cancer – Page 7 – beatingcowdens

Moving Forward

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

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

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

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

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

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

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

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

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

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

But a few things have really bothered me.

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

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

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

BUTT OUT!

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

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

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

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

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

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

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

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

In case you are interested…

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

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

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

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

Prophylactic Bilateral Mastectomy – Not just for the movie stars

Published on May 14, 2013May 14, 2013 by beatingcowdens8 Comments

I have been busy this week – working a on a few new projects. Trying to find some distracting hobbies. I need a few things to every once in the while take the focus off the imminent cancer risks plaguing Meghan and I every second of every day.

So, I started talking a lot about Isagenix, the product that did so much to give my husband back his health, and to help him lose over 30 pounds in the process.

This week I have signed up four friends to try to get healthy with Isagenix, and I feel good about advocating a high quality product.

http://meghanleigh8903.isagenix.com/us/en/landing_cfl.html#

This week involved hosting an anniversary party for two overly deserving parents. It also involved some run of the mill nonsense – dealing with ridiculous medical bills and the like, from people who will never “get” what it means to have to spend every day of your life out in front of a chronic, potentially life threatening rare disease, PTEN Hamartoma Tumor Syndrome – or Cowden’s Syndrome, as we usually refer to it.

I do my best every day, to raise awareness of what it is like to live with a rare disease, a genetic mutation that predisposes my daughter and I to so many cancers. I do my best, wearing proudly our denim ribbon, and sharing ribbons with friends and family, to educate the community on our, and other Rare Diseases.

Now, I know its slow going, but I am confident that more people in our community have heard about Cowden’s Syndrome than just a year ago. Of that I am sure. And we will continue our grassroots effort – one person at a time. Until hopefully, one day everyone will know of the “Global Genes Project,” and the 7.000+ Rare Diseases besides ours that are out there.

Today I sat down at a scoring site for the State Math Exam, and two girls I never met before feverishly gushed over the bravery of Angelina Jolie. Having heard nothing of the story, I asked what all the fuss was about.

“She had a preventative double mastectomy because she has a gene that makes it more than 80% likely she will get breast cancer. She is so brave!”

I smiled in spite of myself. I smiled in spite of the irony that had me wearing the T shirt “Yes, these are fake – the real ones tried to kill me!”

I smiled because I thought it was great that Angelina was well and had gone public.

“You know she decreased her breast cancer risk to under 5% now? She is so brave! I can’t imagine anyone doing that!”

I still kept quiet. I quickly checked my Emails to reveal that the blogs I follow regularly were all over the Aneglina story and had eloquently covered it. I listened some more.

Finally, almost on cue, they got bored with their story and asked me about my necklace – the denim ribbon.

I told them I my daughter and I had a rare genetic disease. That the denim ribbon was the symbol for rare and genetic disorders. They asked what the name of it was. So as I identified “Cowden’s Syndrome,” the expected reply was given. “I haven’t heard of that.”

“Well,” in my most succinct conversational tone, “PTEN is a gene that stops tumor growth. Ours is broken so we are more likely to get cancerous and non cancerous tumors all over our bodies. Especially in the breast, thyroid, and uterus.”

“YOU MEAN YOU HAVE THE SAME GENE BROKEN AS ANGELINA JOLIE???”

(Having not fully read any article I quick double checked my suspicions and confirmed,) “No, she has a mutation on the BRCA1 gene. My daughter and I have the same 85% risk of breast cancer, as well as countless other elevated cancer risks.”

“Well if you ever have to get a mastectomy at least you’ll know Angelina did it.”

You know I never much followed the stars. And I am so grateful for Angelina Jolie for being brave and going public. But there is so much more people need to learn. Nothing comes in neat little packages. Nothing.

I stretched out my shirt so they could read. “Yes – they’re fake , the real ones tried to kill me!”

“I had my double mastectomy. Last year. They found cancer. And I am ok. Genetic mutations aren’t just for movie stars. Bravery isn’t just for those who have wealth and power. There are more of us than you think.”

I was grateful when the tests arrived at the table. It changed the conversation. People don’t want to talk about cancer. Especially not young women with genetically caused cancer. It makes them uncomfortable.

I am glad Angelina Jolie went public. I just wish the public would open their eyes to the realities that are undoubtedly right next to them every single day. It doesn’t take a star. Just a conversation.

Let’s talk. Let’s listen. Let’s learn. We can save lives.

Ramblings and Random Thoughts

Published on March 28, 2013 by beatingcowdens1 Comment

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes. Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas. I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

Happy Birthday to my boobs!

Published on March 4, 2013March 4, 2013 by beatingcowdens12 Comments

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…

My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.

Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.

And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.

She can keep her award... — She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.

I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.

And what a year it has been.

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!

HAPPY BIRTHDAY TO MY BOOBS!

Cowden’s Syndrome – You’re NOT the boss of US!

Published on March 3, 2013March 3, 2013 by beatingcowdens1 Comment

“You’re not the boss of me!”

Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.

That’s what we are getting at here.

You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.

See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.

If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.

But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.

You see, Cowden’s Syndrome is not the boss of her.

Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

https://www.facebook.com/photo.php?v=10200149863021946 (To see Meghan’s speech)

Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.

Cowden’s Syndrome – You’re NOT the boss of us.

You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.

Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.

I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.

Cowden’s Syndrome – You’re NOT the boss of US!

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!

There are just no words

Published on February 8, 2013 by beatingcowdens3 Comments

Tonight it’s not about us.

No matter how hard I try. No matter how much I trust. No matter how much I pray. There will be some things I will never understand. Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died. A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us. It wasn’t long before she would take childcare leave to build her family of three. We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school. The two boys are in Junior High. The 8th grader, the oldest, is just two years ahead of the little brother who passed. Their sister is a 3rd grader.

The family is just like any of ours. The mom was a teacher, dad a police officer. They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town. There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family. We chatted when we saw each other, but our kids didn’t play together. We weren’t “close.” Yet still I am heartsick.

I know families who have lost children. I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work. I am in awe of their strength. I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time. There are tragedies, school shootings, traffic accidents, and the like. There is cancer and its far-reaching effects. There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun. It can be downright difficult to bear at times. But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing. We have a warning system. We have constant screenings that will likely protect us from the ominous cancers looking to attack. We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered. I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop. No criminal charges. Just regular kids playing. And then they weren’t. I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer. No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child. The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

Tonight my heart is with the family. The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

Don’t talk about my boobs unless you’ve walked in my shoes

Published on January 27, 2013January 27, 2013 by beatingcowdens19 Comments

“Breast cancer becomes very emotional for people, and they view a breast differently than an arm or a required body part that you use every day,” said Sarah T. Hawley, an associate professor of internal medicine at the University of Michigan. “Women feel like it’s a body part over which they totally have a choice, and they say, ‘I want to put this behind me — I don’t want to worry about it anymore.’ ”

http://well.blogs.nytimes.com/2013/01/21/facing-cancer-a-stark-choice/

The quote above is the last paragraph from a New York Times article published January 21st. I first read about it here in this blog

Preventative mastectomies under fire

And I must agree with “The Pink Underbelly” as my blood is boiling a bit.

I underwent a prophylactic bilateral mastectomy on March 5, 2012. I had been diagnosed with Cowden’s Syndrome, alongside my 8 year old daughter, just months before. I was presented, in January of 2012 with an article putting my lifetime breast cancer risk somewhere around 85%. Cowden’s Syndrome, as you all know – but I doubt the author of this article knew, is a rare genetic disorder with a 1 in 200,000 occurrence. It is a mutation on the PTEN (Tumor Suppressor) gene and causes benign and malignant tumors all over the body – with the hot spots being the breasts, uterus, and thyroid.

I made an informed decision to undergo that mastectomy. It was not a decision reached lightly. My mom is a BILATERAL breast cancer survivor, and even though she does not carry my genetic mutation, I will always believe that her decision for a complete mastectomy is the reason she is with us today – the reason she ever got to meet her grandchildren.

That doesn’t even get me started on the fact that my “prophylactic” mastectomy revealed DCIS – stage 1, a centimeter of cancer in the left breast. Yes, it was contained. No, it hadn’t spread. Yes, I was fortunate, and NO, it WAS NOT the breast that had seen 7 biopsies in the 12 years prior. This one had never been touched. And, the MRI weeks earlier did not pick up the DCIS. So, my informed decision. My smart surgeon. My gifted plastic surgeon. My husband’s support. The support of my boss. The sick days donated from a friend. My raw nerve. My desire to be there for my little girl for years and years to come. The Grace of God. All these things saved my life.

So, I get a little twisted when people infer, and imply that these are decisions made lightly. That women are just randomly having their breasts cut off. This was not a trip to Hawaii. This was not a walk in the park. This was major league, life altering, body changing surgery. There is not a woman I know, who makes this decision without intense scrutiny and research. And, thanks to this blog, and my online support group. I have “met” many of them.

This article says

“We are confronting almost an epidemic of prophylactic mastectomy,” said Dr. Isabelle Bedrosian, a surgical oncologist at M. D. Anderson Cancer Center in Houston. “I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”

EPIDEMIC- affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time <typhoid was epidemic>

Really?

and WHY?

Why not ask us?

Why not ask those of us that have lost mothers and grandmothers and sisters to genetic mutations?

Why not ask those of us who have had countless mamorgrams, MRIs and biopsies, with “suspicious” pathology?

Why not ask us, who have done the research, or read the research on diseases you haven’t even heard of?

Why not ask those of us who, facing our imminent cancer risks, have made a choice to LIVE?

So the article says:

“You’re not going to find other organs that people cut out of their bodies because they’re worried about disease,” said the medical historian Dr. Barron H. Lerner, author of “The Breast Cancer Wars” (2001). “Because breast cancer is a disease that is so emotionally charged and gets so much attention, I think at times women feel almost obligated to be as proactive as possible — that’s the culture of breast cancer.”

Damned right Barron. Proactive. We have kids to raise. Spouses to celebrate life with. Memories to make. Tears to dry. Hands to hold. Lives to live.

Emotionally charged? You bet.

Come by.

We’ll have some coffee.

Then I will tell you about my prophylactic hysterectomy. Reccomended by a top surgeon at NYU. Ten weeks after my mastectomy. Not an easy choice. Certainly not one made on emotion.

Logic. Try logic. And gratitude that the tools exist, and the surgeons exist that are willing to save our lives.

Don’t talk about my boobs until you have walked in my shoes!

“I hope you never lose your sense of wonder…”

Published on January 21, 2013 by beatingcowdens5 Comments

Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.

I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest. I think I am not just sad, but angry.

And that’s ok. I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.

I have said before, and I will say again – if it was just me…

But it’s not. It’s her too. That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.

I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.

I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.

So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.

We will win.

I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

“The Six Month Leash”

Published on January 13, 2013 by beatingcowdens6 Comments

The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.

On Wednesday I got word that I can keep my spleen for at least 6 more months.

On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign. We return for another scan in 6 months.

There is 6 months in between visits to the vascular surgeon. 6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too. There are more, so many more, but you get the idea.

See you in 6 months. So we can do it all again.

I am trying to slow down. Instead of waiting for the next appointment, I am trying to enjoy today. I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.

Truth is if I don’t pull the battery out of that thing, I may lose my mind!

It’s not all neat and clean, this whole Cowden’s mess. Although when I stop to think about it, it is readily apparent that life is far from neat and clean.

Reality is that life is complicated.

Life carries with it no guarantees.

Life is what you make of it.

The struggle for everyone is different. Mine is a struggle with my mind.

Beating Cowden’s is not like training for a sprint. Nope. We are training for a hilly marathon in the snow. We have to build the endurance – and find a way to enjoy the training. Even the really painful ones.

See, if it was just me suffering – it would be easier. But it’s not. And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?” Well, that was downright exhausting, I am NOT looking forward to doing it again, in 6 months, or ever. But, reality tells me there will be more biopsies on the horizon.

So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.

Well, that isn’t actually the goal. The goal is for me to shelf the worry altogether… but baby steps please.

Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously. I fell on Saturday. Over the dog. She was on the sheets on the basement floor that were waiting to be washed. I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.

My calendar tells me we have about 5 weeks until the next major doctor cycle. Good thing. I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.

The 6 month thing… well that’s not just twice a year. That would be neat and clean. No, the 6 month thing seems to just be ongoing. We try to make the breaks as long as possible. You know, so in between we can deal with the new adventures life tosses our way.

I am going to focus, and keep trying to get this one day at a time thing down. I am going to stop and look around more. I am going to try to enjoy the ride. It won’t be easy. But I am on it. I promise.

I need a new pair of sneakers for this marathon training.

Who knows, I might just get back in shape yet!