Memorial Sloan–Kettering Cancer Center

You Can’t Have a Rainbow Without a Little Rain

Published on June 28, 2013June 29, 2013 by beatingcowdens6 Comments

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone. God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC. They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid. She was an angel – calm and patient. I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now. The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there. At least three are quite large. I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit. And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

Meghan played on her iPad as I watched. Chemo pumps beeping. Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body. Some sleeping, some resting, some running. And their parents. Dark eyes. Worry. Terror. Fake smiles. Bitten up coffee cups. “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer. I am only scared if they don’t catch it early enough.” I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of. The nodules are slightly larger, but are growing slowly. They are still in that same “precancerous” state, but we are not in imminent danger. No biopsy right now. We get at least another 6 months out of the thyroid.

Then there were the other conversations. The ones about hormone levels that won’t regulate on lab work. The MRI that showed a pituitary “diminutive in size.” The inconsistencies of these tests with her current development. The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again. This time at “his” lab. And a thyroid panel, and a few other things.

He’ll call me Monday. Then I will find out more about “human physiology.”

At swim practice last night I met a mom. She has an only child too, just about Meghan’s age. And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night. And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends. There are no coincidences. Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,” we dragged ourselves out of bed again.

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted. As I crossed the bridge I had the sinking feeling that I didn’t have my wallet. Back across the bridge. Back home. Back out. An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed. Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown. He has been inside of Meghan’s knee 4 times, so he knows her well. This time we had less overall pain to report. But, of course he never felt the pain was connected to the AVM anyway. So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block I had his attention. The legs have different girth. The left is undoubtedly stronger then the right, having been spared the AVM. Do you take her for PT he asked? Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming. There isn’t much else we can do.

Oh, and could you look at her wrist? The one she hurt at the school carnival almost 4 weeks ago. She was victorious at her quest to climb the rock wall. Stubborn, competitive child. But has paid the price since.

For a few days I told her to suck it up. I admit it. But it kept going. Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened. This one wasn’t quitting. Dr. Jill helped us. We tried a brace. Then another one. Then no brace. No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over. I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever. Then he asked me who my orthopedist was. I laughed out loud. The one subspecialty we have NOT found – is pediatric orthopedics. So he asked if she had a rheumatologist. I said we were headed there July 9th. He said try to move it up, and call him after I saw her. She needs and MRI of that wrist.

“I don’t think it’s vascular…” And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist. He is the one we credit with saving my life. And I credit the angels with placing him in our path two years ago.

We spoke at length. He has more questions. More research. He has a theory. He will call me. He will send me the articles. The conversation lasted an hour. He is brilliant.

She hugged him and told him she wants to be a geneticist. We have a friend for life.

The people training on the new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.” I don’t know why I find the system to be perplexing. I should be used to it by now.

It rained tonight. Thundershowers. They have been happening a lot lately. Maybe I need a lot of reminding. The rainbows are there. The promise remains. Nothing happens by accident. God’s timing is perfect.

“I hope you never lose your sense of wonder…”

Published on January 21, 2013 by beatingcowdens5 Comments

Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.

I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest. I think I am not just sad, but angry.

And that’s ok. I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.

I have said before, and I will say again – if it was just me…

But it’s not. It’s her too. That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.

I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.

I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.

So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.

We will win.

I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

“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!

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.

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.

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.