Experience Dictates Your Reality

I usually have a plan when I sit down to write.  Typically there is a topic, or a concept in my mind or on my heart.  But, as is clearly evident by the two months of silence on this page, I’m struggling.

Having a PTEN Mutation, and being the mom of a young lady with a PTEN Mutation of her own has been nothing short of life-changing.  Things that happen in our lives change the course of our travel along the path.  That statement is not even intended as a judgment, just a factual statement that most people can relate to.

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Sometimes when we are talking in the car, my girl and I play the game of “what if?”  It can be a dangerous game, or it can be cathartic.  For us it is typically the latter.  No matter how many ways we can come up with that things “would have” or “could have” happened, we are always sure that we have become who we are because of the turns our road has taken.  And, on most days, we like ourselves.

Experience does dictate your reality, though.

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Two or three people observing the same thing will interpret it to some extent based on the experiences that have brought them to this point in their lives.  That is neither a bad thing or a good one.  It simply is.  And to understand each other as humans, it is something we need to recognize.

One of Meghan’s Christmas gifts was a T shirt that says “Humankind- be both”

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It was chosen for her deliberately because it is something she believes and aspires to.  being in a high school experience where she meets many young adults from a variety of life circumstances, she is developing an even deeper understanding of the situations in our lives that create who we are.  She is happy there.  She is accepted there.  Life stories are understood, and often unspoken.

Where we have been, what we have seen, and what we do with those experiences are such an integral part of our lives.  Many of them we can control consciously and fully, while others take a lot more work to harness.  The hardest things to get control of lie deep in our own hearts and heads.

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The day after Christmas we made the gut-wrenching decision to put down our Lucky girl, a lab/ border collie mix that had been a part of our family since Christmas in 2005.  There was sparsely a memory Meghan had that did not include Lucky.  And the absence of the clicking of her paws and her animated noises leave our house a way too quiet.

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We have our beautiful April, a mutt rescued very quickly after our beloved Allie passed away in December of 2014.  Lucky needed April to distract her from her own broken heart.  And she did an outstanding job.  April is finding herself now, as an “only” while we all navigate through a new phase of life with one dog.

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If you have lost a pet you understand the gravity of the loss and how it changes the dynamic of the family.  If you have not, you’ll have to trust me.  Or not.  It’s up to you.

Three of us, well four if you count April, are grieving Lucky’s loss.  Yet, we are all doing it differently.  Lucky lived here, but she was Meghan’s dog.  She came in to our lives when Meghan was only 2.  Experiences were different for all of us, yet the depth of the loss runs deep.

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Experience and personal reality are intimately connected.

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Almost two weeks ago I fell at work.  Hard.  It was so frustratingly avoidable.  I caught my foot on a child’s chair.  My brain and my feet were not communicating.  There was nothing to break my fall except my shoulder as it hit the base of another chair.

I stayed on the floor for a few moments trying to recover.  Looking up at the faces of 30 third graders gasping “Are you OK?” I knew it was essential that I at least look the part rather quickly.  I got myself to my feet, mumbled an independent assignment for them and got to the phone to get some help.

After completing paperwork and gathering some ice, I was sent out to seek medical attention.  After spending a few hours having x-rays of a foot, two knees and a shoulder, I was sent home to ice and rest.  I was also told to contact my plastic surgeon.

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No it was not a disfiguring fall, except part of what broke the fall was also the right breast implant.  The one just under the still slightly off-color shoulder.  It felt very “off” and it was impossible to ascertain whether the fall had somehow caused the implant to rupture.  I needed an MRI.

I could not get any associate of my surgeon to physically see me.  The fall was on a Tuesday, and my doctor ONLY sees patients on Monday.  So I was left to schedule the MRI and wonder.

The looming appointment was not nearly as bothersome as the wonder.

People fall every day.  Depending on age, physical fitness, the circumstances of the fall, they will all have a different reaction. If you have a PTEN Mutation, which led to a breast cancer diagnosis and a double mastectomy at the age of 38, and that double mastectomy was followed by silicone implants, which already had to be replaced in 2016, and you fall on and near one of the implants from a height of about 5 foot 7, well your reaction might very well be to worry about that implant.  Mine was.

I just wanted someone to look at it.  I wanted someone to tell me the visible changes were not to be worried about.  But, no one would do that.  So I was left alone, home healing, with full access to the internet.

DANGER.

While I have learned a good deal of what I know about my body and Meghan’s through skillful sorting through ‘fake’ and ‘real’ information, equally available on the internet, I now had plenty of time to investigate what had been a mention weeks earlier in one of my on-line support groups.

Breast implant associated anaplastic large cell lymphoma, or (BIA-ALCL) is something I never heard of until it was brought up in discussion by another patient with Cowden’s Syndrome.  I now had all the time in the world to fully investigate and I was getting furious.  While I do not put my faith fully in any source, I will link in FDA pages here.  A careful eye will notice that most links when searching this condition are plastic surgeon sponsored.

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm239995.htm

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm064106.htm

For those of you interested, clicking the links above is likely to give you information you never heard before.  Unless maybe your surgeon was much more forthcoming than mine.

I was relieved to learn I had the “smooth” textured implants, the ones least likely to lead to BIA-ALCL.  I was disturbed to read the FDA recommendation the implants be evaluated via MRI 3 years after initial surgery and every 2 years after.  No one had ever mentioned an MRI to me post mastectomy.  Ever.  But that shouldn’t be a surprise.  A complete search of all my paperwork from the initial implant surgery and the revision failed to uncover ANY documentation of ANY potential additional cancer risk.  Being diagnosed with a condition that had greatly increased my likelihood of so many cancers, I may have thought things through differently.  Maybe I would not have.  But regardless I would have felt as though I had made informed decisions.

Now I was just mad, hurt, and violated.

And, I was dealing with a trauma to the area surrounding this foreign object in my body, causing visible swelling, with no one to calm my angst.

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By the time I got the call post-MRI that there was no rupture, I also read the report that said basically nothing other than the stability of the implant was evaluated.  A wordy disclaimer.

Risk of BIA-ALCL is rare.  There is no documentation as to whether our subgroup is any more affected.

It doesn’t matter anymore.  I will at some point in the not so distant future move to have these objects removed.  “Superfluous tissue” is what my mom called her breasts 22 years ago when they were removed.  She never had implants.  She’ll be 70 next month and is feisty as a firecracker.

I think I found my motivation to stay thin and spry.

Our experiences influence our reality.  All this from an unfortunate fall.  Even as I sit here almost 2 weeks later, the pain in my foot telling me I’m not sure there is not an un- diagnosed fracture there, I have to wonder if that fall was that unfortunate after all.

I decided finally on a primary care practice.  I stopped looking for one who knew or cared to know anything about Cowden’s Syndrome.  Instead I found one capable of screening me for the things any 45 year old needs to be screened for.  I think I may finally be at peace with that decision.  I had “well-visit” bloodwork Saturday, and I will have my visit with the staff’s FNP on Wednesday. I will talk to her about my basic asthma and allergy medications, as well as the script I usually hold for occasional migraines.  I suspect all that will go well.

Then I will talk to her about the fluid in my right ear.  The fluid that has been there for at least 5 months.  An ear ache in early September brought me to urgent care.  That repeated 3 more times, in October, November and December.  Each time there was an antibiotic.  Once there was a referral to a sub-par ENT who have me a steroid.  Sometimes the fluid leaks out of my ear while I sleep.  Sometimes I swear its finding it’s way out of my eyes.

My mother has terrible sinus problems.  She has since she’s been my age.  It’s probably rotten genetics not PTEN related.  Mucinex keeps me away from infection and eliminates the pressure for 4 or 5 hours at a time.  But this many months of Mucinex has a tendency to make the spleen angry.  And I don’t want to get sidetracked talking about those splenic lymphangiomas.

I want an MRI of the sinuses.  I want to know nothing sinister is going on.  Then I want to see the ENT who did the surgery to save my voice 2 years ago.  I’m hoping we can get that process started on Wednesday.

The calendar is foreboding.  We are heading into a doctor cycle – both of us.  And while I am grateful for the lull, I get familiar feelings of anxiety and dread as I lock the long afternoons in traffic into the calendar.

My daughter has the formal diagnosis of Post Traumatic Stress Disorder secondary to medical trauma.  There are people who like to pass judgment on that.  I wish they wouldn’t.

Her service dog will come eventually.  People will have a lot to say then too.  I won’t notice because I will be exuding gratitude at all times.

Everyone you meet is fighting a battle you know nothing about.  Be kind always.

The struggle is real.

Experience dictates your reality.

The trick is to realize while everyone leads a different life, that reality is the same for all.

Humankind – be both.

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#beatingcowdens

 

 

 

 

 

 

Justifying Our Existence

There was a post that showed up in my news feed this week from http://www.themighty.com.  Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

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As I write, school ended for the summer 9 days ago.  In those 9 days we have seen 4 doctors between us.  There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age.  Of course, the wear and tear on her body, even after only 3 days is evident.  She struggles with pain so badly.  On her feet, determined to fit in.  Determined for me not to say too much.  Sometimes I have to let her go.  I have to let her try.  I have to let her decide.  But, it hurts.  It hurts her, and it destroys me to watch her battle with her body.  I watch her put that game face on in the AM, and not take it off until after swim practice follows camp.  No one will ever tell me she is anything but driven.  But, no one would ever know to watch her…

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Usually by this point in the summer my work bag is unpacked, washed and tucked away.  Often my lesson plans for September are mostly framed out.  I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer.  I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors.  I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance.  I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do.  I’ll wait until I meet him to elaborate on that…  Sometimes, although not often, I do feel like this…

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I can often count on 4 hours minimum round trip for the 10 mile trek.  Never mind the cost.  We just don’t even add it up.  Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors.  Except it’s not covered at all.  $16,000 they said.  I, who denies my child nothing politely said, “we’ll find another way”.  And we will.  Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd.  I simply want to know what date to leave free for the follow-up.  I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water.  I also asked for the pathology from her December procedure.  For about the 8th time.  Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own.  The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat.  We count our blessings regularly.  We know it could be worse.  We know the anguish others suffer far surpasses our daily struggles.  But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional.  The struggle is real.  Whether we like to admit it or not.

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I reached out to our genetecist this week.  Darling man said he would always help, and didn’t want us to waste a trip on him.  I told him I was having trouble with my voice.  I’ve been getting very hoarse for 8 weeks or so.  No infection.  Three allergy meds on board.  But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too.  And I have a history in the neck.  A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993.  Both removed.  Both benign. But…

He referred me to a head and neck surgeon.  I finally mustered up the courage to block out at least one more day of summer, and call for an appointment.  I was met with the inquisition on the phone.  I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both.  C-O-W-D-E-N Syndrome.  A mutation on the PTEN gene that causes benign and malignant tumor growth.  I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have?  He will want a report, a CD, something…”

Sigh.  I just don’t have the fight in me today. “Ok, you win.   I’ll find someone else.”

“Come back to him when you have a diagnosis.”

 

Whatever.  Just whatever.  Sometimes I get a little tired.

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Thats when I shake it off with a quick walk.

I emailed the genetecist back.  I’ll wait.  Again.

I have this pool in my backyard.  And plenty of people I’d like to reconnect with.  And some lessons I’d like off my plate.  And a book I’d like to read.

I’ll get there.  In the mean time, I’ll be at my computer.  Emailing.  Arguing.  Advocating. Communicating.  Researching.  Justifying my existence, and

 

#Beatingcowdens with whatever it takes.

Appreciating the Rainbow AND the Storm

Let’s be real.  Plain.  Honest.  Real.

Sometimes we all want to throw our hands up.  Sometimes we want to quit.  Sometimes we want to hide in the closet or under the table alone.  For a long time.  Because EVERYONE HAS SOMETHING….

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No one’s life is easy.  The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house.  Some days I am sad and overwhelmed.  Some days I even cry, like here (http://wp.me/p2qi4v-10g)

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But, the rule is about 15 minutes.  I am allowed to have a pity party for about 15 minutes.  (Sometimes that 15 minutes happens again, and again – but not usually.)  Because then, I have to put on my big girl panties and make it work.

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We play a lot of games of perspective here.  We work on looking at things another way.  “Flipping it…”  so to speak, to try to get through.

The end of school is a crazy time for us.  It’s supposed to be a time to rest, and unwind.  But, really,  it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July.  This way if anyone needs anything else there is time before school starts again.  The other cycle is distributed around February vacation and school holidays.  The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives.  There is a good deal of “Go, go, go…”

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Despite our occasional “preteen issues”  my daughter is insanely easy to please.  She wants to swim.  She wants to act.  She wants to read.  She wants to watch tv.  She wants to socialize with children  preteens who are nice to be around.  She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit.  In the car.  On the BQE.  On the LIE.  In the waiting room.  In the exam room.  Over, and over and over.  Yet, still she handles it gracefully.  She packs her own bag with a variety of things to occupy her time, and some snacks too.  She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get.  So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone.  Meghan was tucked away at camp.  Happy as could be.

I sat in the car, alone.  The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

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I noticed today I was very calm.  This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful.  But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

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We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well.  We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.”  A comment that always makes me smile.

Some people like to use the word “blessed.”  I have some trouble with that.  If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

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Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude.  There is ALWAYS something to be thankful for.  For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,”  for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

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Dear Cowden’s Syndrome,

I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011.  Actually it wasn’t even a proper introduction.  It was more like, “I’m here.  I’m staying.  What are you going to do about it?”  In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body.  And you know what?  I could have kept quiet about things.  I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign.  But, you crossed a line.  You messed with my girl.

I went all those years not knowing.  I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand.  But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.

So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive.  Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning.  I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met.  And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.

That entire first year I was sure we had lost our very existence to the routine screenings you require.  A doctor for every body part, and a pediatric and an adult version of each no less.  Scheduling was a nightmare.  It’s a wonder I kept my job and my sanity.  And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed.  She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you.  Now there was this road ahead that was just flat out exhausting.  There were worries heaped upon worries.  And it got old real fast.

Our friends have tried to hang with us.  And they are an incredible lot.  But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.”  Understandably, many of them have had to pull back.  Their own lives are busy.  Things continue, and just because you want to have your way with us, the world can’t stop spinning.  We miss socializing.  We miss casual get-togethers.  It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.

Let’s talk about that for a minute.  Let’s talk about the pain.  The unforgiving knee pain that affects every aspect of her life.  Let’s talk about having to quit soccer in 1st grade, and dance 2 years later.  Let’s talk about her desire to run track that can never ever be.  Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.

The knee!  The right knee.  The one that has hurt since birth.  The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations.  Until they learned of you.  You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis.  You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed.  You would be the reason we are awaiting a 6th surgery on the knee.  This one with the orthopedist and the interventional cardiologist at the same time.  One will assess the damage from all this blood, and the other will have another go at this AVM.

The AVM.  The likely reason the feet are now a size and a half apart.  Continuing to make life easy for my girl aren’t you?

And while we’re at it, let’s talk about the thyroid.  The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision.  We beat you.  We got it out in time.  But, it was real close, and I didn’t like it one bit.  And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve.  The endocrinologist is confused.  He offers no explanation as to why it’s not ok.  They offer me no answers about the effects on the body.  Because they don’t know.  You’ve kept them confused, and it’s wearing on my nerves.

But, you know what?  You won’t win.  Not here.  Not in this house.  Not with my daughter and I fighting you every step of the way.  We like to call ourselves “Beatingcowdens,” because we are.  And we will continue to.

See, you messed with the wrong women here.

After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little.  There are so many.  But, they don’t OWN us.  Plus, I went on ahead of you and got some things removed.  That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…”  well, that was a HUGE win.  And the hysterectomy before the uterine polyp could change its mind from benign to malignant.  Winning.

My daughter has decided to become an advocate for rare diseases.  Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee.  It started with some business cards that explain what Cowden’s Syndrome is.  It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.

She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.”  She had a friend make a denim ribbon necklace.  And “identity piece” for her.  She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.

She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013.  She carries hope that one day their work will affect change directly in our lives.

She met up with friends through my online connections.  She corresponds with Colorado and Australia.

In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities.  Over 150 people attended that event.  Community support was overwhelming.

Oh, and the heart of an athlete you tried to take from her… you lost there too.  She is a swimmer now.  And this year she qualified for Silver Championships in the 100 butterfly for her age group.

So, despite what you may have tried to do to our lives, you are losing terribly.  You are something we will have to deal with for the rest of our lives, but you will NEVER own us.  You may try to be pushy. You may be downright rude, hurtful and insensitive at times.  But, that’s OK.  We’ve handled worse than you, and we’ve come out just fine.

As a matter of fact, maybe I should say thank you.  Thank you for lighting the fire in our bellies.  Thank you for helping us find our self-confidence.  Thank you for giving us the fight that forces us to never ever give up.  Thank you for teaching us that we can make a difference.  Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.

You’re not the boss of us.

Forever we remain,

BEATINGCOWDENS!

Lori & Meghan

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RFTC 2013B

The Speed of Life

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I am always amazed by the speed of life.

I don’t know why at this point I’m not used to it yet.  But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find it hard to imagine it hasn’t been quite a week since “Jeans for Rare Genes” took place.

Rare Disease Day Fundraiser

Acknowledgements have been sent by Email.  Some are waiting for the mail, and others will be delivered to the local businesses that supported us in the next few days.  We wanted everyone to know that what we considered a lofty goal of $10,000 to be donated to the PTEN Hamartoma Tumor Syndrome Foundation, and The Global Genes Project has been surpassed.  The checks are still being counted, and the final payment from eventbrite is due any moment.  But it looks like the total will clear $12,000 before we are through.  Not too shabby for the vision of a feisty 11-year-old who has already begun to make tentative plans for what we will do even better “next year.”

PTEN logo global genes logo

And as I’ve digested the success, and have processed the overwhelming pride of a mother, and expressed our gratitude to family and friends near and far, (like the Yokleys from Colorado!)  I’ve taken some time to reflect.  Standing before a room filled with 150 of our friends and family on a bitter cold February morning left my insides warm and toasty from the love surrounding us.

Life moves quickly.  For all of us for different reasons.  But, with this syndrome x2 life seems to be literally swallowed by doctors, and tests and surgeries, with every spare moment trying to shove “normal” into the cracks.  We miss stuff.  A lot.  We miss friends, and gatherings and social events, and celebrations, and ordinary get-togethers.  We are absent more than we are present.  Our friends and extended family are often neglected as immediate family has to occupy any moment that isn’t already full.  I don’t actually remember the last time we had friends for pizza, or a casual summer gathering on the deck by the pool.

And I think about the pure innocence and wisdom of Meghan and Connor, as they finally met.  Two friends from miles apart, with a life altering syndrome in common.  Two bright, funny kids who have seen more than their fair share.  Two kids who get compassion, and understanding, and life.  Two sets of parents, immediately at ease with each other because we understand.  And sometimes that’s all you need.  And if you missed the two articulate, wise beyond their years, kids talking to the local news – click here.

I think about Georgia, a world away in Australia, and how she and Meghan have hit it off in a way only girls who share such a bond ever could.  I think how wonderful it will be one day to get them together too.

And I think about Ashton, older than Meghan, but a girl on a mission all the same.  And I think of all she has to offer the world, as she endures her 14th procedure on a stubborn AV fistula in her brain this week.  I think about all the prayers we say, and all the questions Meghan asks.  And her Mom.  My peer.  A Cowden’s patient too.  A school teacher turned full-time mother later in life.  Because it was meant to be.  I think about the hours spent texting and messaging.  And how I already feel so comfortable…

And I know that the room was full for them too.

I am grateful beyond measure for the ones who understand.  Who don’t give up on us.  Who stand with us, beside us, behind us, or just about wherever we need them to be.

help from my friends

I will resolve to try to reach out more.  I just don’t know how many more hours I can squeeze out of a week.  But I will try.  Because the speed of life is astounding.

Sunday some of my college friends were delayed to the fundraiser.  They were in the hospital with one, as her father was very ill.  Yet, they found the balance.  They stayed with her, and then came to us.

Thursday as I came out of I think my 7th vascular procedure I got the texts on my phone that things weren’t good.  Her Dad passed away Thursday morning.  My heart hurt.  It was ironic really, as I had felt my own Dad ever-present as I got checked in and prepped.  I got to thinking that out of 5 of us from college that I really stay in touch with, three had already lost a father, and one a mother and a brother.  How did we get to this stage?  How did life move so fast?  And although my own recovery will keep me from making it to her side tomorrow, – I know she will feel the love in my heart.

friends uplifts-the-soul

We have to try to slow things down.  Sometimes.

But, I’m not sure when.  Or how.  Because yesterday I sat in the back seat with my heavily bandaged leg, and we made the trek to Cohen’s Children’s Hospital on Long Island.  And we saw an orthopedist about Meghan’s knee.  Her vascular surgeon suggested we go – before the next embolization procedure in her knee.

Her MRI shows some damage to the knee structure.  “Blood is a terrible irritant, even in small quantities…” And I would imagine that this AVM, probably active since birth, has been slowly eroding the knee.  So there is swelling in the bone marrow, and issues with the patella, and all sorts of explanations as to why it keeps hurting.  There is no real solution, but a synnovectomy will get him in the knee.  He can “clean out” some of the scar tissue, and we can pray that gives relief and doesn’t provoke a “hyper healing” Cowden’s type response.  But we have to try.  They have to see.  It’s time to get a real baseline.

So they will present her case next week.  And we will hope that the recommendation is for the vascular surgeon to do his work on the AVM at the same time the orthopedist does his work.  Because the recovery from the embolizations is tough.  This one promises to be outright nasty.  “At least a week on crutches.  Minimum 4-6 week recovery.  PT to build back the strength in the thigh muscle.”  They will fill the knee with saline to get a clear view…

So he asked about her activities, and approved of swimming.  Almost relieved when she told him she had given up soccer and dance because they hurt too much.  He asked what strokes in swimming, almost tentatively, as if he was hoping for the answer he got.

“Butterfly is my favorite!”

keep-calm-and-swim-butterfly

And he looked relieved as he explained to Felix and I that butterfly kick was best on the knees.  Meghan chimed in, “because you kick from your hips!”

We were once again impressed by her instincts and her depth of knowledge of her own body.  She gravitated to a stroke most hate because it probably hurt her the least.  We got the nod to let her continue freestyle and backstroke.  But breaststroke is off-limits.  Probably forever.  Ironically – she never like that one much anyway…

We asked about the timing of the procedure.  He thought before he spoke and told us he wanted to hear what his colleagues had to say.

We pressed him for early May.  The tail end of the CYO season.  The week after her first play, “Hairspray” at school.  He told us to take it very easy.  And if she doesn’t have another bleed before then, that’s probably a reasonable time frame.

“If… Probably…”

We should be used to all this by now.  But, I think you never get used to watching your child get beat up over and over again.  That’s why we pushed to try to plan… to try to squeeze in all the normal we can.  Because she can’t keep having the fun taken away for the medical.  It’s not ok.  But, we plan very tentatively.

The speed of life can be overwhelming.

Thankfully we have so many of you along for the ride.

Next Saturday, February 28th is World Rare Disease Day.

Next Sunday, March 1st is Meghan’s first championship swim meet.  Silvers.  For the 100 butterfly – naturally.

Speed-of-life-1024x537

It’s following me….

Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me.  I swear it mocks me.  Sometimes when I am not looking, and other times right in front of me.

In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.

The pile used to be in the basement.  But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.

Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.

paper_pile_on_desk

My office has been finished.  A bonus to me after Meghan’s big move upstairs.  I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.

Slowly I am beginning to decorate.  The curtains and blinds have arrived.  The printers are hooked up.  The electrician I love neatly hid the wires.

The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.

The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.

Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it,  and as I type I sit in his chair.

And, just to my left, as I work diligently to ignore it, sits the pile.  It found its way right into the new blue room with the gray curtains and white furniture.

I don’t like piles.

Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.

Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.

Despite how many hours I spend working on making it go away, I am at points close to losing hope.

There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me.  Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?

If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.

I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home.  I really do get it.  And I am trying to find a place where I can live happily somewhere in between.

I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single.  My husband works much farther from home than I do, and his day ends later.  End of story.  The afternoons are all mine.  And they work out just fine.  And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat.  Quickly.   Before I head out to whatever has the night tied up.  Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.

Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun.  And well, it explains why the pile – although tame at times, never seems to go away.

Yesterday I listened to a 2 hour webinar for a grant I got for work.  But I didn’t have work.  Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it.  And while I am excited to see their progress, I was not excited to be doing that.  Nope.  Not one bit.

And there was the grocery shopping, and the dusting, and the generalized dog fur removal.

And the list and the questions started going like mad in my head,

  1. The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
  2. I better confirm the date for our Rare Disease Day brunch in February before we lose it.
  3. How can I figure out how to set up online payment for that?  I really have to check.
  4. Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
  5. And the car needs an oil change and inspection.
  6. What about that car insurance lady who never called me back – got to get on her
  7. And the pictures from vacation – almost 2 months ago…
  8. The outside of the house needs a day all onto itself
  9. And the dogs need baths, badly
  10. What is the real reason Meghan’s foot X-ray looked like that?
  11. Why is one of her feet over 1/2 inch off in size from the other?
  12. What’s with the new knee pain?
  13. When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?”  Can she last swim season?
  14. Can she handle this schedule?  I mean without getting sick?  Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
  15. And when, WHEN, WHEN….will I finally visit with some friends?
  16. STOP………

My husband sat down with me on the other chair in the office.  The panic was beginning to escalate.

Take a breath.  You need a break.

A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????

pile of paper

Sometimes I find the notion of NOT getting things done maddening.  But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.

He knows I need to step away.  He knows I need to visit some long-lost friends.  He also knows I need to spend lots of time with people who aren’t quite well.  And, he knows I need to spend time with MY family.

So today, we went pumpkin and apple picking.

photo 2

A nice farm, about 45 minutes from home.  Just our speed.  The pumpkins were kind of “placed”  off their vines, but nice all the same.  The apples were fantastic, and the walking was almost reasonable.  For about 20 minutes.

The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing.  Walking. Repetitive motion.  Fractured foot, bone chip, or something way deeper?   At that point all that mattered was saving the day.  And there was Daddy.  And his cape.  As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders.  And they walked like that for an eternity.  Picking apples.  Chatting.  Laughing.

photo 4

 

photo 3

And she got down long enough for us to take a few pictures.

photo 5

Then, as we walked to the car the knee buckled and that was it.  Back up on the shoulders again.

And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!”  Took some of the tension out of my shoulders.

So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules.  And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.

I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.

And you know the best part of it?

The pile is still in exactly the same spot.  While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room.  I have to get in front of it to shift my focus to the things I enjoy, and I will get there…

Meghan had a nosebleed tonight.  A wicked one from the days of old.  And the knee never did bounce back.  She’s in our room.  Asleep with Felix.  There will be a spot for me once I have cleared my head.

My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace.  But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens.  This Syndrome does NOT own us.  It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.

Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.

Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.

photo 1

 

 

4 Doctors and a Dog Surgery

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer.  Knowing she was a good kid, she understood his meaning.  He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me.  Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again.  She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school.  Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall!
And yes they are all about the same age, mine’s just REALLY tall!

 

 

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake.  The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom.  I am grateful…

school closed

Meghan needed this morning.  As a matter of fact we needed it – so badly that I think even the rain knew.  And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while.  His angel wings are 7 months strong today.  I think we got a special favor.

angels

It’s hard to believe we’ve only been out of school for a week.  My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body.  We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet.  “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation.  Can you bring her today?”  All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped.  But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there.  It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction.  We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night.  And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

 

Ouch!
Ouch!

Wednesday another local visit, this time to the orthodontist.  And instead of getting the news that the braces are ready to come off, she left  with more rubberbands.  The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are.  Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4.  We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC.  A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her.  Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels.  We’ll get the labs on Monday.  Two more 6 weeks cycles for the levels to regulate.  Then we try something new.  12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid.  At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should.  When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be.  The thoughts that go through her head, the level of her vocabulary, her insight.  So much to absorb, so much maintenance.  She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen.  That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up.  That’s why she has to run as if she has no pain.  That’s when she gets to be a kid.

fun run 1

This was the worst of it – this week, for doctors.  This was my worst scheduling job by far.  On the 14th she has one and I have one.  Then on the 15th I have 4. (Genius!)  And after that things lighten up considerably.

This week I settled some paperwork that has been lingering.  I fought over medication with the pharmacy.  I began the process of organizing a few very chaotic things.

Today we got to see some family.  Meghan got to hug three great grandparents, two of which are in their mid 90s!  We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!