Daily struggles – Page 26

Do penguins have knees?

Published on November 4, 2013November 4, 2013 by beatingcowdensLeave a comment

I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.

It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…

But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”

The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.

I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…

But the headache hasn’t quit. It’s been weeks now.

It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.

But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.

What I do know is that there has been a headache to some extent for over a month and that’s too long.

What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.

She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.

Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.

And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…

So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.

That’s the story that will get me through the night.

I wish cancer got cancer and died!

Published on October 26, 2013 by beatingcowdens1 Comment

Today was rotten.

And it is Saturday. I hate it when Saturday is rotten.

And I am tired. And worried. And my heart is heavy.

I guess that makes me in the same boat as most people.

And then there was a text this afternoon.

And just like that breast cancer claimed another life. Just like that two women had no mother, and a husband lost his wife.

To the best of my knowledge she didn’t have Cowden’s or BRCA, or any other genetic cause for her cancer. But then again, neither do most people. And I was reminded again that maybe having Cowden’s makes me a little luckier.

I knew to get the beast before it got me.

She was not old enough to die. But, then again, who is?

And even when I held her hands in June and looked her square in the eye, and told her to fight with all her might – I knew. She knew too. Deep in that place where the thoughts are that you just don’t want to think, or feel, or believe. We both knew that this is how it would end.

Cancer is stupid, and mean and nasty, and ugly and awful. It’s a big bully and I really hate bullies.

I’m pretty much over this “Breast Cancer Awareness” thing.

As a matter of fact I am over the whole cancer thing altogether.

Ready for a cure.

Broken hearts. Lives crushed. Too many wakes and funerals. Too many people gone too soon.

My heart hurts. My head hurts. And I think some part of me feels guilty.

Guilty for having a “head start.” Guilty for having the support to push me through the double mastectomy.

This is the first person in my life to die of breast cancer since my diagnosis. I am sadly sure she won’t be the last.

And, like so many things that have changed since March 5, 2012 – this one hurts differently. Worse.

Cancer really just sucks.

STUPID CANCER show!

Published on October 21, 2013 by beatingcowdens3 Comments

I am absolutely high on adrenaline right now…

In August the husband of a friend from High School asked me to be on “The Stupid Cancer Show.”

https://www.facebook.com/stupidcancer

I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.

Tonight was the night.

What an amazing show. I am so glad to be familiar with it now, and you should check it out!

Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.

I find there to be no coincidences in life.

After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.

http://www.blogtalkradio.com/stupidcancershow/2013/10/22/stupid-environment

(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)

Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.

There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.

There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.

People ask why we devote so much of our time, energy and budget into healthy food.

Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.

These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.

This company provides quality food, and they make it possible for you to afford it, because you can eat your Isagenix for free.

“You plus two, them plus two.”

Well worth my initial investment. Quality nutrition for my entire family.

We are certainly going to do the best we can at all times.

Our health, no guarantee. But we are going to do the best we can to keep that “STUPID CANCER” away.

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…

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.