beatingcowdens

Catch-22

Published on October 10, 2013 by beatingcowdens1 Comment

A catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.^[1]^[2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over.

-Wikipedia

You know a person could go crazy trying to keep themselves free from toxins. These days it seems to be an all consuming, and virtually impossible task. Sometimes I wish I knew a lot less. Sometimes maybe ignorance is bliss. And cheaper. And a LOT less stressful.

But then again, I think my girl would be a whole lot worse off. And therein lies the “Catch-22.”

Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.

Back in the summer of 2005 things were definitely NOT ok here. I knew it deep down where that Mommy gut nags at you. We had speech therapy. We had occupational therapy. And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable. We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”

So, I read. I researched. I altered her diet. I added some key supplements. I started to see results – but not enough.

This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan. He told us he could help. And he has.

We have worked together through dietary interventions. Supplements. IV treatments. Countless blood tests. And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5

He has been my sounding board through lots of ups and downs. I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.

He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches. “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.” Not too often these days will you find any medical professional with that confidence or drive to do what is right.

Through the years we have visited his office at least 3 times a year for lengthy consultations. He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue. I have listened to many, and ignored a few. Conversations have evolved over the years as we have each stayed up to date on current research.

The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal. He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.” Meghan “doesn’t fit in a box,” he would always tell me. Never let them try to put her in one.

And, perhaps truer words have not been spoken. As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.” But, since we are yet to put our finger on it – we continue doing the best we can.

Cowden’s Syndrome involves screening tests. Regularly. For cancer, and vascular malformations that can form anywhere at any time. X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.” So MRI is the test of choice. MRI with contrast that is. Gadolinium to be exact.

I’ll get back to why that is important in a bit.

We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned. In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.

We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially. We have gone from treating with Advil to treating with 200 mg a day of Celebrex.

We have spent the last few years trying to help her stay calm- only to watch her anxiety mount. In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss. Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.

We understand the role of autoimmune disease and stress, and toxins. We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene. We understand that there is external and internal stress.

We do what we can to control stress on the body. We make sure she has “down time.” We try to help her get rest. We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy. We eliminated almost without exception preservatives and dyes. We bought new pots and threw out the plastic plates we used to use sometimes.

We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.

And even at that – there is an awareness that we can NOT control it all. There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly. We are aware of toxins in the air, in our soil, and even in our filtered water. We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.

We run, like Indiana Jones, out in front of the boulder, in constant motion. One stride ahead…

Chelation

Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/pharmacologicalandbiologicaltreatment/chelation-therapy

The term has been spoken over and over again by the “bio medical doctor.” Chelation is the concept I found every single excuse to overlook and ignore. The idea shook me to my core.

The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck. Let’s try to clean her out.”

She went for her first treatment last month. After the treatment there is an 8 hour urine test to measure the toxic metals excreted.

She went for her second treatment today and I got to look at the printout of last month’s urine analysis. So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.

There are several metals that were high. None of that made me happy. But the most disconcerting of all…

The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4. Her output was 190. No I am not forgetting a decimal.

Gadolinium. Necessary for the cancer and vascular screenings set to be part of her life forever. Except apparently her body can’t seem to excrete it.

Catch-22

Keep Swimming…

Swimming Upstream

Published on October 9, 2013 by beatingcowdensLeave a comment

The phrase “packed in tighter than sardines” was in my head as Meghan and I tried to navigate the overcrowded local middle school fair tonight.

It was hot. Hotter than it should be October 9th, but exactly as hot as an overcrowded Public High School cafeteria is on your average fall day. It was stuffy, humid, and uncomfortable.

As we traveled from table to table, remarking how much easier it would be to see over the never-ending crowds if there were some signs indicating which school was where – we just tried to get a feel for the place, and for each table.

We went interested primarily in two schools, but open to read and learn about more. One school is small. It works off a lottery and opens only 150 seats a year. The other school has over 1100 students.

And as I pondered some pros and cons based on size alone, I was reminded of something a friend from work said a few months back. I may not have her exact words, but it was something to this effect,”The problem with where we live is that something becomes popular, just because a few people go there. Then it gets more popular, and more people go, but no one ever investigates the quality. It develops a reputation based on one feature, and people don’t look farther.”

There I was, one of those people. I kept saying I wanted my kid in the lottery for the school, “because its small.” I was not impressed by the people at the table. I was not impressed by the lack of information about the school. I was not impressed at all. I may still go to their open house, but it will be with a very open mind.

Then there was the other school. The one with 1100 kids and the principal himself standing in front of a well constructed information board. He answered questions, clearly, honestly and patiently. He spoke with confidence about the school. He invited parents in during the school day for tours. He looked every parent in the eye and spoke as if their child was the most important thing on his mind right then. And, even if he doesn’t remember any of them tomorrow, he proved himself to me. It’s difficult to fake the sincerity involved with shaking someone’s hand and looking them in the eye.

And we were about an hour in to this ordeal when Meghan’s knees began to give her trouble. Still pressing on – because that’s what she does – I knew time was of the essence.

I also knew it was time to have the conversation about “barrier free” schools. See, in the city of New York, most schools have multiple floors. This is fine for most kids, and for general physical fitness. But when your 10- year -old has already endured 4 knee surgeries…

There will be discussions about the IEP, about the 1:1 health paraprofessional, about the physical therapy, and about the appropriate placement for Junior High for my girl. Because wherever she goes, the Cowden’s Syndrome goes too. So we need to find a place where they are BOTH welcome.

Every which way I turned tonight I ran into old friends. There were some I haven’t seen since preK, and others we connected with at various points along the way. The kids are older now, almost young adults. I can still see them running on the lawn after PM session, or on the soccer field.

All of us looking, somewhat stunned, somewhat unsure of what the right place will be for our child.

As I drove past Lowe’s this weekend I saw a Christmas tree and almost got sick. “Wishing our lives away,” I thought to myself. Except tonight several hundred parents and children stood, on October 9, 2013 contemplating placements for September, 2014.

I find this just so ironic, considering mine is clearly not the only life that can’t plan a week in advance.

I put Meghan in a chair to rest her knees while I finished the last of my conversations with two lovely, helpful women. And as we began the trek back to the car I had a million questions racing through my head.

There is clearly a lot to do, and a lot to think about.

But, that will have to wait. Tomorrow’s appointment is in Long Island, and even when they try to fast forward my life, it reminds me that we can only travel one day at a time.

Almost Perfect… works for me!

Published on October 6, 2013 by beatingcowdensLeave a comment

Poetry By Shel Silverstein

“Almost perfect… but not quite.”
Those were the words of Mary Hume
At her seventh birthday party,
Looking ’round the ribboned room.
“This tablecloth is pink not white–
Almost perfect… but not quite.”

“Almost perfect… but not quite.”
Those were the words of grown-up Mary
Talking about her handsome beau,
The one she wasn’t gonna marry.
“Squeezes me a bit too tight–
Almost perfect… but not quite.”

“Almost perfect… but not quite.”
Those were the words of ol’ Miss Hume
Teaching in the seventh grade,
Grading papers in the gloom
Late at night up in her room.
“They never cross their t’s just right–
Almost perfect… but not quite.”

Ninety-eight the day she died
Complainin’ ’bout the spotless floor.
People shook their heads and sighed,
“Guess that she’ll like heaven more.”
Up went her soul on feathered wings,
Out the door, up out of sight.
Another voice from heaven came–
“Almost perfect… but not quite.”

When you are a teacher you will sometimes find the craziest things echoing through your subconscious. Today, over and over I kept hearing the line, “Almost perfect… but not quite.” It wasn’t until a few minutes ago that an internet search led me to the poem above. A fan of Shel Silverstein for years – undoubtedly this is the message my “inner self” was trying to get across all day.

We woke up late this morning. Later than I wanted to. Well, let me rephrase that. I actually WANT to sleep VERY late, most of the time. However, the reality was that there were things to do, bills to pay, places to go and people to see.

So, I was a bit disgruntled early this morning. I struggle with this feeling most weekends. I want to badly to use my time wisely. I want to stop and smell the roses, but I battle with the consequences which leave me buried behind paperwork for home and school, bills to sort, letters to write, and laundry to do.

I am too often a bit like Mary Hume in the poem above.

I expect perfection, primarily of myself. I am always, and have always been, my own worst critic.

Why isn’t the house clean? Why aren’t all the bills paid? Why can’t I manage the money better? Why can’t I find time for fun? Why can’t I figure out an exercise schedule? Why can’t I get organized? Why does it take me so long to follow up on things? How come I can’t manage to keep up? Why don’t I see my family and friends more often? Why doesn’t Meghan feel well? Could I have gotten her to a better doctor? Are there better answers? WHY?

You can insert all sorts of things there, but my guess is that I am not alone. Although I kind of hope I am, because I am actively working to get out of that place. Its not healthy at all.

Because, really? Does it matter?

Don’t get me wrong. I am not at all suggesting that we just toss it all to the side and let everything go, but is the fact that I am one set of sheets behind because we went apple picking yesterday really the end of the world? I think not. In fact, I am sure the memories we made will stay with us far longer than (the horror) having to change the sheets on a Monday… or dust on a Wednesday… or just clean the floor, fan, window, when it’s dirty.

We got a roof 2 weeks ago. My screens are the dirtiest they have ever been. They will get washed.

It’s October 6th, I changed the calendar today. The world didn’t end because I missed the 1st.

I like order. I like neatness. And truth be told, with the medical battles, quests, and journeys I can not afford NOT to be organized. But, I am learning, or trying to learn not to obsess.

See everything changes on a moment’s notice. There are no guarantees. In our lives, where Cowden’s Syndrome is the proverbial Elephant in the Room at all times, this is especially apparent. But maybe in some way we have a bit of an advantage.

I plan ahead as best I can. I organize my files, my lesson plans, and my doctors appointments. I do all of this with the understanding that one day I may have to stop it all and address a health issue. So, when I can I spend a few extra moments being organized.

But, because we know all too well how fast things can change I am learning to stop. I am learning that its ok to make a rubber band bracelet some days, or to pick some pumpkins, or to watch the swim practice and marvel at the health that allows it to take place instead of burying myself in more work.

It’s not just our lives that can spin out of control. We just have notice that its “likely” to happen. I feel for the MANY, and I mean WAY TOO MANY people I know whose lives are spinning wildly as they try to gather themselves.

What do you do?

You have to get up and get moving and get about each day as best you can. You have to maintain some semblance of order. You have to pause.

In that quest for perfection we can lose ourselves all too quickly. We can miss it as it flies by.

Tonight I worked on the checkbook. I say “worked on.” I used to say “balanced,” but that would just be a lie. Yes, I am a math teacher. No, my checkbook is no longer to the penny. I just won’t sacrifice the extra hours. But its close enough that I haven’t bounced a check in 20 years.

Almost perfect… works for me.

There are way more important things that need my time.

Superheroes…

Published on September 30, 2013September 30, 2013 by beatingcowdensLeave a comment

In honor of the last day of September – Childhood Cancer Awareness month, I am re blogging my own post from January of this year.

beatingcowdens

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

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

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

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

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

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

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

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

They navigated the floor like…

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Stuck in the middle

Published on September 29, 2013September 29, 2013 by beatingcowdens1 Comment

The sermon in church this morning had many parts. And I am never sure if what I take away is the intended meaning, but the idea of being “stuck in the middle” spoke to me.

I don’t mean it in the sense you might think.

See, we are not poor by any means.

We are not rich by any conventional standards either. But, if you asked a person who lives in poverty – well to them we would likely be affluent.

It goes back to a concept that I think about a lot.

It’s really all about perspective.

There are many angles to every situation. The angle, or the lens you choose to view it from determines the outcome, and to a large extent the path you follow.

Now, as my daughter and I live with Cowden’s Syndrome, and all its ruthless cancer causing, malformation growing, pain invoking perils, I do NOT mean that if I look at things the right way, or if I am positive enough that that is any guarantee of good health.

What I do mean is that HOW we handle, not only the illnesses we encounter, but the threat of those illnesses will largely determine who we are, our level of happiness, and the effects we have on the people we encounter every day.

We have all been blessed. We all need blessings.

The middle can be a powerful place to be.

There are choices to be made every day. These choices change our lives, and the lives of others.

September is Childhood Cancer Awareness Month.

The fact that childhood cancer even exists is appalling. Meghan and I live with the imminent threat of cancer in this house every day. I don’t go a single day without remembering my daughter’s namesake, my cousin Meghan taken from us by Leukemia at the age of 6 over 20 years ago. But, we could bury our heads in the sand, or we could choose to try and do something to make people realize the number of lives touched by childhood cancer. We can quietly hope it doesn’t happen to us, or we can help the people it HAS happened to.

Friends of mine chose the latter this week. They scheduled a “Cookies for Cancer” fund raiser, and are donating over $1000 to childhood cancer research. I couldn’t be more proud to call them friends. They said we were their inspiration. I find them pretty inspiring.

October is Breast Cancer Awareness month.

I know very few people unaware of Breast Cancer. As a matter of fact some have become sick of seeing the marketing connected with “Pink Ribbons” everywhere you turn.

Breast cancer is an ugly reality. Mom is still fiesty, many years after her battle. Breast cancer messed with the wrong woman there. And me, well, my scars have healed, and I have found all the benefits to these replacements I have to the “superfluous tissue” that was trying to take my life. I cringe when I think of my daughter, and the foreboding reality that this will be part of her journey.

Choices.

I choose to empower my daughter with stories of strong powerful women. Those she knows and those she does not. I choose to teach her about early detection, awareness, and victory. Together we are empowered to TALK about our story. The more people who hear about Cowden’s Syndrome, the more people will realize. Lives can be saved. Breasts, well maybe those can’t be saved – but let me tell you about the freedom of being almost 40- perky, and often braless. I’ll bring you over to the bright side.

Choices.

Meghan’s health has been a struggle since birth. Our treatments for her have evolved over time. Long before we could afford it we took a credit card and a trip to an integrative medicine doctor who is still a huge part of our lives today. We learned that for her, pure, natural, gluten, dairy, and soy free food was as necessary as sneakers and clothing that fit.

Slowly we evolved into a house that ate better. We took what we had learned about Meghan’s needs and transferred them to our own.

Except habits die hard, and in the months following our Cowden’s Syndrome diagnosis, and my mastectomy, and hysterectomy, my husband ate his way through the stress to the unhealthiest I had ever seen him.

Realizing we need him- healthy — all the time. We connected with Isagenix, initially to help him lose weight.

Well he did. Fifty pounds. And its still gone. And then I read and read about the company and things came together for me. I realized everything I had learned that Meghan needed was here, all in this organic superfood. So we bought her some too. And then there was stamina and endurance to complete workouts in the pool. So my husband told me it was my turn. Nutrition, simple, quality.

Choices.

The first 10 months on Isagenix we told no one. Then we felt guilty NOT telling everyone, about the health we were experiencing, The first year we paid for the products, and sacrificed where we could. Now, Isagnix pays us because we share what we have learned and experienced.

This week Meghan’s pain was bad. So much so that she was finding it difficult to walk on Friday. We are trying desperately to lower her NSAID medication, but her body won’t allow it.

Friday I was discouraged – and inspired. Stuck in the middle I guess. I was so heartbroken for her agony, and so proud of the tenacity to get into the day, and DO IT.

Choices.

They are tough to make.

We are faced with countless ones each day.

The choices we make are directly connected to the quality of the life we live. Our desire to do the best we can with what we have, where we are – essentially defines WHO we are.

Maybe we aren’t “Stuck” in the middle, but rather placed there gently through grace.

Choices.

Perspective.

Balance

Published on September 23, 2013 by beatingcowdens1 Comment

I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.

September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.

So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.

This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.

This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.

This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.

This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.

Ok - so maybe not QUITE this bad.. — Ok – so maybe not QUITE this bad..

This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.

I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.

There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.

We help her rest. We feed her the most potent superfoods we can buy…

She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…

And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…

Life is about balance.

September is chaos. It just is.

But the nice thing about September is its followed by October.

And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.

And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.

Maybe that’s where the balance comes in…

I WIN!

Published on September 13, 2013September 13, 2013 by beatingcowdens2 Comments

Yep. Finally the taste of victory, and I will savor every single drop. I know all too well these moments don’t come often.

Sandwiched between way too many doctor visits this summer, were a few other pressing problems.

We need a new roof. Well, that one is cut and dried. Pension loan. Money available – job before the winter.

The bay window in the front of the house needs to be replaced. That one, not as easy. Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked. WAITING, and following up, and WAITING, as the wood shrinks and peels.

And then there was the car.

The car we bought in December after this happened in November.

The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up. It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.

If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.

In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.

The navigation was also connected to a blue tooth that went right through the car speakers. My phone synced to the car and I could talk without worry.

I was thrilled – when I wan’t frustrated. Or lost. Or left dropping calls, or using my Iphone to take me places.

The car wasn’t working right very early in the game. We ignored the “glitches” for a few months thinking it would get better.

Then in April it made its first trip in for service- only to be declared healthy.

Until it wasn’t.

Then it went back in. This time a new radio.

Nope – that wasn’t it.

And so on and so on and so on and so on.

I drove more rental cars this summer than I ever want to drive in my life.

During one stretch the car spent 11 days in the service station. They said they couldn’t fix it.

They called in the field tech (“Magic Wand Guy.”) He said it was fine.

Nope. Not fine. My Iphone is full of voice memos of me trying to get places. It took us 18 minutes to get started on the trip to the Philadelphia Zoo.

At one point I drove around the neighborhood giving it addresses. It was 2 for 10.

And the sound on the blue tooth just kept getting worse.

I didn’t know much about the Lemon Law, except that it exists. But hidden inside the glove box of my car was a handy book explaining it. It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.

I read.

In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office. The deliver confirmation says it was received July 22. I wonder when it hit the shredder?

Next, I opened a case with the Better Business Bureau. They closed it when “Magic Wand Guy” was coming to fix the car. After he declared it fine, and before I even drove it off the property, I tried the system again. Still broken. I reopened the case.

When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.” I was really hesitant. He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer. I trusted him.

It took so many hours to prepare the documents. I wrote a narrative that was over 10 pages. I faxed. I Emailed.

All of this in between dragging ourselves back and forth to the dealer in between doctors.

Today it paid off.

I finally got that call from corporate.

They are replacing the car. No out of pocket cost to us at all. We went tonight to decide on a color. The VIN number has been assigned to us. 7-10 days for the paperwork.

Then I drop off the old car and drive away with the new one.

If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!

However, with so much time spent together I developed a respect for the Service Manager. And, in the end he was our advocate.

And tonight, while we filled out papers, with no commission to be made, the salesman was kind. He was friendly and patient. He was personable and understanding. He got that WE matter.

We chose black. Time for a color change.

So many things go wrong, so often. Hanging onto the anger will make you sick. And, well – we haven’t got time for that.

Sipping my t+Chai I have peace.

Talking on the phone to my father before he told me a story. The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time. I was stressed about leaving her, and about the whole mess. He told me tonight she said, “I don’t know why Mommy’s so upset. She’ll get this taken care of.”

Tonight when I was so happy she said, “I never doubted you.”

Her confidence. Whatever I did, by whatever grace I have it- I hope to keep it for a long time. It’s quite the compliment.

I don’t keep a win/loss column. It would be too distressing. But tonight – we win. And for tonight, that’s just plenty.

Life Changed Forever

Published on September 11, 2013September 11, 2013 by beatingcowdensLeave a comment

September 11, 2001 I was teaching second grade for the first time. The kids were so little. ( I am sure you remember where you were too.)

The school was so well run, it was hours before I would know exactly what horrors had transpired so close to us.

I work in a school, that is part of a community where parents who are police, and firefighters are the norm. Not to mention our teachers – married to FDNY and NYPD.

Our community is so close to Manhattan, most of our working parents worked down town, or mid town like my husband.

As I watched the students leave, one by one, I was struck with the reality that this day they lost their innocence. That no child would ever again grow up as carefree as I once was.

As the names came out, and the stories unfolded we all knew someone – some a lot closer than others.

Funerals unending.

Lives changed forever. Still changing.

Street signs commemorating victims. Memorials, tributes.

Cancer. Asthma. Chronic illness. PTSD.

Everyone remembers, to some extent. But here, in New York the pain is palpable.

This morning we prayed that those suffering heartache would be able to take solace in the smiles and laughter of the youth surrounding them. We have not forgotten.

9/11 brings with it the promise of 9/12,

To all those with painful hearts- You are loved and remembered.

Race for the Cure!

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

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

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

“Weren’t you supposed to be up at 6?”

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

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

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

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

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

Dates matter.

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

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

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

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

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

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

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

sur·vive (sr-vv)

v. sur·vived, sur·viv·ing, sur·vives

v.intr.

1. To remain alive or in existence.

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

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

v.tr.

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

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

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

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

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

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

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

there.

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

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

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

Dates are important.

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

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

Generous Heart

Published on September 4, 2013September 4, 2013 by beatingcowdens1 Comment

I’m not exactly sure how the idea got into her head. At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair. And she decided that she wanted to do it.

For a bit of time it was talk. We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair. Then she got serious.

Sometime right after school ended she decided it was time. So, we went to a new hair salon and had her hair measured.

“Close,” they said. “Come back in about 2 months.”

And, as summers go, time passes and 2 months is gone. We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.

She was anxious but determined. Confident that it was the right thing to do – she bravely sat in the chair. Her hair was measured to ensure it reached the necessary 10 inches.

Then, even I held my breath as the pony tail was cut off.

And as the hair fell down, the smile of relief sprang up. She saw the life bounce into her hair. She knew it would all be OK.

As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.

Once again, my girl led me by example. Once again her bravery is unmatched.

You see last Friday we found a small bald spot on the top of her head.

Yesterday Meghan got the formal diagnosis of “Alopecia Areata.” It hasn’t got a blessed thing to do with Cowden’s Syndrome. Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer. The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.

Stress can trigger this unpredictable autoimmune hair loss.

We can hope the spot was a reality check for all of us. A reminder to try to take some deep breaths along the bumpy road we travel.

We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen. We go through too much here not to have each other’s trust. I answer questions as briefly as she allows, but I always answer honestly.

There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning. Alopecia Areata is a life-long condition. It may stop now and rest forever. Or maybe it won’t. We just don’t know.

But we are kind of used to that around here. There are no “plans” anymore. Only guesses, and hopes, and prayers.

And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.

For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.