Cowden’s – Page 27 – beatingcowdens

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

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!

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?

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.

What a Day!

Published on December 27, 2012December 27, 2012 by beatingcowdens2 Comments

I am getting a bit fatigued by all the positive stories I tell myself. All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.

I think I am getting tired of them, because I am starting to doubt if they are true.

The waiting room in the pediatrics department.

We began the day at radiology at MSKCC in NYC. The thyroid sonogram took longer than it should have. I knew that. I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.

The nodule they were concerned about in June still has them worried. Despite there being MANY other thyroid nodules, this is the one that is of concern. I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago. The doctor told me right there it had to be biopsied. She didn’t even wait for us to see Dr. S. (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor. Then the doctor usually reports on the findings.) I knew this was out of order, and it spoke to the seriousness of it all.

I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together. We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us. She will need to be sedated I said.

We went upstairs for our appointment with Dr. S. Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys. The woman was in awe, and I was just so proud.

We checked in for our visit with Dr. S. and we waited. While we waited I spoke. Candidly. I had to be the one to tell her they were looking for cancer. I had to tell her they were going to biopsy again. I had to tell her I was TRYING to get her sedation, but I couldn’t promise. She swallowed. She stared at me. She took it all in. Then she reminded me I should try REALLY hard for sedation with the biopsy.

We saw Dr. S. No new information, except that she grew a few inches and lost a few pounds since June. HE said she is OK right now, but he doesn’t want to see her lose any more. I chuckled at the school notices I always get home calling her obese. Dr. S. reexplained what I had heard in radiology. He reassured us that even if the nodule is malignant it is small, and not likely to need more than a thyroid removal. Some comfort… but not a ton, for my girl still growing. We were advised to take the first available biopsy appointment. And we will. I should know in a day or so when that will be.

Once we checked out it was on to the American Girl Store. WHAT A CROWD! Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll. The doll got her ears pierced, and we were out the door.

We headed up to see Daddy at work. We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it. Meghan LOVES seeing Daddy at work!

Family shot in front of the New Year's Eve Ball. — Family shot in front of the New Year’s Eve Ball.

45 minuted to get the car out of a midtown lot. We arrived home to 2 dogs that just weren’t able to wait until we got home. Upstairs floor cleaned. Two glasses of wine gone. Some type of leftovers for dinner. And tomorrow we get to wait by the phone again.

Good thing we are always ready for a fight!

Maybe in January the Ortegas should resolve to lose a thyroid and a spleen? One each? Really???

Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety. Cut us a break… please?

Nerves of Steel

Published on December 26, 2012December 26, 2012 by beatingcowdens3 Comments

I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.

We need “Nerves of Steel.”

I am trying to settle in to bed. Tomorrow bright and early we head out for the thyroid sonogram and appointment. My stomach is twisted in a million directions.

At this point I should be calmer. I should relax, and have faith – as I am sure that everything will somehow be alright. Yet, still, it is so hard to keep your mind from wandering.

I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me. Just PLEASE… leave my kid out of it.

Today we stayed home. The three of us, (and Allie and Lucky) as a family. We did some work, and we rested. We also did a little bit of shopping.

My girl had only three things on her list for Santa. She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital. Santa left her $100. Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.” And she would know. She has spent her share of time stuck in a hospital.

These are the toys she picked out for the kids in the hospital.

Such a great kid. I am just so proud of her compassion. We are blessed. Please, dear God… hold us close tomorrow.

My three girls... resting together. — My three girls… resting together.

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.

Beating Cowden’s… With a Jingle of Hope”

Published on December 10, 2012December 10, 2012 by beatingcowdensLeave a comment

Friends creep into your life at the strangest times, and under the most peculiar circumstances, but sometimes the people we are happiest to know are the ones who became friends when we weren’t paying attention.

My neighbor has a heart bigger than almost anyone I know – except maybe my daughter. She has looked out for all three (five with Allie and Lucky) in this house more times than I can count. She loves my little girl like she is her own blood.

Today she showed up with this ornament.