Cowden’s Syndrome – Page 27

I STILL HATE CHEMISTRY!

Published on October 16, 2013 by beatingcowdens3 Comments

I am dating myself I am sure, but the year I was to sit for the Chemistry Regents Exam in NYC, someone swiped the answers. The morning of the test they were published in the NY Post. I remember sitting in my high school cafeteria waiting to take the exam, only to find out it had been cancelled. You know thinking back on that story, I guess I understand now why I have never won the lottery. That was probably one of the “luckiest” thing to happen in my life. I never did have to take that exam.

Except now, 25 years later, I sit poring over a piece of paper full of words I don’t understand. I am brought back to the periodic table, and left to wonder if maybe I should have paid a bit more attention in class.

I have actively picked apart each of these levels since being handed the report on Thursday. I have read the descriptions of where this toxicity could have originated from. I have made the few moves I could understand, and the old aluminum cookware hit the recycle bag, and the new stainless steel – to supplement the few pieces we did have – arrives this week. The old cookie sheets are gone. Parchment paper replaces aluminum foil for cooking. But what about the other ones? What about the ones I can’t understand? Or worse, what about the ones like “gadolinium” that I CAN understand, but I just can’t fix?????

This printout is old now. The new urine sample was picked up Friday morning, and hopefully someone in a lab somewhere is generating lower numbers and shorter bars. But, I won’t know that for a few weeks. So I am left alone with my worries, and my thoughts, and my sick kid.

I suspect if Meghan could tell the world how she feels, this might be the sentiment. She is constantly conflicted with feeling like crap, and being pushed to keep on. She not only plays in pain – she smiles and laughs through it. And no one who sees her outside of this house would typically have any idea of the agony she endures each day. She works hard to hide it all. She has told me, in her very own words, that “no one would like me if I told them how I really felt all the time.” I would like to tell her she’s wrong, but she’s not.

And she is the bravest kid I know.

The sore throat started Friday, hours after the chelation, and exactly the same as last time. On Friday she pushed herself through gym class because she just wanted to be “normal.” By Friday afternoon she was shot – too wiped out to swim. She could barely swallow. By Saturday morning her nuscles ached along with her throat. No swimming Saturday either.

We barely left the house all weekend, except for a quick strep test Sunday that was negative.

The friends she wanted to invite over – postponed.

This was no coincidence. This was twice in a row she was knocked on her *ss after chelation. This was her immune system saying,” WHAT THE HECK WAS THAT?” To the toxic storm unleashed by the chelating agents. We have kept her well hydrated in hopes much could be excreted… but we will have to wait and see.

Early to bed Friday, Saturday, Sunday, Monday, Tuesday, and again tonight.

SHE HATES going to bed early – but has gone willingly.

She went home from school early today. No fever, but a clammy sweat. She just needs rest, and water, and rest.

The headache is ruthless. Even as some of the cold like symptoms start to subside, the headache does not want to quit. A week now. It leaves such a pit in my stomach I don’t want her out of my sight. I hate headaches. I especially hate wondering if the renegade toxins likely causing them are doing any other damage.

The doctor who last month said there was no way her symptoms were connected to the chelation recanted through an email today. He is now keeping tabs, giving me tips to keep her comfortable, keeping my resolve strong that this is necessary, and working on downward adjusting her dose for next time. More trips, more treatments… hopefully less misery.

I just can’t shake the image of a snow globe, and as we try to get the metals out we stir it all up. Some escapes, but the rest causes misery as it finds hiding spots again.

An in between it all life presses on. Laundry gets done. Bills get paid. Lessons get planned. Cars get exchanged. Files are kept. Clothes for the growing girl, are ordered. Floors get vacuumed, and washed, and vacuumed again. Groceries are purchased. Lists are made, and lost and remade. Tabs are kept on family and friends, and their health, and their struggles.

These are the every day tasks that keep me sane. On autopilot.

Dinners are missed. Meetings go unattended, Places I want to go – but, I just can’t right now.

You see I am having a battle with the Periodic Table of Elements, and I need to study. I am the front line.

So, I take my IONIX, and my t+chai, and I am thankful for energy and stamina to endure.

Maybe missing that regents wasn’t so “lucky” after all. So as I study some these next few weeks – please know we haven’t forgotten you. Our prayer list is long. We don’t want you to leave us out, or not to call. Don’t feel badly about overburdening us. We NEED to be in your lives. We WANT to be in your lives.

We are in touch enough to know that “Everybody has SOMETHING!”

from "Mommies of Miracles" — from “Mommies of Miracles”

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.

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…

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.

Worn

Published on September 1, 2013September 1, 2013 by beatingcowdens3 Comments

“Worn”

I’m tired

I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….

http://www.youtube.com/watch?v=zulKcYItKIA

This has been the summer that… well…

It has definitely been a few extra stressful weeks, and not at all the relaxation we had so desperately hoped for and needed in June.

But, like it or not time marches on, and here we are in the middle of Labor Day weekend.

When we started the summer my daughter had 2 basic requests.

1. Go to the beach.

2. Go to Philadelphia.

Not so hard right?

And then we looked at the calendar about to change to September and realized between appointments, procedures, tests and surgery – we never got either one done.

Stress is very individual in how it affects each of us. We all have stress. We all deal with it differently. But I think that the reality that stress can, and does manifest in real physical illness is often lost on us. Especially lost is the harsh reality that stress can make our CHILDREN sick – until it smacks you in the face.

It became clear this week that the stress is weighing heavily on Meghan. She is one tough chick, but there is only so much the mind and body of a really cute, smart, well behaved 10-year-old should have to endure. It is now the top priority of her father and I to actively work on lowering her stress level.

We started today.

Months ago we purchased tickets to see the Contemporary Christian band, “Tenth Avenue North” in concert in Ocean Grove New Jersey on August 31st. We decided to make a day out of it – or a half day at least!

We let Meghan sleep as late as her body needed. (Falling asleep has become terribly hard again.) Then she got to watch some TV. I ran a few errands, and around 3 with a cooler full of cold cuts for “dinner” we set out to surprise her with a trip to the beach.

We never told Meghan our plan, although it was obvious she was secretly hoping for the beach. We just know too many factors can get in the way on a moment’s notice. So, it wasn’t until we were looking for parking that we even told her.

By then it was 4:15. The perfect time to take a kid who is not really sure she likes the beach, to the beach.

Crowds were waning, and as we set up our blanket she had some time to adjust to the seagulls, and the sand between her toes.

Forever my texture phobic kid, truth be told the sand in the toes was the reason I stopped really bringing her to the beach years ago. But today there was a mission to put her toes in the water and collect shells with Mom and Dad.

She walked with Mom. Then she walked with Dad. And for a few glorious minutes I laid my head on the towel and remembered my childhood days in Ocean City,NJ. I listened to the waves, felt the sand between my toes, and felt such PEACE!

Don't hate my polka dots - my husband did them for me! :-) — Don’t hate my polka dots – my husband did them for me! 🙂

We have a small bag with some beautiful shells.

We even played some with her Nerf frisbee. There was laughing, and smiling, and a good deal of stating and restating that the sand on her toes does NOT feel nice.

With some gentle prodding she came around, but was perfectly happy with 2 cool hours on the beach. So glad I didn’t get a full day plan in place!

What we did NOT do was have a picnic lunch on the beach as planned. Instead, we ate in the car. Sea gulls, being nothing more than glorified pigeons would have undoubtedly created significant reflux for my girl. So, we had Board Head chicken breast in the car, with potato chips, and had a great conversation – minus the sea gulls.

We walked the streets of Ocean Grove for a bit, and I saw the sign:

And somehow I knew we had done things right – today.

We headed over to the Great Auditorium for the concert. We happily bought our girl her first concert T-shirt, and her “Tenth Avenue North” Bracelet. In-scripted inside the bracelet are words from the cover song off their newest CD, “The Struggle.” It reads, “We are free to struggle, but we’re not struggling to be free.” She is sleeping with it on right now.

The show was amazing. Meghan was enthralled. They are quite the performers.

Meghan and I often sing along to their songs on the radio. Our favorites are “Worn,” and “Healing Begins”

“Healing Begins”

So you thought you had to keep this up
All the work that you do
So we think that you’re good
And you can’t believe it’s not enough
All the walls you built up
Are just glass on the outside

So let ’em fall down
There’s freedom waiting in the sound
When you let your walls fall to the ground
We’re here now

This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark…

http://www.youtube.com/watch?v=Qe1yKciSlT4

The lead singer also spent some time talking to the audience about God’s plans. He told the story of a car accident his Senior year of High School where everyone thought he would die, and no one thought he would recover fully.

That 32-year-old man with a wife and 2 daughters spoke definitively tonight about believing God will use the adversity to grow greater things. He told us he touched a guitar for the first time at 18 while he was waiting to heal from his accident. Clearly, God had a plan.

I was touched by the story, but more moved by Meghan’s reaction. She HUNG on his every word. She was thinking – deeply.

Then she asked if I had any of the “Cowden’s cards.” And, God bless this girl she walked right up to the stage and handed them to one of the back up band members… alone.

“I just thought they should have them Mom, in case they want to read…”

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

You know the irony with this darned Cowden’s syndrome is that what you NEED is to be away from doctors, because they cause STRESS which prompts other conditions that cause you to NEED doctors.

So, a few days after the hand became free, we are on the hunt for the solution to more developing problems.

Stress. We do what we can to deal.

We use music. We enjoy time together.

We try harder to get it right. We hug each other. We hold each other.

I still haven’t given up on a road trip to Philly. (If only I can get my navigation system to work…)

I Know Why The Caged Bird Sings

Published on August 27, 2013August 27, 2013 by beatingcowdens1 Comment

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

Maya Angelou

I am sure this is not what Maya Angelou had in mind. And really for the safety and sanity of my friends and family, I don’t sing – ever. Yet the phrase about the caged bird keeps running through my mind.

Being caged is an illusion in some respects. I have a beautiful house, and a lovely family. We have two cars that work sometimes, so we do have access to the outside world.

Yet sometimes life with Cowden’s Syndrome can make you feel caged. It takes away the freedom, the ability to go as you see fit. It robs you of the carelessness that should be an inherent part of a 10 year old’s day.

And even as some days I want to cry with frustration – my young caged bird continues to sing…

This is the summer of irony. All over the place and in our faces.

Not lost on us are the numbers of family and friends whose privacy I respect too much to mention, but whose lives are upended, and who are in their own right “caged birds.”

All summer we sat at doctors. One after another. Hours upon hours upon hours.

Now- we don’t have any appointments. But the broken wing- the wrapping on her hand and the stitches prevent us from getting too far.

The hand has to be elevated with a Carter Block, until the stitches come out Thursday. Then we can talk about resuming therapy. Today the calendar is empty. The sun is shining. And here we sit.

Not exactly alike - but you get the idea — Not exactly alike – but you get the idea

The pool is crystal blue under the bright sky. Taunting.

I can take her out but if we go too far, or do too much, the throbbing begins again. Maybe we will make a quick trip somewhere just to get out.

I have a million things to do. No shortage of work to keep me busy. But, I can’t seem to get anything done. Irony. You want and want for time to get things done, and then… it’s like I developed a full blown case of ADHD. I can’t keep up with my mind, and the list just grows.

If I take responsibility, some of this feeling comes from my general lack of spontaneity. I am a planner. Much to my detriment. I long to be the one who just gets in the car and goes. But even though I struggle with this and try to gain a glimmer of impulsive behavior, the reality of our lives seems to tether us close to home.

Allergy meals are tough to come by and can’t be taken for granted. Food and enzymes must be planned….The consequences are dire and painful. I won’t take the risk.

So, here we sit. God bless her, and her patience as she alternates reading, TV, and playing with the iPad.

I am working on laundry and the floors, and cutting some 100s charts out of laminate for school. Always moving, and accomplishing precious little.

I am breaking out into a cold sweat as I schedule our next round of appointments. What a feat. Distressing, disturbing, necessary waste of time. I have about 8 scheduled for us from December to February already. And a few others sprinkled in for good measure.