PTEN – Page 22 – beatingcowdens

Anxiety and the Morning Rush Hour

Published on January 24, 2013 by beatingcowdens5 Comments

And that is how the day began.

Anxiety in full swing before 7 AM. Never a good sign. Especially when the panic attack is coming from your 9 year old.

See, I have a problem with this. And maybe it is where some of my anger comes from. I don’t have a problem with Meghan. I am not upset with her, or her anxiety. I am really just PISSED OFF at the cause of her ceaseless worry. It is against the balance of nature that a nine year old should have to have this much to be concerned about. It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie. She is too smart. And her memory is way too good.

Sometimes, on mornings like this one. I have precious little to say. So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.

And while she is crying about the huge overgrowth that on her gums where she lost her last tooth. I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away. (“LIAR” I hear my inner voice scream..)

Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were. He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth. However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.

Yep. He is a nice man. But, he obviously doesn’t know my daughter doesn’t miss a beat. She was all over that comment for weeks on end. We already had her gums cut once in 2008 for an odd thing that grew over her front tooth. She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.

So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage? I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.

At least she laughed. It’s nice to have a smart kid. One who can respect that there just isn’t anything else for me to say. Some days we have to push on. Even when we are worried and scared. Even when we don’t want to. Even when it’s not fair.

Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.

So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.

They are nice to her there. Really they are. But I cried on the way to my school, just a few minutes away. I am in a rut. I have to get past this anger… for both of our sakes. But lately I just feel mad.

Of course that’s not who you see when you meet us. You don’t see worried, and mad. You see our smiles. See we get life. Both of us do. On different levels of course, but we get it. We know there are so many people who suffer. We know how blessed we are. Our prayer list is endless. But some days we just “keep swimming…” and…(we)

I got the message at about 12:45. Meghan’s school nurse had called. I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.” She was complaining of lights in her eyes. She was “off.” After 5 years in that school, I have received limited phone calls. When they call – I answer. So, with permission I headed out early.

I got my girl home. We sat in the dark room. I rubbed her eyes. She had a bit to eat. Eventually she tarted to perk up…the anxiety had gotten the best of her. All the makings of a migrane at 9. DAMN this syndrome. Leave her ALONE!

And as we wrapped up for the day. Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy. With a kiss and a smile she headed to bed. God, I love that little girl.

I got in the car to check in on my grandparents. The phone was off the hook. This is an ongoing event, and one we share lots of laughs about. I arrived to find them in their recliners, watching TV. The phone was in Pop‘s pocket – on.

I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”

“How old are you?” I asked.

He winked and smiled, and told me he forgot.

I guess it didn’t matter because everything was working just fine. But some days I feel like I might as well be 93 and he, 39.

As I drove home I thought about genetics, and environment and all those biology classes I hated in high school. I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment. I grew up in a climate of a “can do” attitude. We did… because that is what needed to be done.

Still, at 92 and 93 my grandparents do what needs to be done.

I decided while I did not gain all their good genes, I gained their drive and determination. Their faith,stamina, and hopefully some of their wisdom.

I will get out of this rut. Cowden’s Syndrome will not own us. It will not win. We can do it, and we will.

“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!

My Little Ambassador

Published on January 17, 2013January 17, 2013 by beatingcowdens15 Comments

Meghan is really into raising awareness of Cowden’s Syndrome and other Rare and Genetic Diseases. She is extremely excited about “World Rare Disease Day” on February 28th.

We are in the process of making MANY denim ribbons that look like this. She plans to ask her principal tomorrow if she can give one to every staff member and student in the school. She wants to do this purely to raise awareness. Her ideas for fundraisers are developing separately.

She has also researched statistics on Rare Diseases, and came up with this sheet to attach to the ribbons.

February 28^th is World Rare Disease Day

My name is Meghan… and I have a Rare Disease called Cowden’s Syndrome. It is a genetic disease that affects only about 1 in 200,000 people. (That is only about 1,500 in the whole USA!) One of my genes called PTEN is broken. It causes tumors and vascular growths in my body. I have lots of surgeries. My Mom has Cowden’s too. We are luckier than a lot of other people with rare diseases.

I learned some information about other rare and genetic diseases;

1. There are about 7,000 types of rare diseases.

2. Some of the rare diseases affect less than 100 people.

3. 50% of all rare diseases affect children, and are responsible for 35% of the deaths in the first year of life.

4. 1 in 10 Americans are living with a rare disease.

5 About 350 million people in the world are affected by rare diseases.

6. If all the people with rare diseases lived in one country, it would have the 3^rd biggest population in the world.

7. 80% of rare diseases are genetic. They can present at any time in a person’s life. My mom was much older than me when she was diagnosed. I was diagnosed first!

8. There are no cures for any rare disease, and only 5% of them have any treatment.

9. Over 50% of all rare diseases have no foundations, support groups, or anyone looking for a cure.

10. Cowden’s Syndrome isn’t fun, but when it comes to rare diseases, we are some of the lucky ones.

We support, and get our information from www.globalgenes.org. Their slogan is “Hope it’s in our Genes.”

That “play on words” is why we wear denim, and denim ribbons today.

In addition, because maybe there was a chance I couldn’t get any more proud, she received a book assignment from school. She had to write a story where the main characters were two dogs named “Casey and Bella.” She decided to write about what meant something to her.

I have no idea who will win, but you know who gets my vote.

Everywhere she goes, she seems to take an opportunity to tell someone about Cowden’s Syndrome. She says people need to know. She uses our necklaces to start all sorts of conversations.

She dreams that one day they will be as common as the “pink ribbon,” or the “puzzle piece.”

I think she is just the girl to make it happen.

Someone in one of my online groups asked if we knew anyone famous with Cowden’s Syndrome.

Does… I know someone trying to make Cowden’s Syndrome famous count?

I love my little girl!

Lessons Learned in 2012

Published on December 31, 2012December 31, 2012 by beatingcowdens9 Comments

What a year! Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect. As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital. Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be. The more things change…

In 2012…

I lost the ability to say, “I can’t.” Instead I gained “Nerves of Steel” attacking this syndrome head on.

I lost my self pity and gained determination watching my daughter start her own awareness campaigns.

I lost my fear of driving on highways and in big cities. Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.

I lost my fear of ridiculously large medical bills. Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.

I lost about 3 more sizes, and have finally settled into clothes that fit.

I lost my muscle tone, as wild days kept exercising at bay.

I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.

I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…

I lost my fear of breast cancer and those ridiculous breast MRIs!

I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.

I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.

I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.

I lost my uterus, and my ovaries, but I was done with them anyway, and I gained permanent birth control and instant hot flashes!

I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.

I lost my old cell phone, and finally traded it in for a “smart” phone.

I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.

I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”

I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.

I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall. I always loved them with all my heart, but I will remember how lucky I am each and every day.

Family shot in front of the New Year's Eve Ball. — Family shot in front of the New Year’s Eve Ball.

In 2012 I gained tools I will use every day as I move forward.

I gained…

Determination – that we will beat this!

Focus- on what matters most.

Perspective- that everyone suffers.

Forgiveness- because negativity hurts me more than them.

Gratitude- for the kindness of family, friends, and strangers.

Compassion- as I watched my little girl continuously open her heart to others.

2012 had plenty of hard times, but like my car, it was far from a “total loss.”

Here’s to the lessons to be learned in 2013.

Wishing you all health and happiness!

Why worry?

Published on November 17, 2012November 17, 2012 by beatingcowdens1 Comment

That feeling. The one where the doors are about to close, and you have to make a decision. Are you going to fight your way out… or give in and let them trap you?

The pile of bills and papers on my desk increases by the moment. I am usually more on top of it than I have been these last few weeks. When I say bills, don’t misunderstand. We can pay our bills just fine. The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all. I am not the type to write the check until they have exhausted all options. I need to get to the bottom of that pile. Make those phone calls. Do their job for them.

qq1sgMessyDesk — Ok so it’s not quite that bad, but its getting there!

I could say I lack the time, and to some extent that would be true. They want to speak during business hours. I am available ideally, from about 8 PM until 2AM. But, I think I also to some extent lack motivation. It would be prudent to address this cycle of bills before our next round of appointments next month. Meghan has a few critical appointments during the winter break, and a few at the beginning of December. Not to mention the eye doctor that I still haven’t rescheduled. And the orthodontist – UGH, have to call the dental carrier too!

I am used to this to some extent. I have never known any different. It has been my whole life and Meghan’s too. Only during the last year did it get a name. But the reality is still very much the same. Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected. It always works out. But it does get a bit old.

This month it has been especially hard to focus. Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected. We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help. We all do what we can. Certainly a time to “Pay it Forward” here.

Then there is my dears sweet Grandma. Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU. She is home now, improving daily. She is walking with a walker, weary of her time in bed, and anxious to move as much as she can. She is such a fighter. I am so incredibly impressed by her determination, but that is nothing new. At 92 she is blowing expectations out of the water. She is amazing, and inspirational.

And, so is my Pop. He loves Grandma so very much that it is almost breathtaking to watch. I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.

65-years — Ok – December 30th it will be 67 years, but the concept is perfect!

I was lucky enough to spend the night on Thursday. After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep. True love at its best.

Today, a VERY kind nurse. A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head. Like an angel sent to us, she lovingly removed the sutures, and later thanked me. She was awed by the love she witnessed between my grandparents. She would take no money. She just was so thrilled to help. She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.

Grandma doesn’t have Cowden’s Syndrome. As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome. That genetic defect was handed over to my daughter as well. But Grandma doesn’t have it. I am sure. What she has is an intense, loving, fighting spirit, and a desire to be well. That – I did inherit!

The piles are larger than I like. They are everywhere, and I admit to feeling a bit stressed about the lack of control. But, I am smart enough to be aware of the blessings around me. To be thankful, and have a heart full of gratitude. For it is the little things that make all the difference.

“Keep Swimming!”

Published on November 12, 2012November 12, 2012 by beatingcowdens2 Comments

There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.

I saw this today and it made me think of some of the people I have met over the last year. Some of them don’t talk to each other any more, but I talk to them all. It’s just who I am.

Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.

This has been a tough week for me. It happens to the best of us. I know I am usually pretty positive, but this week it has been harder than normal. So when I shared some of my struggles she said to me…

I thought about it for a while. And you know what? It made perfect sense. She has had plenty of struggles of her own. Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group. She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.

I think, to some extent that is what we have to do. Look it in the face, whatever it is… take a deep breath and keep on swimming.

Today is my birthday. I turned 39. And I am proud to say it. I have no intention of staying here either. Next year will be 40, and so on and so on.

But with my birthday comes a flood of emotion. This is just over a year since my Cowden’s Syndrome diagnosis. It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.

Keep Swimming…

It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS. I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed. Old familiar sweaters need to be replaced. Nothing is quite where it used to be.

Keep Swimming…

It has been six months since the complete hysterectomy. The one Cowden’s Syndrome called for – way before its time. So as my body celebrates 39 – my hormones clock in somewhere around 55. And with no hormone replacements in the cards, we are learning to get used to each other. Not uncommon for me to go from a turtleneck to a t-shirt. Good thing there aren’t too many clothes to pick from.

Keep Swimming…

My birthday has been charged with emotion for years. Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day. Despite my best efforts, at some point emotion overtakes me. I have always been grateful for our deep connection – so deep that I named my daughter for her. But, somehow 21 years fade and the feelings are that of yesterday. Oh, how I miss her.

Keep Swimming….

My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable. Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on. I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.

Keep Swimming…

GiGi fell during the storm. Two weeks ago today we were very scared. Today she walked with help around the dining room table. Her feet still work, she was excited to discover. Surely this is a realization worth celebrating. Happy birthday to me.

Keep Swimming…

We went to Midland beach today with a few small things. A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning. Sometimes paying it forward is the best birthday gift you can give yourself. If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference. It matters.

These people. The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy, they certainly are showing their ability to…

…Keep Swimming…

Such an intense day. At times I laughed. At times I cried. At times I was proud. At times I was sad. Life is changing every single day. The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.

I looked over my blog today. It has truly been a journey. And if you got this far you are reading my…

100thpostpic — Who knew I had this much to say?

9,000 views — Amazing you people find this interesting! 🙂 But I am grateful to have you.

Tonight I am reflective. I am enjoying my family and my wine. I am thankful. And I am tired.

It has been a long year. But a productive one. A year unlike any I had ever imagined. The journey here is far from over. I am thankful for my close friends, and my cyber friends. I am thankful for those of you who read, who I will never know. I am thankful for reality checks. I am thankful for celebrations, and laughter and tears – for they all make me who I am.

This is definitely a marathon, not a sprint. Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.

I am trying – with a little help from my friends.

Reality Check

Published on October 11, 2012October 11, 2012 by beatingcowdensLeave a comment

It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.

Theodore Roosevelt
26th President Of The United States

I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

Dale Carnegie
American Author

The whole idea of living with a chronic disease really just stinks. I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with. But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.

Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are. I know they would love to hear that we are great. They’d like to hear that all is well. I could tell them that there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night. I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl. I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result. Some days it means my heart is in my throat – but I don’t know how to tell you.

I remember when I used to love to eat. Lots of food – carbs, junk food, candy. I used to have an appetite, and enough energy to exercise too. I remember several sizes ago when I had a closet full of clothes. Now I have enough pants and shirts to get me through. I remember when my old boobs filled out my tops.

I sometimes think to myself, “this is not my real life.” Raw fatigue. Nerves. Stress. Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease. Has it really only been a year that life has been this complicated? There were always issues. But a year since the diagnosis. The confirmation that these risk factors belonged to us. That they were real, and pressing.

And yet to look at us – you would never know. You wouldn’t know of this other life we lead. This “elephant in the room.”

Everyone has something. I have said it a million times before, and I will say it again. It could ALWAYS be worse, and there is ALWAYS something to be thankful for. I am grateful for that reality check.

When I don’t call you back for a few weeks. Or, when I start sending cards late, and losing track of dates. Don’t worry too much. We are treading water here. We will get by. Just cut us some slack. Some days it just doesn’t all fit, and some days there is just not enough wine.

Just Another Day “Off”

Published on September 26, 2012September 26, 2012 by beatingcowdens4 Comments

We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.

Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read. If it bothers her. It comes out. Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.

We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!

before braces 92612 — Award winning smile – even before the braces!

Friends…

Published on September 17, 2012 by beatingcowdens1 Comment

It was hard to believe it had been so many years since we were all together. It was even harder to imagine it was over 15 years since we all shared space, time, and our souls in SUNY New Paltz. It was a far cry from most of our late nights at P & Gs.

As a matter of fact , as we sat across from each other at The Cheesecake Factory in New Jersey, two of them pregnant and all of us chatting about our children, and old times -often in the same breath- you never would have imagined the amount of time that passed since we last spoke – face to face.

But the food was decent, and the conversation refreshing, and I found myself wishing it could happen more often – or last a lot longer. It hardly seemed right to get up when only a few hours had passed. But each of our lives called us away. To children, and husbands, and lives that needed tending to.

As we hugged each other, and I watched my two friends ‘baby bumps” bang into each other, I was reminded of the reality that real friendships truly do last forever. We picked up with each other as though graduation had been last week, and although there was so much more to say, there wasn’t a moment that lacked conversation.

Facebook has been a blessing for us. A way to keep tabs on each other, and keep track of the major happenings. These ladies used Facebook as a means of support for me over the last six months, when some days it seemed the sky was falling. They reached out to me – as if we were still next door neighbors in New Paltz. Facebook arranged our meeting last night. As a simple group message “Hey can we pull this off?” – and I am so grateful we did.

See in order to stay sane, life has to be about more than Cowden’s Syndrome. It has to be about more than knee pain that wakes my girl up in the middle of the night after only 4 days without her Celebrex. (At least we tried!)

Life has to be about more than infections that scare me half to death, viruses that take hold way too fast, and doctors that want to fix it all but don’t know how.

It can’t always be about tumors, and, “Are they growing or not?”

It can’t always be about the tests and the screenings, like tomorrow’s colonoscopy.

KBEC — The recovery room at tomorrow’s colonoscopy site!

Those things are always going to be part of our lives – forever. They aren’t going away. That is the reality of Cowden’s Syndrome.

But the real reality, in the world where we know too well that “Everyone has Something,” is that it is necessary to make time to hug old friends. It is helpful to the soul, to relive old times, and to sometimes sit and have dinner with people who stood beside you years ago, and who have made it clear they are prepared to do the same now.

Biting through the cage

Published on September 11, 2012September 11, 2012 by beatingcowdens9 Comments

My dog Lucky is a bit neurotic. She just is. So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though. No one, or thing – really likes to be caged. The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time.

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome. We feel like we are stuck, in a locked crate. We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me. I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process. And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night. It made another showing of about 102 and then that was it. She stayed home Monday with our friend Patty, and was treated like the princess she is. By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night. He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having. Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI. She is going to get back to me. I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go. She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her. I didn’t see much.

Tonight she said it was much worse. There is a growth on her tongue. Right on the edge. It grew today. During the day. No idea why. No clue what to do about it. I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired. Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time. Maybe Lucky las the right idea.