“Cancerversary- a celebration of life BEYOND cancer”

daughter

To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly.  But, to someone who is date obsessed, it makes sense to celebrate the victory.  It’s not about remembering the … Continue reading

Three Year Old Memories

third-birthday-cake

It was about 4 in the morning on March 5, 2012.  I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach.  I was dizzy, lightheaded and weak.  The task looming … Continue reading

The Heart of a Champion – an open letter to my daughter

A-champion-is-someone

Dear Meghan, Today Daddy and I watched you swim in the Silver Championship meet.  It was your first qualifying meet, and it won’t be your last.  We find it amazing that you qualified, and for the 100 butterfly no less, … Continue reading

World Rare Disease Day – Advocacy and Awareness

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World Rare Disease Day is February 28th.  Although the actual day is February 29th (the rarest day…) It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people. Our fundraiser … Continue reading

The Speed of Life

speed of life 2

I am always amazed by the speed of life. I don’t know why at this point I’m not used to it yet.  But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find … Continue reading

Jeans for Rare Genes – Local News Coverage

So despite a few tiny errors, we were really touched by this!

Meghan’s Rare Disease Day Video 2015

More about a successful event later.  For now, news that we’ve raised over $10,000 to share between the Global Genes Project and the PTEN Foundation is plenty while we rest.

PLEASE, spend 7 minutes on Meghan’s video.  You won’t be sorry!

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.

photo 4 (1)

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.

veterans day 3

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

Winning

winning2

Winning.  It feels good.  And it’s not about being first.  And it’s not always about being “the best.”  Sometimes winning can be as simple as not losing!

Every day we wake up and prepare for battle.  The “sword” is sharpened before we get out of bed.  We can not take a step unprotected, or unguarded.  And, even being on guard against Cowden’s Syndrome all the time is often not enough.  So often things just happen…

Sometimes we get a little  A LOT frustrated.  Often we feel beat up by this beast that we battle.  “It” gets quite a few swipes in.  But, we have, and we WILL always remain on top.  That’s why we are BEATINGCOWDENS.

So tonight, as we drove home from a swim meet in the Bronx, we chatted –  my girl and I.

And it was pleasant, easy conversation.

So often as the weekend comes I reflect on the week that was in awe that THAT much “stuff” fit into the week.

This was no exception.

Last month she was sidelined from the swim meet.  Recovering from knee surgery just three weeks prior, she was in no condition to compete.

This month she was all in, and we both loved it.  It is such a treat to watch her when she gives it everything she’s got.  It’s an even bigger treat when she takes 4 seconds off the 100 free and 1.5 seconds off the 50 fly.

Winning.

The conversation on my end for the long afternoon of waiting was pleasant and easy.  A bunch of overheated parents held captive together, all sharing a common hope that their children swim their best.  Meghan talked comfortably with her peers, easily passing the time between events.

There are goals, qualifying times in her brain, but today she was pleased by her success and so was I.  She may reach these times this season.  She may reach them next season.  But, we agreed that it doesn’t matter as much as her continued progress.  And I was able to tell her how proud I am that she persists.  Through 5 knee surgeries, through thyroid numbers that would level the strongest among us, through chronic pain – quitting is not in her vocabulary.  This is the focus she will take with her for the rest of her days.  This is the attitude, this “I CAN do it,” is what I pray will follow her all of her days, through all aspects of her life.

winning

Winning.

This week she got a part she wanted in the play she’s been working on in after school drama.  She was patient.  Persistent.  She calls drama “fun,” and the students, “funny.”  She never acted before.  Except for every day when she “acts” like a pain-free “regular” 11-year-old.  She’s thrilled.

Winning.

The marking period ends this week I think.  Her averages on the “Pupil Path” app impress me.  And I was a pretty good student.  I don’t check her homework, or really bother her about anything.  “I’ve got it, Mom.”  And the numbers tell the same story.  All those years of working together on good study habits paid off.

winning3

Winning.

The fund-raiser, “Jeans for Rare Genes,” is taking off.  And we haven’t seen anything yet.  People are reaching out.  They are coming to the event, donating raffle baskets, making monetary donations, and offering their time and energy.  Local businesses have been extraordinarily supportive.  Meghan had seen the best in so many people.  She knows her life matters.  Her story matters.  Her drive is being rewarded.  Her big heart is teaching her to dream bigger, and help more people.

Rare Disease Day Fundraiser

Winning.

We lost our Allie Girl, our 11-year-old rescue in December.  She was with us 7 and a half great years.  We miss her.  All of us, especially her Dad and her “furry” sister Lucky.  Felix approached me about rescuing another dog.  I thought it might be too soon.  He reminded me that Allie had a good life because we rescued her.  He felt strongly we could be that same kind of help to another dog, and by doing so we would honor Allie, and help Lucky’s loneliness.  I told him I was open – but no puppies.  I wanted to know we were saving a dog.  I wanted a dog no one else wanted.  That made sense to me.

Sweet April showed up on a web site Felix was following.  A three-year-old lab mix with an uncertain history, rescued from a high kill shelter in Florida.  She was being fostered in Pennsylvania.  “It’s all in the eyes,” Felix said.

IMG_3723

We put in an inquiry, and left an application with references.

The Email said she was going to be in Brooklyn Tuesday night.  Could we come and see her?  And if everything went well and she and Lucky got along, would we consider taking her?

TUESDAY?  Who takes a new dog on a Tuesday?

Sound asleep in the car Tuesday night.

Sound asleep in the car Tuesday night.

Apparently we do.

April arrived at our home around 7:30 PM Tuesday, after a brief visit to Petsmart for a new collar, and to meet GiGi and Pop!

We had to get her in, fed, settled and all of us off to bed within a few brief hours.

She found her spot.  And Meghan has slept better this week than she has in years.

IMG_3720

WINNING!

Lucky has developed arthritis in her knee, and a visit to the vet Weds. with both dogs in tow was very emotional for me.  April checked out as healthy and strong.  And my Lucky had her very first blood test.  I am happy to report she is healthy as can be.  I left with a script for anti-inflammatory medicine for her.  She’s going to need it to keep up with her little sister.

And somewhere I can imagine Allie smiling in Heaven, as Lucky is the recipient of the playful nips she used to give so frequently.

Allie always watched over her human sister.

Allie always watched over her human sister.

 

The sight of two tails wagging again was good for us all.

WINNING!