“She’s so unusual…” and Other Ironies

Published on July 19, 2015July 19, 2015 by beatingcowdens3 Comments

This is quite a garble of thoughts… good luck!

** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**

I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?” Sometimes I find that question to be the biggest irony. I struggle often, and deeply. The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.

But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”

So often my writing is where I work it out. I type. I think. I read and reread. And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need. And when I am unsure, and it just doesn’t sound right. I wait. Just like I advise people to think before they speak, “Is it true? Is it kind? Is it necessary?” I try to think before I publish. So last night I sat wrestling with this. And I never hit publish.

From “Corner of the Sky,” Pippin soundtrack

Everything has its season
Everything has its time
Show me a reason and I’ll soon show you a rhyme
Cats fit on the windowsill
Children fit in the snow
So why do I feel I don’t fit in anywhere I go?

So again we hear, “That’s really unusual.” “I’ve never seen that before.” “Typically…” And I chuckle, in frustration and in the irony of it all.

This time it was at the dentist. Meghan felt something in the back of her mouth. An X-ray revealed an impacted wisdom tooth. She’ll be 12 next month. The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm. Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.

This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy. Who really knows where that will lead?

I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density. My next phone call needs to be to the vascular surgeon. He had some success with the right leg in February. The left leg is in dire need now. That is as soon as I can settle the errors on the anesthesia bill.

The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk. Meghan and I both need to be scheduled.

I just finished completing the papers for her medication for the 2015-2016 school year. They are copied, one is filed, and one is set to be mailed Monday.

We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser. We’ve got some neat ideas. It passes the time.

For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,” and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age. One day we will take her to California for the Global Genes Advocacy Summit. One day her vision of a denim ribbon necklace will come to fruition. One day. But not this year. Because this year I am trying to schedule vascular surgery that weekend. Because we have to prioritize. Right?

I have set some fitness goals this summer. I am setting a 10,000 step a day minimum. I am aiming for at least 5 miles a day. My dog is in the cross-fire of this goal. She is my walking partner. Because she likes to walk – but maybe not quite that far- and she can’t really say no.

I am always struck by the ironies in life. I am stronger than I have been in years. In many ways I am healthier. I have found Isagenix, and I feel better. Stronger. More resilient. More able to cope with life’s obstacles.

Which is good. Because life has a tendency to be really isolating.

I suppose we all feel that way sometimes. And many of us feel that way most of the time. But, sometimes that is little consolation.

I am grateful not to fit in with the Moms of really sick kids. I don’t envy them at all.

But, I can’t find a spot with the Moms of mostly healthy kids either. Unless I don’t talk much.

Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.

I want to spend time with people my own age. I have lots and lots of people I like, but not too many friends to get together with. Sometimes I wonder what it would be like to just get together. And chat. Maybe over lunch, or dinner, or drinks. Or maybe have a barbecue, or even a night with other couples. Where everyone socializes. And no one is overly worried about anything. But we end up declining the few invitation we get because something always seems to be in the way.

This life is isolating. The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with. And I get it. And it doesn’t make me mad. Because it is what it needs to be right now. And there are friends I talk to and text with.

Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that. What I write here is a simple representation of facts that are. They just are. And maybe one day they won’t be. But, I have already learned not to wish life away, not even the uncomfortable parts.

But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom. I crave careless, schedule free days. I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.

Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere. Somewhere with an end I can not see. There are stops along the way to make us stronger, wiser, and more patient. There are lessons on empathy and compassion to be learned. There are experiences that will turn us into the people we were meant to be. The road is long and winding. Sometimes the climb is tough. But, but the view, when you really stop and look, is amazing…

Rivers belong where they can ramble
Eagles belong where they can fly
I’ve got to be where my spirit can run free
Got to find my corner of the sky…

I ended last night feeling lonely, and lost. The song from Pippin had been in my head all day, resurrected from memories of ages ago. Yet, I couldn’t shake it. Where do I go?

This morning Meghan was well. She woke up well, and early enough to make a two-hour morning swim practice, which she completed. I had time to walk a few miles near the pool. The sun was beautiful, and the air wasn’t quite that warm yet. There were birds singing happily, and flowers to appreciate.

After swim we made it to church. It had been a few weeks since we were able to get ourselves there.

And in the bulletin I was met with a quote,

“I know I cannot enter all you feel

nor bear with you the burden of your pain

I can but offer what my love does give –

The strength of caring, the warmth of one who seeks to understand.

This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman

There was a basket of rocks where we were instructed to take one to represent us. The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ. Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.

We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts. As I chose mine my eyes were full of tears. Not of sadness for those people, but of the promise that they are also enveloped in the love of God. My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water. And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.

The closing hymn (words and music by Marty Haugen, 1987) began like this;

“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”

And the idea that we are here to “Bear one another’s burdens,” permeated my heart.

I am not “UP” by my doing at all. I treat my body well. I treat my mind well. And I allow my soul to be cared for.

My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God. That all things are not mine to know, and that through His grace alone we have the strength to remain,

“BEATINGCOWDENS!”

Appreciating the Rainbow AND the Storm

Published on July 7, 2015 by beatingcowdensLeave a comment

Let’s be real. Plain. Honest. Real.

Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time. Because EVERYONE HAS SOMETHING….

No one’s life is easy. The trick for me is realizing that and moving on.

Yep, some days I throw a fit right here in my house. Some days I am sad and overwhelmed. Some days I even cry, like here (http://wp.me/p2qi4v-10g)

But, the rule is about 15 minutes. I am allowed to have a pity party for about 15 minutes. (Sometimes that 15 minutes happens again, and again – but not usually.) Because then, I have to put on my big girl panties and make it work.

We play a lot of games of perspective here. We work on looking at things another way. “Flipping it…” so to speak, to try to get through.

The end of school is a crazy time for us. It’s supposed to be a time to rest, and unwind. But, really, it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July. This way if anyone needs anything else there is time before school starts again. The other cycle is distributed around February vacation and school holidays. The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives. There is a good deal of “Go, go, go…”

Despite our occasional “preteen issues” my daughter is insanely easy to please. She wants to swim. She wants to act. She wants to read. She wants to watch tv. She wants to socialize with ~~children~~ preteens who are nice to be around. She wants to eat good, safe food, (cooked by her father not me!)

What she’d prefer not to do is sit. In the car. On the BQE. On the LIE. In the waiting room. In the exam room. Over, and over and over. Yet, still she handles it gracefully. She packs her own bag with a variety of things to occupy her time, and some snacks too. She really does not complain. (Except maybe if there’s a needle…)

What I try to do is spare her some appointments any chance I get. So when mine come up I try to leave her behind, and that’s what I did yesterday and today.

See, between us, there will be 15 appointments in two weeks, ending this Thursday.

This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone. Meghan was tucked away at camp. Happy as could be.

I sat in the car, alone. The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.

I noticed today I was very calm. This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful. But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.

Some of our doctors could stand to be replaced, but many are stellar.

We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.

We have real life conversations, about real life problems, and we handle them with A LOT of humor.

We have a home that is full of love, and a witty, intelligent, young lady growing here.

We have two steady jobs.

We are able to vacation, and enjoy a few extras along the way.

We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well. We are a team of three.

We have found nutritional products that keep us energized and strong as we brave the storms.

We are often dubbed the “healthiest looking sick people.” A comment that always makes me smile.

Some people like to use the word “blessed.” I have some trouble with that. If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.

Grateful – feeling or showing an appreciation of kindness; thankful

Now I do believe that there is always room for gratitude. There is ALWAYS something to be thankful for. For us, there is OFTEN a LOT to be thankful for.

Gratitude is not about always being happy, and life always being perfect.

“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown

Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,” for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.

Today I Cried

Published on June 25, 2015June 25, 2015 by beatingcowdens8 Comments

I cried today.

A lot.

I hate it when that happens.

It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks.

And if they’ve been held in there a long time, it’s really, really hard to make them stop.

I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home. As I approached the room my heart sank and a tear fell. It was empty. That’s never a good sign.

Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.” Which I had figured out all by myself. But, I checked the schedule on my phone to be sure I was right, and I was. 2:30 June 25th. I left work early. Rushed to let the dogs out. Got Meghan. Braved the Belt Parkway. And, made it in just on time.

“Look,” I showed her the schedule on my phone.

She was grossly unimpressed and contacted the doctors direct secretary. She said she called my cell phone on May 18th and left a message. Clearly the message never got to me, likely the result of a simple dialing error. I even flashed the less than sensitive one, my voicemail log on my phone. “See, no call on the 18th.” She was still unimpressed, and now annoyed as well.

Meghan told me this morning her knee hurt. I haven’t heard that with regularity in a few weeks. She told me on the way to the appointment that she was glad to see the doctor today. She said she feels like her kneecap is shifting again. This was a primary cause of her preoperative pain. I could see the swelling. I just wanted some reassurance.

But, it was not to be. Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.

And the tears just started to fall. At first I worked to wipe them away. Then I just let them go.

I was offered a PA, and initially said no. Then I asked Meghan. She said she’d try one.

“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.

YES! I wanted to scream. YES! The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE. Her age is irrelevant. Her experience wins.

So we waited for the PA.

He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.” REALLY? I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,) and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon. We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT. (Summer vacation? Anyone?)

He saw my tears, and saw a weak, unstable woman. I know he did. And for the first time ever I stopped myself from justifying my tears. I simply told him there were many things involved in my frustration that he did not comprehend. The end.

I am done apologizing for my feelings. And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.

And as we got 2 cups of green tea to go, I cried some more.

I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.

I cried because no one really cares. Not really.

I cried as I watched the teen bald from chemo get out of the car. I shed tears of gratitude that it could always be worse.

I shed tears of sadness, for my girl, growing up too fast. Advocating for herself. Standing her ground with doctors. Because she just shouldn’t have to. And I cried for the doctors, who are missing out on a valuable opportunity. They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot. Then I cried in desperation at the reality that they don’t want to.

I cried angry tears for the ones who have no regard for Cowden’s Syndrome. Those who don’t understand it, so they ignore it. They skip over it like a child trying to read a story above grade level. Because they have never seen it, they deem it irrelevant, or unnecessary. They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.

I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments. Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school. I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT. And the following week, appointments for me Monday and Tuesday, 5 in 2 days. Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.

I cried about HOURS of our lives we will never get back. Ridiculous trips that take 5 times as long as they should.

I cried because I am wasting her childhood with necessary evils. And I hate it. I hate it a lot.

I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.

I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.

Eventually the tears dried into a scream or two. My girl had no idea I have those lungs.

And, as we arrived LATE for PT, I breathed a sigh of relief. Behind the doors of Leaps and Bounds PT, they “get it.” So Meghan works on getting better, physically and emotionally in a place she feels safe.

I booked PT through the summer. I had hoped we wouldn’t need to. Not for any other reason than it adds to a schedule we’d rather not have. So that “doctorless month” we’ve been trying to plan for three years isn’t happening this summer.

“I’m over it Meghan.” I told her as we were driving. “I’m over the whole Cowden’s Syndrome thing.”

And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am. I’ve learned a lot…”

And the teacher is the student again.

Tomorrow I will have the tears back in their proper place. Tomorrow. But this is today’s reality, and sometimes that’s OK too. Because regardless – we are

BEATING COWDENS!

#beatingcowdens #collegebound

Published on June 10, 2015 by beatingcowdens2 Comments

No, she’s not going yet. And actually even the thought that she will truly be college bound only 6 summers from now makes me a bit queasy. But, there will be time to deal with that later, and milestones to cross along the way.

For tonight, we celebrate what we hope will be the first of many college scholarships. While the amount is small, and the $1,000 will likely not even cover the cost of her first semester’s books, the honor is great, and the concept that these things can start now is mind-blowing.

The link below only connects you to the search page, where you would have to put in her name and state to search for “Regional Winners,” but the picture shows a snapshot of the reasons for selection.

Regional Winner - Kohl's Cares Scholarship 2015 — Regional Winner – Kohl’s Cares Scholarship 2015

Search for Scholarship Winners using this link.

The award is held by Kohl’s and paid to her “undergraduate institution” upon enrollment. It sounds so formal. So fancy. So far away.

But, it’s not. And time will fly. I know this.

So I run as much as I can, getting to every doctor, and as many swim practices, and drama sessions as I can. She maintains her really high average with minimal input from home. And I bring the computer to swim practice. So I can write. And stay sane. And cherish the little things, which in fact are DEFINITELY the BIG GIANT things.

Tonight it’s not about being sick. It’s about being well enough to overcome. It’s about determination to persevere. It’s about a desire to make life better for others.

She is talking actively about how she will make next year’s fund raiser better. Her goals. She has some other things in the works too. The brain is always going.

She is steering this ship. I am her happy co-pilot. Along for the ride of my life.

Together we are BEATINGCOWDENS, and we WILL NOT be stopped.

Now we’re back where we started…

Published on May 15, 2015May 15, 2015 by beatingcowdens1 Comment

“Do It Again” (The Kinks)

“Standing in the middle of nowhere,
Wondering how to begin.
Lost between tomorrow and yesterday,
Between now and then.And now we’re back where we started,
Here we go round again.
Day after day I get up and I say
I better do it again…”

The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.

But, sometimes it can be hard.

Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”

Knee

Primary Inflammatory (Synovial) Disease of the Knee

Diagnosis

Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.

Injury or Condition

This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.

Cause

The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.

Symptoms

Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.

Treatment

Standard treatment includes:

Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.

Precautions

Important precautions:

Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.

Recovery

As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.

“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.

Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.

We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.

So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”

There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.

I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.

I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.

In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.

I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.

Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…

And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.

I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.

This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.

In desperation I emailed the genetecist who diagnosed us. He responded within an hour.

Dear Mrs. Ortega,

I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.

I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.

Sincerely,

(The angel I need… I hope)

I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.

I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.

“…Where are all the people going?
Round and round till we reach the end.
One day leading to another,
Get up, go out, do it again.

Then it’s back where you started,
Here we go round again.
Back where you started,
Come on do it again…”

Flip It…

Published on April 12, 2015April 12, 2015 by beatingcowdensLeave a comment

Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared. The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself. Then I decided to cross the street. It was a simple idea. Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient. It was just different.

Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata. One day I even found myself talking to one of the neighbors near the icy house. She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible. Made sense. My grandparents are in their mid 90s and live in their own home. They have kind neighbors who often clear their walkway before family can reach their home. But, what if they didn’t. And what if we didn’t live close? It’s easy to judge. I’m guilty too. But I’m working on a simple move, we’ve come to call – “Flip it!”

We talk “Flip it!” when it’s something that can be fixed. When it’s a negative thought that can be changed.

I’m not suggesting the world go all “Ms. Mary Sunshine” all the time. As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad. Sometimes things just stink. Sometimes they are even worse. But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.

I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.

This was not a fabulous vacation, but yet nothing awful happened. We cleaned lots of things. We saw a few doctors. I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again. Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl. Even in this “preteen” phase of our lives, she makes pretty good company.

So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege. The alarm will hurt a little. But I will, “flip it.”

Shopping wasn’t easy. There are shoe challenges for this beautiful girl whose feet are each growing at their own pace. But, we found what we needed, even when I had to buy two pairs and toss one of each a few times. There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday. There is a beautiful young lady. So while the shopping pricey, that job security was a comfort. When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful. In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee. We have the means to keep her dressed as she needs. Can’t always have what you want – but, rather what you need. “Flip it.”

We didn’t make church as a family of three today. Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face. The fatigue was too much. The thyroid hormones still unbalanced. The exhaustion from just being “normal” is too intense sometimes. But I got there. To celebrate our pastor. To worship in a room full of kind souls. To watch a baptism, and to pray. I was alone, but yet I was reminded that I am never alone. “Flip it.”

On April 20th we will make an unscheduled stop to the dermatologist. There is a suspicious mark on Meghan’s side. While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling. We will get it checked, and hopefully it will become quickly a memory. But, we won’t wait. Cowden’s Syndrome is a burden. There is never a break from screenings and testing, and checking. But, we get to strike first. And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now. Our screening and preventative medicine while cumbersome is a gift. “Flip it.”

My heart and my head are full all the time. Sometimes I can keep it in check, and other times I need to remind even myself to find way to “Flip it.”

In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING. It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles. That is how we define where our life will go, and the mark we will leave on the world.

We remain – BEATINGCOWDENS…

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.

“Probably”

Published on November 5, 2013 by beatingcowdens2 Comments

I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’

Today “probably” means it’s most likely migraines causing her agony.

And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.

There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.

So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.

I understand her cautious suspicion, as things have often not gone according to plan.

However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.

So he is 90% sure.

Those are good odds.

Except there needs to be an MRI just to be 100% sure.

And MRI, with gadolinium. Again.

Three steps forward. Two steps back.

But once the MRI is done, and clean, and we can all breathe again, then its onward.

The medicine started tonight. It will be every night. Relief is long overdue.

Fingers crossed. Prayers gladly accepted.

I wish cancer got cancer and died!

Published on October 26, 2013 by beatingcowdens1 Comment

Today was rotten.

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

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

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

And then there was a text this afternoon.

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

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

I knew to get the beast before it got me.

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

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

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

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

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

Ready for a cure.

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

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

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

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

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

Cancer really just sucks.

STUPID CANCER show!

Published on October 21, 2013 by beatingcowdens3 Comments

I am absolutely high on adrenaline right now…

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

https://www.facebook.com/stupidcancer

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

Tonight was the night.

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

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

I find there to be no coincidences in life.

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

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

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

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

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

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

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

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

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