What if every day was a snow day?

Published on February 3, 2014 by beatingcowdensLeave a comment

Now before you jump through the page – hear me out.

The kid in you may be cheering. “SNOW! FUN! PLAY! ”

And the grown up in you may be growling. “TIRED OF SHOVELING AND GETTING STUCK AND BEING COLD.”

But actually, neither is exactly what I meant.

I got a message around noon that my daughter was hurting. The pain has been bad again. The weather doesn’t help. I fought through a wicked virus last week, and there is always the possibility of it eating at her. Her nerves are shot. The thyroid consult is Thursday. Consciously or not – she is worried. I’d be shocked if she wasn’t. I am too.

And between the weather, and the stress, there is the pain. It started a few weeks ago in the shoulder. It found its way to the ankle. Physical therapy in between. Swim practice ends up being haphazard and inconsistent. My heart breaks. I am distracted. Most of the time.

But this afternoon, when we left school together, and there were 8 inches of snow on the ground where it hadn’t been a few hours earlier – no one we were about to meet would have had any real idea of what I wrote in the last 2 paragraphs.

After settling Meghan into the warming car I set about clearing it off. Its a decent car, but a sedan,not an SUV, and while it can handle 2 or 3 inches, it is NOT designed to drive in 8 inches of anything. I ended up on my bottom twice as I finally got the windows and roof clear enough to be safe and legal.

Then, I decided to pull out. Well I went through all the motions anyway. There was lots of spinning and not much moving.

Then there were people all around my car. Some I knew, others I don’t think I ever met. And for a moment getting my car out of the spot was the most important thing on their agenda. They guided me as I behaved like a ditsy distracted woman. They had no idea how full my head was, and they passed no judgement. They were patient. I got free.

I kept driving, ready to make the first right when a woman waved me away. Someone was stuck.

I proceeded straight slowly, and when I tried to move slightly to the left to be sure I cleared someone in the road, I quickly ended up on the curb.

Fortunately no cars were in the way. But I was not moving.

And then… there were people. New people. Surrounding my car. Strategizing. Thoughts of Thursdays appointment still waffling around in my head, I desperately tried to focus. They worked at it. I did as they said. And in a few moments, I was free again.

I kept to the main roads for as much of the rest of the trip as I could manage. And I was doing well until I had to stop to let a car pass at the service road. Stuck again. This time I had the wherewithal to free the car on my own. And as I turned down my block, there was a sense of relief.

So I pulled up alongside our other car to quickly shovel out the spot in front of our house. Then I got in the car to back it up. Spinning wheels. Sliding.

Then there was a neighbor. Then another. People I have lived near for 13 years, but I am embarrassed to say I formally met for the first time today.

This time the predicament was a bit more dicey. My new car was literally inches from the old one. A slide in the wrong direction was going to cost me the front corner panel of one, OR BOTH, of my cars.

Hesitant I called my parents house. I knew my Dad would make it down and help me make sense of it. I frantically shoveled until I could see the blacktop of the street, looking over my shoulder and holding my breath as a few cars sporadically made their way down the street. Our other neighbor, a former bus driver, came over and strategized a bit. Before I knew it the two of them were moving my Saturn out of the way. As my stepdad’s familiar smile greeted my from the window of his truck – my neighbors had safely parked both of my cars – without them ever touching!

Relieved. Grateful. Exhausted. I gleefully accepted my Dad’s news that he’d be using the snow blower on the back of our property and I busily got to work on the front. Street to street property is nice… most of the time.

Some time close to five – a few minutes before my husband got home, I walked my sore back into the house to greet the face of my wiped out “I’ve totally had it.” kid.

Close to two hours after I had left my job, I had to stop for a minute and reflect. The chaos of my mind was still swirling about my head.

I chatted with “The Captain” for about 15 minutes in awe of exactly how many angels had crossed my path today. By my count at least 15 people had in some way “paid it forward” to me and my girl.

And I work less than a mile from my house.

So what if every day was a snow day? Well we may have lots more chances to find out. But, more importantly, what if we TREATED each other, EVERY day, as if it was a snow day. What a wonderful world it would be.

Hope…

Published on January 29, 2014 by beatingcowdens1 Comment

“Hope” is the thing with feathers

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Lots of talk about HOPE this month, as RARE DISEASE DAY approaches. The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle. Hope is complicated. Or its simple. I guess it depends on how you look at it. Regardless, its necessary- for all people at all times.

I can not imagine living my own life devoid of HOPE. FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness. I am convinced HOPE is there, even in the darkest hours. When we look. Here’s what HOPE looks like at our house.

HOPE is the kiss of a dog when the tears just won’t stop.

HOPE is a hug, or an,” I love you.”

HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.

HOPE is believing that it’s all going to be OK. Somehow – some way.

HOPE is pain relief, even if it’s fleeting.

HOPE is quality Physical Therapy.

HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.

HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.

HOPE is laughter.

HOPE is medicine that works.

HOPE is butterfly kisses.

HOPE is the internet, and connections to old and new friends.

HOPE is family.

HOPE is knowing you’re not alone – ever.

HOPE is when that special thing you thought was lost forever… shows up out of nowhere.

HOPE is believing that the surgeon will have the right answer.

HOPE is confidence that you are doing the best you can.

HOPE is real.

HOPE is love.

HOPE – It’s in our Genes!

WHAT IS HOPE to you?

Getting out of my own way…

Published on January 23, 2014January 23, 2014 by beatingcowdens1 Comment

I am actively, consciously, deliberately, trying to get out of my own way.

I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.

But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.

This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

“It’s not sore till I cough. It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”

She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?

Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.

Somewhere in the midst of all this I have to stop and wonder. How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.

How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness

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

Rare Disease Day

Doctors, surgery?

Isagenix – health and wealth

Reconnecting with old friends

Making the time to exercise… cause I like it.

FOCUS

Now if you’ll excuse me… I have to find my way out of this maze…

I’ve got work to do!

Courageous…

Published on January 14, 2014January 14, 2014 by beatingcowdens1 Comment

Lions and Tigers and Bears, Oh MY… Lions and Tigers and Bears, Oh MY…

Three Years ago Meghan was Dorothy for Halloween. The idea originated on a trip to Disney as we went through “The Great Movie Ride.” Felix and I realized she had never seen “The Wizard of Oz,” and we had a thrilling time explaining the story and later watching the movie together.

Meghan liked Dorothy because she felt like she could relate to her. She respected Dorothy’s bravery as she led the Lion, the Tin Man, and the Scarecrow to see the Wizard of Oz. She liked Dorothy’s stamina, and her determination. Dorothy never gave up. And she carried a dog. Really, what more could a girl want?

Of course for my only child, my girl, I jumped full in and spent a ridiculous sum on a fabulous Dorothy dress and some ruby slippers. Well worth it. Worth it for the memories, for her smile of excitement, and for days like today when I can remind her that she and Dorothy have an awful lot in common.

Meghan is fighting shoulder pain. Deep, knotted pain. The mean, painful kind, only pacified with full strength muscle relaxants, that you don’t wish on anyone – especially not a 10 year old. And definitely not THIS 10 year old.

One might theorize that its stress related, and one might even be tempted to tell her to relax, and let a few things go. One might be tempted to admonish her for making herself so tense. Really, at 10 – what should she be worried about?

Then if that very same person, who hopefully thought before they spoke, really contemplated the life of this kid – they might understand. They might even grab a pen and help her write her homework, or make some time to rub that shoulder.

And, while they rubbed, and listened to the throat clearing which must just be flat-out annoying to HER, they would really be in awe that she holds it together as well as she does.

She is a kid. A kid with a growing up body, and grown up worries. And a kid who still has kid worries too.

While anyone who sees her sees a cool, confident smile, and a remarkable, articulate presence, only a precious few have glimmers of the “lion” side.

Meghan strives to achieve excellence, all the time. She wants to do her best in school. Actually, she expects herself to be perfect in school. She agonizes over each step along the way. She loves the children. She enjoys the teachers. And this young lady who spends so much time feeling “abnormal,” strives every second of the day to fit in perfectly at school. She relishes the feeling of “normalcy,” even if only for a few hours each day. The problem is, anything less than perfection is unacceptable to her.

Now, if I am honest, and introspective the phrase “alligators have alligators” comes to mind. She learned a lot of this worry from me. And even though I do not have the expectations of her that she has of herself, I have those expectations of MYSELF. I want to give it all to everyone, all the time. And sometimes, I feel as though the “perfect storm” is lurking, and my inability to “let it go,” could be the inevitable cause.

But what to “let go?” Please, don’t even get me started. Maybe instead I, the lion, should focus on my faith – toss it up to God, and lead by example.

Easier said than done of course.

So I, the Cowardly Lion watch, as my brave Dorothy leads down our “Yellow Brick Road.”

Sometimes we have to duck out of the way, as obstacles fly in our faces, but we press on. And I watch as my brave girl starts to work on a Rare Disease Day Movie Night fundraiser. I watch as she puts others first. I follow her lead, glad to be her back up.

I watch as she gathers information. I listen as she asks her aunt to help her create a Power Point. I admire her focus.

She suffers. She grieves. She stresses. She panics. She hurts. But she perseveres.

Rare Disease Day – February 28, 2014.

Thyroid Surgical consultation – February 25, 2014.

Making a difference every day.

She was made to be “Courageous”

We are “beatingcowdens!”

Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

It’s not malignant… BUT…

Published on January 3, 2014 by beatingcowdens7 Comments

It was an interesting phone call this afternoon.

I knew from the caller ID that it was going to be the hospital with the pathology report. Home on a snow day, relaxing with the family – I took a deep breath. It was the endocrinologist on the other end of the line.

“I have the results of the pathology…”

AND???

“The samples are not malignant, but…”

YAY, and UGH!

And there followed a conversation that lasted several minutes. I tried multiple times to use the word “benign” to refer to the results. Each time I was carefully deflected. When he spoke he never said “benign’ once – only “not malignant.” Synonyms – yet apparently not interchangeable.

Someone less in tune might have missed this conversational nuance. I don’t miss much when it comes to my daughter.

So the doctor recounted how each off the 4 cell biopsies obtained through the Fine Needle Aspiration, showed cells that were “not malignant.” When I asked about the cells, specifically remembering the “precancerous” title given to the cells that had brought us to this hospital to begin with, he told me again the report says they are, “not malignant.”

SO WHAT’S NEXT?

I know I didn’t imagine the deep breath on the doctor’s end of the phone when he began, “Typically, we would follow the case in 6 months with an ultrasound, and I think you should make that appointment.” Then there was a deep breath and a pause. “I also think you should take her to see a surgeon – just for another pair of eyes.”

Now I was thoroughly confused. “Why? Do you think the throat clearing that has been going on could be related to the nodules? What about the Fine Needle Aspiration? How accurate is the test?”

He addressed one question at a time. Almost as if he expected them. He and I were not fast friends, and he often seemed annoyed by the countless questions I ask. It never stopped me, but I couldn’t help but notice he was almost anticipating my questions today. Maybe he was even welcoming then. I flashed back to that visit on December 19th where he was visibly uneasy about the feel of that right thyroid. “The FNA is accurate 90-95% of the time. Usually that is not an issue because thyroid cancer tends to grow very slowly and if we follow every 6 months, we will typically catch anything we need. That being said, in a situation like Meghan’s where there are so many nodules, and there is Cowden’s Syndrome, it sometimes is harder to manage. In regards to the throat clearing – I don’t THINK it’s caused by the nodules, but again I can’t be sure. Why don’t you set up a consultation with the surgeon?”

Deep breath. It’s good news I kept reminding myself. It’s not cancer. (Yet… nagged the little voice that never knows when to shut up.) I reassured him that I would schedule the appointments with him and the surgeon. Of course after I arranged to have the pathology and ultrasound reports Emailed to me so I could agonize over every detail…

I scheduled the appointment for the first week in June. I tried for the first week in July – but he is on vacation that MONTH… Then I sat down to Email Meghan’s hematologist/oncologist the reports and ask her opinion. She concurred with the endocrinologist and approved of his choice of surgeon.

Within 45 minutes my phone rang. The caller ID showed the hospital number again. This time it was the surgeon’s office. They were contacting ME, at the doctor’s request – to set up a consultation for Meghan. Well I have to tell you that didn’t do a whole lot to ease my mind. Obviously it was nagging at the doctor enough that he reached out to be sure I made the appointment. Scheduled. February 25th. I couldn’t get a time because they call the day before with that. So, I explained how much I really NEED to be at work. They made me no promises. The 25th it will be. Regardless of the time.

The snow was so pretty today. So nice to be home as a family, to shovel, to play, to take some pictures, to watch an old movie.

I sat down to type this almost three hours ago, but somehow as Meghan was getting ready for bed she developed severe pain in her back and a ruthless headache. Reminders that even an hour or so in the snow is too much for her body to endure. Frustration. Fear. Two hours at her side, her father and I alternating pressure on the most painful spots. She’s asleep in my bed now. Moaning. The night will be long.

Some time this afternoon I realized again, that this is just how its going to be. We are going to walk out of one fire, while walking around another. We aren’t going to know the hows and whys. We aren’t going to be able to make many plans despite our best efforts. This is life with Cowden’s. This is our life.

And tonight, as I held my husband’s hand, and we each had one hand helping soothe Meghan’s agony, I realized again that through the depth and power of our love for each other – all of us – this works for us. It’s not what I would have chosen, but it’s what we have.

Never in my wildest dreams could I imagine a day without the two of them. Somehow, that has to make us the luckiest family in the world.

And that is my happy thought tonight.

Happy New Year!

Hurry up… and WAIT!

Published on December 31, 2013 by beatingcowdensLeave a comment

Hurry up – and wait. And wait. And wait.

I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work. We race to take our children to the many places they need to be. We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.

In our house we race. Gratefully, we have added something fun in the form of Swim Team this year. There are many weeks there is even time for two practices. So she won’t be an Olympian. But some fun is an improvement.

Because without that Swim Team – it was all medical – all the time.

Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York. And they all require regular check ups…

“Skip it…” whispers the voice inside your head. “I don’t have time…” “We won’t make practice…”

But “skipping it” is not a luxury we can afford. Cowden’s Syndrome has robbed us of the luxury of putting it off. It is the clock that is always running. It is the reality of my breast cancer – beaten. It is the “reminder” in my iphone. It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.

And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks. Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.

There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few. Some are once a year. Most are twice. And that’s all well and good if everything checks out fine. However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….

Last year I tried to get them all done in July. That was pure indescribable hell and it swallowed our whole summer. Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.

And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.

So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in. We often find ourselves racing into an appointment after a long day – only to find ourselves waiting to be seen.

“Hurry up – and wait.”

Meghan is an outstanding “wait-er.” Partially because she’s used to it, and partially because she knows it’s necessary. We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied. But she would rather be playing. Or swimming. Or resting. Or crafting. Or just being a kid.

We find ourselves facing the same problems many other families face – laboring to fit in time for fun. But it is further complicated by fatigue and a lack of stamina. She can not walk more that about 3/4 mile without wiping out. She will, when time allows, sleep 13-14 hours a night. So we have to always be careful not to push too hard, because the repercussions can be serious. Sometimes I imagine friends think we make it up.

“Hurry up – and wait.”

And we raced into Sloan Kettering Cancer Center on December 19th after school. I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.

But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck. The one she feels every time she goes to put her necklace on. The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.

So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned. He asked for a tape measure. His eyes were serious. He spoke of significant growth. He said we needed a biopsy.

“So let’s do it. I am off for 10 days.”

“Well, you know, with the holidays…”

“Let’s hurry up and get it done. I will take whatever you have.”

And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof. The doctor explained that the radiologist doing the FNA needed a recent ultrasound. (You mean like the one I had asked for with the December appointment all along?) I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute. So we did. Ultrasound December 23rd. FNA under general anesthesia on December 31st.

“Hurry up – and wait.”

Apparently no one got the memo things have been a bit stressful around here this month.

So we did the ultrasound on the 23rd. 30 minutes with the tech. Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan. Nothing going on on the 23rd of December. No worries.

“Hey, that’s a lot of nodules on a young lady…” says the doctor. ARGH!

So when do we squeeze in something fun? Something she can say she DID on the vacation?

We made it up to see the New Year’s Eve Ball very early on that Saturday morning. Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month. Trying to find the time to view her world through a camera lens. We spent about an hour. Then we went home.

Photo credit -Meghan 12/28/13 — Grandpa Tom’s “smile”

There were 2 play dates. Lovely girls. So I guess there was success.

And then today.

Arrive at 6:30 I was told. So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.

“Hurry up – and wait.”

We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor. The procedure was at 8:15 and lasted double the time it should have.

We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.

I may have a few cocktails myself as midnight approaches. If I stay awake that long. After all its been a long day, week….

And we know Daddy’s got the New Year’s Eve Ball well taken care of.

“There’s a bit of magic in everything, and then some loss to even things out…”

Published on December 28, 2013December 28, 2013 by beatingcowdens1 Comment

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head. I have thought of the song from time to time over the last 20 or so years. The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991. As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song. It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years. But I have a brother. And I am damned glad I do.

I have always loved him. Always known he was there. Always followed the tales of his life from afar. Always sent a card. But, never really got to spend any quality time with him. Knew he was well loved. Knew he was tons of fun. But never really got to KNOW him. Not by anyone’s fault. Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call. I had to call him in the middle of the life he established Texas, and tell him Dad was sick. Quite sick.

I had known for a few weeks. I had seen him in the ICU. I knew about the jaundice. I knew in my gut things were not good. But it took weeks to get Dad to let me tell my sister the full extent of the problems looming. Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call. “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time. He parked himself right in Dad’s apartment and stayed. He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker. Quickly. And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger. We grew up understanding each other’s strengths and weaknesses, and working on love throughout. Now I was in a different trio. A different dynamic. For a different purpose. One none of us wanted to face – but we were there. And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years. We took the best of what each of us had to offer. We laughed at old stories. We cried out of sadness and frustration, and anger and disappointment. We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state. My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell. Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better. We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles. Dad’s worries. Dad’s heartache. His pain. They were about to end. He was going to be free from his broken body. He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven. But I am selfish. I miss him. I miss my sounding board. My ally in all endeavors. My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today. We stood for a while. We cried a little. We prayed a little. We held each other a lot. We know he’s not there. He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him. But I admit to not shaking the selfishness.

We ate pizza as a family. The conversation was easy and light. Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest. She told him all about the arrival time, and the procedure. She spoke like a pro – someone easily twice her age.

So much uncertainty. So much loss. So much worry. So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks. This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother. And now I have to let him go. But not far. And certainly not forever. For no one can live through what we lived through these last few weeks and remain the same. There are experiences once shared that can not be forgotten. There is respect earned that can never be lost. The lesson, the reminder that life is fragile and fleeting remains forever. I always had 2 sisters. And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Disconnected

Published on December 19, 2013December 19, 2013 by beatingcowdens1 Comment

Breathe in… Breathe out… Breathe in…

I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.

I know that’s wrong for any number of reasons, but I have always been candid here.

In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.

And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.

This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.

Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.

It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.

So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.

But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.

Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.

I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.

Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.

And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.

So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”

My heart skipped a beat.

“Where did you get that necklace Meghan?” asked the nurse.

“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”

Sometimes silence really is deafening.

“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”

Yep. I know.

This one is for my favorite Marine

Published on December 7, 2013December 7, 2013 by beatingcowdens9 Comments

There is a small sign on the first floor of the Veteran’s Hospital in Brooklyn, NY that expresses this sentiment.

It is small enough that I missed it the first week my Dad, a Vietnam Veteran was in the ICU for what they initially suspected to be liver failure.

But I noticed it last week. Dad died on December 4th after a short, yet powerful battle with pancreatic cancer.

The Price of Freedom, of our freedom, the basic ones that we are all guilty of taking for granted at some point – is visible at that VA Hospital. It is visible on the faces of the soldiers as they trek the halls, their journeys each through the battlefields of their own personal wars.

I have been away from my blog for a long time, and as I sit to write in the middle of the night, I can feel the tension finally beginning to lift from my neck. Writing is my therapy and its cheaper and easier than the wait and the copay at any doctor’s office.

Dad didn’t have Cowden’s Syndrome. Or at least we don’t think he did. As a matter of fact, prior to his death, with the exception of one procedure – he was never really sick a day in his life. When we would go to his appointments together, nurses would repeat in disbelief, “You don’t take ANY medicine?” And he didn’t. Not even a Tylenol.

Which is one of the things that has been bothering me so much.

I have held in my thoughts on this out of respect for Dad and his privacy – but since he encouraged my writing I am fairly sure he wouldn’t mind if I shared just a bit.

Dad saw active combat in the USMC during the late 1960s in Vietnam. And besides the typical tortures of war, Dad was exposed to Agent Orange.

Now his body was seemingly unaffected from the toxins, but we theorized on more than one occasion that perhaps that toxic exposure triggered my own gene mutation into Cowden’s Syndrome. Of course no one will ever know. And even as I wonder if his cancer was a result of his own toxic exposure, I know I will never be quite sure. His Dad, my Grandpa, died of pancreatic cancer in 1993.

But pancreatic cancer IS a genetic disease. And even though in 90% of the cases, the genes spontaneously mutate, there are 10% where the genes are passed within families. I don’t know the exact genes responsible, although I will in the coming months, as the genetic counselor where Dad was diagnosed will be contacting my siblings and I for testing.

More genetic testing? It’s a thought too overwhelming to process right now. That will come with time I guess.

I can’t help but wonder when there is too much knowledge. I know that sounds foolish, coming from someone whose life was saved by the early warnings afforded to me after my Cowden’s diagnosis. However, there is a point, a fine line, where you start to wonder when too much knowledge becomes a bad thing.

Tonight my thoughts are all over the map. Tonight I prepare mentally for the wake and funeral over the next few days. Tonight, I think about my Dad – the man.

Dad enlisted in the United States Marine Corps right out of high school. He saw 13 months of active combat before returning to marry his high school sweetheart, my mom. But, as young relationships so often go, this one ended a few years later.

Dad spent years trying to get settled in his heart after the trauma he experienced in the war. He married again, and had a son, my brother. But that marriage was not to be either.

Dad seemed to have a need to move like the wind for a lot of years, and our relationship through college was pretty distant. Then in 1999, a year before my wedding, we began to reconnect, and our relationship had become closer each passing year.

Dad was not a saint. But he was a good man with a good heart. He was strong in mind, body and spirit. Dad did the best he could with what he had where he was – always.

I spent lots of time working to understand the trauma that follows Veterans home. Because of that I will always respect my father and the ways he tried his best.

But if I am honest, I am angry. Really angry. Not at my Dad, but at the cancer that snatched him from me just as we were coming closer and closer together. The damned cancer that cut short a relationship just starting to bloom. We had plans. We were going to see the cherry blossoms in DC in the spring. We still had things to do.

Instead I am left with another ribbon to add to the collection. One none of us ever wanted to own.

Dad often spoke about life being a puzzle, and each of us having a piece to contribute. From our perspective its hard to see where we fit, and how our piece changes the landscape. But, when our job is finished, our piece is placed into the puzzle – the greater puzzle – the one with no definitive number of pieces. While this happens, our surrounding pieces are created. The puzzle grows, visible in its entirety only to our the Creator.

As Dad’s piece was being placed into that puzzle, I was being reconnected with my brother, and bonding with my sister. We learned to work together, to embrace our gifts, and our differences as strengths. As a unit we were an unstoppable force getting our father anything he needed during these last difficult weeks, and I am so proud to be part of that “team.”

My father’s inner strength defies description, as he journeyed through his last days focused on a few key things he was compelled to accomplish. Almost impossible to eat comfortably, Dad carefully conserved his energy and skillfully kept his body functional until he was able to receive his definitive diagnosis. A diagnosis I am certain he fought for so that his children would have the ability for advance screening.

Dad was admitted to the VA Hospital on Thanksgiving Day, and lived for a week, as a parade of family and friends got to spent time by his side.

I walked the halls of that hospital quite a bit last week, reading prints of the NYC Vietnam Memorial such as these, as my already deep respect for our country’s veterans grew.

We laughed, and cried, and told stories, and played music. We held Dad’s hands in the moments before he went to meet the angels. We were gifted with time to say goodbye.

My tears are not for my father. He is finally free. He paid the price for our freedom for all of his adult life. Now he is at peace.

My tears are because I want more time. My tears are selfish. But I guess I good sign that you really love someone is when you can’t seem to bring yourself to say goodbye.

There will be time for thinking and reflecting on Dad, his life, his death, genetics, and long-term ramifications.

But for now, I have to get some rest. Three days ahead to celebrate the life of my favorite Marine.

Semper Fi, Daddy. I love you.