Reflections on Mother’s Day – from a “Rare Disease” perspective

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain.  I’ve said this before, and I will say again, it is a blessing and a curse.  It is a good thing to celebrate accomplishments, and the anniversaries of such things.  It is dangerous territory to recall to be caught up in the negative aspects of any day.  By doing so you give it power.  And, if you are not careful you give it power over you.

beautifu;

It is a dangerous road to walk.  I have done many miles on it.  And my brain does not differentiate the “good” dates and the “bad” ones.  I remember them all.  The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays.  Valentine’s Day, even after I found the love of my life, has never held any appeal.  Mother’s Day and Father’s Day don’t do much for me either.  Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From:  Mother’s Day Turns 100: Its Surprisingly Dark History

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

self love

Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for.  And I am.  Every day.  I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…”  I believe the meaning was every day.

So yesterday I needed to do some soul-searching.  And I think I figured a lot out.

I have a tough as nails mother.  She is the strongest woman I know.  Not a day of my life goes by that I am not grateful to her, and for her.  And I try not to let too many days go by without telling her so.  Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom
One of the many lessons I learned from Mom

I have two grandmothers on this earth.  One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me.  I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

happy life

My girl is recovering from surgery.  On my couch.  In pain.  Feisty.  Looking to move.  Bored.  There would be no grand family celebrations yesterday.  My husband was fixing our deck that is literally falling apart.  A labor of love – and safety.  I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago.  Spent in the pediatric unit at RUMC.  Scared out of my mind.  Not knowing what we were up against.

Then I thought about Mother’s Day 2008.  A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends.  The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day?  Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s.  I’m not that kind of fool.  But I will dare to say that maybe raising a chronically ill child makes it “different.”  Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

yesterday

I stick a note in my 6th grader’s lunch just about every day.  And I will until she tells me to stop.  I will remind her in as many ways as I can, of my love for her every day.

Life is scary.  Our lives are scary.  Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours.  This is not a rare occurrence.  This is something that goes on regularly, for one of us.  But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day.  From mother to child, and child to mother, and aunt to niece and grandparent to grandchild.  Not in the, “buy me lavish gifts or send me to the spa” sense.  But, in the, “I’m really lucky to have you.  Right now.  Today.  and thanks.  For that thing you do.  For that smile.  For that hug.  For calling me.  For calling me out. For driving me to the store.  To school.  To practice.  For driving me insane.  For making a mess.  For sometimes cleaning it up.  For sitting by my hospital bed.  For getting me ginger ale.  For helping me walk.  For making me laugh.  For never giving up on me.  For understanding I won’t be here forever.  For being my cheerleader.  For supporting me.  For listening to me.  For shutting up.  For saying just the right thing. For explaining the math.  For butterfly kisses.”

never lose hope

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Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter.  Right now we’re nursing a recovery.  And it’s coming along, thank you very much.  We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.

survival

Flip It…

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Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared.  The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself.  Then I decided to cross the street.  It was a simple idea.  Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient.  It was just different.

Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata.  One day I even found myself talking to one of the neighbors near the icy house.  She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible.  Made sense.  My grandparents are in their mid 90s and live in their own home.  They have kind neighbors who often clear their walkway before family can reach their home.  But, what if they didn’t.  And what if we didn’t live close?  It’s easy to judge.  I’m guilty too.  But I’m working on a simple move, we’ve come to call – “Flip it!”

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We talk “Flip it!” when it’s something that can be fixed.  When it’s a negative thought that can be changed.

I’m not suggesting the world go all “Ms. Mary Sunshine” all the time.  As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad.  Sometimes things just stink.  Sometimes they are even worse.  But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.

Problems

I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.

This was not a fabulous vacation, but yet nothing awful happened.  We cleaned lots of things.  We saw a few doctors.  I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again.  Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl.  Even in this “preteen” phase of our lives, she makes pretty good company.

rainbow not thunderstorm

So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege.  The alarm will hurt a little.  But I will, “flip it.”

Shopping wasn’t easy.  There are shoe challenges for this beautiful girl whose feet are each growing at their own pace.  But, we found what we needed, even when I had to buy two pairs and toss one of each a few times.  There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday.  There is a beautiful young lady.  So while the shopping pricey, that job security was a comfort.  When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful.  In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee.  We have the means to keep her dressed as she needs.  Can’t always have what you want – but, rather what you need.  “Flip it.”

perspective

We didn’t make church as a family of three today.  Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face.  The fatigue was too much.  The thyroid hormones still unbalanced.  The exhaustion from just being “normal” is too intense sometimes.  But I got there.  To celebrate our pastor.  To worship in a room full of kind souls.  To watch a baptism, and to pray.  I was alone, but yet I was reminded that I am never alone.  “Flip it.”

On April 20th we will make an unscheduled stop to the dermatologist.  There is a suspicious mark on Meghan’s side.  While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling.  We will get it checked, and hopefully it will become quickly a memory.  But, we won’t wait.  Cowden’s Syndrome is a burden.  There is never a break from screenings and testing, and checking.  But, we get to strike first.  And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now.  Our screening and preventative medicine while cumbersome is a gift.  “Flip it.”

My heart and my head are full all the time.  Sometimes I can keep it in check, and other times I need to remind even myself to find  way to “Flip it.”

In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING.  It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles.  That is how we define where our life will go, and the mark we will leave on the world.

-always-be-kind

We remain – BEATINGCOWDENS…

Here Comes the Sun…

It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car.  And I could write it off as mere coincidence.  But, there was my Dad this afternoon.  In the car, with the sun shining.  Reminding me…

“Here Comes The Sun”

Here comes the sun, here comes the sun
And I say it’s all rightLittle darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

Here comes the sun, here comes the sun
And I say it’s all right

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

Dad never worried much.  And that had its down sides – I’m not going to lie.  But there was this calm about him that I was able to appreciate more as an adult.  I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.

Our problems here are real.  They are ever-present.  They can captivate, and get a downright choke-hold if we let them.  The worries are real.  The concerns about the future.  About mobility.  The concerns about the present.  About pain.  About fatigue.  About swelling.  And looming surgery.  The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides.  The concerns about the uncertain make it hard sometimes for me to find the sun.

There are normal “issues” too.  Ones we don’t write too much about here.  Bumps in the preteen world.  Learning as we go.  Along together.  Grateful for what, and who, we have to work with in this house.

Yesterday it was dark.  Really, really dark.  My gut drew me to the cemetery, where I hadn’t been for a while due to the snow.  And as I walked up the hill I saw the white piece of granite.  I think I knew it was going to be there.  And simultaneously I was glad and sad I was alone.  I cried like I haven’t cried in quite some time.  There is something about the reality of loss etched in stone.  The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.

There's a certain finality of reality etched in stone...
There’s a certain finality of reality etched in stone…

I sat in the car too shaken to drive.  And I called my husband, and then I called Alan.  Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year.  We have yet to meet, but we have spent hours on the phone.  He has laughed and cried with me.  He has told me stories of things, and people I needed to know.   He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.”  I haven’t read a book in quite some time, but I did as I was told… and I was so grateful.  My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded.  Alan’s efforts on Dad’s behalf over this last year and a half were Herculean.  Marines never leave a brother behind.  So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra.  But just when I was about to crumble these two birds flew in low and close.  There was a peace about them as they flew past into the park.  I understood.  It’s about way more than the awards.  It’s about the love.  And the peace.  And the lessons learned.  And the heart and eyes open for growth.  And “Uncle” Alan made me text him when I got home.  Another testament to his love for his “brother” extending right to me.

90-minutes-in-heaven-9780800759490

This morning we all made it to church.  It hasn’t been an easy feat these last few months.  We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity.  Next Sunday, Easter Sunday, will mark two years of membership for us.  Never did I expect to leave my home church.  Never will I quite get over that loss.  But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church.  Gratitude.  Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.

hosanna

The winter was too much.  In so many more ways than the relentless weather.  The worry.  The heavy hearts.  I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter.  I didn’t realize how very much I needed the sun- literally and figuratively.

sun

 

Today Meghan swam.  Another CYO meet.  She blew my mind.  Again.  I can not for the life of me get over her stamina in the water.  It’s her “happy place”  and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.

Her team loses every meet.  But the friendships they form, and the positive attitude can not be traded for high scores.  She became a swimmer because this team took her in when she had never swam competitively.

The 25 fly… (red cap)

The first leg of the freestyle relay.

We had friends spontaneously show up to cheer her on today.  Perhaps they sensed the lowest lows…  We spoke of summer, and gathering in the yard – just because.

We drove home with the sun warming the car.  The temperature read 50 degrees on the dash-board.

This week we will wait for the results of the blood drawn Saturday.  This week will be just 4 days as Easter Vacation approaches.

“Here comes the sun… and I say It’s all right…”

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

Good to Have Goals…

And every time I sit down to write I get distracted.  Forgive my attention issues.  There seems to be too much to attend to at once – and I have issues.

I didn’t want to go today.  I didn’t.  But I had to.  Cause it’s time.  It’s actually way past time to address the chronic, throbbing, aching in my legs.  I saw a doctor last summer when I was near the end of my rope.  That was a mess, which ended with me quite sure that a doctor with a staff that obnoxious would never be operating on me.

end of my rope

And, maybe it was for the better.  Because I never felt quite right about him anyway.  So I pulled myself together and I went to another doctor.  A second opinion.  This one was worried about an abdominal aneurysm, which thankfully was not the case, but at least he paid some attention.  “You need a CT scan,” he said.  “I need to make sure nothing vascular is wrong in your abdomen triggering all these veins to go bad. ‘ (I’ve had 7 addressed so far.)

I explained that I should only have CT scans when absolutely necessary.  I told him about the radiation risk, which is especially dangerous for those of us with a PTEN mutation when cells can misbehave and develop into tumors of all sorts with ridiculous frequency – especially when provoked.  I even explained I was allergic to CT contrast dye.

I was sent for the scan – premedicated for the allergy.  Left only to pray that the radiation minded its own business.  And the report came, and there were unsettling omissions – like checking the box that my ovaries and uterus (gone now since May 2012) were doing fine, and ignoring the large tumors being carefully watched on my spleen, and the cyst on my kidney.  I was bothered.  The doctor called to go over the report with me but didn’t have my chart and couldn’t answer my questions.  I had the report amended.  I tried to find someone else to read the disk.  I thought I had struck gold in November when a doctor took an interest in our case, but that – like all other things – was not to be.  So I waited a few more months.  When January came and I was pretty sure Meghan would not be using the February week for surgery, I called to schedule mine.  It was time to get the vein removed – starting with the right one.  Triage.

I asked if I should see the doctor again since it had been a few months.  I was told no, and given a date for the surgery.

hand in a door

Today was Pre Admission Testing at the Hospital.  I think I’d enjoy getting my hand stuck in a door more than that.  It is a mess of people who know very little asking the same questions over and over when they don’t know the answer.  Instead of Pre testing, perhaps they should call it CYA – a way to prove to everyone you were healthy before they did whatever you needed.

Stop all your over the counter medications today.

Why?

Because some of them thin blood.

Which ones?

I don’t know – but they tell us to have you stop all of them.

My probiotic thins blood?

I just have to tell you to stop them all.

sigh

We were moving along until I read the consent form.  “Left leg.”

Um… right leg…

At first she questioned me.  Then she picked up the phone to question the doctor.  The answer came with a new consent form and a request for me to see the doctor.  Tomorrow between 9 and 2.  Um, no.  How about Tuesday?  That I can do.  Cause I LOVE spending my entire vacation – every time – in a doctor’s office of some type.

And as I was leaving she said, “You forgot your chest X-ray.”

Insert speech about radiation and Cowden’s here.  As well as, why would I need a chest X-ray if I am not sick and my lungs are clear?

Right.  You can get your x-ray down the hall.

radiation

No one asked for a supervisor.  No one checked in on anything.  This woman undoubtedly knew nothing of my condition, only told me my procedure would be cancelled if I didn’t go.  For a hot second I did wonder if that wasn’t a better idea.  But, there was a kid to get home to, and a dance she wanted to get to, and so many reasons to run away, and so many reasons it has to get done.  But, in the end the pain in the legs drove me down the hall.  Where I took another, albeit small, hit of radiation to the spot where my breasts that were removed harboring early stage breast cancer once lived.  But, for good measure they put a cape on my abdomen.  To protect the uterus and ovaries THAT AREN’T THERE!

I left angry.  Sad.  Mad.  Frustrated.  And grateful.

Grateful at least that the bungling was being practiced on me and not Meghan.

Next Thursday the 19th.  It’s a minor procedure.  But, wow.  I think I need some prayers.

And them Friday the 20th it’s off to the orthopedist for Meghan

You see the MRI she had January 22nd – that I battled to have read until February 2nd- showed a decent size residual AVM in the knee.  It’s not gone.  In reality, its not much smaller than it was.  Perhaps a bit less angry, without as intense of a blood flow, but yet still 2 x 1 cm embedded in the meniscus, and aggravating all sorts of other things.

ER 11/24
ER 11/24

And just for fun this MRI showed evidence of problems in the knee itself.  Too much messing around with loose blood flow for too long.  There is some deterioration and its time for an orthopedic surgeon, the chief at a Long Island Children’s hospital to take a look.

I didn’t write the week I was ready to string up the vascular surgeon for not getting back to me.  I thought it better to say nothing, because I could find NOTHING nice to say that week.  Now,  I am calmer.  And we need him.  So I breathe deeply.  And I told his PA in my calmest angry voice, that no matter how busy they get, they need not forget there are humans, with families and real pains, and anxieties on the other end of those CD images.

In reality it doesn’t matter, because I suspect there is no good solution.  They offered us another embolization.  She recovers poorly from them.  And truth be told, they aren’t working.  And since insanity is defined as doing the same thing over and over expecting a different result – we decided to hold off a bit.

Just-Tired

Plus, there is the whole endocrine thing to deal with.  Like the TSH level that again doubled in 6 weeks on a higher dose of synthroid.  And a kid who is functioning with numbers that would level me.  So the doctor said, “I can’t explain it.”  And he won’t prescribe an alternative medication.  But he acknowledged the idea of insanity, and raising her synthroid again with no plan is definitely insanity.  So we talked about T4 (Synthroid) and how she is at the upper dosing for her weight.  And then we talked about how its the body’s job to change T4 into T3 so it can be used.  So, I asked if it was possible that her blood levels of T4 were there, but her body was flubbing the conversion, which it has done before.  If that was the case, that would explain her symptoms.  So, we added some T3 to her existing dose of T4.  And then she gets to wait 6 weeks again for a chance she may feel a but human.

Thankfully we’ve chosen to surround ourselves with positive distractions.

Thankfully 163 people are coming on Sunday to the Jeans for Rare Genes fundraiser, benefiting the PTEN foundation and the Global Genes Project.

Fortunately, my girl had influenced lots of people, and motivated them to raise awareness and support her favorite charities.

Fortunately, we have places to look to besides ourselves.

As I sit here with the seating chart to my right, and raffle prices to be typed on my left, I am grateful that there is a project.  I am humbled by my girl and her determination to be “normal,” and a powerful advocate all at the same time.

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It will all work out.  It’s got to.

We’ve got things to do…

We are BEATINGCOWDENS!

Rare Disease Day Fundraiser

“The Few, The Proud…”

I have a pretty big family.  And among that family I boast countless uncles, great uncles, and aunts and cousins too.

But, I have uncles I’ve never met.  They are brothers to my father who died just about 14 months ago.

My father had 7 brothers and a sister who I’ve grown up alongside.  I have cousins galore, and I love them all.

But there is another part of my Dad’s life that only began to become real to me in the weeks preceding his death.  And that is where I began to learn about these other uncles.

And even today, as I sit, on this snowy day, in my office, in Dad’s chair, and with his old champion sweatshirt for warmth, I have plenty of time to reflect.

We spent today home.  Meghan and I were beat up by a schedule that is beyond our capability to maintain for extended periods of time.  We crashed. Hard.  Sometimes it’s easy to ignore this chronic illness we have.  Sometimes it’s easy to forget about this genetic mutation lying in wait to wreak havoc on our lives.  Sometimes we do such a good job pressing on – getting it all done – that we forget we need to pause.

Cowden’s Syndrome doesn’t cause the fatigue, per se.  At least we don’t think so.  But, somewhere in between the messed up blood counts, and the appointments, and MRIs and scans and trips to Manhattan, the fatigue finds its way in.  Add in surgery on the calendar for me in February.  Couple that with the raw determination of an 11-year-old who is intent on conquering the world – and you have focused school work, swim practice, meets, theater practice, and an epic amount of community outreach work as the date closes in on our “JEANS FOR RARE GENES” Fundraiser at the Hilton next month, and suddenly this exhaustion seems easily explained.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Suffice it to say, a January snow on a Saturday morning was truly a heaven-sent gift for us.

And so after the laundry is back under control, and the house is returned to reasonable order, I get time to sit with my blog – a place I have missed in the chaos of the last two weeks.

And while I have so many family and friends that I love so much, the reality is that when I had things on my mind – intense medical things.  I would always and without fail use Dad as a sounding board.  He would listen for hours with no judgement passed.  He would offer advice when he could, and respect when he couldn’t.

For large parts of my youth Dad was absent, almost completely.  I didn’t understand, but it was what it was.  Sometime after I got engaged in 1999 our relationship began a lot of repair work.  We talked more and more as the years past, but there was always a detachment.  There was a shield.  Even with us.

He settled on Staten Island finally, about 5 years before he passed away.  He lived with his sister, my aunt, and they were good company for each other.  He reached out.  He made an effort.  Slowly he started to let me in.

I was a psychology and education major in college.  I remember the lessons on PTSD, or Post Traumatic Stress Disorder.  Immediately so many things made sense, and I saw my father in those lessons.  But the real moment came when he said it himself during one of our long conversations.  “I have something called PTSD…” and there was an opening to a world I had never been allowed into before.

There was a young man – still in his late teens.  A young man who became a Marine.  One who enlisted with a few friends during a war that I knew precious little about until I began my own research.

Dad

My grandfathers, all three of them had fought in World War II and tales of their service were common.  Never in a bragging way, but matter of fact lessons and experiences and stories, told and shared my whole life.

I studied World War II in school.  I learned, probably not enough, but enough to carry on an intelligent conversation.  But, I as a teacher of young children, had precious little knowledge of the horrors that were the Vietnam War.

My Dad who left for that war never came back.  Sure, he survived treacherous battles in the jungle, but he never came back as the boy who grew up on the local streets with his friends and siblings.  He returned a changed man.

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My Dad gave his entire life for his country, even though his service record bills his active service as about 3 years (of that 13 months were in the jungles of Vietnam,)  He came back traumatized, confused, and unsettled.  One of the talks we had after the acknowledgement of the PTSD included, “I spent the first 40 years after I came back thinking everyone else was crazy, and the last 5 thinking maybe it was me.”

Years of wandering allowed him to make “friends” with lots of people in lots of places.  But in reality Dad was a “man’s man.” It was easy for people to trust him and share with him.  Many people who viewed him as friends knew very little about my Dad the man.

Dad with a buddy in Central Park
Dad with a buddy in Central Park

As he got sick Dad authorized the release of his medical and service record to me.  He knew I would pore over every detail and search and question, and hopefully find answers no one else could.  I searched and I read and I researched and I asked, but in the end the course of events was set to be what it was.  During that process though I read, first hand accounts from my father about things I had never known.

I also got to spend more time in his apartment.  And there were three pictures there.  And Dad would talk briefly about those pictures.  And I would wonder about the other men behind those eyes.  And how their lives had turned out.

Thomson, Merkel & Zeppie close up

After we buried Dad in December of 2013 I continued my quest through our local Congressman to get his service records reviewed.  Still in a deep quest for closure I uncovered some photo CDs in Dad’s things.  Most were of photos taken by him.  One was marked Vietnam.  On it were photos not taken by Dad, of Marines who served with my him.  There were pictures of men, pictures of war, and documents that I had never seen.

Not long after that,  a conversation with Holly, a woman who we all love, who shared a long relationship with Dad, produced a contact list for Dad’s Marines.  The names matched the names on the photos and I set about writing letters to each of them.

I sent out letters to each of them, looking for specific information.  I knew my hope was a longshot.  I was looking for recall of events that had taken place over 45 years prior.  I sent out 18 letters.  I expected I’d be lucky if I heard from one of them.  Why would they answer me?

And that is where I learned of the uncles I never met.

Aside from the 2 Marines who had predeceased my Dad I had responses from all of them.  Every single one of them reached out to me, to offer condolences, to tell a story, and to offer support.  I laughed and cried and healed more during that month than I could have imagined possible.  These men, together for a relatively short window of their lives, were deeply bonded as brothers forever.  These were my “other” uncles.

semper fi

And I connected with the men from the photos, “Merck and Zepe” as Dad called them.  To listen to their tales of stories I had never heard, was a gift I could not have imagined.

But there is one.  One “Uncle” who has been there for me this past year in ways far beyond what I could have ever imagined.  “Uncle Alan” had listened to my tears, taught me, comforted me, and supported my endeavors.  His compassion knows no bounds.  He has prayed for my family, asked about my daughter, given me peace on Father’s Day, and has done more for me than I  imagine he will ever know.

he who shed blood with me

Last week I was at the height of exhausted and in my mail was a package from “Uncle Alan.”  In it was the book “90 Minutes in Heaven” as well as a bumper sticker, a T-shirt, and a “US Marine AM-GRUNTS” hat.  I cried.  Tears of gratitude.  For God’s introduction to family I never knew I had.  I cried tears of healing, as I come each day to understand more about my father through these men who call him “brother.”

Dad and I spoke sometimes, towards the end,  about the “whys.”  He wondered why he got to come back and live his life, when his dear friend Tommy was KIA.  He wondered about mine and Meghan’s Cowden’s Syndrome.  He wondered if there could be a connection to his ruthless exposure to Agent Orange.  If somehow that genetic mutation could have arrived in me through him.  He wondered about the possible connection to the cancer that took his life.  We wondered together lots of things we will never know the answer to.

But there  are things I don’t wonder.

Dad’s life had purpose.  It had meaning.  It left impact on everyone he ever loved.  Out of his suffering came great strength, and a deep faith in a good and perfect God.  I don’t wonder for a minute where Dad is now.  I am sure he is flying free in Heaven.

I don’t wonder “how” we got Cowden’s Syndrome.  Cause we have it.  I don’t even wonder “why” we have it.  Because we do.

And who we are develops through our experiences in life.  And while there are some I would have preferred for us not to endure, I don’t wish to change them.  We are learning to be the best people we can be.

And along the way, there are people looking out for us.  “Uncles” we never knew.

Alan signs his letters “S/F” for the Marine Corps motto “Semper Fi” – “Always Faithful”

A permanent addition to my ankle...
A permanent addition to my ankle…

I have not known truer words.

I plan to get to visit “Uncle Alan” in June.  We have lots more to talk about.

Blessing abound if we keep our eyes open.

something to be grateful for

All Dogs go to Heaven…

Although there is some debate on that, I stand with Billy Graham.

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We lost our Allie Girl today.  And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.

Allie found us.  Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart.  It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky.  Meghan and I walked through the aisles enjoying some of the puppies around for adoption.  Ready to leave, I asked, “Where’s Daddy?”  And there he was, knee to knee – eye to eye- with Allie.  “This is the dog I was meant to have,” he told me very matter-of factly.

Just a week or so after they met.
Just a week or so after they met.

I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)

“What if they don’t get along?”  (Solved in 2 seconds flat when they met outside Petsmart.  They were fast friends.)

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“We are having company for Meghan’s birthday next week.”  (They offered to delay the adoption 2 weeks.)

“Our yard may not be big enough.” (We passed the home visit with flying colors.)

allie12

“We don’t have the money right now _” (I was grasping.  The fee was so reasonable. And they offered to postdate the check a month.)

I lost.

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But I won.

Big time.

Allie joined us on August 12, 2007.  The guesstimate for her age was three.  I suspect that was conservative.  She stepped into our home with none of the puppy nonsense new dogs cause.  She was trained, didn’t bite the furniture, or pee on the rug.  She needed a little tiny training to settle down with her food.  Easily done.  And she really was the perfect dog.

Allie waiting until Felix wakes up
Allie waiting until Felix wakes up

She was Felix’s dog from the get go.  No matter where he went she followed.  She slept on his feet at the TV at night.  She waited for him on the weekends if he slept in.  She sat at his feet when he whistled.  She greeted him at the door.  She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.

Her “tough” side – much like Felix’s, was put into check with the right love.

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allie11

I took a bit longer to catch on.  It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her.  I had to understand her, her abandonment, and her need to trust again.  Once I “got it,”  we did just fine.

allie10

Mostly I fell in love with Allie because she loved my Meghan.  I can remember nights, and there were so many sleep deprived nights,  that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her.  She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.

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allie3

And how could I not love the dog that loved my two favorites?

Meghan, being without siblings, took to the dogs as her “furry sisters.”  She always used the number 5 to represent her family.

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And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.

Being sick is the pits.  Having Cowden’s Syndrome is horrendous.  Having a dog or two to love you through it – definitely a bright spot.

There were so many nights.  More than can be named.  So many nights of tears and frustration and sadness and anger.  Soothed by the love of a dog.

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We love Lucky.  Very much.  But we always said Allie made Lucky a dog.  Allie turned her in the right direction.  Made her less neurotic and more normal.  They were sisters.  A good pair.

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Cowden’s Syndrome just got a little harder to swallow.

Life just got lonelier.

Allie got sick fast.  Maybe a few weeks of not being quite right.  And a few days of really being laid up.

We took her to the vet Sunday.  It looked bad.  I took her back today.  It was over.  Her belly was full of fluid.  Even without eating – 2 pounds heavier than Sunday.  They didn’t offer to do blood.  Or treat.

allie4

“This is it,” the vet said.

And Meghan and Felix came, and we sat as a family.  And we said goodbye together.  We hugged, and held, and loved and cried.  Then we left.

Our world, and our lives forever changed.  Richer for our experiences, more painful for our losses.  For only those who love deeply, can hurt.

Thank you Allie.

Hopefully Grandpa Tom finds you.  You two always got along.  Cause I firmly believe I’ll see you both again.

dogs

Christmas Letter 2014

In December 2013 I was in no state to put out a Christmas card.  Dad had died – today, December 4th.

My heart hurts.  They day was tough to contend with. Memories are a comfort and a source of agony.

But, this year I decided, despite additional sorrow, and stress, that it was essential we set some sense of normalcy.

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So we put together a Christmas Card with our favorite Disney pictures.

And I put together the most concise letter I could to describe a busy 2 years.

(Click on the link- IT SUMMARIZES SO MUCH!)

Christmas letter 2014

And to keep it fun, I added our flyer for our fundraising breakfast in 2015.

Rare Disease Day Fundraiser

Meghan is now a week post op.  Not a minute. And I mean a minute.  Goes by without the realization that she had a hole in her artery.  There will never truly be peace.

But life marches on.

Today we brought two balloons to the cemetery, a flag and a butterfly.  Very appropriate.

Tomorrow she goes on a trip to NYC.  Here’s to hoping the knee holds.

Back to swimming on Monday- with her eye on some improved times.  Life goes on.

We continue to be BEATING COWDENS!

I used to be afraid of roller coasters

I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.

Then I realized roller coasters and life have a lot in common.  So I started riding them, cause really -what the heck?

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If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years.  And I am confident I have studied hard, and that I understand.  I understand that just when you think you might understand – you don’t.

You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.

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There have been more funerals this year than I care to count.  Maybe its always like this, and I am just noticing now that 40 is behind me.  Or maybe not.  But there have been funerals for friends, for the brother of  friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…

As I sit here thinking about all of them I try for the umpteenth time to rationalize.  And I get farther with some than others.  Some will just never do.

But the ultimate realization is that it’s not really mine to figure out.  It’s not mine to decide how it fits in the grand plan.  And I’m trying to stop looking to figure it out.  Because, boy it can be exhausting.

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And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why.  But, as much as I miss him, it’s not in a pitying kind of why.  It’s in a genuine curiosity for something I will likely never be allowed to understand.  Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.

It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.

As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.

I wonder how we ended up here – again, on the second floor of this hospital.  Today.  Now.

12 hours ago I thought I was tired.  HA!  What did I know.

450 miles in about 30 hours to celebrate the life of a great man, my uncle.  Lots of driving, lots of thinking, lots of observing.  Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor.  Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity.  Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.

12 hours ago I thought I would go to bed early.

But I ended up picking Meghan up from swim practice on the way home from Vermont.  And she walked out of the locker room and almost fell to the ground with tears.

“I can’t walk.  It’s my knee.”

And I checked off the list – Did you fall?  Did you bang it?  Did you hurt it doing dryland?  One at a time I asked the questions, even though I knew the answers.

This knee.  The one we’ve been waiting for since we stopped the celebrex had finally given way.

We had had hopes of finishing swim season first.  That was before we had to refocus our hopes to making it into urgi care without falling.

We were promptly told to get out, and get to an ER.  Fast.  The swelling was too big.

Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats.  A quick bag for Meghan and I and we were off.  This time to Lenox Hill ER.  Cause that’s where they do the knee surgeries.  And not that I’m trying to plan.  But just in case… Maybe we should be at the right place.

They contacted her doctor.  He’s sure it’s the AVM, but he’ll confirm in person in another hour or so.  In the mean time nothing to eat or drink for Ms. Meghan after midnight.  Just in case.

AND regardless – we remain BEATINGCOWDENS!

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Absolutely, Positively, Negative.

I am rarely given a straight answer on anything.

Last December as my Dad was dying he made a request.  He asked that we be tested for genetic pancreatic cancer.

My grandpa had it, my dad had it.  It made sense.

It took me 7 months to get it together.  I already had a really crappy genetic disorder, and I was not interested in hearing more about my faulty mutated genes.

But I did it.  Because I promised.

And in the midst of the chaos that was the week that was, I received a letter in the mail.

13 genes tested that are related to pancreatic cancer.

13 genes negative: NO CLINICALLY SIGNIFICANT VARIANTS DETECTED.

No guarantees.   But, life has none.

Simply a straight answer that actually doesn’t turn my stomach.

There is so much more to say, but for today.  Only this.  Only positive.  Only the good news that I passed none of these other mutations to my girl.

Deep breath.

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