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.

Dear Cowden’s Syndrome,

Published on March 15, 2015March 15, 2015 by beatingcowdens2 Comments

I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011. Actually it wasn’t even a proper introduction. It was more like, “I’m here. I’m staying. What are you going to do about it?” In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body. And you know what? I could have kept quiet about things. I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign. But, you crossed a line. You messed with my girl.

I went all those years not knowing. I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand. But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.

So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive. Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning. I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met. And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.

That entire first year I was sure we had lost our very existence to the routine screenings you require. A doctor for every body part, and a pediatric and an adult version of each no less. Scheduling was a nightmare. It’s a wonder I kept my job and my sanity. And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed. She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you. Now there was this road ahead that was just flat out exhausting. There were worries heaped upon worries. And it got old real fast.

Our friends have tried to hang with us. And they are an incredible lot. But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.” Understandably, many of them have had to pull back. Their own lives are busy. Things continue, and just because you want to have your way with us, the world can’t stop spinning. We miss socializing. We miss casual get-togethers. It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.

Let’s talk about that for a minute. Let’s talk about the pain. The unforgiving knee pain that affects every aspect of her life. Let’s talk about having to quit soccer in 1st grade, and dance 2 years later. Let’s talk about her desire to run track that can never ever be. Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.

The knee! The right knee. The one that has hurt since birth. The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations. Until they learned of you. You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis. You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed. You would be the reason we are awaiting a 6th surgery on the knee. This one with the orthopedist and the interventional cardiologist at the same time. One will assess the damage from all this blood, and the other will have another go at this AVM.

The AVM. The likely reason the feet are now a size and a half apart. Continuing to make life easy for my girl aren’t you?

And while we’re at it, let’s talk about the thyroid. The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision. We beat you. We got it out in time. But, it was real close, and I didn’t like it one bit. And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve. The endocrinologist is confused. He offers no explanation as to why it’s not ok. They offer me no answers about the effects on the body. Because they don’t know. You’ve kept them confused, and it’s wearing on my nerves.

But, you know what? You won’t win. Not here. Not in this house. Not with my daughter and I fighting you every step of the way. We like to call ourselves “Beatingcowdens,” because we are. And we will continue to.

See, you messed with the wrong women here.

After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little. There are so many. But, they don’t OWN us. Plus, I went on ahead of you and got some things removed. That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…” well, that was a HUGE win. And the hysterectomy before the uterine polyp could change its mind from benign to malignant. Winning.

My daughter has decided to become an advocate for rare diseases. Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee. It started with some business cards that explain what Cowden’s Syndrome is. It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.

She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.” She had a friend make a denim ribbon necklace. And “identity piece” for her. She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.

She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013. She carries hope that one day their work will affect change directly in our lives.

She met up with friends through my online connections. She corresponds with Colorado and Australia.

In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities. Over 150 people attended that event. Community support was overwhelming.

Oh, and the heart of an athlete you tried to take from her… you lost there too. She is a swimmer now. And this year she qualified for Silver Championships in the 100 butterfly for her age group.

So, despite what you may have tried to do to our lives, you are losing terribly. You are something we will have to deal with for the rest of our lives, but you will NEVER own us. You may try to be pushy. You may be downright rude, hurtful and insensitive at times. But, that’s OK. We’ve handled worse than you, and we’ve come out just fine.

As a matter of fact, maybe I should say thank you. Thank you for lighting the fire in our bellies. Thank you for helping us find our self-confidence. Thank you for giving us the fight that forces us to never ever give up. Thank you for teaching us that we can make a difference. Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.

You’re not the boss of us.

Forever we remain,

BEATINGCOWDENS!

Lori & Meghan

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

Champions of HOPE

Published on July 8, 2014July 8, 2014 by beatingcowdensLeave a comment

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!” That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.” The connection with the RARE Community at large carried us through those earliest days.

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy. Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle. In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times. We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years. Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee. Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings. Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea. All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40. No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies. Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.” My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall. I had breast cancer. They found it by accident. My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life. I needed no treatment.

I left the room that day holding the two people I love more than anything. Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known. And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears. Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy. A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go. I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years. I found Facebook, and a beautiful support network there. I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it. After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange. Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right. So, I took comfort in that necklace and I wore it a lot.

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me? The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism. What about me? What about people like me who are dealing with this (Rare disease) every day? I NEED something mom. Not to have a thing, but for my identity.”

Stunned, as usual. I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch. And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels. She told me she’d talk to her husband and see what was around. So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt. Which turned up nothing. There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders. And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one. For Meghan. Because if she wanted a piece for her “identity” she should have one. So he did. It took months. And it was perfect. Absolutely perfect. And he was so generous in the donation of his time, all to light up my girl’s world.

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’ And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by. Felix and I each wear one too. Only 3 ever made. Until recently.

There have been lots of EMails exchanged. Lots of conversations. Lots of people. Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler. But, business decisions are what they are, and this one was not in my control. And, despite that disappointment, Meghan’s dream, her vision, is becoming reality. We received 2 samples this week, and a “THANK YOU” from the team at Global Genes! The necklaces will be on sale through http://www.globalgenes.org in the fall!

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world. She will be 11 soon, and is quite the young lady. She understands life on levels deeper than she should. Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul. She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school. She worked with Student Council to arrange an evening fund raiser. She partnered with a friend in her own class who has a RARE Disease. We sold T-Shirts. We received intense support from faculty, and parents and students. Every child got a denim ribbon to wear for RARE Disease Day. We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser. “At a place Mom.” We can really get the word out and raise money. For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops. She has the heart and voice of an advocate. And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project. (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Champions of HOPE indeed. So proud of her. So proud to see her name with all the others who have decided to “Do Something.”

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

Happy 2nd “Boob Day!”

Published on March 4, 2014March 4, 2014 by beatingcowdens1 Comment

My math mind is full of numbers. It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few.

I am pretty good – although not perfect- with dates.

Today marks three months since my father died. Flying free with the angels I am sure, yet I miss him. A lot. A blink of an eye, and an eternity.

Tomorrow is my nephew’s birthday. He will be 6.

I remember his 4th birthday quite clearly, although I didn’t see him that day either.

On March 5th in 2012 I had the “prophylactic” bilateral mastectomy. The one that ended up being stage 1 DCIS. Quite the surprise party.

And while I don’t even miss my old boobs, the new ones get scrutinized a lot more than the old ones. Well meaning surgeons, they say things like “that kind of volume falling away is normal,” or “we can even that out whenever you want.” The thought of someone coming near me again with a scalpel right now makes me ill. They will have their chance – years from now when these girls have to be replaced. Maybe then I will have time to care more.

The last 2 years have been a whirlwind. Well…maybe even before that. The scope of the changes in our lives in recent years require more than I can muster in a 10 PM post. But, being a numbers person…

Between Meghan and I we have had 5 surgeries in the last 2 years. She has me beat 3 to 2. But, I have lost more body parts. I am down 2 breasts, a uterus and 2 ovaries. She lost her thyroid, and a vascular cyst in her hand.

I am still crossing my fingers about my spleen. That one’s up for MRI in April. Hoping the 4 tumors there are behaving.

There comes a point where you have to laugh I guess. People think “Oh no! A mastectomy!!”

I think – “Whatever it takes…” But then again I had a pretty good teacher. (XO MOM)

I guess it’s all about perspective.

Meghan is really into identity, and figuring out where she belongs. This week I bought her a “Previvor” T shirt. She was thrilled to wear it to school today. She takes the opportunity to explain genetic cancer risks whenever she can. While I am happy she is confident I shudder at reality.

This is only stage 1 in her life as a previvor, staying one step ahead of genetic cancer risks looming large. This is only the beginning.

We run from doctor to doctor. We alternate surgeries. We try to laugh in between as we deal with the rest of life. Time is very difficult to balance. The constant running to doctors and the anxiety of waiting for them to find “something” can literally make you insane.

If you let them.

And I think that’s probably the key. And the message.

I am overwhelmed this week. Really fried. Having a tough time keeping it all together.

Then I think…

I was ahead of thyroid cancer 20 years ago before I knew the depth of the risk.

I am 2 years beyond the threat of breast cancer.

My girl is weeks past the looming thyroid cancer that threatened her.

Two years. New boobs. No sagging on this 40 something gal.

Plus I am a HELL of a lot better off than I was two years ago at this time!

Ash Wednesday. Never raised to “give up” for Lent. Rather to use it as a time for focus.

Time to get out of this funk. Forget November. Time to be thankful is right now.

And today I am thankful for this little girl whose diagnosis saved my life.

My body may be 40, but my boobs are only 2!

Thankful to God and this little chick!

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

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!

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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)

No more “Toxic” environments

Published on April 7, 2013April 7, 2013 by beatingcowdens2 Comments

Almost a year ago – in June of 2012 – my husband was introduced to Isagenix, a nutritional program designed to help him shed some unwanted pounds and help him feel better.

You see it had only been a few months since his wife and daughter were diagnosed with Cowden’s Syndrome. Meghan had had knee surgery (her 4th) in February of 2012. I had my mastectomy, with the subsequent DCIS diagnosis, in March, and a hysterectomy in May. By June the stress eating was evident as he just didn’t feel well. We all needed his energy level to stay high. There was certainly no time for our anchor in the storm to get sick or run down.

So, with the guidance of a friend – an Isagenix consumer and “pro” herself, we got him started on a 30 day program designed to help cleanse his body of unwanted toxins. The thirty day program was a breeze for him. He is one of the most determined people I know when he puts his mind to it. It wasn’t long into those 30 days when he started finishing the extra vegetables at dinner, and choosing water over soda. He just FELT better.

The information below is from the Isagenix website.

http://www.isagenix.com/us/en/cleanse_overview.html

Nutritional Cleansing unlocks the miracle of the human body

Nutritional Cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

Accelerate the removal of impurities from the body.
Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. Many people notice an ability to reach and maintain their ideal weight.

So when the thirty days were up, he chose to continue on a maintenance program. He uses the Isagenix for one or two meals a day, and snacks. It fits in with the “on the go” lifestyle of a NYC employee.

And, as he sees fit – he opts to do a “cleanse day” where he drinks a power packed vitamin supplement and lots of water. He eats very little food. And he always feels better when he is done. He knows now that toxins build up in the body, and he knows when its time to let them go.

10 months later he is down a solid 35 pounds and countless inches. No fluctuation greater than about 3 pounds. It is gone for good. The future is wide open, because as soon as his schooling is over – the exercising will begin again, and the remaining 15 pounds he looks to lose I am confident will melt away.

So how does all this have anything to do with “Beating Cowden’s?”

Here’s how I see it.

I haven’t used the Isagenix program, because I have not had a need to lose weight. But, I have learned so much from reading and watching.

Essential to the program is the release of toxins.

This, I know a lot about from being Meghan’s mom. From a young age it was evident toxins were difficult for her body to process. She seemed to hold onto things, food dyes, additives, “extras” in everything she ate. Nothing seemed to agree with her. An almost exclusively organic diet became essential.

We used Epsom Salt baths in the younger years to help clean out what her body couldn’t get rid of.

I learned about biochemisty, and methylation. I learned about Vitamin B12 and its ability to help her get rid of toxins.

So, over the last few weeks and months, when Meghan’s pain level has gotten progressively higher again, it was time for me to reevaluate.

Looking closely at her diet, there wasn’t much to clean up.

I have Dr. Elice looking closely at her blood. 28 vials this week!

But, it occurred to me that stress – life experiences – could be equally toxic. So I started to wonder if the stressful situations in our life were causing a decline in Meghan’s overall health.

This week we changed churches and schools.

I haven’t heard her laugh like this in months.

There is a spark to her smile, and a hope in her eyes.

Her hip still hurts. There is a knot in the side. There are aches and pains – but somehow… she seems just a little less toxic.

Felix is taking the Isagenix – but we have all benefited.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html# (Message me if you want to know more!)

Christmas Letter 2012, and some unexpected happenings

Published on November 27, 2012November 27, 2012 by beatingcowdens3 Comments

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4^th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27^th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67^th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.

Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!

I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

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See, and just when I thought it was safe…

The cards were in the mail Sunday night. I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away. There had been no braking. No horn. The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?