Forever…

Published on July 20, 2018July 20, 2018 by beatingcowdensLeave a comment

When I married my husband I committed to forever. It was a good call.

When we decided to have a child, we understood she would be our baby forever. No regrets.

But some time in the fall of 2011 a doctor diagnosed both of us with a rare genetic disorder. This forever, well, this one we did NOT sign up for.

At first there was no time to process the concept of forever as it connected to Cowden’s Syndrome. There was too much to do.

Neither of us had an “easy” medical history, so putting a name on it had its pros and cons. But, we were handed lists of appointments to make and things that suddenly needed immediate attention. We were quickly schooled on tumor growth and cancer risks. We were told to remain vigilant, and that we would be “fine”.

There was no time to process as 2012 had a traumatic thyroid biopsy in January and an embolization for her Arteriovenous Malformation (AVM) in her knee in February. Then, there was my double mastectomy and my “surprise” cancer diagnosis in March, followed too closely by my hysterectomy in May. And soon after that hysterectomy, Meghan had breast, pelvic and kidney and bladder sonograms. There was also another MRI of the knee, and two thyroid ultrasounds that brought in 2013 with a surgical thyroid biopsy.

2012 was salvaged largely by a third grade teacher who I swear was an angel placed in our path. Because there was real life too. There was work, and school, and activities, and appointments that were quickly starting to overwhelm.

There was probably close to 2 years after the initial diagnosis before I even looked up. And, when I did I had a whole host of emotions.

Forever had taken quite a toll on my girl. Tough as nails. Driven. Strong. Focused. Always. But, apprehensive, concerned and full of worry she was way too young to have to shoulder.

Forever. I did my best to keep as much “normal” as I could. Early therapists cautioned not to let the disease “define” us. I kept the schedule delicately balanced between the necessary medical screenings and the “fun” activities. She needed to be “like everyone else”. So there was swim, later theater, some voice lessons, all interspersed with surgeries too many to recount again. Some traumatizing, some annoying, some isolating, and some worrisome. All time-consuming. Some required physical rehabilitation, and others emotional.

Forever. The highway became our bonding place. She could read and do some homework in the car. We scheduled appointments on holidays as often as we could. We scheduled appointments after school. It made for some long days- often traveling 2 hours each way, and waiting forever in the offices- but we did it to preserve school attendance, and to keep her at as many activities as we could.

Forever. She grew up. Not just physically, but mentally. She has broad shoulders, literally from hours of butterfly, and metaphorically from carrying way more than she should at her age. The knowledge that this is her forever is difficult for all of us. We make the best of it. We talk about how grateful we are to know what to look for. But, that gratitude, while sincere, can never replace the innocence of youth. Innocence lost. Forever.

Forever. The wait time at most appointments is close to forever. No one typically knows what to say to us. They look at what they need to. They offer some empathy, sometimes. Then, sometimes out loud, and sometimes in their heads, they show gratitude that they are not fully responsible for us. We wait hours and hours so often. We have learned patience. We have learned to quietly accept that if they “google” us before, it means they actually care. We are rare. We are 1 in 200,000. This diagnosis is forever.

This summer we have already gone to our 16th appointment between us. There are 4 more just next week.

Yet, this summer she performed with a wonderful, talented, warm and welcoming group of young people at Staten Island Children’s Theater Inc. in a production of “Legally Blonde Jr.” They like her. Some of them know what she does with the rest of her life, and others don’t, and it’s all okay there. They give me hope that some people, teenage people and adults as well, are just good people.

She has been at swim practice most mornings between 6:15 and 8:15. She has spent this week in small group lessons for swim from 8:30-3.

She has accomplished a good deal of her summer work for school. She had peppered in the appointments in the crevices hidden in the schedule.

Forever. The reality is not lost. But, I am so proud. So proud of how hard she works to stay in this world, while living in the world of chronic pain and rare disease. It is hard work. She does it pretty gracefully most days.

Forever. Perhaps I could use a lesson or two from her.

Somewhere in the midst of this medical whirlwind we live. Somewhere in the midst of working full-time, and managing surgeries and appointments, and life as it happens to all of us, I have lost track of myself.

Forever. I have one speed. I operate in constant motion, or I am asleep. There is rarely any middle. The yellow legal pad is to the right of my computer, capturing every thought. The iPhone calendar alerts me to the plans of the day. My house, although not as clean as I’d like it, is in constantly good order. It is a control issue. I will own it. There is so much flashing by in the blink of an eye, I can be sure to get the dog fur off the floor once a day, and know that it actually got done.

Forever. I’ve lost touch with most of my friends. Life is busy, theirs and ours. There are only so many times you can tell the same story to people. Our story could be recorded. It just repeats itself. Doctor, testing, surgery, follow-up, rehabilitation, next body part, routine appointment, maintenance, worry about a potential problem, 6 months to watch it… I used to have other things to talk about. Now I would be one of those people I used to laugh at on night-time TV. I am so out of touch with the world. My experiences are significant, but without variety. They are heavy and too much for most people to hear. There are no answers.

Forever. The summer will pass. We will force in a vacation and we will hold those days to be without doctors, and without summer assignments. Then, we will do our best to put our feet in sand once. Just to listen to the water. We will try to get a few people to swim in our pool, so the activities of opening and closing it are not totally futile.

Forever. Life is busy. Too busy. And that’s not just a Cowden’s Syndrome thing. I heard of three deaths this week. All three tragic. One at age 19, one at 31, and another a bit older. Tragedy. They had plans. They did not think their forever was going to end this week.

Forever. My conscious mind doesn’t need but a split second to list dozens of real and significant blessings. There are countless things in my life that bring me to my knees in gratitude. But, the inner conflict is strong. With the knowledge of the wonder and beauty in my life, I should be able to take this diagnosis, this “Forever” that is Cowden’s Syndrome, and put it in its place.

Forever. The struggle is real.

Forever. Stopping to find the moment, and to embrace the joy right now is not as easy as it sounds. I can talk the talk better than anyone. The raw truth is that I can not always walk the walk.

Our Cowden’s sisters and brothers span the globe. Estimates are about 1,800 of us are in the United States. I do not know the world numbers. I know some of the people though. One in Australia just underwent 2 MORE brain surgeries a few weeks ago. Another, a teen who is with her Mom in Cleveland right now is waiting for news that is surely churning mom’s heart.

Forever. It’s such an arbitrary concept sometimes. I became a wife with the intent of forever in my heart. I became a mother with that same intention. But Cowden’s Syndrome threw forever at us. It’s got the same dictionary definition, but not the same feel.

Someone asked me recently why I can’t just take time off, or block my appointments so we have “breaks”. The truth is, I try. Doctors want what they want in terms of follow-up, and being vigilant means I need to comply. Most visits run us a minimum of 4 hours round trip. Many can not be “stacked”. I have a full-time job. I have a high school honor student. We need to be at work and school. I suspect those who ask are just trying to help. But, it makes me feel like maybe if I just tried harder…

Forever.

It took me 7 weeks to write this post. My attention span is not what it used to be. I have a whole lot of reasons to keep making this work. Forever. I am blessed. I am grateful. I am tired. I am human.

This blog was started in hopes that people stumbling upon it would read the story of a real family, fighting the same thing they are. With that comes real, raw, and honest emotion.

Forever is beautiful when you connect it to things you signed up for.

Forever is not so easy when it connects to a rare disease that wants to grow things throughout your body.

Forever. It is promised to none of us, that forever will last longer than today. It is our decision what we do with the gift of the time we have.

I am a work in progress. I am a wife. I am a mother. I am a survivor. I am worth the hard work.

Today I will start by opening all the blinds. Time to look at the sunshine. Time to look at the blue sky and the flowers. Time to breathe. In and out.

One step at a time.

We will remain

#beatingcowdens

Forever.

5 Years and “Sag-less” in my 40s

Published on March 5, 2017March 5, 2017 by beatingcowdensLeave a comment

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU. I signed all the papers with my husband by my side. I shook. I prayed. I was terrified. But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome. This mutation is responsible for increased tumor growth, both benign and malignant. It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things. After our diagnoses, we began aggressive and age-appropriate screening.

Meghan was 8. I was 38.

They started with her thyroid. And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group. Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer. (She does not have the PTEN mutation.) I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology. But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012. She introduced herself to me, having already torn through my previously received medical record, and said we should set a date. When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why? “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively. “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon. The date they came up with was March 5th. I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking. “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative. I am still amazed by that. Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders. She reminded me that the results would be “imperfect.” I knew I could not delay my recovery by months. I had a daughter, a family, and a job to return to.

The surgery was uneventful.

I vomited repeatedly as I left the house that morning. I cried as I walked into the OR. My surgeon called me “brave.” I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later. There were drains and wrappings, but there were things to do. I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there. The plastic surgeon was the first to mention how lucky we were we caught “it” early. I was confused. She said, “The cancer. It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

She realized then she was the first to share the news. Our next stop was the surgeon. I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay. I have not traveled the road as they did. I will forever admire them. But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us. That is a feeling, and knowledge that can not be explained. You either know it, or you don’t.

My implants lasted less than 5 years. The life expectancy is 15. This past summer they were replaced. Scarring was severe on the right side, and the scars needed to be broken up. A new pair replaced the old. Nothing flashy. Quick surgery, quick recovery. No big deal. Just a reminder of the reality that will follow me forever.

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model. My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals. I celebrate even through miles of survivors guilt. I celebrate despite my broken heart as so many around me are taken by cancer. I celebrate because that is what they would want most.

Once you’ve been there. Lived it. Watched it. Seen it. You get a deeper sense of how precious life is. And you celebrate what you have each day. It’s not easy. Life can be messy. But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

The Story of the Girl and Her Mom

Published on October 18, 2015 by beatingcowdens5 Comments

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions. Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot. They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors. Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too. In one they found cancer. But she was called a “survivor” because it was all gone. (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor. They sat in traffic for forever. They stayed in hospitals and had surgeries, and tests. Everyone treated them kind of strange. Like they were aliens or something. Their condition was so rare that hardly any doctors even understood what they were supposed to do.

Over time the girl and her mom got a better idea of what really mattered and what didn’t. They started to be more assertive about doctors, and schedules and planning. They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome. They talked a lot about Rare Diseases. Sometimes they were really angry. Sometimes they were sad, and other times they were grateful. They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together. But they agreed to get busy living.

That didn’t mean they could ignore the seemingly endless doctors appointments. They all had to be done. It meant they could schedule smarter. It meant they would talk about what symptoms had to be addressed right now and which ones could wait. It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering. And she learned that she liked to be busy. She likes to sleep too, but she likes to be busy. With kids. Often. She also likes to be active. A lot.

The girl and her mom still have this Cowden’s Syndrome, and sometimes for reasons no one understands, they hurt a lot. Sometimes the pain makes it hard for one of them to push on. Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other. They push each other to press on because laying down and giving up is not an option.

Their days are long. The mom works full-time. The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice. The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle. This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl. The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder. Because they have each other. And, because this weekend they spent 3 days at a swim meet. And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel – all ready.

And the mom and the girl were so grateful. For each other. For the desire to fight. For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

And as the mom drove the girl to youth group at their church, they talked, about the swimming. And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention. “For the Babies,” and so that there can be research for this Cowden’s Syndrome. So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun. And each chapter holds more promise than the next…

Mortality

Published on July 1, 2015 by beatingcowdensLeave a comment

The awareness that one day we’re not going to walk this earth anymore.

Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.

We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)

In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.

For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.

Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.

As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.

I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.

And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?

I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.

Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…

My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.

We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.

Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.

This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.

I will protect their privacy here, and tell their story as generically as I can.

I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.

Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.

My Dad, the "Irish Marine" — My Dad, the “Irish Marine”

I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.

I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”

Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.

Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.

We lost the Purple Heart but gained so much more.

I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.

And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.

So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.

Mortality.

They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.

And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”

I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.

And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.

A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”

Once you have looked your own mortality square in the eye, you can not walk away the same person.

But, it is up to you what you do with the rest of your life.

As for me, I choose bonding with people who “get it,” be they old friends or new.

I choose focusing on what we can do, not what we can’t.

I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.

Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.

As for us, in this house, we choose to remain focused on

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

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.

This one’s for you Mom – HAPPY SWEET 16!

Published on February 24, 2013February 24, 2013 by beatingcowdens2 Comments

This one’s for you Mom.

My Mom doesn’t have Cowden’s Syndrome. The tests confirmed that.

What she does have is strength, stamina, and courage unrivaled by most. She is a tough cookie. An inspiration with her determination. Not once throughout her life have I ever known her to give up.

Mom is a survivor.

Long before she was a breast cancer survivor, she was a survivor of life.

She survived a divorce, two jobs, and raising 2 kids alone – with the help of my grandparents.

She survived sleepless nights, and worry.

She battled for her kids- fought doctors, insurance companies and the like. And, she even battled with us on occasion… If you can imagine that!

Long before she was a breast cancer survivor, she was my Mom. And she taught some valuable lessons I still use today.

(My sister posted the other day that “Some days I open my mouth and my mother comes out!”)

These are her words coming out of me these days….

But God is good - all the time! — But God is good – all the time!

And….

I really think I am OK with this concept, but we all need a reminder sometimes!

When my Mom was diagnosed with breast cancer I was 23. I was scared. She might have been scared, but she attacked it with her “matter of fact” attitude that I think is what has gotten her so far.

She went for her first mastectomy on February 24th of 1997. She was just 48. The second mastectomy followed in April when cancer was found in the other breast. 6 months of chemo followed. 5 years of Tamoxifen followed that.

And she just kept right on going. Even though some days she felt like this…

Truth be told, maybe we all did. But I did what I could to help out with her, around the house, and with my little sister. I was really just amazed by her drive. But I think I still am.

Last year when I was scheduled for my mastectomy, the surgeon asked me who had been with my mother during hers. I told her my dad and I had. She said, “Well call mom and tell her its time to return the favor.”

I called her on the ride home and although I can’t imagine it was an easy call to take. She never flinched. She took the week off that I had the surgery (a HUGE compliment from someone who sparsely misses a day of work.) My recovery went so smoothly. And I had some of the best conversations of my life with Mom that week.

When my pathology returned DCIS, she was the first one I called. Neither of us were surprised. And, yet her reassuring words, that she knew I had “done the right thing,” gave me such peace.

Before Mom was diagnosed she dreaded turning 50. After all she had been through she embraced 50 with grace and charm, and a few years ago gave 60 a great big hug.

Mom's 64th birthday - and 4 generations of tough ladies! — Mom’s 64th birthday – and 4 generations of tough ladies!

This is a picture from her 64th birthday a few weeks ago.

My mom may not be like everyone else’s. She can be a tough lady. She hasn’t had an easy life. But she has a heart of gold. And I love her for who she is.

As I grow I realize everyone does the best they can with what they have where they are.

I am thankful – so thankful – for these last 16 years with my Mom. I am grateful she got to know my daughter. I look forward to having her around for a long time.

A mother bonds with all her children, and she is close with my sisters – differently than how we are close. That’s what makes each relationship special.

We share some things that can’t be put into words…

Just past the finish line. Aren't we "Pretty in Pink?" :-) — Just past the finish line. Aren’t we “Pretty in Pink?” 🙂

She will always be my friend. I hope she knows just how much she is loved.

Happy Start to your 16th year - CANCER FREE! — Happy Start to your 16th year – CANCER FREE!

Superheroes…

Published on January 4, 2013August 25, 2015 by beatingcowdens4 Comments

I saw superheroes today. Not the kind that normally come to mind.

The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes. And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them. We had a long wait this morning. And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like it was home, handled IV poles and ports and masks, like they were additional appendages.

These people- the young ones and their parents, are made from a stock stronger than most of us. They endure the unimaginable, day after day. Some endure it for years on end. And they press on – because that is what you do.

My beautiful cousin Meghan was one of those superheroes,

Sometimes it ends well, and some times it doesn’t. But while you are there there is no time to think, or to wonder. You must just press on.

That is the story that the 9th floor of MSKCC told me this morning, as we waited for preadmission testing.

Meghan had a 9 AM appointment and between blood work, and our meeting with the nurse, we had at least an hour to wait, and watch, and marvel, and wonder, and worry.

The biopsy is Tuesday. The results will be in by Thursday so they say.

Then, we can make a plan. They tell me they can get the thyroid removed in a few days if the biopsy is positive.

If it’s not cancer… get us home. And, if it is – GET IT OUT OF MY LITTLE GIRL!

She will have nothing to eat or drink after midnight Monday. She will be tired, and cranky, and hungry when we arrive on Tuesday. But she will get anesthesia like she asked, and the procedure will be much more humane.

Then, we will wait.

Race for the Cure (minus 1)

Published on September 8, 2012 by beatingcowdens6 Comments

survicor — It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure. This will be my first race in a pink “survivor” T shirt, insisted upon by Meghan, my biggest fan.

This was our year. I registered Meghan as a “real” walker. She got an official race day T shirt, and a number too. She was so proud to be walking with her Mom, and Grandma – two “survivors.” She was thrilled to be registered, and wear a number. She was looking forward to waking up super early.

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up. We will each wear a special banner designed by Meghan. We will pick up our friend, another survivor, and we will head to Central Park. The car will hold one less this year, and if I might say so myself,

I thought it all day. I thought it to myself. I even hid in my room and cried a little, ok a lot. I had quite the pity party going for my girl. Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people. And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her. She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever. She woke up great this morning. By noon she was developing a fever. She was complaining of a headache. By 2 PM she had cleared 102 and we headed out to the urgi center. After an OBNOXIOUS 3 hour wait, we left with the diagnosis of (“It’s probably”) strep, and (maybe) and ear infection. I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM. By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home. Back from my race. Full of conflicted emotions. I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race. I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

Whose pink shirt is that?

Published on August 21, 2012August 21, 2012 by beatingcowdens2 Comments

survivor — I guess that’s my pink shirt?

It was probably in 1998 when we attended our first Susan G. Komen Race for the Cure in Central Park. Mom had spent 1997 undergoing 2 separate mastectomies, and enduring chemo. Just to top it all off she began a run on 5 years of Tamoxifen.

By September of 1998 she was back to her feisty self, raring to go – so we went. We have gone almost every year since then, save for maybe 2003 when I gave birth to Meghan in August.

A few years ago a dear friend, a new survivor joined us. So one very early Sunday a year, we pile into my Mom’s car and head to Central Park. We look through the stands that are set up. We “shop” for some free goodies, and we pay for some too. Then we head back to the car and drop it all off so we are ready to walk among 25,000 or so survivors and supporters.

We push Meghan in her chair, as the 5K would be way too much for her, but she won’t do without cheering Grandma on. She makes Grandma a banner to hang on her shirt – usually a picture of the two of them. It is a morning of (exhausting) celebration.

So it was Meghan. It is always Meghan it seems, who pointed out to me about a week after my diagnosis of DCIS, that I needed a pink shirt for the race this year. When I asked her why she said, “because you had breast cancer too.”

I thought about that for a few minutes. It was early in the game so the ramifications of what I had been through had not yet fully sunken in. I guess technically she was right. I had the pathology report in my hand. It clearly said DCIS. The breast surgeon clearly called it cancer, and reminded me that a few more months would have put me in a “fight for my life.”

But I had been to those races for many years. I had looked at the resolve in the faces of the survivors. The bald heads of the women still in treatment, and I had read the signs and tributes to those who had fought and lost. I had watched my own Mom endure chemo and years of tamoxifen. Surely I couldn’t put myself in the same class with these ladies?

I suffer I guess with a bit of “survivors guilt.” Some people might chuckle at the thought that my road has been easy, but of course everything is relative, and it is all about perspective.

I did commit to a prophylactic bilateral mastectomy to reduce my imminent cancer risk. That in and of itself is a pretty big deal. Finding out I already had cancer, rocked my world. Knowing that I had already done everything possible to prevent any spread or recurrence, gave me some much needed peace of mind. Angels, especially two I love (one here on earth, and one in heaven) named Meghan, had already kept me from being hurt by Breast Cancer.

Am I a survivor? You bet your ass. No genetic mutation, not PTEN, no Cowden’s Syndrome will take me, or my girl. I am blessed with the knowledge to screen, and the benefits of early detection.

Do I deserve to be in the same ranks of these breast cancer survivors? I am not so sure.

But, I have this pretty pink shirt. And these fake boobs. Maybe that in and of itself makes it OK.

No matter what I will consider it an honor to walk among some of the strongest women I will ever know.

Back to work, back to reality!

Published on June 6, 2012 by beatingcowdens1 Comment

Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.

Um, thanks… and OUCH!

I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.

I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.

He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.

I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.

Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.

You mean I have to teach too? Wasn’t getting here enough?

I made it through – thankfully my days were shortened so I could deal with other issues.

I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.

My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.

It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.

I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.

Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.

My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.

If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.