Christmas – beatingcowdens

“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…”

Photo credit -Meghan 12/28/13 — With a “Smile” from Grandpa Tom

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.

Are you Santa?

Published on January 20, 2013 by beatingcowdens3 Comments

I can not take credit for the content of this letter. I found it on the internet, but it met my needs, as the questions started coming fast and furious. How can Santa…? How big is the tooth fairy…? All ways for her to let me know she “knew” and was ready for me to tell her. I on the other hand was not ready at all.

January, 2013

Dear Meghan,

You asked a very good question: “Are you and Dad Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. We are not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mommy

I cried for at least an hour. She handled it with her normal grace and poise.

I hope she never loses her sense of wonder. Sometimes I wonder how broad the shoulders of a 9 year old should have to be. I know they all have to find out some time, but life is tough enough, escpecially when chronic illness fills your days. They should stay young as long as possible.

She already has plans to fill my stocking next year. She said I shouldn’t have to do my own – lol. ❤

And… Just in case I was worried – she said, “Don’t worry Mom, Disney is still the happiest place on earth!”

The Changing of the Calendar

Published on December 31, 2012December 31, 2012 by beatingcowdens2 Comments

Every year, this same week, I sit down with my calendar, and one for the following year. I carefully transfer all the important dates I need to remember. I write the birthdays, anniversaries, and other important “days to remember.” There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up. I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.

During the course of the year, around all the birthday and anniversary reminders, the basic events of life fill in the blanks. I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through. There are the basics, PT, swimming, dance class, music class. There are some parties, and celebrations. Around them are peppered annual exams, like the cardiologist and the eye doctor. There are some “sick” visits with the pediatrician in there too.

But last year was a “special” year. Between us there were three surgeries. Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits. I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way. There were certainly a lot of firsts in 2012.

And, sadly there were some lasts too. I couldn’t bring myself not to write GGPa’s birthday on the calendar. It would have been in just a few weeks. Instead I wrote it with a heart around it. This year he will have his cake among the angels. Nor could I stop myself from remembering his and GGMa’s anniversary the same way. It didn’t feel right to leave it off. I am sure she will appreciate a call or an Email anyway.

GGPa, GGMa, Grandma, and Pop (left to right)

I remember lots of birthdays on my calendar. Some for the very young, and others for those quite senior folks I love so much. But, even as I ink those special days into 2013, I know there are no guarantees. I know that my writing their special date doesn’t ensure that we will all celebrate together. It is reality. It is sometimes tough to swallow, but we are not in control.

In Newton Connecticut many young lives were tragically altered. “Calendars” forever changed. No rhyme or reason. No notice. Gone way too soon.

I attended the wake of a colleague tonight. A 45 year old, happily married father of three. He died suddenly Christmas Day. I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him. His every breath was consumed wither with song, or words of his love for his family. And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.

Meghan was sick this morning. Sicker than I have seen her in quite some time. I was home alone, as Felix works this whole week before New Year‘s. As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified. I called my sister to bring me Pedialyte and some essentials. We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach. I held her as best I could and I prayed, hard. I needed guidance. I needed answers, and I needed that pain to be relieved. He heard me, as He always does. She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her. I hadn’t seen that agony since the days of the gall bladder attacks when she was three.

We had had plans today, to celebrate my grandparents 67th wedding anniversary with them. Even as the color came back into her cheeks, and the spring back into her step. we stayed home. The lunch date that was on the calendar – unattended. Our warm wishes sent with a phone call instead.

The calendar is a nice guide. A road map of sorts. It tells us where we hope to head. But, as every day reassures me – it, like life, offers no guarantees.

This week the phone will ring. Appointments will be set. A thyroid biopsy will be scheduled. A surgeon for my spleen may even get written in to the calendar as “consultation.” 2012 for us will end as it began.

Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.

Two of a Kind

Published on December 29, 2012December 29, 2012 by beatingcowdens5 Comments

The upside of waiting I guess, is that it gives me a bit of time. Since I can’t concentrate, I multitask. Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine. Seems like a perfect time to stop and blog.

A few months back I posted about Meghan‘s necklace. The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans. She received it in August and was so thrilled. She wears it proudly and looks at it as a platform to explain to people what it stands for.

Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser. She has this hope that her idea will ultimately raise money for rare and genetic disorders. I think she is right, and eventually they will get to selling it. Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project. They are a super organization. Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.

This fall she had my friend’s husband – who created the piece, engrave hers. It says “August 2012 – First of its kind.” How appropriate. I am quite sure my girl is the “first of her kind” as well.

Because, she decided she wanted me to have one too. A necklace like hers.

“After all Mom, you didn’t just have breast cancer. Cowden’s Syndrome is what we will both have – forever.”

She’s right. As I gulp the last of my wine. We are at this forever. Together. And as much as it flat out stinks, I wouldn’t want to share forever with anyone else. She is one awesome little girl. Each of us 1 in 200,000. Lucky enough to have each other.

Perspective… with a touch of fatigue and frustration

Published on December 20, 2012December 20, 2012 by beatingcowdens2 Comments

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

Reflections

Published on December 16, 2012 by beatingcowdens3 Comments

I can remember as if it were yesterday, walking the halls of the elementary school where I am a teacher, in the hours after I had heard of the horrors of 9/11. I attended the same school as a child. I knew that the lives of the young second graders I now taught would never be as happy and carefree as mine; some 20 years prior to that day when everything changed. It was an eerie feeling. One that I knew would be realized gradually. It was a moment I have reflected on countless times through the years.

Friday was a busy day. I never stopped for lunch, and it was 6th period before a colleague mentioned the shooting in Newton, Connecticut. At that point the details were still extremely sketchy, and while I was troubled, I was not nearly as disturbed as I would come to be over the next few hours.

As the details of what had transpired at Sandy Hook Elementary school began to unfold this weekend, I was, like any other compassionate human, horrified and appalled.

I send my child, my heart and soul, to a school a few minutes from where I work. The staff is dedicated, and caring. Honestly, I never gave her safety a second thought. But, after visualizing the entrance to her school – so close to the cafeteria, often full of children. Well, my mind when left unattended can do some awful things.

And then there is my own school. The school I attended as I child. The school I have taught at for 16 years. The children who are the siblings of others I have taught. The families I have known for years. I think about these children often. I talk about them at home as if they are part of my family. I live each day with the knowledge that I am entrusted to educate, and keep safe, someone’s “heart and soul.” This is not a responsibility taken lightly.

I know the exuberance of a room full of 6 and 7 year olds. I know the electricity in the air in the weeks before Christmas. I know the love in a teacher’s heart when she hides her students in closets, or tells them she loves them.

What I do not know, what I can not imagine or comprehend, is the heart of a man who walks into a school building and kills – 20 children and 6 adults. I can not know. Nor do I want to.

It is not my place to judge him. It is not my place to publicly state his wrongdoing. I have a strong faith, and I leave the sorting out of all that to God.

I know with confidence that those who died, as young innocent children, or their protectors, were welcomed warmly though Heaven‘s gates. They are not the ones I worry about anymore.

As a parent of an ill child, especially one that suffers with a ruthless rare disease like Cowden’s Syndrome, I do not know a day of peace. I worry from sun up to sun down about tumors, and growths, and headaches, and hot flashes, and lingering maladies that don’t suit a 9 year old. I am always at the ready because I don’t know what we will be fighting next. But I can tell you this- there is no part of me that would trade places for a second with these families.

I have the blessing, if you will, of knowing something about our enemy. We have the ability to be proactive. We can battle. We can prepare. We get tired, but we can win.

Evil ripped these lives from their families. There is nothing they could have done better. or differently There is nothing they could have fixed or prevented. They went to school. They went to work. And they died.

So, what can you take from this whole nightmare?

I will take from it that I need to do more of what I do every day. I need to hug my daughter and my husband. I need to tell them I love them every time it crosses my mind. I need to serve ice cream for dinner sometimes, because its fun and silly. I need to look less at the clock and more at them.

I need to prepare for the holidays with a different mindset. I need to organize, but not to a fault. If the cookies don’t get baked – I need to buy them. If the cabinet’s don’t get cleaned, I need to serve extra wine so no one notices. If I can’t cook it, I will order it. And come Christmas Day we will sit as a family. We will count our blessings, and remember our lost loved ones. We will understand that we are all different – and we are all the same.

The battles we face in our house are real. The journey is not always easy, but every day that we are together is a blessing. And there is no promise of tomorrow together on this earth.

Monday will be here in a few hours. I will send my little girl on the bus to school, with an extra lump in my throat. I will head the short distance to my school where I will look at everything with an eye towards awareness. I will look at my students and remember the lumps in their parents throats. I will look at my colleagues and respect that we all have the same goals in mind.

And when my phone rings, and I get the news about my spleen – bad or good. I will take a deep breath and keep on swimming. No matter how tough things can get, it could always be worse.

May God, and all the angels above surround the families and friends of all the victims. And may they all rest in peace.

Respect the Spleen

Published on December 9, 2012 by beatingcowdens3 Comments

I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.

Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.

The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.

So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.

So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.

Well meaning people say to me, “Don’t worry – you can live without your spleen.”

Sometimes well meaning people should smile and nod more, and speak less.

Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.

I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!

Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.

Heck, I didn’t go through all of this past year to be beaten by my spleen….

What’s in a name?

Published on December 9, 2012December 9, 2012 by beatingcowdensLeave a comment

It has definitely been a week, (ok – month…year) for reflection.

I started this blog in May of this year, after some encouragement from another Cowden’s sufferer. Once I realize how to do it, I was prompted to name the blog. I didn’t really give it much thought. I went with the first thing that popped into my head. And so, “beatingcowdens” was born.

The name seemed appropriate at the time, and I guess it still is. But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago. Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.

Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be. So now, I view it as a process. I spend each day, “beating” Cowden’s. Every time I get up. Every time I go to the doctor. Every time I fight to get better, and recover. Every time I explain to my daughter that it is all about HOPE and determination. This is all part of the process we call “beating” Cowden’s.

So really, what is in a name?

I guess it’s all about perspective – but then again, isn’t everything?

I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania. We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the Christmas Vespers at Central Moravian Church.

After a few hours in the bus, we got to tour the town. We walked up and down Main Street, enjoying the little shops, and a nice dinner. It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy. It was better than filling out paperwork related to the car accident. It was, even through the chilly mist, a nice family day.

Although I must admit, as we gathered into the church for the service I still felt a bit odd. For so many years, and until so recently, I sharply defined myself as a Lutheran. Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.

Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year. So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship. It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd. I made a left and parked. I went into Castleton Hill Moravian Church on what I thought was a whim. I later thanked God for sending me the message I had been asking for. I brought my family the following week, and we have been attending faithfully as a family ever since.

So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”

I know a good deal of Lutheran theology, and I am learning the history of the Moravian church. There are countless similarities, and a few differences – all of which I like. Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.

So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed. I asked God for peace from the constant turmoil that seems to surround our lives. And, as I sat there with my husband and my daughter a deep peace settled on my soul. Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.

What’s in a name? Lutheran, Moravian…. I don’t think God cares. He looks for a heart that is right and focused.

I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.

Christmas Letter 2012, and some unexpected happenings

Published on November 27, 2012November 27, 2012 by beatingcowdens3 Comments

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4^th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27^th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67^th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.

Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!

I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

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See, and just when I thought it was safe…

The cards were in the mail Sunday night. I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away. There had been no braking. No horn. The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?