January 2013 – Page 2 – beatingcowdens

“The Six Month Leash”

Published on January 13, 2013 by beatingcowdens6 Comments

The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.

On Wednesday I got word that I can keep my spleen for at least 6 more months.

On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign. We return for another scan in 6 months.

There is 6 months in between visits to the vascular surgeon. 6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too. There are more, so many more, but you get the idea.

See you in 6 months. So we can do it all again.

I am trying to slow down. Instead of waiting for the next appointment, I am trying to enjoy today. I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.

Truth is if I don’t pull the battery out of that thing, I may lose my mind!

It’s not all neat and clean, this whole Cowden’s mess. Although when I stop to think about it, it is readily apparent that life is far from neat and clean.

Reality is that life is complicated.

Life carries with it no guarantees.

Life is what you make of it.

The struggle for everyone is different. Mine is a struggle with my mind.

Beating Cowden’s is not like training for a sprint. Nope. We are training for a hilly marathon in the snow. We have to build the endurance – and find a way to enjoy the training. Even the really painful ones.

See, if it was just me suffering – it would be easier. But it’s not. And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?” Well, that was downright exhausting, I am NOT looking forward to doing it again, in 6 months, or ever. But, reality tells me there will be more biopsies on the horizon.

So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.

Well, that isn’t actually the goal. The goal is for me to shelf the worry altogether… but baby steps please.

Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously. I fell on Saturday. Over the dog. She was on the sheets on the basement floor that were waiting to be washed. I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.

My calendar tells me we have about 5 weeks until the next major doctor cycle. Good thing. I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.

The 6 month thing… well that’s not just twice a year. That would be neat and clean. No, the 6 month thing seems to just be ongoing. We try to make the breaks as long as possible. You know, so in between we can deal with the new adventures life tosses our way.

I am going to focus, and keep trying to get this one day at a time thing down. I am going to stop and look around more. I am going to try to enjoy the ride. It won’t be easy. But I am on it. I promise.

I need a new pair of sneakers for this marathon training.

Who knows, I might just get back in shape yet!

BENIGN!!!

Published on January 11, 2013 by beatingcowdens25 Comments

I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.

I spoke to the nurse this morning. She said the pathology was BENIGN! I don’t think I heard much else she said, as the tears just started flowing.

We are not, nor will we ever be “out of the woods.’ They will scan her thyroid every six months indefinitely. But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.

Right now she does NOT have thyroid cancer.

Right now she does NOT need the thyroid removed.

Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.

So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.

Blessings… and patience

Published on January 10, 2013 by beatingcowdens2 Comments

http://www.youtube.com/watch?v=dKgktNz6ICs

We try to stay focused, and distracted at the same time. Even Meghan knows this is important news. We laugh, we pray. We hold each other up. We wait…

One step at a time

Published on January 9, 2013 by beatingcowdens14 Comments

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.

We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.

When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.

I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.

I try not to think too far ahead. You know what Mom says about planning anyway.

And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.

So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

No place like home

Published on January 8, 2013January 8, 2013 by beatingcowdensLeave a comment

We are home.

The procedure is finished.

A scheduled 1 PM start turned into 2:45 on an empty belly.

But, it went fine.

The doctor got what she needed.

Now its up to the pathologist.

So, we wait.

We pray. (THANK YOU ALL…. WE FELT THE LOVE ALL DAY!)

I have a glass of wine (or two.)

We should have an answer no later than Friday.

Early to bed tonight.

Tomorrow I get to meet a surgeon about my spleen.

Cowden’s Syndrome is EXHAUSTING!

Prayer Circle

Published on January 7, 2013January 7, 2013 by beatingcowdens14 Comments

There are a lot of people who pray for Meghan. And we are grateful for every single one of them. But, there are a special group of ladies…

Well, between them they have 9 children – 3 each. They all have incredibly busy lives, and all of our lives connected some years ago. We don’t see each other all that often, and rarely in the same place, but they are my prayer group of sorts. Our children are connected, in a bunch of different ways. Our lives are intertwined, and we have vowed to support each other.

We all seem to share the belief that –

And, with that belief comes responsibility.

So, they were among the first people I shared my blog with in its infancy last year. They are the ones I turn to and say… lift this up… PLEASE, and without fail it is done. And they do the same for me. We all pray fervently for each other. For friends, and family. For people we know well, and for people we haven’t met, and for people we may never meet.

We pray because we believe it works.

We pray because we have seen it work.

Last spring when my sister’s dear niece was knocking on death’s door – felled by a virus of unimaginable strength, we (along with countless others) prayed. And we witnessed nothing short of a miracle.

The day of my mastectomy, wracked with fear – terror actually – my cell phone rang as I was checking into the hospital. My brother-in-law, a Lutheran minister was on the phone at 6AM, ready to pray with me. As the tears rushed down my face I felt the calm envelop me.

Prayer is powerful.

But, it doesn’t always take worry away.

So tonight, as I struggle to sleep, I will think of them with gratitude. I will also think of the countless others – those we know and those we don’t, who are lifting my little girl up in prayer.

Tomorrow we go for the biopsy. Then we wait. I am not sure which part we will need your prayers for most. But, please – whatever you believe, remember us this week…

No such thing as coincidence

Published on January 6, 2013January 6, 2013 by beatingcowdens2 Comments

I woke up this morning earlier than normal, and that is not like me. Worry had taken its toll on me through the night. I was up and showered with plenty of time to get Meghan to Sunday School.

She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex. That is her “wonder drug,” the one that keeps her moving pain free. She needs to be off of it until it is determined if she will need thyroid surgery. The pain will progress.

Still, determined, she struggled through getting dressed and found her smile before heading out the door. She looks forward to church – the lessons, the children, the teachers. She adores them all.

As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough” spoke to my heart.

If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be. I give up. I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”

Tears streaming down my face I headed home. I am always thankful and amazed when the song I “need” hits at exactly the right time.

As Felix and I headed back for the 11 AM service I reflected on the week in front of us. The biopsy looms large. The results even larger. Sandwiched in between is an appointment for my spleen. Busy week for the Ortegas and their ever troubled organs.

I had Emailed the pastors to let them know of Meghan’s biopsy. They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”

This morning during Church I was introduced to a Moravian Custom. Appranetly early in the year everyone chooses a scripture verse from a large basket. They called it, jokingly,” Fortune Cookies, Moravian style.”

We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.

I said a quick prayer to God to send us something good.

As usual, He did not disappoint.

For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.” For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.

For Felix, a verse from Job 37:5 “God thunders wondrously with His voice. He does great things we can not comprehend.” A reminder to the strength of our family, from Job who suffered so.

For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?” The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.

The prayers of the church lifted up my little girl, and she sighed. So pleased to know the larger community sees her needs. She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.

I left church to a hug from the pastor, who is also a mom. As I looked into her eyes no words were needed, and meaning was clearly conveyed.

Despite our rough times… God is good to us.

I heard the Matthew West song again today. I didn’t cry this time. I just took a deep breath. “I don’t have to be Strong Enough….”

There are no coincidences. Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it. Truly amazing.

God’s got us covered.

By this time Tuesday we will be awaiting results.

Superheroes…

Published on January 4, 2013August 25, 2015 by beatingcowdens4 Comments

I saw superheroes today. Not the kind that normally come to mind.

The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes. And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them. We had a long wait this morning. And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like it was home, handled IV poles and ports and masks, like they were additional appendages.

These people- the young ones and their parents, are made from a stock stronger than most of us. They endure the unimaginable, day after day. Some endure it for years on end. And they press on – because that is what you do.

My beautiful cousin Meghan was one of those superheroes,

Sometimes it ends well, and some times it doesn’t. But while you are there there is no time to think, or to wonder. You must just press on.

That is the story that the 9th floor of MSKCC told me this morning, as we waited for preadmission testing.

Meghan had a 9 AM appointment and between blood work, and our meeting with the nurse, we had at least an hour to wait, and watch, and marvel, and wonder, and worry.

The biopsy is Tuesday. The results will be in by Thursday so they say.

Then, we can make a plan. They tell me they can get the thyroid removed in a few days if the biopsy is positive.

If it’s not cancer… get us home. And, if it is – GET IT OUT OF MY LITTLE GIRL!

She will have nothing to eat or drink after midnight Monday. She will be tired, and cranky, and hungry when we arrive on Tuesday. But she will get anesthesia like she asked, and the procedure will be much more humane.

Then, we will wait.

Patience and Wisdom

Published on January 3, 2013January 4, 2013 by beatingcowdens2 Comments

I am patient – sometimes.

I am also wise – sometimes.

The trick really might be meshing the two.

That’s where I sometimes have some trouble.

I got a call this morning from Dr. S. The biopsy is scheduled for Tuesday at 12:45. Pleased to have it scheduled, quick math told me it would still be a week before we had a definitive answer. But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.

My next question was about anesthesia. Had they decided to give it? In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon. But Meghan had such TRAUMA from her FNA at another hospital in November of 2011. We had to push.

I had just told this child she could have cancer. I just told her she was likely looking at another surgery. She was unaffected. “I will have whatever surgery I need to. Just make sure I don’t have to be awake when they put those needles in my neck!”

This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.

All day I carry my phone everywhere. I literally put it down for 3 minutes and missed the call about the anesthesia. So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”

“When? What type? Why? I can get you a cardiologist report from December. I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”

“No, we have to see her here at 9Am.”

Patience and Wisdom.

I had pleaded for the anesthesia on her behalf. Now I would pay the price. Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow, ensuring the anesthesia my kid asked for is in place. She doesn’t ask for much.
Working hard on gratitude, I am relieved at least things are moving. Not on my schedule, but progress nonetheless.

So then my oncologists office called. They want me to see the surgeon. The surgeon we first talked about a month ago. The surgeon who had little more information than he had on December 7th after my MRI. The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it. No one thought to send me for another abdominal sono at their hospital – even though I asked. They would like me to see this surgeon at 10:30 Weds. They will have to have patience now. I have a kid to take care of first. If they were in such a rush I could have been healed by now.

So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me. Waiting to hear exactly who that letter of appeal gets addressed to.

All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to. My heart weighs heavy. Time and stress are hard to manage.

Patience, I am convinced – is more than a virtue. It is down right necessary, and almost debilitating with exhaustion.

Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.

I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about. May God bless me with the patience to get through the weekend.

And give me WISDOM with that PATIENCE too please?

Waiting…

Published on January 2, 2013January 2, 2013 by beatingcowdens3 Comments

I am waiting.

Still.

I am tired.

I am angry.

I purposefully picked the best hospitals.

I searched out the best doctors.

My goal was to avoid useless waiting.

Instead I spend days at a time looking at my phone.

Waiting for it to ring.

I think my new case has marks from the imprints of my hands.

I don’t know what I want… but I want to get out of “the waiting place.” I spend too much time here and its unhealthy.

An excerpt from one of my favorite Dr. Seuss books, "Oh the Places You'll go!" — An excerpt from one of my favorite Dr. Seuss books, “Oh the Places You’ll go!”

Thursday they said the biopsy should be scheduled by Friday or Monday. It’s Weds. at 7:30 PM. No worries. I have called. It didn’t help.

It’s a small nodule, the one they are concerned about. It is less than 2cm. But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.

And what about my damned spleen? Clearly not a medical emergency, but the holidays messed with the waiting there too. I was told 9 days after they received the CD of my sonogram that it was blank. Really? 9 days? No word back from them about a plan either. I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.” Great. See, prior to that conversation, I thought they were ALWAYS benign! UGH!

I am trying. And I will be fine. I guess some days I am allowed to be tired and grumpy like the rest of the world. As long as I remember…