A Letter to Me as a “Mommy-to-Be”

Published on May 8, 2016May 8, 2016 by beatingcowdensLeave a comment

Dear 30 Year Old Me on Mother’s Day,

Listen up. Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way. Do me a favor and sit down a minute. You don’t sit much, but you focus better when you do.

Life is hectic, I know. You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing. You have a lot to do. I get it. There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade. There is this small, ok, large human growing inside you. There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time? I mean it. Force it in. Make time for you and your husband to just be. Make time to laugh. Make time to rest. Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back. Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality. And you will always have each other’s backs. But, they will have husbands, and children and houses, and obligations of their own. Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts. (Yes, you’ll have a blog, but I’ll explain that later.) You’ll regret not seeing them more. Not sneaking in a few more dinners out, or some drinks and dessert. The time for that will come again, but it’ll be much later. And sometimes you’ll get lonely. Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you. Broaden your definition of healthy into a “spectrum.” Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few. Don’t bother looking at Pinterest. Your life doesn’t work there. Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever. One day it’s going to make its way into the world in grand fashion. And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine. By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor. She’s got a big head just like you. The C-Section is inevitable.

And, she’ll be the biggest baby in the NICU. Right from the start you’ll hear about her feistiness. The nurses don’t lie. Right from the start you’ll have to change your perceptions of how this mothering thing was going to go. From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely. She will cry and scream and yell in ways that your family will forget, but you will remember for life. You will learn how to function on raw nerve. You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her. Because you know she’s not “spoiled” even though she only rests on top of you. You know it’s more. You know it’s her belly and you will hang on when others want easy answers and excuses. You will fight for her because you are her mom. And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.” This is only the beginning. Dig in hard and sharpen your instincts. Trust yourself. Ask tons of questions. Learn early that doctors, and therapists are a dime a dozen. Settle for nothing less than the best.

Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl. They will change your world. Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist. She’s going to confuse them, and amaze them. She will start to retreat into herself. All of a sudden she’ll be two, and not making a word. Hang on and don’t let her go. She’s not autistic, and never was, but she is medically complicated and she is not well. You will try as hard as you can. You will read, you will frantically research. You will seek out expensive alternative specialists. You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike. You will slowly find your confidence. You will become a master record keeper. You will try things that are “different” just to see what happens. You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk. You’ll worry that she’ll never eat again. You’ll get angry when you realize that the food she’s eating is making her more unwell. You’ll learn about the immune system and the GI tract. And by the time she’s two and a half you’ll get a whole lot of babbling. By the time she’s three and a half the speech therapist will cut her loose. Her belly will be flat. She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down. Because, like a detective you will spend nights poring over things to make connections. You will have volumes of daily diaries, and binders of lab results. You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually. You’ll cherish every moment extra, because you’ll know from where she came. She’ll have surgery after surgery, and a few more hospital stays. There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body. It will hurt you to watch, but you will be strong for her. You will not give up. You will not give in. You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again. “Cowden’s Syndrome,” a “PTEN Mutation.” And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions. You’ll try desperately to wrap your head around the realities of this tumor provoking condition. You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count. Then, you’ll get that positive test result too. That day when guilt takes over for a while. That day when you realize she doesn’t just have your hair and your smile. She also had this syndrome because YOU have it too. Don’t hang out in the pity party for too long. It’s not good for either of you. Trust in the grand plan.

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever. I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there. But, one day it will end. Do me a favor and take a few extra minutes and cherish each of them. Even if you’re really tired. Swing by. Say hi. Pick up the phone. You’ll be glad you did. I promise.

Days will blend into weeks, and weeks into months, and months into years. You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy. Yep. With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands. Don’t stress over it for too long. You’ve got good instincts. The double mastectomy with immediate reconstruction will be one of your best decisions ever. Get home to the angel that saved your life. The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior. You don’t need perfect breasts. You need vigilance. This beast will nip at your heels through a complete hysterectomy weeks later. It will swipe at you. Take care of yourself. Recover quickly and completely. Lose some weight. Fill your body with excellent nutrition. This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl. There will have been 16 times when she was walked into an operating room, and put to sleep. 16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through. And you’ll know in your heart 16 is only the beginning. But don’t get caught up in that. TRY to stop putting it all together. TRY to just breathe, and enjoy the moments as they come.

One day you’ll look at your baby, all strong and determined. She’ll be taller than you and you’ll wonder how it went so fast. She’ll be mature, and so smart. She’ll be talented and compassionate. She’ll still be feisty and competitive too. She’ll be as athletic as her body will allow. She’ll swim and sing and be active in fundraising and outreach work too. She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face. Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world. You’ll blog diligently, as often as you can, making sure to have her edit most of your work.

She’ll struggle sometimes, and so will you. Sometimes you’ll even argue. But, it’ll be the most amazing relationship you can imagine. You two will spend more time together than most other mother-daughter duos. Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other. You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough. Be sure she lives and breathes the reality she is loved. Deeply, and sincerely. Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is. Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years.

It’ll be a busy 13 years. But, every single moment will be so worth it. Trust yourself. Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected. If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine. We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self

This is Our Reality

Published on April 2, 2016April 2, 2016 by beatingcowdens2 Comments

Alone, in a crowded room.

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders. I can’t seem to make conversation, or to pass the time socially as easily as others. I watch. I retreat as soon as I can. I can’t quiet my head. And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

“Those hormones? Are they causing her headaches? Or is it something more sinister? How would I even know? Do we need to use another MRI? What if it is the hormones? What choice do we have? The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December. They’ve already begun to schedule another D & C for July. “You have to make sure…” The uterus is a prime site for malignancy in Cowden’s Syndrome. I got to keep mine until Meghan was 8. Will she get to keep hers? Will she have the chance to make the choice whether she wants to bear her own children? And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment? And at what cost to the rest of her body? What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk. That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12? It seems so unjust. This issue shouldn’t have to be addressed now, well not ever really, but especially not now. And when she has the headaches I have to give her something. What about the headache medicine? What about that esophagus we are trying to heal?

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets? Why should a slight indulgence cause such discomfort and vomiting? Why does she have to be so careful all the time about everything? No wonder she is so serious. And what if it is the headache medicine? What am I supposed to do to help her? Tell her she has to deal with it? I can’t imagine “toughing out” a blinding headache.

The knee. Oh the knee. She tries not to complain about it, but I see when she struggles. The AVM is finally stable, but the leg takes a lot of work to develop. She works hard on it too. But, the stamina isn’t there. Hours in a pool yes, on land, no way. Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain. And pain causes fatigue. And on the occasions she relents and allows the wheelchair into use, she struggles. Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time. She is proud. She is frequently humbled. She is conflicted.

And who wouldn’t be? 16 surgeries before the 13th birthday. The need to be tough all the time, while you feel weak. The desire to be stronger. Having to fight, hard, for physical accomplishments. Having to accept the ones that will never be. Never giving up. Pushing to be better. To make the world better.

She’s not perfect. Never has been. And oh, there are DAYS… But she is good, in her heart. She means well. She has no spite or malice, and I can pray it remains that way. I can pray that the children who don’t get it, one day come to understand her, just a little better. That one day they can accept her, for the good in her.

I scheduled 3 doctors appointments for the next three weeks. Dermatology, orthopedics, and endocrinology. The first is a screening. Cowden’s Syndrome, melanoma risks. Her father’s increased risk of melanoma on another unrelated genetic disorder. Her grandmother’s melanoma this summer. Every 6 months they told me. Bring her every six months. The others will work on long-term plans. Spring break. Every holiday, every vacation. Every day off. Doctors. Not the mall, or a friend’s house. Doctors. For what? And I’ve toned down the list quite a bit.

There are two bills of my desk. One for her and one for me. Both a battle. Always a battle. If it’s not the reality, or the appointments, it’s the bills. And we are so fortunate to have insurance. But, the hours. Oh my goodness, the hours…”

I try to shake it off. To stay focused on the good. On the positive. On the blessings, and they do abound. But, so often it’s just me, and my head. Working to get out of my own way.

I miss my Pop. I miss my Grandma even though she’s still here. I miss their goodness. I miss my Dad. I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me. I smile politely and nod. I stay quiet. “It’s good.” “We’re good.” That’s about all they can handle anyway. Even the ones who genuinely do care. Why drag someone to a place where there is absolutely nothing they can do or say?

This is our reality. This is Cowden’s Syndrome. This is every day. As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head. The reality remains that EVERYONE HAS SOMETHING…

I booked dinners for our Disney trip today. I like to plan ahead. Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!

Inspiration

Published on February 17, 2016 by beatingcowdens1 Comment

Mother. Father. Daughter. Son. Spouse. Sister. Brother. Grandparent. Aunt. Uncle. Niece. Nephew. Friend.

If we are lucky, we connect the word “Inspiration” with one or more of them in our lives.

It’s been a really long month. And on the surface we have been preparing for the Second Annual “Jeans for Rare Genes” Fundraiser at the Hilton this Sunday, February 21st. ( TICKETS FOR THE FUNDRAISER – HERE )

My husband has been wrapping baskets. My daughter has been soliciting donations, and publicizing the event. She was invited to speak at a Young Republicans Meeting, a Junior Giving Circle Meeting at IS75, and she was invited to speak to PS30 in Westerleigh. Tonight she is thrilled to be speaking at the Staten Island Giving Circle Meeting. Staten Island Giving Circle

I have been trying to stay on top of vendors, and seating, and tickets. But I have been distracted. We have all been distracted.

Those two, in the center, my grandparents, are at the center of this family. They are the inspiration. It is their ripple effect that allows all of us to do what we can to make the world better. They are married 70 years. She is 95. He is 96. And until just over a month ago he lovingly cared for her with the limited assistance of my mom and a 4 hour a day aide. He cooked, cleaned, shopped, did the laundry, paid the bills. And endured a great deal, out of love. Pure love.

My grandfather spent 4 years in service to our country during World War II. He married my Grandma a few weeks after returning in December of 1945. He became a member of the FDNY for 23 years. They raised two children. They acted as second parents for many years to my older sister and myself. We watched Pop, a man of faith, not talk the talk, but also ‘walk the walk.’

I learned the meaning of inspiration through his humble humility. I learned love by watching him kiss Grandma every time he left the house. I learned generosity by watching him give of himself, unceasing, to neighbors, friends, and especially family. He inspires my life, and daily inspires me to be a better person.

His health is failing. In one month the transformation is utterly disturbing. And yet, he managed the strength to mouth the words to “Jesus Loves Me” and the Lord’s Prayer on Sunday as my brother-in-law gave us communion. I’ve been distracted by one of my inspirations.

His stubbornness, one of his best, and most challenging qualities, is one I passed on to my daughter.

Most of you know her story well. For those who don’t I’ll give you the shortest version I can.

She was born in distress, spent 4 days as the biggest, fiestiest baby in the NICU before heading home. There was a year or more of colicky sleepless nights, which melded together with hospital visits, the first of many surgeries to come, developmental delays, early intervention, and so on. By the time she was three I had CPSE telling me she’d never sit in a normal PreK or a regular school. We read, and researched, and peeled away layers in ways that were sometimes conventional and sometimes alternative. We found a combination of strategies that left my girl in an honors program early in her academic career.

The surgeries kept coming. The doctors appointments were relentless. The Physical Therapist Dr. Jill who loved her so much, pushed me to genetic testing. There the diagnosis of PTEN mutation, or Cowden’s Syndrome changed things forever.

Now there was a name. Now there was a reason. But now there was so much more to be worried about. Now people scurried and scampered about and whispered and doctors “googled” while we were in the room. Now her diagnosis prompted MY diagnosis, as Cowden’s is inherited. And so much of my own medical history made sense.

Four years ago I was pushed to undergo a bilateral mastectomy. It was supposed to be prophylactic based on the insane breast cancer risks for Cowden’s Syndrome patients. And then on pathology there was the breast cancer diagnosis, and the realization that my daughter saved my life. Humbled.

The surgeries persist. And get more complicated as the years go on. Life gets more complicated when you are 12 and in Junior High. Kids don’t really get this life. And well, they shouldn’t. But it gets lonely.

Sometimes she gets angry. Mostly she tolerates the loneliness. Mostly she channels her energy. She dreams of cures. She knows cures take money. So she spearheads fundraisers. She talks even when no one listens. She is grateful for her Cowden’s in the midst of the rare diseases we have seen.

She gave up soccer, and running, and dance. She hurts after normal kid play. She gets frustrated. Then she swims. Not to be put off, she found the place she can compete. And she pushes herself to be better every day.

She does well in school. Although it’s not always politically correct to talk about it. I’m her Mom, so I can say it.

She gets up every day. She smiles. She reaches. She inspires. Me, and countless others. I am one of the lucky ones who has been inspired by many – right in my own family.

So, a few weeks ago when the local paper asked for an inspirational Staten Islander, she was my natural choice. And I wrote, honestly, and without a second thought.

When the paper came out asking for us to vote I read every bio. And I was inspired. By all of them. Then Meghan read them. She was so touched I had written about her, she told me she’s be proud to lose to any of them.

There was a Facebook post this morning by the daughter of another nominee. Her Dad sounds like a stellar man. He offered to do anything for Meghan. He is kind and generous of heart. The daughter is lucky, as I am lucky. We have inspiration right in our own families.

Maybe we can all meet at the fundraiser Sunday!

TICKETS FOR SUNDAY 2/21 HERE!

You can read all about all of them and vote below.

Somehow, I think they’ve all won.

READ AND VOTE FOR INSPIRATIONAL STATEN ISLANDER!

It’s Complicated…

Published on December 22, 2015December 22, 2015 by beatingcowdens2 Comments

I just ended a 30 minute conversation with Meghan’s adolescent gynecologist. The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help. These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.

The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding. Yes, you read that right. No malignant finding. (Insert Happy Dance here…)

And the gratitude for the prayers and positive energy was lifted up. We truly are always aware of the potential alternatives, regardless of our situation.

But, as is always the case with Meghan, I encourage you to keep reading. Nothing is ever really simple. And, as the years go by it seems to get progressively more complicated.

While in fact there was no malignant finding, there was not a purely benign pathology either. She had “the best type of hyperplasia you’d want to find.”

Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.

Hmmm. Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.” And various other sites say the same. The doctor agreed. The pathology finding was not “normal,” and therefore it must be treated.

See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age. It might even be expected in women 5 or 6 times her age. But, her age is 12. And none of this is ok.

I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box. Any other teen would have been treated for months or more on hormones. That could have had epic consequences.

In the short-haul, she gets to heal from an invasive procedure. In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing. But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.

For now, she keeps her uterus. And we hold our breath. We hope that over the next few months things will start to calm down. And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.

To Meghan this mimics the process that took place at the beginning of the end of thyroid removal. We had about 3 years of progressive biopsies before they decided to pull the plug and take it out. She knows, and agrees, that we will all fight longer and harder for her uterus. For so many reasons. But the similarities can’t be overlooked. Nor can the distressing notion that another body part is misbehaving.

When we were diagnosed in 2011 we were told there would be screenings and monitoring. We even figured on a few doctors every 6 months. At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.

Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months. Digest that for a minute, because it’s hard to keep track of.

Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.

We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist. There is an annual MRI. And two of those procedures in the last 13 months have been for the knee. Add in surgical follow-up visits, and Physical Therapy.

The dermatologist needs to see her twice a year. Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant. Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.

There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.

And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.

Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.

And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.

And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?) who has twice in 3 years removed vascular lesions, one from each palm. And those surgical follow ups.

Nothing is neat and clean. Nothing is contained. Nothing ever fit into those 2 weeks we once dreamed about. This disease has projectile vomited all over our lives. And it’s everywhere. And it’s messy and gross, and we just want to take a hot shower and move on.

Because we haven’t even discussed fitting in MY appointments…

And a full-time job….

And an honor student….

Who is a swimmer….

And a theater buff….

And a community activist in the making…

All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.

Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram. She was less than impressed. The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor. I can’t argue.

The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.

That is one of the main reasons we work so hard to raise funds and awareness. Maybe one day…

So tonight, we are grateful. We are on our knees in gratitude, for the prayers that were lifted on her behalf. We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.

So if we are not shouting from the rooftops, please don’t think us ungrateful. We are not. We are relieved. We took our first deep breath in weeks. But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.

We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.

While we are in transit, to and from a lot of places we’d rather not be, we talk a lot. Most of it is complicated. But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.

Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!

Time with "BOB" our favorite entertainer... — Time with “BOB” our favorite entertainer…

Overwhelmed

Published on December 17, 2015December 17, 2015 by beatingcowdens4 Comments

Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.

I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.

My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?

It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.

I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery. Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best. Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

Dear Stress, Let’s Break Up…

Published on November 25, 2015November 25, 2015 by beatingcowdens3 Comments

Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.

I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.

I make excuses. I have a hard time letting go.

And you, well you are relentless. You keep finding ways to get in my face.

Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor? You know how much I LOVE new doctors right? AND EXTRA trips to the city. My complete favorite.

And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this. I cried. I admit it. You got to me.

But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions. We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.

Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.

Excuse me while Peace, Serenity and I dig out the Christmas tree.

I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS. I’m really not interested in you…

We’re too busy- BEATINGCOWDENS!

Making the Most of It All…

Published on November 10, 2015 by beatingcowdens2 Comments

Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month. Insanity. Except to a young lady who is now growing into herself, and her abilities.

She wants to swim. Hard and often.

She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time. I know, because I am with her. Or helping her stay organized. Or transporting her at least.

This weekend we drove 200 miles. Today at least another 60. LOTS of time for car chat. Lots of time to get to know each other well.

Sometimes she drives me crazy. Sometimes I frustrate her so badly she wants to scream. Sometimes she does homework, reads, or works on projects. But, lots of other times we talk. About anything and everything. And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car. I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

As a matter of fact after today’s appointment, she could easily be in the front seat. All the time. At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is. Which I sometimes have to remind myself when I am busy expecting her to have it all together. Sometimes she still needs me to help her along.

Today was the knee surgeon. Six month follow-up. He sees the shift in the patella. He feels the scar tissue, and the clicking. But, he said, she can wait. She can wait until she’s ready before he cleans it out again. With Cowden’s it’s a fine line. How much pain can you deal with? Because every surgery will lead to an overgrowth of scar tissue which carries its own issues. Drag your feet. Know when enough is enough.

Next we will have an MRI to check on the AVM. As long as that’s stable, we should have a bit of time. A bit of time to do some things besides recover. A bit of time to be a bit more like a “normal” busy 12-year-old. Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

This kid. My stength. My motivation. My hero. — This kid. My strength. My motivation. My hero.

Tomorrow she goes to another doctor. And about this one I just pray. A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind. In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping. After 2 years of holiday sadness, I am craving joy, and celebration. I am craving the anticipation of the birth of the baby Jesus. I am determined to remove myself from the holiday hustle and bustle. I am determined to set my mind right. Because none of us ever know. Really. And there is no promise of tomorrow. Really.

But organization makes me happy. And it’s about being happy. And making the most of it all. All the time.

The Story of the Girl and Her Mom

Published on October 18, 2015 by beatingcowdens5 Comments

So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too.

And the mom and the girl read everything they could find, which really wasn’t very much.

And they asked a lot of questions. Some from the doctors, but mostly from people on the internet who had this Rare Disease too.

They learned a lot. They also learned there was a lot to learn.

They learned about cancer risks, and how very high they are.

They learned about screening tests.

They met lots of new doctors. Some were super awesome, and others were super awful.

They fired the awful ones, and kept the awesome ones.

The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.

At the beginning it was pretty much all they had time for.

The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.

The mom, she had a bunch of surgeries too. In one they found cancer. But she was called a “survivor” because it was all gone. (Thanks to the girl who got diagnosed first and saved her life.)

The girl and her mom ran from doctor to doctor. They sat in traffic for forever. They stayed in hospitals and had surgeries, and tests. Everyone treated them kind of strange. Like they were aliens or something. Their condition was so rare that hardly any doctors even understood what they were supposed to do.

Over time the girl and her mom got a better idea of what really mattered and what didn’t. They started to be more assertive about doctors, and schedules and planning. They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.

The girl and her mom talked a lot about Cowden’s Syndrome. They talked a lot about Rare Diseases. Sometimes they were really angry. Sometimes they were sad, and other times they were grateful. They saw what some other people with Rare Diseases went through.

The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.

They worked on some things separately and some things together. But they agreed to get busy living.

That didn’t mean they could ignore the seemingly endless doctors appointments. They all had to be done. It meant they could schedule smarter. It meant they would talk about what symptoms had to be addressed right now and which ones could wait. It meant they had to get really good at communicating.

This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.

The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering. And she learned that she liked to be busy. She likes to sleep too, but she likes to be busy. With kids. Often. She also likes to be active. A lot.

The girl and her mom still have this Cowden’s Syndrome, and sometimes for reasons no one understands, they hurt a lot. Sometimes the pain makes it hard for one of them to push on. Sometimes the tired almost feels like they can’t go on.

But the girl and her mom, they push each other. They push each other to press on because laying down and giving up is not an option.

Their days are long. The mom works full-time. The girl goes to 7th grade and makes high honor roll.

Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice. The days are often 13 hours or more of constant motion.

The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.

So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle. This way if Cowden’s punches, they will punch back harder.

Sometimes the mom wonders if life would have been different without the girl. The mom wonders if alone she would have been able to push on.

But she doesn’t have to wonder. Because they have each other. And, because this weekend they spent 3 days at a swim meet. And the girl knocked major time off her events.

And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel – all ready.

And the mom and the girl were so grateful. For each other. For the desire to fight. For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.

And as the mom drove the girl to youth group at their church, they talked, about the swimming. And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention. “For the Babies,” and so that there can be research for this Cowden’s Syndrome. So that maybe it can get stopped in its tracks.

And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.

For this story of BEATINGCOWDENS has only just begun. And each chapter holds more promise than the next…

Hyper-vigilance

Published on September 20, 2015 by beatingcowdensLeave a comment

Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well.

Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.

When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant. Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.

The two are very different. One is a state you may be in sometimes, when it is necessary. The other is a place you never leave. Ever.

I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another. That to me is silly. I know LOTS of people who suffer on a regular basis. I can’t say I would want to trade places with any of them. And, I can only speak from my lens.

My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.

I don’t view us as “sick” people. As a matter of fact we are regularly called,” The healthiest looking sick people…” But, we aren’t “well” either. It gets complicated. Quickly, and often.

Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.

Hyper-vigilance necessitates monitoring food intake. Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress. That means NEVER leaving the house without food. JUST IN CASE. It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window. It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty. It means driving far and long to get the right food at the right stores. It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.

Hyper-vigilance means watching the medication intake. To make sure we don’t forget an antiviral. Because when we do it sets off a tirade of events that are hard to bounce back from. It means typing the list, and checking it over. It means teaching her to know her medicine on sight. It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach. It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.” It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes. It also means spending HOURS AND HOURS trying to make the mail order medication people get it right. Which I sometimes think is just not ever going to happen.

Hyper-vigilance means scheduling the doctors. All of them. All the time. It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule. It means often following up on those appointments, with imaging studies and more appointments. And then repeating those “unclear” imaging studies, again and again. It means getting blood work done, often. Usually at least once every 4 weeks. It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better. It involves medication adjustments. Making sure it’s taken on an empty stomach, and every single day. It means there is always a list nearby of who needs to be scheduled next. It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.

Hyper-vigilance is hearing the symptoms every day and trying not to panic. When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these. Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own. Hyper-vigilance is being very aware, but never panicking. It’s a fine line.

Hyper-vigilance is Physical Therapy. As often as we can fit it in. Because something always hurts. When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”. The hip, the shoulder, the knee. They all hurt, and it won’t get better. It will only get managed. For as long as we can fit in the PT.

Hyper-vigilance is also finding balance. It’s also searching somewhere for “normal.” It’s making 4 swim practices a week, often on raw nerve. Because she wants to feel normal. She wants to compete. And let’s be truthful, she wants to win. It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.” It’s getting her to drama, because she’s skilled there. And she fits in. And the teacher is awesome, and the kids know her for who she is. It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up. Too much stress is no good for anyone. Especially when you have this random tumor growing condition that preys on extra stress.

Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too. It is making sure I am at my best so that she is at hers. It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me. It’s remembering they were worried enough to take the uterus and the ovaries too. It is working hard, at my job, and my life, and showing her it can be done. But it’s also about letting her know I get tired too. Because in those moments she sees that she is normal. And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes. And she picked up the vacuum. And she helped. It’s teaching her to take care of herself by some days letting her take care of me.

Hyper-vigilance is walking. Me. Walking 4-5 miles a day almost every day. Because my bones are already crapping out. After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning. It’s necessary for me to take good care of me. To fuel my body properly. To limit the junk in. To respect this body because it’s already got a lot going against it.

Hyper-vigilance is making decisions in the moment. It is having to say no, we can’t go. It’s not being able to tell people in advance. It takes away from advance planning, even the fun stuff. Because life with chronic illness is day by day. It makes me feel badly, often. So sometimes I avoid making plans. I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.

Hyper-vigilance can be very isolating.

It’s hard for some people to understand. And I get it. Because a few years ago it might have been hard for me to understand too. It makes people uncomfortable that this thing we have is never going to get better. People feel better when things can be fixed. But it can’t. We are not going to grow out of it. It’s here. It’s part of us. Like the ‘elephant in the room.’ But, we understand other people’s problems too. We get the myriad of health issues that surround us. And we empathize. And we don’t need to be sheltered from them. As a matter of fact, we might like it is sometimes people shared their worries with us too.

Hyper-vigilance is exhausting. And today I took a two-hour nap. Because my throat started to hurt. And my body was giving me all the warning signs that I had pushed a little too far. I shortened the walk. I stayed in mostly.

It’s like training. For real life. Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay. The only path to this end is hypervigilance. And even then, just like in life, there are no guarantees.

We remain forever Beatingcowdens!

Summer List

Published on September 7, 2015 by beatingcowdens2 Comments

I have been walking around all day with that nagging feeling in my stomach.

I have packed my bag, and Meghan’s too.

I have filed, organized, and made lots of lists.

There is a new schedule on the wall – color coded and everything.

The calendar says it’s time, but my heart, and my stomach beg to differ.

Summer was to be about beaches, and barbeques. It was to be about road trips and freedom. It was designed for friends, and fun, and get-togethers.

Except that most of that never came to be.

There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT. Which, even though we LOVE Dr. Jill, can be daunting in the schedule. And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.

And while that was going on Daddy was rebuilding the deck. Alone. For three months. Every spare minute of April, May and June. It looks so beautiful. Maybe next year we will get some people over to relax and enjoy the deck, and the grass. The new grass, artificial, durable, and a drastic improvement over the old side yard. Yes, maybe next year.

We got the pool open the first week in July. And July had drama “camp,” and I use the term VERY loosely. And July had swim practice. And July had doctors, some regular, like PT, others on the 6 month schedule. And some blood tests, and some ultrasounds, and a bone density test for mom. I think I stopped counting at 30 appointments.

But, thankfully August had Disney. And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”

And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm. And setting up the whole wisdom teeth thing for September.

So it’s easy for me to be sad. And down on things. Because I want a do-over. But, I guess that’s normal. Because most people probably do.

I sat down tonight to get my head clear. To “flip it,” and get my head and my heart in the right place for tomorrow. I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.

So, in no particular order…

The new deck. No splinters. No maintenance. Pretty. And finished.
The new grass.
Walking barefoot in my backyard.
Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines. Healing help.
My road trip to West Virginia
Listening to my girl sing. In pain. In joy. In the shower. In the living room. In the car. Anywhere.
Healing progress. From both recent surgeries. And the resilience to continue to endure.
Laughter. Mine. His. Hers. Friends of hers. Strong laughter.
Disney. I’d go back three times a year if I could.
Graduation party, bridal shower, and a wedding. Mom being 18 years cancer free. Meghan turned 12, and Felix had a birthday too! We celebrated Pop’s 96th birthday. Celebrations.
Board games.
Green tea – together.
Trips to Ralph’s.
Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
Nutrition packed shakes, EVERY day. Even in Disney. Fueling my body.
Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
Antibiotics that heal recurrent infections.
Walking. 5 miles a day, most days. and at least 10,000 steps every day since July 8th. Goal met.
Last, and DEFINITELY not least, were my walks with Mom. My healing walks with Mom. There were so many mornings when she and I walked together, 2 miles, with 2 dogs. We talked this summer more consistently, and for longer, than we have in a long time. I think this was one of the best things that happened all summer. She is a strong lady. Lyme Disease took a stab at her this summer. Apparently for the second time. And she has told it where to go. So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS. I will miss those walks. They were not just for the FitBit, but so much for the heart and the mind.
My Mom. My first hero. My friend. We need an updated picture.

And that is just what my compulsive, reflective, organized self needed.

Because now, I feel a little better. It wasn’t what I had hoped. There was sadness, and worry. for my own girl, and for so many others. For adults I love, and for a former student fighting a formidable battle.

But, I woke up every day. And lots of days the sun shined. And fun doesn’t have to stop just because school starts.

So as I lay my head down tonight I will do my best to do it with gratitude. For new days. For new seasons. For a job with a kind boss, helpful colleagues, and wonderful children. For a job that begins new every year. For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.

I wish you all a wonderful fall, but I’m not closing the pool just yet….