It was almost 11 last night when we were cleared to leave recovery, and taken to a bed on the Peds floor. Dad had to leave to head back home before the next round of snow began. After all, he needed to have a car ready for our (hopeful) Valentine’s Day discharge.
So we settled into a tiny, awkwardly laid out room. trying not to disturb a roomate who likely would have preferred not to be awoken at 11 to share a room with someone she didn’t know.
By that point I might have been a little difficult. (I know that is SHOCKING!)
But as we settled into the room it became apparent that there was no place to walk safely. Some rearrangements were made, and the reality that she couldn’t possibly see the TV was softened by Amazon Prime (on demand) on the laptop.
She was hungry. At this point she was close to 24 hours with no food. I try not to let her go four hours. Her stomach needs constant gentle reminders it hasn’t been forgotten to keep it from getting angry. They said soft and clear. We tried apple juice. Then they offered an italian ice with soy protein. Not so much. Another juice I was told. And I should have trusted myself.
Soon after came the familiar green face from the child with a body full of toxic anesthesia crap, AND apple juice – which just isn’t on her list of beverages.
She is always my angel girl. Even post op – she got herself to the pail before her body forcefully removed its toxic contents.
I took the opportunity to change the gown and bed sheets, because – why not? And by midnight she was on my laptop watching “The Hunger Games.”
They said clear liquid. I said ginger ale and gluten free pretzels. I win because I don’t ask. And she started to perk up.
Pain medicine in place, she enjoyed the movie. Except the blood draw. Which fortunately was through the IV. Then again an hour later. (Good thing she wasn’t asleep) only to find out her blood sugar was crazy out of whack. The finger stick brought it into a much more normal range. Thank goodness!
By 2:30 there were actually 5 uninterrupted hours of sleep for my exhausted girl.
She awoke at 7:30 immediately remembering the pain of having your throat slit open, and a small lumpy organ removed. Today things were more stiff. All the local anesthesia gone. She was hurting. And its a hurt I remember. So it broke my heart worse. You never realize how many things you use your neck for, until…
Brave girl. Held it together. Had some more of her pretzels and ginger ale, and even some of her chicken breast I brought.
We wheeled and dealed and got her to agree to a nap after her second movie. And so she rests now.
Calcium levels keep us here. Wondering and working to determine parathyroid damage. The synthroid has begun.
The doctor will set us up with restrictions, rules, and orders. When he’s able.
For now our chart reads “Pending Discharge.”
We are ready, and I am behaving…. I promise.
Ten years ago we spent Valentine’s Day in the hospital. And here we are again. What a decade. It’s not glamorous by any means – but I am still with the loves of my life, and that makes me a lucky gal.
Trying to distract the pain away.Me and one of my Valentines!
So a huge part of writing this blog is about raising awareness of Cowden’s syndrome, and its realities. Some of the realities are really not so nice.
Cowden’s Syndrome involves surgery. Lots of it. Surgery really sucks. Sorry, but it does.
General anesthesia is awful. Toxic crap. Especially awful in a body that isn’t fond of toxic crap. Top that off with a breathing tube when your throat is being cut, and its definitely an uncomfortable wake up.
The surgeon said she did well. He said he got the whole thyroid and the vocal nerves are intact. He said she had many nodules. Numbers in the teens. A bunch were small. A bunch were not. He said there was lots of scar tissue from her three previous biopsies. Only three FNA – tiny microscopic needles, caused significant scar tissue.
Cowden’s Syndrome – “HYPERHEALING is our Superpower” What’s yours?
Surgery number 11 – done. Procedures…. I’ve lost count.
Pathology 5 to 7 days.
She is sitting up, looking at her ipad. A professional. A tough girl.
Her Daddy is on his way home. Home to get the car. Hoping. Praying that the calcium levels are good, and the thyroid levels are good, and tomorrow we can go home.
That brave face hides this…And sometimes needs this…
Two of my girl’s favorites…. “Let it Go….”
The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!
Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.
It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!
Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You’ll never see me cry.
Here I’ll stand, and here I’ll stay.
Let the storm rage on.
My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back; the past is in the past!
Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.
Let the storm rage on!
The cold never bothered me anyway…
And ROAR…
“Roar”
I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everythingYou held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now
[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero
You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready ’cause I’ve had enough
I see it all, I see it now
[Chorus]
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…
Ro-oar, ro-oar, ro-oar, ro-oar, ro-oar
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’re gonna hear me roar
Oh oh oh oh oh oh
Oh oh oh oh oh oh
You’ll hear me roar
Oh oh oh oh oh oh
You’re gonna hear me roar…
She walked away today. She broke the rules. She updated the plan. On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses. The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.
That didn’t last long… You only get a moment or two to pull it together. Then there was some really rotten cafeteria food, and WAITING.
They took her in at 3. Three and a half hours after she was scheduled. She was tired, and hungry. And more grown up than I am at 3 PM when I haven’t eaten.
What a whirlwind! Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed. Stupid Cowden’s Syndrome. Makes people quick to pull out whatever seems to be misbehaving. And (SIGH) they are usually right.
So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while. I thought there was no way it could stand in the way. The surgery was scheduled. She was ready. The throat clearing has reached epic levels.
Faith.
Faith that it was going to be fine. Initially faith that the storm would pass. Faith that we would arrive on time to an early surgery Thursday morning.
Then, as happens so often I was reminded that FAITH, is not about me. It’s not about my terms, or my time, or my way. FAITH is knowing, trusting, believing. that God will provide what we need. Whether it fits my plan or not.
So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.
HOPE
So much talk about HOPE this month. Rare Disease Day, and “HOPE – It’s in our genes.” Hope became necessary. The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in. (HEY, I never claimed to be perfect!)
Back and forth to the surgical team, to the social worker, the secretaries. Pleading. Help us. Hotel rooms that were available running several hundred dollars. Offers from loving people to pay the bill. But in the end money wouldn’t have stopped us. We would have paid whatever we needed. Because we had to be here. Right here. Right now.
So finally around 2 O’Clock on Weds. the call came. “We can put you up at the Ronald McDonald House for the night.” The fee – incredibly reasonable. The location- perfect. The reality – it was time to pack us up and be out of the house by 8.
Packing to take Meghan away is an adventure. It’s not the electronics, or the “stuff” but rather the food. Not even a major hospital can safely prepare Gluten, Dairy, Soy free food. So there has to be a cooler. Dad made fried chicken and plantains. I picked up a pound of a Boar’s Head staple. Cookies, granola, ginger ale, and other necessities. Showers for all. And Grandpa picked us up at 8.
We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time. I have to admit I was worried. Really worried about what I would find through the doors. But what I found was… love.
s
I had heard of “The Ronald McDonald House- The house that love built.” But I never gave it any thought.
I have a new charity on my favorite list.
We were welcomed – almost embraced by love and kindness. There was a nonjudgmental compassion the radiated out of every staff member. We were given keys to our rooms, and a tour with the rules of the “house.” We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room. And, after she was given a backpack – with a special monkey, and a monkey blanket.
And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket. Her grateful smile. My heart – full of love in this house.
Our room was on the 11th floor. Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic. And there was the most beautiful view.
LobbyLobbyOur RoomView out the window
And as we each found our way last night into our own level of sleep, there was LOVE. Everywhere in the room.
We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.
View out the window on this “Beautiful Day”Waiting for surgery with the new monkey from the bag last night!
By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.
A beautiful chaplain met us this morning, and clearly spoke Meghan’s language. She compared God to a loyal dog… always there – forever understanding of our needs.
The doctors took extra time with someone else’s baby this morning. I am glad they have that level of compassion. I am glad they take their time.
Now they need to take their time with mine.
The last status update came 15 minutes ago. They only began around 3:40. Prep took a while. She is stable, but its slow going. What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules? Why make it easy.
Thankfully – she has some very special guardian angels on the case today. And the prayers of countless others.
In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”
This will be the year the surgeries outpace the age. She’s been running a cool average of one a year for quite some time. Now, at just about 10 and a half, she will get a jump start of her 11th surgery. February 13th. One week.
That’s 11 surgeries. Full on. Operating room. General anesthesia. Waiting for pathology. Sometimes ICU. Often staying overnight. Real deal surgeries.
By my count we have been in 4 hospitals. We have a system. Felix goes into the OR. I stay overnight. It works for us.
Who has a “system” for surgery?
And that’s not the tests. The MRIs that early on required general anesthesia, the three thyroid biopsies, the ultrasounds in countless places. Nope. Those have their own tally altogether.
My Grandma is 93. She hasn’t had surgery yet. Meghan thinks that’s weird.
That’s life with Cowden’s Syndrome. Healing is “BEATINGCOWDENS.”
Surgery – the new normal. Organ removal – the necessary means to avoid something worse.
I expected the surgical consult to be on the 6th. Then my cell phone rang on the afternoon of the 4th. It was confirming our appointment for the 5th. The day it was going to snow, and ice and create horrendous road conditions. And, if I couldn’t make it – it would be another month.
So, I spoke to my super understanding boss. I rewrote my plans for a Weds. absence instead of Thursday, and after chopping anout 1/4 inch of ice off everything we left home at about 10:30 Weds. morning.
We have created quite an an army of guardian angels, and I called on every single one of them to guide our trip. They were on point. Not a hitch. We were sitting in the waiting room hours before our appointment.
I got to develop the pit in my stomach as the young superheroes and their parents spent the afternoon on chemo pumps. Pushing time. The beautiful bald two year old in the blood room was a reminder to mind my blessings.
I had been under the impression I was coming to discuss IF surgery was a good option. I had already decided I was unsure how I felt about whatever the poor pediatric surgeon at Memorial Sloan Kettering Cancer Center was going to be able to tell me. But, I was a bit shocked when there really was no “if” in the room.
Her neck was examined. Her notes reviewed. I was reminded again of the failure rate of Fine Needle Aspirations for the thyroid. (Close to 10% in case you wanted to know.) I asked again what made her a good candidate for a complete thryoidectomy at 10. The nodules. Consistent growth. Vascular feed. The tickle in the throat… It’s time they said. It’s time.
I lost my thryoid at 20 in 1993 to a condition called “multinodular goiter” and “Hashimoto’s thyroiditis.” They both stink. But now I find myself wishing for such benign conditions to be the final result of the pathology we will receive 5 to 7 days post op.
Everything is moving faster here. I don’t like it. Not one bit. I am a numbers person and these stats make me ill.
But, onward we go… because what choice do we have?
There will be work. Follow ups. Thyroid hormones to balance. But we will figure it out.
She laughed today. A lot. Maybe she is relieved without the uncertainty. She knew. We all knew.
Saturday I will sign her up for her second year of CYO swimming. The surgeon says only a week out of the pool. And her scar should be half the size of mine.
Two days off of school Then a vacation. Kind of. A “Stay-cation.” Daddy will be home too. Some movies, and maybe even some resting. Maybe some healing for all of us.
She’ll be back in full effect. Ready to rock “RARE DISEASE DAY 2014.” Denim ribbons. T-Shirts. Movie night.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
Lions and Tigers and Bears, Oh MY… Lions and Tigers and Bears, Oh MY…
Three Years ago Meghan was Dorothy for Halloween. The idea originated on a trip to Disney as we went through “The Great Movie Ride.” Felix and I realized she had never seen “The Wizard of Oz,” and we had a thrilling time explaining the story and later watching the movie together.
Meghan liked Dorothy because she felt like she could relate to her. She respected Dorothy’s bravery as she led the Lion, the Tin Man, and the Scarecrow to see the Wizard of Oz. She liked Dorothy’s stamina, and her determination. Dorothy never gave up. And she carried a dog. Really, what more could a girl want?
Of course for my only child, my girl, I jumped full in and spent a ridiculous sum on a fabulous Dorothy dress and some ruby slippers. Well worth it. Worth it for the memories, for her smile of excitement, and for days like today when I can remind her that she and Dorothy have an awful lot in common.
Meghan is fighting shoulder pain. Deep, knotted pain. The mean, painful kind, only pacified with full strength muscle relaxants, that you don’t wish on anyone – especially not a 10 year old. And definitely not THIS 10 year old.
One might theorize that its stress related, and one might even be tempted to tell her to relax, and let a few things go. One might be tempted to admonish her for making herself so tense. Really, at 10 – what should she be worried about?
Then if that very same person, who hopefully thought before they spoke, really contemplated the life of this kid – they might understand. They might even grab a pen and help her write her homework, or make some time to rub that shoulder.
And, while they rubbed, and listened to the throat clearing which must just be flat-out annoying to HER, they would really be in awe that she holds it together as well as she does.
She is a kid. A kid with a growing up body, and grown up worries. And a kid who still has kid worries too.
While anyone who sees her sees a cool, confident smile, and a remarkable, articulate presence, only a precious few have glimmers of the “lion” side.
Meghan strives to achieve excellence, all the time. She wants to do her best in school. Actually, she expects herself to be perfect in school. She agonizes over each step along the way. She loves the children. She enjoys the teachers. And this young lady who spends so much time feeling “abnormal,” strives every second of the day to fit in perfectly at school. She relishes the feeling of “normalcy,” even if only for a few hours each day. The problem is, anything less than perfection is unacceptable to her.
Now, if I am honest, and introspective the phrase “alligators have alligators” comes to mind. She learned a lot of this worry from me. And even though I do not have the expectations of her that she has of herself, I have those expectations of MYSELF. I want to give it all to everyone, all the time. And sometimes, I feel as though the “perfect storm” is lurking, and my inability to “let it go,” could be the inevitable cause.
But what to “let go?” Please, don’t even get me started. Maybe instead I, the lion, should focus on my faith – toss it up to God, and lead by example.
Easier said than done of course.
So I, the Cowardly Lion watch, as my brave Dorothy leads down our “Yellow Brick Road.”
Sometimes we have to duck out of the way, as obstacles fly in our faces, but we press on. And I watch as my brave girl starts to work on a Rare Disease Day Movie Night fundraiser. I watch as she puts others first. I follow her lead, glad to be her back up.
I watch as she gathers information. I listen as she asks her aunt to help her create a Power Point. I admire her focus.
She suffers. She grieves. She stresses. She panics. She hurts. But she perseveres.
Rare Disease Day – February 28, 2014.
Thyroid Surgical consultation – February 25, 2014.
I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.
Except this one – not so much.
It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.
Gratitude, that it is not a full time arrangement.
Anger that it has to be part of our lives at all.
Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.
Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.
Guilt, that my child can walk and so many others can not.
My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.
Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.
I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.
There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.
There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.
And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.
There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.
There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.
The lipoma on her back was almost certainly Cowden’s related.
And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.
But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?
And the physical therapy that is a necessary part of her existence – just to function.
What about the migraines – now well controlled, but not gone?
And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.
The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.
Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.
Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”
When she was younger I could hide things from her. Now she’s just too smart.
When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.
When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.
When she was younger…
But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.
She can swim – pretty fast. Just not too often.
She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.
She can play outside for a bit – but not too long.
She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.
I am grateful. You bet. And sad too. And I think it’s OK to be both.
She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.
SO if you happen to run into us when she needs that wheelchair, just smile and say hello.
We will remember to be grateful we don’t need the wheelchair full-time.
When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.
I knew from the caller ID that it was going to be the hospital with the pathology report. Home on a snow day, relaxing with the family – I took a deep breath. It was the endocrinologist on the other end of the line.
“I have the results of the pathology…”
AND???
“The samples are not malignant, but…”
YAY, and UGH!
And there followed a conversation that lasted several minutes. I tried multiple times to use the word “benign” to refer to the results. Each time I was carefully deflected. When he spoke he never said “benign’ once – only “not malignant.” Synonyms – yet apparently not interchangeable.
Someone less in tune might have missed this conversational nuance. I don’t miss much when it comes to my daughter.
So the doctor recounted how each off the 4 cell biopsies obtained through the Fine Needle Aspiration, showed cells that were “not malignant.” When I asked about the cells, specifically remembering the “precancerous” title given to the cells that had brought us to this hospital to begin with, he told me again the report says they are, “not malignant.”
SO WHAT’S NEXT?
I know I didn’t imagine the deep breath on the doctor’s end of the phone when he began, “Typically, we would follow the case in 6 months with an ultrasound, and I think you should make that appointment.” Then there was a deep breath and a pause. “I also think you should take her to see a surgeon – just for another pair of eyes.”
Now I was thoroughly confused. “Why? Do you think the throat clearing that has been going on could be related to the nodules? What about the Fine Needle Aspiration? How accurate is the test?”
He addressed one question at a time. Almost as if he expected them. He and I were not fast friends, and he often seemed annoyed by the countless questions I ask. It never stopped me, but I couldn’t help but notice he was almost anticipating my questions today. Maybe he was even welcoming then. I flashed back to that visit on December 19th where he was visibly uneasy about the feel of that right thyroid. “The FNA is accurate 90-95% of the time. Usually that is not an issue because thyroid cancer tends to grow very slowly and if we follow every 6 months, we will typically catch anything we need. That being said, in a situation like Meghan’s where there are so many nodules, and there is Cowden’s Syndrome, it sometimes is harder to manage. In regards to the throat clearing – I don’t THINK it’s caused by the nodules, but again I can’t be sure. Why don’t you set up a consultation with the surgeon?”
Deep breath. It’s good news I kept reminding myself. It’s not cancer. (Yet… nagged the little voice that never knows when to shut up.) I reassured him that I would schedule the appointments with him and the surgeon. Of course after I arranged to have the pathology and ultrasound reports Emailed to me so I could agonize over every detail…
I scheduled the appointment for the first week in June. I tried for the first week in July – but he is on vacation that MONTH… Then I sat down to Email Meghan’s hematologist/oncologist the reports and ask her opinion. She concurred with the endocrinologist and approved of his choice of surgeon.
Within 45 minutes my phone rang. The caller ID showed the hospital number again. This time it was the surgeon’s office. They were contacting ME, at the doctor’s request – to set up a consultation for Meghan. Well I have to tell you that didn’t do a whole lot to ease my mind. Obviously it was nagging at the doctor enough that he reached out to be sure I made the appointment. Scheduled. February 25th. I couldn’t get a time because they call the day before with that. So, I explained how much I really NEED to be at work. They made me no promises. The 25th it will be. Regardless of the time.
The snow was so pretty today. So nice to be home as a family, to shovel, to play, to take some pictures, to watch an old movie.
I sat down to type this almost three hours ago, but somehow as Meghan was getting ready for bed she developed severe pain in her back and a ruthless headache. Reminders that even an hour or so in the snow is too much for her body to endure. Frustration. Fear. Two hours at her side, her father and I alternating pressure on the most painful spots. She’s asleep in my bed now. Moaning. The night will be long.
Some time this afternoon I realized again, that this is just how its going to be. We are going to walk out of one fire, while walking around another. We aren’t going to know the hows and whys. We aren’t going to be able to make many plans despite our best efforts. This is life with Cowden’s. This is our life.
And tonight, as I held my husband’s hand, and we each had one hand helping soothe Meghan’s agony, I realized again that through the depth and power of our love for each other – all of us – this works for us. It’s not what I would have chosen, but it’s what we have.
Never in my wildest dreams could I imagine a day without the two of them. Somehow, that has to make us the luckiest family in the world.
I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work. We race to take our children to the many places they need to be. We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.
In our house we race. Gratefully, we have added something fun in the form of Swim Team this year. There are many weeks there is even time for two practices. So she won’t be an Olympian. But some fun is an improvement.
Because without that Swim Team – it was all medical – all the time.
Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York. And they all require regular check ups…
“Skip it…” whispers the voice inside your head. “I don’t have time…” “We won’t make practice…”
But “skipping it” is not a luxury we can afford. Cowden’s Syndrome has robbed us of the luxury of putting it off. It is the clock that is always running. It is the reality of my breast cancer – beaten. It is the “reminder” in my iphone. It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.
And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks. Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.
There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few. Some are once a year. Most are twice. And that’s all well and good if everything checks out fine. However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….
Last year I tried to get them all done in July. That was pure indescribable hell and it swallowed our whole summer. Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.
And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.
So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in. We often find ourselves racing into an appointment after a long day – only to find ourselves waiting to be seen.
“Hurry up – and wait.”
Meghan is an outstanding “wait-er.” Partially because she’s used to it, and partially because she knows it’s necessary. We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied. But she would rather be playing. Or swimming. Or resting. Or crafting. Or just being a kid.
We find ourselves facing the same problems many other families face – laboring to fit in time for fun. But it is further complicated by fatigue and a lack of stamina. She can not walk more that about 3/4 mile without wiping out. She will, when time allows, sleep 13-14 hours a night. So we have to always be careful not to push too hard, because the repercussions can be serious. Sometimes I imagine friends think we make it up.
“Hurry up – and wait.”
And we raced into Sloan Kettering Cancer Center on December 19th after school. I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.
But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck. The one she feels every time she goes to put her necklace on. The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.
So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned. He asked for a tape measure. His eyes were serious. He spoke of significant growth. He said we needed a biopsy.
“So let’s do it. I am off for 10 days.”
“Well, you know, with the holidays…”
“Let’s hurry up and get it done. I will take whatever you have.”
And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof. The doctor explained that the radiologist doing the FNA needed a recent ultrasound. (You mean like the one I had asked for with the December appointment all along?) I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute. So we did. Ultrasound December 23rd. FNA under general anesthesia on December 31st.
“Hurry up – and wait.”
Apparently no one got the memo things have been a bit stressful around here this month.
So we did the ultrasound on the 23rd. 30 minutes with the tech. Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan. Nothing going on on the 23rd of December. No worries.
“Hey, that’s a lot of nodules on a young lady…” says the doctor. ARGH!
So when do we squeeze in something fun? Something she can say she DID on the vacation?
We made it up to see the New Year’s Eve Ball very early on that Saturday morning. Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month. Trying to find the time to view her world through a camera lens. We spent about an hour. Then we went home.
Grandpa Tom’s “smile”
There were 2 play dates. Lovely girls. So I guess there was success.
And then today.
Arrive at 6:30 I was told. So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.
“Hurry up – and wait.”
We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor. The procedure was at 8:15 and lasted double the time it should have.
We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.
I may have a few cocktails myself as midnight approaches. If I stay awake that long. After all its been a long day, week….
And we know Daddy’s got the New Year’s Eve Ball well taken care of.
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…”
I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’
Today “probably” means it’s most likely migraines causing her agony.
And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.
There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.
So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.
I understand her cautious suspicion, as things have often not gone according to plan.
However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.
So he is 90% sure.
Those are good odds.
Except there needs to be an MRI just to be 100% sure.
And MRI, with gadolinium. Again.
Three steps forward. Two steps back.
But once the MRI is done, and clean, and we can all breathe again, then its onward.
The medicine started tonight. It will be every night. Relief is long overdue.
beatingcowdens 