Grandma – The Long Goodbye

Real life continues around you whether you want it to or not.  And over the last few years as we have juggled Cowden’s Syndrome, my dear Grandma has battled Alzheimer’s Disease.  This disease is far too common and not for the faint of heart.  When it was named “The Long Goodbye”  it was appropriately so.  That goodbye came to its end for my Grandma last week, and her “Celebration of Life” was today.  Her influence on my life can not be understated. 

While I am acutely aware how lucky I am to have had my grandparents for so long, there is a special kind of loss when you’ve been fortunate enough to have grandparents into adulthood.  Below is a transcript of the eulogy I delivered today.  Pictures were just added for good fun.

It has been so hard to gather my thoughts.  I love to write, but it is a formidable task to speak to the end of an era, while teasing apart the pair that was “Grandma and Pop,” in order to spend a few moments remembering Grandma.

Grandma was small and strong, faithful, feisty, loyal, fierce, firm, and dedicated.

Besides being “small,” which is a ship that sailed for me decades ago, I aspire to be like my grandmother.  Sometimes she said very little, but what she said was always full of meaning.  And it was not the fluffy philosophical stuff.  It was straight to the point.  You always knew where you stood with Grandma.

I grew up on the first floor of the two family house they resided in for over 50 years.  I spent some formative years there, from 5 to 15, where I was loved unconditionally and held to a high standard all the time.  Those years shaped my character, and I will be forever grateful.

I can remember learning to keep myself busy, sorting buttons from a glass jar, while I sat on the kitchen floor.  I remember watching Grandma cook, and iron – two things I DEFINITELY did NOT pick up from her.  I remember tasting cookies, and waffles, and the best lemon meringue pie I’ll ever eat.

She was active her whole life.  She took walks all around the neighborhood for many years.  I watched her climb up and down the two flights of stairs to the basement to do laundry, and up again into the attic to get whatever was stored in their “pantry”.  That attic had a pantry that could have helped the block survive a natural disaster.  They were always prepared.

I remember fighting with my sister Lisa, back when it was just the two of us.  I remember being scolded, firmly (and we’ll leave that there..) and being told we needed to look out for each other.  Now we are more grandchildren, and great-grandchildren too.  I remember.  And we will.  We all will.

I remember the times I disappointed.  Thankfully, there weren’t too many, but there is one that I remember like it was yesterday.  Goodness, it must have been almost 40 years ago when I was touching the nativity scene that I had been told to keep my hands off.  I knocked over the donkey and his ear fell off.  Grandma was mad.  And, even after Pop glued the ear back on I saw that ear for the rest of the years that the nativity went up.  Grandma never said another word about it after that day.  No doubt she forgave me.  But, that feeling of disappointing her was not one I ever desired to relive again.

I remember playing card games with Grandma.  I can remember Parcheesi a little, but it must not have been my favorite.  What sticks out in my mind are “King’s Corners” and “500 Rummy”.  I learned so much more than the rules of the games.  I learned that Grandma was not about giving away easy wins.  I learned that if you wanted to win, you had to work for it.  I also learned that sometimes you lose.  And, being a gracious loser is probably more important than winning.  Life lessons.  Thanks Grandma.

I learned how to be frugal after learning all about the Great Depression and the stories of truly having nothing at all.  She didn’t share those stories to garner pity.  She shared them as an explanation.  She shared them as a motivation as well, although she may not have realized it.  You see, I learned that sometimes people have absolutely nothing, and it’s just not their fault.  I learned to work hard, establish a reputation, and to give with a giving heart, with no expectation of return.  I was given gifts.  Through the years I received many material gifts, but the ones forever etched in my heart are the emotional gifts, of love, support, and encouragement.

For years I learned the value of being able to kiss my grandparents goodnight.  Our family was not super-affectionate, but still, there was a lot of love.  And, so much love came from those goodnight kisses, that I still remember today to ALWAYS kiss my family goodnight.  I learned that there is no promise of tomorrow on this earth, and I watched for years as Pop stopped to kiss Grandma goodbye before he left the house for any reason.  It was in those moments I promised myself I would settle for nothing less than a man who loved me the way Pop loved Grandma.  I did not settle Grandma.  And I understand the beauty of loving and being loved.

The days are sometimes long, but the years are short, and our family grew.  And as each generation brought more love into her heart, I understood the value of what we had.  I understood it, and tried to soak it up every chance I had.  Most people are not as fortunate as we have been.

Family Christmas 2015

Grandma’s mind started to give her trouble many years ago.  No one talked about it much.  We just quietly noticed.  Although, I suspect none of us noticed as much, or as soon as Pop surely did.  Maybe it was the depth of his love that motivated him to care for her alone for so long as she slipped away.  I don’t think we’ll ever fully understand, but it was remarkable.  A love story like theirs is almost unheard of in this generation.  It spanned time and space and well over 70 years.

And when the day came that Pop was no longer to be with us, Grandma gained residence in Clove Lakes Nursing Home.

For almost two years the staff of 6A got to know her.  They don’t have an easy job.  You have to have a special heart.  But, they do it with compassion and integrity.  They took the days she lashed out in stride, and sat and talked to her on the other days.  They learned of a woman, who even with a “broken filter” loved God, her husband, and her family.

Some time around Thanksgiving, Grandma stopped eating solid foods.  And although she would, at the start of it, take some Ensure, slowly she transitioned to an all Ginger Ale diet.  And, if you ever bad mouthed Ginger Ale, I’d like to tell you to consider it’s life sustaining properties.  Grandma lived well over a month on Ginger Ale!

For only the last two weeks or so, Grandma spent most of the day in her bed.  It was more comfortable for her thin, weakening frame.  And it was during those visits, Ginger Ale in hand, that we had some of the most remarkable conversations.

Long had passed the day when Grandma knew who I was.  I asked her one day if she knew me, and she gave me a crooked smile and shook her head.  She said simply, “but I know that I love you”.  And, that was quite enough.  I asked if it was OK if I called her Grandma, and she said, “yes”.  So, that was how we rolled.  It didn’t matter if she knew my name.  It mattered that her face brightened when I walked into a room.  The love was deep in her heart.

I started jotting down some of the things she was saying, so I’d have them to look back on, and I have to tell you, I had some good laughs these last few weeks.

Grandma was in her clearest voice saying the Lord’s Prayer one day very recently.  And as she said, “Lead us not into temptation,” she paused, opened her eyes, looked at me, and said, “That’s a bad one…” and proceeded to finish the prayer.  Right to the point.  I got it Grandma… don’t worry.

She prayed a lot those last few days.

She also asked for a bat one day.  Trust me, she had no interest in playing ball.  She wanted a bat to get after one of the most gentle aides on the floor.  Marlene laughed and never even paused while she carefully and lovingly repositioned Grandma.  I was in the room a few days later when Grandma told Marlene she loved her.  That was Grandma, right telling exactly what was on her mind – to the end.

She talked about Pop too.  One day she said during her prayers, “And my darling Ed, don’t forget him.  I bless him and I pray for him.  He’s my best friend.  He’s been my best friend a lot of years…”

She told me she “had a nice time”.  She talked about a trip that she initially didn’t want to take.  But, she came around.  She said, “I have to go with my husband and my chocolate”.  She said, “I have to trust”.  And she told me Jesus died so heaven was “guaranteed”.

The day she left us we played music for her.  With the help of the internet we pulled out her favorite hymns.  She couldn’t talk much, so we played, “My Jesus I Love Thee,” “Amazing Grace,” “What a Friend We Have in Jesus,” “I The Lord of Sea and Sky,” “Beautiful Savior,” “How Great Thou Art…” The list went on.  And, with each passing song she seemed to settle.  She fell into a peaceful sleep.  She was finally almost ready.

Grandma and Pop are back together again now.  I remember after Pop died, and Grandma could not really process his passing, the decision was made not to tell her.  We were told that there really was only a door between them, and the amount of time they’d be on opposite sides of the door was short, especially relative to the time they were together.

Truer words could not have been spoken.  And, as much as we will all miss them terribly, there are people who are just better together.  Grandma and Pop were two of those people.

 

Grandma’s passing marks the end of an era. In addition to being our matriarch, she was the last surviving of the 6 children in her own immediate family.

Grandma and Pop may no longer be here with us, but they leave behind children, and grandchildren, and great-grandchildren, and friends, each with personal, specific, life altering memories.

I have no doubt all the angel choirs are singing today.

I’ll leave you with the prayer Grandma said at the end of almost every Lord’s Prayer this week- “Lord, bless us and make us a blessing to others.  AMEN!”

December 30, 1945
                                     A love story that knows no end…

 

 

Hurry up… and waiting rooms…

The early hour usually means I would be at work.  Instead, I am sitting on the 10th floor, in the waiting room.  Again.

Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee.  The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain.  This time there is a new doctor at the helm, an orthopedist from Long Island.  Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat.  He is on standby.  We are sitting.

Waiting.

Alone with our thoughts.  Not always my favorite place.

These last few weeks have been a whirlwind.  When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.

Over the last few weeks, we have been busy packing in as much good stuff as we could fit.

The school play, her first production, was April 30, and May 1.  It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children.  She is hooked.
 And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong.  As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level.  She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.


She also almost finished the CYO Swim season.  Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.

In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.

All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.

I know there are people who are busier.  I know multiple kids jostles the world.  But, I also know I am proud.

She ran on raw nerve.  She pushed and pushed in ways that would have taxed a healthy child.  And she made it.  Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.

And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…

 And I’m impressed I got her there.

We like to convince ourselves that we are just like everyone else.  But the reality is that this genetic disorder messes with our bodies and our minds.

As I said to the nurse this morning when she wondered why Meg was a little edgy,  “It’s not you.  You are just an ACCUMULATION of her life.  Step by step.  Poke by poke.  Surgery by surgery.”

I think she got it.  Maybe.  As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.

So very hard to believe.


I’ll update later.  I’m waiting.  Cheering my kid on as she continues to be BEATINGCOWDENS.

Keeping focus

It’s 2015 and the first surgery of the year has been scheduled.  February 18th.  This year it’s my turn to have surgery over the February break.  It seems each year one of us takes a turn.

Calendar

So while my friends are returning to school tomorrow, counting the days to the February week, I am not quite as excited.

It’s only a vein.  A large, painful, varicose vein to be stripped out of my right leg.  Large enough that it requires an operating room.  But it’s far from the first.  My veins are crap.  This is almost certainly connected to the PTEN mutation that caused our Cowden’s Syndrome.   My veins seem to be a generation less severe than my girl’s AVM.

I had the first one stripped in my early 20s.  Before I knew of Cowden’s.  Before there was Meghan.  The next 2 were done in the years that led into my early 30s.  Then 4 years ago I had 5 done through an in office procedure at NYU.  There they were just “closed” and not removed.

Vein_Anatomy_112

Maybe they are sped along by a life that requires so many hours on my feet.  Maybe genetics have sealed their fate already.  Not a single doctor I have seen has ever claimed to know for sure.  And that’s better.  I hate when they guess.

I sometimes wonder when I will run out.  I wonder how many they can close off or take out before…

They just keep telling me the ones they are taking out are already broken.  Backflowing.  Not doing their job anyway.

Doesn’t keep me from wondering why they keep breaking.  At 41 I do wonder how this bodes for the future.  But, it’s one of the things I have consciously chosen not to research too much.  Because I can’t control it.

I have tried compression stockings, and I wear them when the pain and pulsing gets really bad.  But, I hate them.  And a religious stint of wearing them a few years back saved me nothing, and caused me to be very angry.  All the time.

They are not nearly this glamorous.  Trust me.
They are not nearly this glamorous. Trust me.

So for now, it’s the last thing I feel before I close my eyes at night.  It is the first thing I feel when I open them in the morning.  It is the reason I often keep moving, because the resting makes me more aware of them.

The pain, the pulsing, the aching is maddening.  But it certainly reminds you you’re alive.  And, as cliché as it sounds – it reminds you that it could be worse.  Much worse.

Our vascular issues in this house, (although Meghan’s still terrify me,) have been confined to lower extremities.  And I flash to our friends in Australia whose 20-year-old fights vascular malformations in her brain.  Over and over and over, with a resilience in mother and daughter I marvel at.

Perspective.  It’s all about perspective.

perspective

Meghan has 2 appointments coming.  One is a follow-up for her vascular surgery in November.  The other is with her endocrinologist to try to tease out the continuously unbalanced thyroid hormone levels.  I have three in February – before the surgery.

It’ll be a busy winter.

So glad we chose to distract ourselves from ourselves with the “Jeans for Rare Genes” fundraiser.  Always good to keep it focused somewhere else.

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

Rare Disease Day Fundraiser

Good lessons that I teach my daughter.  Good lessons I will remind myself repeatedly when I am tempted to rant about another stint in the operating room.

Better me than my girl.  And it could always be worse.

Maybe we’ll have a different countdown to the February break.  Maybe we will count down until February 15th – the date we hope to raise enough money to make a difference in some lives.  The rest of the week… we’ll skip that for now.

Scars…

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

scar2

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

scar 3

And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

scar 5

It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

 

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.”  We met a lovely woman who was surprised we weren’t raising money for us specifically.  We explained that we were grateful.  I feel well enough to work.  We have good medical coverage. There are so many not as fortunate.
scar 1
When it gets to be too much, I know to fix my eyes on things far beyond the mirror.  I have a greater purpose right in my own house.  And WE have a greater purpose.

We are BEATINGCOWDENS… together!