep learning – we don’t actually get to plan everything.

Learning experiences.   That’s what they are.

positive attitude

You never really know what tomorrow will bring.

Make the most of what you have where you are.

Trust your heart and your gut.  If it feels broken, it probably is.

Reduce your stress.  Eliminate toxins.  Its good for the body, mind and soul.

let go of the toxic

No experience is wasted.  No interaction is a loss.  People come in and out of our lives, some for a season, some for longer – but always for a reason.

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

And now there is summer.

Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.

Thursday we visit Sloan Kettering again.  Time for the thyroid sonogram.  How could six months go so fast?  And as the appointment closes in she starts to articulate her fears.  They are the same as mine.  I should know that she is smart enough to process.  To understand that they are looking for thyroid cancer.

On Friday we see the vascular surgeon for a follow up, and then a genetics follow up.  Meghan loves to visit the geneticist.  She says, quite correctly, that he saved both of our lives.  I remind her that she saved mine.  She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.”  Ever wonder what it feels like to be sat on by the ‘elephant in the room?’  Well, as I gasp for breath – speechless, I give her a hug.  No empty promises to offer.  I can’t.  I won’t.  She would see right through them anyway.

This is our life.  This is how our summer begins, and between the two of us, it doesn’t really let up.  There is little time for camp, or beaches.  We will sneak in a few play dates.  We will get away for a few days in August.  She will read a few great books.  We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.

This – this is why we need a life free of toxins.

This is why we eliminate unnecessary stress.

Cowden’s Syndrome carries enough stress of its own.

Persistence Dog

You see this will be our life – forever.  And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.

Forever.

Forever is a long crazy concept.  Forever – while trying not to plan too much.  Forever.

Forever has this awful way of disappearing sometimes.

I used to think Pop’s vegetable garden would be around forever.

GiGi and Pop
GiGi and Pop

Well, actually I guess it is.  I just grow it for him at my house now.

Forever.  It’s all about perspective.

character

I Can’t Fix It

I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants

It’s not as easy as baking a special treat, or giving some extra hugs. 

I can’t fix it.  And it’s going to be here forever.

A little over a year ago we knew nothing of Cowden’s Syndrome.  We knew we had a smart, funny little girl with lots of medical issues.  We knew we were stumping the best of the best doctors.  We knew we were getting by.

And then they figured it out.  And the world started spinning out of control.  Just over a year ago, I got my diagnosis too.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

“Love You Forever” is one of my all time favorite stories.

I guess it hit me hardest today.  I never know when reality is going to come at me like a two by four.  But, today it did a number on me.

We went to the orthodontist for her monthly visit.  It has been just over 4 weeks since the braces went on.  She has been a trooper.  Mature as anything.  Careful.  Diligent.  Typical Meghan.  And yet, the gums are starting to overtake the braces.  It’s almost unreal to watch.  We brush – often together.  With an expensive fancy toothbrush.  I help her floss, and still they grow.

We were both a little worried that the orthodontist would yell at her.  Reprimand her for poor hygiene.  But, he was great.  I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan.   We have been with the office 2 years, and he knows her gums are “extremely reactive.”  So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.

But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.

Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.

Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth.  I will never forget it.  They kept her awake.  Gave her (not nearly enough) Valium, and I had to hold her as they burned it off. 

Apparently I am not the only one who will never forget it.  She was beside herself when we left the office, and remained on edge all night.  She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.

I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.”  To which she, in her most grown up voice said, “I know you are, and it’s not your fault.  But you can’t fix it.  You can’t fix me.  No one can.”

At that point trying to reassure her that she wasn’t broken would have been pointless.

I let her go.  She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.

He shoulders seemed a little heavier.  More of the weight of the world on my baby.  I can’t fix it.  I can’t do anything to stop the firestorm that will come our way in the next decades.  I can only be vigilant.  And hold her hand.  And love her. 

 Oh, how I love her.