Invisible Illness – Stuck in the Middle with You

Published on July 29, 2015 by beatingcowdensLeave a comment

I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.

I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”

It worked.

On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth. It has to work, but right now it’s the “typical” middle child. It’s having a tough time fitting in where it belongs. Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.

In February of 2014 there was the complete removal of her thyroid.

In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.

In November of 2014, almost on schedule, the AVM bled and required emergency surgery.

In February 2015 I addressed another vein gone awry in my leg.

In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.

In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms. That was an unintended result of Monday’s visit to the hand surgeon.

There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.

More blood tomorrow. An Abdominal ultrasound Friday.

The summer is not for carefree adventures. The summer is for doctors. I hate that. But, its true.

And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me. But, if I may be frank, it pissed me off.

Not because she doesn’t look good. She’s stunning, and tall and polite and well-mannered, and has a beautiful smile. But that is NOT the point.

The point is he never mentioned anything about the medical history, and in our world, being validated matters. Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth. And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair. More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.

We remain “stuck in the middle.”

Again, I have the “healthiest looking sick kid.”

My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice. That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively. The child who still hasn’t gotten clearance from her last knee surgery. Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable. And to some extent I get it. Invisible illness is hard to understand.

It is during this week I feel most “stuck in the middle.” I am so grateful the accessibility issues are limited. I do not fit in with the parents of wheelchair bound children. Although, it is a necessary tool to allow us a much-needed vacation. But, what is not limited are the “invisible” elements of her condition. The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.

We’ve learned not to talk about them much. But, they are always there. Hers and mine.

She learns to appreciate what she can do, and acknowledge what she can’t. Begrudgingly.

My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.

She learns to use the anxiety as a tool.

She masters her emotions. She is the boss of her body. She amazes me.

And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.

They will never know the powerhouse of a young lady that just left their chair. Until she comes back for the other two a few months later.

“Stuck In The Middle With You”
(originally by Stealers Wheel)

…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…

She didn’t get THAT from me!

Published on May 28, 2015May 28, 2015 by beatingcowdens4 Comments

And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.

I am just along for the ride.

She looks like me. She and I share a broken PTEN gene, and all the ramifications. She inherited my tendency to grow things, and perhaps her body is even playing harder with her.

We are roughly the same size. We have curly hair. We share some clothes. She and I are both stubborn, sometimes to our benefit and sometimes to our detriment. We are strong-minded and strong-willed.

And that is probably where the comparisons stop.

Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.

Tonight, her father and I took her to the school’s chorus/drama performance. It was hot. It was long. It was so worth it.

The kids have amazing talent. I guess what I didn’t really get until tonight is that mine fits right in.

After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella, an excerpt from a Broadway show tune.

Meghan had never heard of “Fiddler on the Roof.” She downloaded the song she was told to learn. She practiced. I fought back tears of pride and joy.

I told her drama teacher I had no idea she had that in her. The teacher told me to “wait and see what we bring out of her in the next 2 years.”

What a gift. Two happy places. The stage AND the pool. BAM!

Take that Cowden’s! This kid’s got things to do…

Three Year Old Memories

Published on March 4, 2015 by beatingcowdens1 Comment

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 ahead that morning was unlike any I had ever been through.

As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months. Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome. I had read and researched and didn’t like much of what I saw. I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.

Cowden’s Syndrome was an explanation. It wasn’t something we had just “caught.” She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well. But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.

We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid. Emotionally scarring biopsy followed. We met an oncologist for intake as well. And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.

I sat up when Felix came into the bathroom. I don’t remember much of our conversation. Somehow I got myself up and dressed and into the car.

We drove to NYU in a good deal of silence. I am sure I cried a lot. I shook quite a bit too. But it was time. The decision had been made.

Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients. I forwarded her my medical records before the appointment. At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier. We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.” I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.

“You will get cancer,” she told me. “It’s not a matter of IF, but WHEN.”

I asked if it could wait till July. She said absolutely not. March 5th was as late as I could push her.

She ordered an MRI in February “just to be sure” everything was ok. The MRI was clean.

Just a normal “prophylactic bilateral mastectomy.” If there is such a thing as “normal…”

I met with the plastic surgeon, arranged for the implants. I blatantly refused tissue expanders, much to her chagrin.

My mom, during the time of her surgery had once called her breasts “superfluous tissue.” I tried to keep that in mind when I was making mind- numbing decisions.

We got checked in at the hospital before 7 AM. There was a whirlwind of doctors and nurses traveling through. Some had me signing consent, others were checking various things. I wanted to run, and scream. I felt like I was stuck in a bad horror film. But, I sat. And I signed papers. And I waited.

And then it was time.

It was a long walk to the operating room after I kissed my husband. I couldn’t much control the tears. I was terrified. The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing. You’re doing the brave thing. There is NO other choice for you.”

I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt… sweet relief!

Even now, as I think back three years later, I am certain that was my first, and most genuine emotion. I felt relieved. I felt empowered. I felt victorious. This was one battle Cowden’s was not going to win. We played on my rules and my time… ok, well the doctor’s time… but still! I knew of too many lives lost to breast cancer, and I would not be one of them. One less worry. More time to be the Mom and help my girl through this genetic mess.

I left the hospital about 28 hours after I got there. The drains were the worst of it all. There was pain, no doubt, but it was all tempered by the peace in my soul. Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.

Pathology was almost an afterthought for me.

That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”

At first I was confused. I thought maybe she was just advocating my decision. Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy. There were all sorts of other markers too. Cellular changes to indicate things were starting to go very wrong. Because the DCIS was so far from the chest wall, I would need no treatment at all. An hour before I didn’t even imagine I had HAD cancer. Now, I was being declared cancer free.

“If you had waited for July to get this done, you would have likely been in a fight for your life.” I will probably never forget that sentence.

I stepped onto the street in NYC with my husband and my daughter. We all took a moment to digest what had gone on. We hugged. Then I grabbed hold of Meghan.

“You my dear, saved your mother’s life.”

Confused, “How do you figure?”

“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery. I would have found the cancer much later. Possibly too late. I am going to be Ok BECAUSE of you…”

As we let the gravity of that sink in, it was the ultimate lesson in perspective.

The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.

Every piece of our past is a bit of the puzzle we are forming with our lives. Some of the pieces are confusing, and don’t seem to fit. But, sometimes we just have to wait patiently and watch.

Three year old memories.

Gratitude.

Day One

Matthew West

from the album Day One (Single)

Buy on Amazon | iTunes

Play sample

Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back

Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that

I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’

It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one

Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there

See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out

It’s day one
And here comes the sun

Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun

Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over

Keeping focus

Published on January 4, 2015January 4, 2015 by beatingcowdens1 Comment

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.

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.

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.

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.

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

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.

Vascular Road Maps and other Cowden’s adventures…

Published on October 3, 2014 by beatingcowdens3 Comments

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

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

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

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

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

This is not my leg - but a close comparison... — This is not my leg – but a close comparison…

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

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

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

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

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

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

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

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

“You mean the hysterectomy?”

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

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

“I’m not sure, why?”

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

“How long had that pulsing been there?”

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

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

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

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

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

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

MY SPLEEN!

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

I really hope they aren’t misbehaving.

I like my spleen.

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

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

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

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

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

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

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

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

Scars…

Published on July 19, 2014July 19, 2014 by beatingcowdens3 Comments

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.

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.

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.

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.

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!

I wish cancer got cancer and died!

Published on October 26, 2013 by beatingcowdens1 Comment

Today was rotten.

And it is Saturday. I hate it when Saturday is rotten.

And I am tired. And worried. And my heart is heavy.

I guess that makes me in the same boat as most people.

And then there was a text this afternoon.

And just like that breast cancer claimed another life. Just like that two women had no mother, and a husband lost his wife.

To the best of my knowledge she didn’t have Cowden’s or BRCA, or any other genetic cause for her cancer. But then again, neither do most people. And I was reminded again that maybe having Cowden’s makes me a little luckier.

I knew to get the beast before it got me.

She was not old enough to die. But, then again, who is?

And even when I held her hands in June and looked her square in the eye, and told her to fight with all her might – I knew. She knew too. Deep in that place where the thoughts are that you just don’t want to think, or feel, or believe. We both knew that this is how it would end.

Cancer is stupid, and mean and nasty, and ugly and awful. It’s a big bully and I really hate bullies.

I’m pretty much over this “Breast Cancer Awareness” thing.

As a matter of fact I am over the whole cancer thing altogether.

Ready for a cure.

Broken hearts. Lives crushed. Too many wakes and funerals. Too many people gone too soon.

My heart hurts. My head hurts. And I think some part of me feels guilty.

Guilty for having a “head start.” Guilty for having the support to push me through the double mastectomy.

This is the first person in my life to die of breast cancer since my diagnosis. I am sadly sure she won’t be the last.

And, like so many things that have changed since March 5, 2012 – this one hurts differently. Worse.

Cancer really just sucks.

Race for the Cure!

Published on September 8, 2013September 8, 2013 by beatingcowdens1 Comment

I woke this morning to the sound of my dogs running back and forth through the house. They weren’t barking – just running.

The sound also woke Felix who is quicker in the mornings than I am.

“Weren’t you supposed to be up at 6?”

Gulp. Sure was. And that was my Mom at the door waiting to take Meghan and I to the Race for the Cure in Central Park.

As I quickly washed, my face, and changed my clothes. I let Felix see to Meghan. I was annoyed at myself for oversleeping. I purposely set the alarm on my cell phone so I would have to undo the lock screen to shut it down. Apparently I was THAT tired.

We have been going to this race for at least 15 years. Some of the participants have come and gone, but Mom and I have been there together… well except for 2003 when Meghan was just about a month old.

And, for the better part of the last 10 years Meghan has joined us. She was always so eager to support Grandma, that once I had the title of “Survivor” too she was determined to support us both.

Except last year. When she was sidelined. Sick with a fever early in the school year. As devastated as she was I convinced her this was the year that mattered. This was the year I could say I was a FULL year without my breast cancer.

Dates matter.

When Mom was first diagnosed in 1997, I wasn’t sure she would be ok. Although she battled through 2 mastectomies, and chemo, and 5 years of tamoxifen like a champ, it became important to celebrate the victories. The milestones. So Meghan has grown up watching me acknowledge Grandma’s “Pink Ribbon Anniversaries” three times a year. (First surgery, second surgery, end of chemo) And while the acknowledgements are small they are an understanding between us that we remember. We are grateful.

The race every September in Central Park was a natural outgrowth of that. A desire to celebrate. To be thankful. To remember.

Of course for me things feel a bit different sometimes. Last night I told my husband I sometimes feel guilty wearing the pink “Survivor” T shirt. He was perplexed. I explained that I didn’t feel like I “survived” chemo, or radiation, or any of the things most women go through. To which his sassy reply was, “You were tired of the old boobs? That’s why you had them cut off?”

See I wonder sometimes if would have been different if there was no cancer. If the mastectomy had indeed been prophylactic would that change the fact that a genetic predisposition – AKA Cowden’s Syndrome (in ADDITION to having a first degree relative with breast cancer,) had pretty much predetermined the fate of my breasts?

I have “met” in this virtual world, and now in my real life, quite a few “previvors” who have taken an empowered approach to their genetic predisposition and had a mastectomy, and/or a hysterectomy.

I would say they are as much “survivors” as anyone. Bravery, coupled with a desire to be there for your children and your family motivates these women to endure major surgery(ies.)

http://www.thefreedictionary.com/survivor The Free Dictionary.com has the following definition of Survivor…

sur·vive (sr-vv)

v. sur·vived, sur·viv·ing, sur·vives

v.intr.

1. To remain alive or in existence.

2. To carry on despite hardships or trauma; persevere: families that were surviving in tents after the flood.

3. To remain functional or usable: I dropped the radio, but it survived.

v.tr.

1. To live longer than; outlive: She survived her husband by five years.

2. To live, persist, or remain usable through: plants that can survive frosts; a clock that survived a fall.

3. To cope with (a trauma or setback); persevere after: survived child abuse.

So I put on my pink shirt, and we got out the door (t+Chai in hand) in just a few minutes. We blew into Manhattan and found a spot on the street close to the park.

We walked through the “Expo” which was a little thinner than most years, took a few pictures, and then it was time to walk.

Although the weather was beautiful, Mom’s pinched nerve is not cooperating the way she would like, so she took a shorter route as Meghan and I headed to the starting line.

For 3,2 miles, I pushed Meghan in her push chair. She made friends along the way. She met a police dog, and lots of nice ladies to whom she gave her “Cowden’s Card.” And every time she gave it out I thought – Cowden’s Syndrome is more rare than BRCA, but just as lethal, even more so in some ways. People should know. I reminded her how glad I was – to have her

there.

Just before the 3 mile mark we were joined by Grandma, and the three of us crossed the finish line together.

And as we walked under the pink balloon arch and turned towards the car I forced from my head the reality that we were now 2/3 pink. I looked at my little girl in her white shirt, about to start 5th grade tomorrow. I prayed for lots and lots of years for her to not have to worry about any of this. I thought about how much better she looks in white than pink. I searched my heart praying for a cure.

And in the depths of my soul I don’t go a day without considering her 85% lifetime breast cancer risk.

Dates are important.

Now March 5, 2012 gets added to our celebration list.

Life is uncertain. Celebrate the little victories together. They are what matters most.

I believe…

Published on May 22, 2013 by beatingcowdensLeave a comment

I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.

I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.

I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward. We choose to step forward. I believe we will make a difference.

I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.

I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do. I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.

I believe in angels, and speak regularly of my cousin Meghan, our guardian angel. But, I also believe there are armies of angels around us. I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November. Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.

I believe in miracles-large and small. I have witnessed at least one large one, when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago. I believe that miracles happen every day – all around us. But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.

I believe that adversity can only define us if we let it. Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us. I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life. I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary. They are more like “you can try that roller coaster you don’t like” scary.

I believe we are allowed to be frustrated and sad and angry and mad. Every single one of us – sometimes. I believe that life can be very, very, very hard. Overwhelming at times. But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.

I believe in smiling more than frowning. I tell Meghan that she will draw more people to her with a smile on her face. She listens.

I believe that good things can come from unexpected change. New friendships and old ones become more solid when tested. People you never expected can go to bat for you – and look out for you.

I believe in surrounding myself with people who are “real.” Who say what they mean, and mean what they say. I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.

I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.

I believe writing helps me channel my own energy into a productive outlet. I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I. I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)

I believe that people who are only in this life to gossip and spread lies and false information are toxic.

I have made a pact to rid my life of toxins. I believe with a lot of determination it can be done!

Moving Forward

Published on May 16, 2013May 16, 2013 by beatingcowdensLeave a comment

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.

I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.

I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.

Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!

************************************************************

In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)