Wrong list…corrected and redirected!

It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.

The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.

And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.

It all just blurred in and we never properly celebrated that accomplishment.

Meg changed schools.  Well, twice now.

We changed churches.

And the car accident, and the back trauma.

The rotted bay window, and the pool with the hole in the liner.

The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.

I actually sat down to write a list at one point.  Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life.  I wanted a way to explain why I felt like I was existing, not living.  Why every weekend was faced with catching up, and why we were missing each other.  I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.

But this year has served up some intense wake up calls and I am trying to give them my full attention.  Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.

I am not trying to be morbid.  Quite the contrary actually.

It is that very realization that caused me to shred that list I was making.  It’s counterproductive to dwell.  We must press forward anyway.  So why stay stuck in the past?

lion-king-the-past

There is a point in your life where you have to stop.  And look around.  And focus on the blessings around you.  This paradigm shift, while far from perfected, is a work in progress.

We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills.  Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together

We have family.  And lots of it.  At 40 years old, I can boast 3 grandmothers and a grandfather.  I am becoming more aware each day of the depth of the value of those relationships.  In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own.   I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.

And sometimes it is within thoughts of those closest to us, that we remember what is the most important.

remember who you are

 

And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.

Early in my life, when things were jostled around and life was uncertain, they were there.  We lived in the first floor of their 2 family for the most formative years.  They fed us breakfast and met us after school.  They took us to sporting events and school activities while Mom worked 2 jobs.  They were just always THERE.

And Pop was there to fix things, and Grandma to play cards and cook with.

There were summers in Ocean City, New Jersey – the best summers of my life.

There was a whirlwind trip to Disney, and so many more adventures.

veterans day pop and gigi

I remember them as a young child, watching them.  They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.”  This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here.  Now.

And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.

And in my own house the woodwork.  The beautiful labor of love that is each piece of trim, each windowsill, each doorframe.  In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door.  He shared his craft with my husband, and did so with patience and ease.

So much of the last 40 years of my life revolve around Grandma and Pop.

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Never a task too difficult.  Never say no.  Always giving.  Always sharing.  Always loving.

When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.

Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation.  They lived through the Great Depression, and participated in World War II.  They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.

They built a family, my Mom and my Uncle, and the family branched out.

Pop worked in the Fire Department, and at Zion.  Grandma took care of everything else so that there was never a thing out of place.

During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere.  Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!

Times have changed and things slow down a bit.  But it’s still a huge highlight to stop in for a visit and chat.

And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.

All my life I remember them doing.  For everyone.  All the time.  They are the ultimate lesson in “pay it forward.”  They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry.  Regardless of the wording used, the sentiment is the same.  They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.

Love my Grandparents!

Love my Grandparents!

Christmas 2009

Christmas 2009

Grandma's 90th birthday on 2010

Grandma’s 90th birthday on 2010

At Pop's 90th birthday in 2009

At Pop’s 90th birthday in 2009

And even in the toughest hours, they make it look easy.

That is almost 69 years of marriage as God intended it.

There are so many things I share.  And there are some that just aren’t to be shared.  But make no mistake about this.

I’ve  learned how to be a better person, and a better Christian from my grandparents.  I learned how to be a better wife, from my grandparents.

This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents.  We learn different things from different people at every place in our lives.

But today, it’s about Grandma and Pop.  And how their selflessness and pure love never cease to amaze me.

I pray that though all adversity, my husband and I may set the same example for our daughter.

We are deeply, thoroughly, and completely blessed.

And when making lists its far best to make lists of your blessings than your struggles.

billy-graham-quote-our-days-are-numbered-one-of-the-primary-goals-in

 

 

Vascular Road Maps and other Cowden’s adventures…

I sometimes hate the saying that things work out the way they are supposed to.  Sometimes I just don’t buy it.  But, then there are other times.

I have suffered with varicose veins since I was in my early 20s.  I had 2 stripped surgically before I was 30  I had 5 VNUS closure procedures in 2011.

Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.

It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning.  During the day I get distracted.  And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger.  The swelling is evident.  The blue veins bulge.

Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help.  Last summer I bought shorts.  In a size 2.

 

This is not my leg - but a close comparison...

This is not my leg – but a close comparison…

This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.

As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome.  It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail.  See there are differences even within the PTEN mutations that link us all.  Some are germline mutations, some are frameshift, some are missense, others nonsense.  AND, there are further specific differences too complicated for me to process.  It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.

And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.

Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.

I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.

There was the sonogram.  The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities.  (You can read that as difficult to please.)  Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting.  The blood sits stagnant there.  That apparently is not the most intense of my issues.

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Then there was the visit with the doctor.  A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.

He asked if things got worse with the vein in my leg after the tubal ligation in 2011.

“You mean the hysterectomy?”

“No, that was the following year.”  He was reading from a sheet I had given him.  He was right.

I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.

“I’m not sure, why?”

“I am wondering what is causing these veins to turn.  And I have to look at every possibility.”  As he places his hand on my abdomen.

“How long had that pulsing been there?”

“Um… I don’t know.  (Feeling incredibly dumb for ignoring my body) Why?”

“Well, I won’t even consider surgery without some major tests.  First I want a full abdominal CT to check for vascular malformations.”

Now truth be told I wasn’t shocked to hear this.  I had a nagging, behind the ear voice telling me to get that pulsing checked out.  But I had met with a vascular surgeon in July and that turned train wreck.  So I was a bit delayed.  I also I guess didn’t really like the fact that he could feel the pulsing too.  I thought, well I thought that was just mine….

So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.

And as I tried to process that, I thought of everything.  I ran the gamut from aneurysm to AVM.

As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.

MY SPLEEN!

respectthespleen

I had never mentioned my spleen.  The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round.  I was told they are vascular.  I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.

I really hope they aren’t misbehaving.

I like my spleen.

spleen

I also like that this doctor cares enough to check everything out first.

Pain in the butt?  Absolutely.  Life-changing?  Maybe.

The other doctor was ready to take the vein out in the office with no prior testing.  This guy told me I need an ER and tons of pretesting.  You know what?  At least he takes things seriously.

So now I wait.  For authorization.  For testing.  For a whole host of inconvenient to schedules to processes.

And fortunately there isn’t much time to waste on worry.

Life is busy.  We squeeze what we need to into the crevices.

We can’t let Cowden’s Syndrome distract us from this life that needs living.

This one is a favorite of a dear internet friend :-)

This one is a favorite of a dear internet friend :-)

 

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

 

 

Soft Lock Downs and other things that shouldn’t be…

I spent the weekend with my college roommate.   She was the one I lived with the longest.  She was the one who introduced herself to me the first day.  She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday.  She learned how to drive in my Toyota.  We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with.  We gathered enough good dirt on each other to be sure we’d be friends forever.

friends-are-forever

The last time I saw her was in December.  She and her husband showed up at the wake for my Dad.

The time before that was when I made it out to the wake for her Mom.

Somehow we find each other…

And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes.  We cried, and hugged and pulled it together.  As the scene was replaying itself again.  But this time it was far worse.

College Graduation - 1995

College Graduation – 1995

It’s not right that we don’t see each other.  And it’s no one’s “fault.”  And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.

We stood together for a while, just the two of us.  Interrupted only by people trickling by.  We spoke about his fight.  His strength.  His battle.  I told her how much I respected all he did to fight.  I told her I was so privileged to have shared a few email exchanges after he took to this blog.

But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.

Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.

Her little brother had died.  Her “little” brother was little in age, not in height or spirit.  He had a presence about him 20 years ago when I greeted him in our dorm room.  When he spent time with us.  His charm, and sincerity, and personality resonated even then.

Her “little” brother was 36.  Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented.  He fought for his family, for his wife of 10 years, and for his two handsome young sons.  He fought out of zest and a love of life.  He fought for his siblings and his Dad.

780166Pancreatic_Cancer_Awareness

I remember when she and I spoke this summer.  I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier.  She asked how long it had been for my Dad, from the time he was diagnosed until the end.  And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…”  But, she had heard a number.  Just as I had when I had asked the question months earlier.

And I kept an eye on the calendar as I checked in on my friend.  And every day I thought of her.  I prayed often for her brother, and the family.

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Sunday came the text that he wouldn’t make the week.

Tuesday came the one that said he was no longer suffering.

Friday rolled into today, and we sat.  Side by side in a standing room only funeral parlor.  We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life.  And my favorite story of the day came when they said he went back to college after he had his boys.  And he got his Master’s Degree too.  Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class.  His spirit filled the room.  There was an abundance of support, and love.

And then we were at this backyard party at her brother’s house.  And to the naked eye it could have seemed like any end of summer gathering.  But it wasn’t.  People were eating, and sharing stories, and passing time together.  And two handsome blond boys ran about with their friends.

And then there will be tomorrow.  And this young woman, now a widow, will need to press on for her boys.  And those boys will slowly come to the realization that Daddy is never coming home.  And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.

36 years old.  Father of 2.  Dead from Pancreatic Cancer.  Illogical.  Incomprehensible.  Insidious, painful, horror show of a disease.  It just doesn’t make sense.

At all.

And there have been so many things that don’t make sense.  Ever.  They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.

I think it was Wednesday at work.

I had a first grade class.  And the loudspeaker went something like this, “This is a soft lock down drill.  Please take all proper steps.”

And just like that 28 first grade students instinctively went to the back corner of my room.  The stayed low and quiet as I shut the lights and the smart board and locked the door.  They got themselves out of sight of the glass window on my door.  And they sat.  Silently.  And I was stunned.  I think it was the 10th day of school.  They range from 5 to 6 years in age.  And they never moved.  They looked to me for a reassuring face.  I faked it.

Truth is as necessary as I know they are – I HATE those things.  And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it.  And I take it seriously.  And the reality that one day we COULD be a target of chaos doesn’t escape me.  But that doesn’t mean I have to LIKE it.  I don’t like that we need to scare the crap out of these little ones just in case.  They are growing up in a wild world.

So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square.  She gets things very quickly.  And she is stellar at context clues.  Dad’s in Times Square every day.

These kids are growing up in a tough world.  Grown up worries.  Grown up realities.  Young minds.  It’s so hard to make any sense of it at all.

And so when the ones who are supposed to help -just don’t, well that seems to make things worse.

In the middle of the renovations that swallowed the end of August, Meghan broke her foot.  A stress fracture to one of the superficial top bones.  I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement.  That was a Thursday night.  And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.”  Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.

meghan boot 2

And we brought the X-ray, and the report.  And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain.  So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.

So she began middle school days after getting her braces off, with this giant black boot on her leg.  And she plugged along for two weeks, and we got the X-ray repeated as we were told to.  So, when we returned to the office for the recheck we gave them the disk and the report.

There was some grumbling about the  radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.”  (Doctors should learn some moms have rabbit ears.)

So he came into the room after having had Meghan take off the boot.  There was a surgical resident in tow.

“How does the foot feel?”

Meghan, “Much better.”

“Great, there’s no evidence of fracture on the x-ray.  You must have healed.  Let’s transition you off the boot.”

meghan boot 1

Please know during this whole exchange he NEVER EXAMINED HER FOOT!

Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?”  Does that mean anything?”

“Well, it’s not causing her pain is it?”

Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on.  Could things being out of order in the foot trigger some of this?”

Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”

“Well does Cowden’s Syndrome cause bony overgrowth?”

Me, “You’re the doctor, I am asking you.”

“But you are far more familiar with the syndrome than I am.”

Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”

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http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=201 ( You may have to cut and paste the link)

(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research.  It took me less than 10 seconds to find.  It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)

“I don’t think so, but you should probably have a specialist look at that.  I don’t need to see her again.”

GOOOOOOOOOOD THIIIIING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot.  He has no idea what the problem really is.  What’s the point of wearing the boot?  I have to trust my own body cause they don’t know anything.  I think its healed and the boot is hurting my knee.”

Fair enough.

She’s the closest I have to a doctor, and the thing that has made the most sense all week.

When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.

Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack.  But the terrorist is cancer.

You get to live in fear, or live your life.

You get to try and make sense of things, or run with them anyway.

With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused.  To live life instead of hiding in a corner, or some days under the bed with the lights off…

So many things, so many tragedies will never make sense.

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But it’s less about making sense, and more about being sensible.  It’s about instinct.  And love, and compassion.  And cures.  I am a big fan of cures.

Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.

Say a prayer for those two little boys who will begin to know that Daddy is never coming home.

Say a prayer for a family who lost a 36 year old high quality man too soon.

And please.  In this world that makes no sense.  Do something logical. And kind.  For someone.  Cause we ALL need it.

 

Random Acts of Kindness

 

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With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease.  Fundraising for the organization is at an all-time high.  I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.

All this awareness raising got to me this week.  We donate what we can to our church, and various charities near to us, but this week I got reflective.  I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN.  My donations will not impact the world in an earth-shattering way, yet it felt good.

I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.

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Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around

But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS.  I think, it increased our awareness of humanity and other people’s struggles.

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A few days ago in Costco I had over estimated my strength.  And as I wondered how I would get the chair into the car, two gentlemen came from nowhere.  Different places I might add, to work together to fit the chair into my car.

Then I received a card in the mail.  It had a check enclosed for us the for a charity of our choice, or something fun.   The handwritten note told me that Meghan and my story was impacting at least one life.  The need to keep sharing was renewed.

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And I connected on Facebook to a man who we met in Disney last year.  He and his wife and Meghan struck up a conversation on a long bus ride.  He had a service dog.  She was enthralled.  She was raising awareness of Cowden’s Syndrome.  He tried several times to send me a link to a song that made him think of Meghan.  He was finally able to get it through.  I cried.  My little girl is making a difference and this man took the time to let us know.

http://www.reverbnation.com/mattshenk/song/1724919-if-my-tears-could-heal?fb_og_action=reverbnation_fb%3Aunknown&fb_og_object=reverbnation_fb%3Asong&utm_campaign=a_public_songs&utm_content=reverbnation_fb%3Asong&utm_medium=facebook_og&utm_source=reverbnation_fb%3Aunknown

In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl.  There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.

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None of these people could have known I was having a pretty tough time.  I don’t so well in chaos, and the house was absolutely upended.  In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.

Random acts of kindness.

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That’s why they matter.  So much.

We try to pay it forward as much as we can.  So special to be on the receiving end as well.

Whatever the cause.  Whatever the reason.  An increased awareness of others will make the world a better place.

Do something nice for no reason.  With no expectation of anything in return.  Just because.

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“A tranquil mind is not a little gift…”

Growing up I didn’t spend a lot of time with my father.  Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day.  We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15.  He loves me like his own, and has treated my as such, without fail, and in all things.  I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine.  He struggled to find his way, and to find the balance.  He married twice, and had three kids, then he spent 10+ years in a long relationship.  He lived all over.  He worked to add his charm and personality to nightclubs all over NY.  He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights.  We spent more time together.  He came to dance recitals and swim meets for Meghan.  He came to my house for gatherings, and just to be with us.  We liked having him around.  All of us.  Even the dogs.

I got to have two “Dads.”  While one is called Ken and one was called Dad, the terms are synonymous.  Two very different people.   Very lucky girl.

And I used this time to catch up with Dad.  We would talk on the phone a lot, about anything.  Sometimes he would talk.  And when he did, I listened.  When he really talked about old stories I sometimes even took notes.  Because I didn’t want to forget anything.  I don’t think he would have loved that idea.  I suspect he would have thought it wasn’t worth my time.  But, it was.

Lots of times I would talk.  He was a really good listener.  He knew when to interject and when to stay quiet.  He knew when I needed to hear advice, and when I just needed a sympathetic ear.  Sometimes I get overwhelmed.  And I just need to offload, without judgment or solution.  I called every Friday that I grocery shopped.  Sometimes we talked for hours.

And the years saw a transformation as he was being  treated finally for the PTSD that had tormented his every move since the war.  He didn’t talk much about it, but every once in a while… it was my turn to listen carefully.  And I did.  Gratefully.

Then the conversations started to include talk of him being tired.  Looking for energy.  Millions of excuses listed, tried, tossed.  Then there was the jaundice.  And the blockage.  And the pancreatic cancer.  And within about 10 weeks my sister and brother and I said goodbye to our Marine.  “The few, the proud…”  to the very end.

Dad was a philosopher.  Sometimes I was right with him.  Other times we didn’t quite agree.  But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time.  And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister,  and my siblings and I took him to the fancier hospital.  And we asked some questions.  And we talked a lot.  But, it was done.  In the end it was just time for it to be the end.

But I was not, and am not ready to let go.  Maybe that’s unhealthy.  Or maybe that’s keeping the memory alive.  Whatever.

Dad, stopping by?

Dad, stopping by?

It took weeks to clean out his small apartment.  I touched every paper.  I read, and sorted, and filed.  I made more binders, and file folders.  I shredded only with great care at my own dining room table.  And as I sorted I found little scraps of paper.  Little random thoughts.  Notes.  Scribbles of Dad’s.  So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister.  And I laminated the originals for me.  And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes.  Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused.  And I smiled.  Dad’s mind was not always tranquil.  But in the end it was even through physical torment.  He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier.  Not a shock to those who know me even a little.  But, also not unfair, all things considered.

This was a light week here for doctors.  Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint.  Oh, and one random really large pathology bill that was clearly not done right.  The appointments were fine.  One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth.  The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus.  (If only I could get a scheduler to do these things…) And the fight of course was with my doctor.  The office staff of a vascular surgeon for a procedure I definitely need soon.  I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday.  Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window.  We just bought the other one 14 years ago when we moved into the house.  But about 2 years ago there was this little black spot that kept growing.  And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house.  By the time they came the little black spot was large and clearly water related.  So the nice man took pictures and the conversation was about replacing the center of the window.  Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced.  But since the window was over 10 years old we’d get a percentage off the cost for the window and installation.  Um, well that price was so wild we bought the window ourselves.  And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job.  It was supposed to fit right in.  And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off.  But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm.  That wasn’t the inside.

bay window

bay window 2

I like the house neat.  Actually I need the house neat.  And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up.  But I can’t and I won’t.  Because it’s a control thing.  I know it.  I’ll own it.  I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time.  I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way.  But, through much experience I have found it markedly easier to handle every single crisis with a clean house.  Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit.  That’s when we decided to paint.  It was time anyway, and the house was on its ear so to speak.  So I prepped the room and there was paint.  And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

living room chaos

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape.  There are two rooms with that peaked roof and lots of floor space.  (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves.  It has taken 4 weeks to clean out and move her, but we finished today.  And as I sat in her room I cried a little.  I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared.  I was right to be scared.  Some scary things have happened in the last 11 years.   This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

megs empty room

It was a good time to move.  Junior High starts in just a few days really.  A whole new school.  A new chapter.  Turning point.  And as she decided what to keep, toss, and donate, her personality began to shine through.  With just a few pictures left to hang, she has created an atmosphere that is representative of her.  Now to keep it clean and clutter free… :-)

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!”  I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days.  One too many trips up the stairs, or on the floor sorting things?  Who knows.  Just like the headache that’s been around one day too many.  Sinuses, allergies?  God, I hope so.

At some point I’ll have to go to sleep tonight.  And tomorrow will be for more appointment making, and dealing with random bills.  The side of the house is littered with trash.  There are 10 bags being donated Saturday morning.  The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work.  But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux.  Moving Dads things in earlier in the year jostled the basement.  Moving Meghan upstairs caused some purging.  And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week.  The number is too high to count.  I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it.  So I do.  And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection.  Gratitude for an almost “normal” week with largely “normal” problems.  Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

tranquil mind

Thanks for the chat Dad.  I miss you. A whole lot.

 

Life begins… at the edge of your comfort zone…

 

Roller Coasters

Nope, not us.  No way.  No how.  Terrifying.  Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain.  Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her.  No getting out of it for me.

She told me that she had been through a lot in her life.  And that she shouldn’t be scared of a ride.  True.  There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared.  Then there was the second time.  And by the third time she owned it.

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_DSC2818“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago.  Twice.  I went too.  And I really didn’t mind.

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“Life begins at the edge of your comfort zone…”  Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together.  I did Star Tours too, but virtual reality isn’t really agreeing with me anymore.  Maybe too much reality?

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So she went on Mission Space with her Dad – twice.  Once on the beginner level, then on the advanced.  And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears.  There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

“It is only with the heart that one can see rightly…”

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There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise. We are blessed. We have … Continue reading

Avocado and Isagenix – What’s in YOUR suitcase?

It’s been almost two weeks – a long time for me not to write.  My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis.  (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip.  But we knew that would seem more like a punishment than a precaution.  So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by.  I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time.  And as we were packing I began to gather food.  See, when you travel with a kid with food allergies, you don’t travel without food – ever.  Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.”  There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars.  In the past we also always packed tomato, and barbecue sauce too.  Every morning we would fill small containers and have it to flavor anything dry along the way.  Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

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I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated.  She liked it to moisten food, and there were plenty of days she ate a whole one.  So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes.  Those, I had packed with intention of using them myself.  So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30.  We rode the Magic Express and got to the hotel by 10:30.  At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us.  We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection.  Her stomach was happy.  We were happy.

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Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.”  The “Fab Five” greeted us, and the chef took us to the buffet.  I tried to choose carefully, as the selections seemed a bit questionable.  I was assured they were within her dietary restrictions.  And there was the drink.  We asked for it diluted, as it wasn’t her normal fare.  But he was busy and I suspect by the third glass the waiter had forgotten to dilute it.  And there was the GFCFSF sausage… and…

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By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat.  She asked me for food, and even as I handed over the pretzels I should have known better.

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She slept fitfully.  So much so that I kept waking to check on her.

“New room… new place.”  I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I.  And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned.  So much.  So forceful.  Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World.  And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest.  And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure.  After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time.  There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective.  And he sat with us for a good hour learning about Meghan.  Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home.  But, she was hungry.  And there were avocados.  And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.”  And just like that he was out the door headed to a whole foods 6 miles away.  HE took money only for the milk itself, not for his gas or his time.  And we had options.

so delicious

WHO does that?  This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals.  And once the avocado held itself in place we had a few options.

“Can I have a shake?”  MUSIC TO MY EARS…

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A half shake in 8 ounces of coconut milk.  Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip.  With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

 

Suck it up, buttercup

beatingcowdens:

I don’t often reblog. But I reread this a bunch of times and decided it’s well worth sharing. The Pink Underbelly has some excellent insight!

Originally posted on The Pink Underbelly:

This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.

Proceed at your own risk.

The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”

The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they…

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