So here we sit. Again. For the second time post thyroidectomy, we are in the hospital. The girl doesn’t feel well. She just doesn’t. End of story. But, not too many people seem ready to listen until she’s in a full on physical crisis. Even then sometimes the numbers are frighteningly low. Yesterday she knew. She NEVER tells me to stay home from work. She KNEW. And my pediatrician heard it in my voice. She was admitted soon after he saw her. He wanted it to be the flu. In some ways I did too. A little Tamiflu and some rest. Buts she’s negative for flu. No real surprise. Too simple a diagnosis for my girl. Since her surgery in February, her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3. Enough thyroid hormone and the TSH decreases. Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time. I barely remember my own battle with thyroid hormones over 20 years ago. The veterans of this surgery tell me 6 months, a year… I get it. I do. But then there is the reality of watching your kid feel crappy every day. The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted. And then I get impatient. To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck. We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever. She never gets fever. Not really. And yesterday it was 102. Today around 100. No answer why. Not even the White Blood Cell Count gave a clear indicator. And the reflux. Painful. Like fire. Lack of desire to eat much of anything leads to weakness. And the throat clearing. Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues. The medical equivalent of robbing Peter to pay Paul. The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI. Girls can hope. So I sit. We sit. Waiting for answers to questions. Waiting for answers to more questions than we will ever get. But we are hopeful. Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.
Fortunately her shoulder injury has healed quite nicely.
She heals well. Good thing. She has had so much practice.
She progressed through the state math exam with extended time for writing.
She weaned herself off the muscle relaxants quickly.
She is tough.
Good thing.
Wednesday she pulled me aside in school and asked me to feel her neck.
“Mom, I think this is a lymph node”
As she gestured to her neck, not far above where the mass that had cause the suspicion that prompted the removal of her thyroid, had sat less than 3 months earlier.
Hesitantly I put my hand to her neck, not as much to check, but simply to verify.
I knew she was right. She is always right. I swear she’s like “The Princess and the Pea” sometimes. She can feel everything.
But I put my hand to her neck as she instructed and instantly knew there was in fact, one swollen lymph node easily felt.
“Mom, the surgeon said I only have to go back and see him if I have any swollen lymph nodes. But, he said that was “highly unlikely.” I guess he didn’t know who he was dealing with!”
She tried to make a joke, lighten the mood while reading me for a reaction. I giggled. I reassured. I felt a deep sinking flutter in my belly.
Not because I assumed it to be a problem, but more because I knew this would unleash a cascade of additional appointments, and really… well, quite frankly… we are NOT in the mood.
Of course, all of that was, and is irrelevant. I called the surgeon, whose office insisted I have a local clinician verify that it was in fact a lymph node.
I called first the ENT who has been dealing with the throat clearing issue, hoping to kill two birds with one stone so to speak. HA! His office released a new flock – of which we will have to contain what we can another day. Instead of inviting us in to check on her improvement on his medication, he determined, sight unseen – and relayed through a secretary, that Meghan should see a GI doctor.
Apparently his on the phone conclusion based on the fact that her symptoms had not fully resolved on the nose spray and increased reflux medication was that a GI needs to treat her for reflux. While that may be true, on some level, at some point, someone at some point has to realize the two of us are quickly becoming overwhelmed, and sending us to another doctor is not always a good idea. (Plus, when your kid is 5 foot 2, and 100 pounds at 10 – no GI takes you very seriously at all.) And in reality – I just needed someone to check the neck!
So, I waited for our trusty pediatrician, and Thursday afternoon – on a bright sunny spring day – after an hour and a half wait – we heard what we already knew. It in fact is a lymph node, and it should be looked at.
So as Meghan asked me in the car if she should be concerned, and I calmly let her feel my own set of chronically inflamed lymph nodes, I calculated our next steps.
When I called the surgeon’s office this time I was told we would be seen Monday. They called Friday to let me know that our appointment was to be 9:30 on the 5th.
I woke up Thursday morning with a most unusual swelling in my left eye. I can’t for the life of me figure out the cause. By Friday when I went to tell my (patience of a saint) boss that I would need Monday off, I was looking far less than my best. Puffy eye had turned red and was starting to resemble infection.
As I sat in the urgi care waiting room Friday evening ready to collect my prednisone, my antibiotic, and my stern warning that if things didn’t improve by Monday I needed to see an ophthalmologist, I wondered where the breaking point is.
We had some tough nights this week – the two of us. We had some nights feeling a lot like we were bearing the burden of Sisyphus.
It is an uncanny feeling to be at the bottom of the mountain without a prospect of getting to the top. This feeling that we WILL be at this forever, requires careful mind games to overcome and is not for the faint of heart. We both experience it very differently, so the trick becomes to rely on each other, but understand our vantage points are unique. We MUST rest on each other, but others as well. And we MUST teach each other to look for the sun and the flowers and the beauty around us right where we are. It is a tall order for me some days. My 10 year old, well, she is my hero. Because, despite the occasional setback she finds a way to pick up and keep on keeping on.
She sent me this in my Email this weekend. I read it a bunch of times. Then I hugged her. She is determined. She is driven. She is my reason for staying focused.
So I shared with her a poem on my mind…
If you think you are beaten, you are If you think you dare not, you don’t, If you like to win, but you think you can’t It is almost certain you won’t.
If you think you’ll lose, you’re lost For out of the world we find, Success begins with a fellow’s will It’s all in the state of mind.
If you think you are outclassed, you are You’ve got to think high to rise, You’ve got to be sure of yourself before You can ever win a prize.
Life’s battles don’t always go To the stronger or faster man, But soon or late the man who wins Is the man WHO THINKS HE CAN!
– Walter Wintle
Today, she had a swim meet. Her team lost. They usually do. But they are great kids, who have a BLAST, and cheer for each other. They generally have a great time. And somewhere in between the team being hammered, she was on two second place relay teams, and pulled this out.
Gray Cap – Lane 4 (After her goggles flipped at the start!)
Clearly the highlight of my week.
Now let’s hope tomorrow is much ado about nothing, and we can get about facing the next set of plans life has for us.
In the meantime – your prayers as always, are gratefully accepted.
We missed church again today. Not because we overslept. Nope. We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room. If I had my copays back each year, I think they would exceed my tax return. Which is no great shakes anyway, especially with the whole identity theft mess. But, I digress…
Yesterday was a CYO swim meet. It started poorly because the bungee on her prescription goggles snapped in my hand. And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right. So, she want back to her old goggles. Guaranteed functionality – sacrificing vision.
She swam. Hard and as fast as she could. She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly. She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too. But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.
When I met her in the locker room her resolve was strong. My mission was clearly to help her get out as fast as she could. But the arm made it tough to change quickly. We got into the car before it all came out. She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.
We came home and iced the arm. We watched as the pain seemed to get worse. It went from the arm, up into the shoulder and into the neck. We are so used to there being pain. This child lives in constant pain. Some people must think all sorts of things, because something truly always hurts. But we have learned to put them aside, and, we have to triage. Last week she walked around for 5 days with a sprained ankle. Pain is so personal. Her nerve endings seem so easily excitable. Any injury seems to trigger an attack of “hyper healing” effort by her body. Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.
But she is an athlete, trapped in a body that is not quite sure how to handle her. So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination. She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.
It’s not uncommon for her to spend the day after phys ed. recovering. Or a day or two after an athletic play date trying to work through the residual pain. I know that the other kids aren’t fighting their bodies like this, and it breaks my heart. But she is one determined young lady.
Sometimes the only option..
So last night we sent a text to our PT. To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services. And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years! And at 9PM last night we were in her living room – getting informal advice from a very skilled friend. If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis. She is the one who said, “something isn’t right here – too many unconnected pieces. Take her to genetics.” And I did. And the rest is our unfolding story.
Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.
She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!
So we did. We also got a note because the injury is to her right bicep and shoulder. Her dominant side. And there is no practice for her tomorrow. And no Phys. Ed. on Friday… and then there is the math test this week. And the gamble as to whether she will be able to write enough, fast enough… So much to think about.
The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.
We spent some time today talking about our fundraising hopes for Rare Disease Day 2015. We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013. We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project. http://globalgenes.org/
I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.
She managed to type out the homework. We are getting ready for tomorrow and another crazy week.
We are babysitting my sister-in-law’s 12-year-old rottweiler. A 3 dog house. Cause a little more chaos creates more reason to keep on keeping on.
And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before. And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did. The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.
My Favorite!
So tonight we will get a real sense of how long the muscle relaxant helps. And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.
I think I’ll get everything prepared nice and early. Just in case…
** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.**
Dear Dad,
It’s hard to imagine a year has gone by since you sat at my dining room table. We shared pizza, and red wine, and ice cream cake. And you, who had eaten in some of the most gourmet restaurants around, were so gracious, and thrilled to enjoy a simple dinner with Meghan and Felix and I in honor of your birthday.
You even tolerated coffee from my Keurig with a warm smile.
I still remember that night as if it was yesterday.
Make a wish!“Don’t take out the knife!”
And here I sit a year later… in awe of all that has gone on. Stunned that you aren’t here to celebrate.
Thinking back your year is proof positive that we need to live each moment with the knowledge there is no guarantee of tomorrow.
But, you knew that. You learned that lesson many years ago as a young Marine in the jungles of Vietnam. Then, you lived it. And you learned, and you grew, and you learned some more. But, you lived each day without malice in your heart, and with the never ending desire to do the best you could with what you had where you were.
We didn’t always have it quite right, Dad. There were years where you weren’t around too much, and I missed you. And I’ll admit to even spending some of those years a bit angry. But, I grew up.
And Mom, she did the right thing. I got to work through it all, and come out better and closer to you in the end. Heck. I made out like a bandit, because when Mom married Ken, I got to enjoy all the benefits of two Dads. Not a replacement – either one, but two! What a lucky girl…
When you came back to Staten Island a few years ago I was thrilled. Now, a mile away from my house, I got to see you more than I even had before. You got to see Meghan. And I watched a relationship blossom between you.
You were there for her dance recitals, and some swim meets. You watched her on days off from school. You taught her chess.
You got some time to get to know her during years when life had kept us apart. I felt so much closure. So much love.
You smiled all the time when you were with her, and that smile is what she carries with her each day even now.
Even when we didn’t see each other, we spoke. A lot. I loved bouncing ideas off of you, and even when we didn’t agree, I loved hearing your point of view. You always HEARD me. You never JUDGED me. You listened intently to mine and Meghan’s medical issues, and I valued your perspective. I looked forward to talking to you. Especially on the cell phone (hands free of course!) on my way home from Whole Foods. Your voice always gave me energy after a long night.
Except for that one night. When I called you on a Friday from the road back from Whole Foods, and you told me you were in ICU. Stunned, I told you I’d see you in the morning. You said I didn’t “have” to come.
We spent a lot of time together those days as they ran test after test. You were getting edgy. A caged bird.
I took you home after the answers stayed sketchy. But I was worried.
You who could walk miles. You who could work countless hours. You who was always busy. You were tired.
Your skin told the tale of jaundice. Your eyes were tired.
Meghan asked and asked to see you. You put her off. You wanted to feel better.
Then on Halloween we got a 5 minute visit…
And even though she was worried about you, that hug carried her for quite some time.
There were appointments. Back and forth. I was so grateful to be able to take you. And I was so thankful for the time we had – to talk about everything and anything.
We had some easy conversations, and we had some of the hardest conversations I will ever have in my life. But I am grateful for every one of them.
You see I always loved you – but not until those last months did I really get to know you.
“I always wanted to exclude you from my pain, never my love. But the two became one in the same.”
And in that moment there was peace. You spoke what I knew. In very few words you elaborated on the Marine who returned from Vietnam, forever changed. You told me about the hurt, and the heartache, and the fear. I learned later the scope of the losses you suffered through, and the horrors you experienced. No wonder. No wonder at all.
The months got all garbled up. There was Shane, in to stay for a while, at exactly the right time. There was Lisa, at the ready to drive anywhere we needed to be. your “team” converged, got our acts together, discovered our skill sets and became unstoppable.
Road Trips to Columbia Presbyterian. Gut wrenching diagnostic testing. Your strength – surreal. Your focus – laser sharp.
You were back to survival mode. A Marine in the jungle. We were in awe.
That last week at the VA was torture, and therapy all at the same time. You had made your wishes clear. We knew the mission. We just didn’t like it one bit.
And when the angels grabbed hold of you on December 4th, and we knew that you were finally able to rest, there was a painful peace among us.
The days of your funeral were surreal.
The days after it just as intense. So many people had to be notified. Somewhere in your 6,000 contacts we found the strength to reach out to those who loved you so.
Perhaps if I had one wish, one regret- it would be that you didn’t know how much you were loved. By your family, and by those whose lives you touched on a daily basis.
You changed people. Your impact was intense.
You suffered too much Dad, with the physical, and emotional traumas of a war fought as a young man. For 45 years you bore burdens too intense for the strongest to process. You were tired.
You told me once about Cowden’s Syndrome to never let it define Meghan and I. You told me to listen to my heart and my gut, just as much, if not more than I listened to the doctors. No worries Dad. I haven’t forgotten.
I am sad that the cancer reached up and snatched you away – with no warning. I am at least in that way grateful for the warning system that is Cowden’s Syndrome. But, don’t worry Dad… I will never forget.
You know in the months after you died I reached out to your Marines. The few you spoke a little about, and the ones I had never heard of before. There were photos, and then names, and then long conversations. They, each of them a gentleman, called me upon hearing of your death. With some I laughed. With some I cried. With all I felt a bond. They were also your brothers, each one. I learned the meaning of “Semper Fi” in those conversations. More than 45 years later they wanted to know what they could do. And they meant it.
You would be so proud to know. You are remembered. Not as a saint, but as a good man. A man who made mistakes, and owned up to them. A man who loved, deeply. A man who desired to make the world better. A man who taught by living. A man who saw beauty through his camera lens.
You made a difference; to your Marine Brothers, to your parents, to your children, to your grandchildren, to your siblings, to your nieces and nephews, to the friends form all walks of life who loved you so, to the people you worked for, to the people you worked with, and to the people who worked for you.
We played music the day before you died. You smiled. We laughed. That is the spirit I hold close in my heart – even through my tears.
Happy Birthday in Heaven. Give Angel Meghan a kiss for me.
Semper Fi Daddy. Always faithful. Until we meet again.
Sorry it’s been so long. I am working through an identity crisis.
At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.
Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission. So, countless hours and a police report later – that is ALMOST resolved.
Then, last week we went to file my taxes. Apparently someone already did that. In JANUARY!
More hours on the phone. More papers. Just what I was hoping for -really.
The whole thing seems almost too hard to believe, almost. It’s not the first time either.
And, I am pretty vigilant.
I mean I do blog – obviously. And I am not super careful about personal information here. But, with financial stuff I am guarded. I online bill pay only through my bank – which incidentally changed this week. I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.
I don’t use my debit card for anything. I keep one credit card and monitor its online activity every 48 hours.
By all accounts I am on my game. But, apparently someone else is there too.
And I can’t figure out why, although I have a host of suspicions. Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way. We fill out lots of papers, but we do so because we have to in whatever situation requires it.
What I want to know really is, does someone truly WANT to be ME?
I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?
I’m not trying to say my life is THAT bad. I can count dozens of others whose predicaments are worse – but it doesn’t let up. Not for a minute. Ever.
It’s like that hamster in the wheel thing. Not for the faint of heart.
I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two. Maybe during a “fake” Spring Break?
That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.
Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.
Or maybe they would like to copy the police reports, and mail them out.
Or perhaps they’s like to file the medical bills. And then call the get the errors corrected. And then call again when the bills go to collections for no reason.
Maybe they would like to drive. Through Manhattan. The place I swore many years ago I would never drive. All day. And pay repeatedly to park the car.
Because this week I could have used some back up. A 1 o’clock appointment Monday for me – genetics. A story for another day. And then yesterday to Long Island for one of the few doctors who listens to us. And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan. Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat. I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.
And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck. We made the appointment, in time to hear his ideas, and hop back in the car.
Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.
Then, granola in the car and off to the other practice. Where I sit. Now. Waiting.
Prior to my nutritional cleansing I would say I was exhausted. Now, I am just tired. Tired, and confused. But I have strength and stamina that I never possessed before.
WON’T be without my Ionix!
Where exactly is my real life?
Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve? I hope not. Because I don’t like the numbers and they don’t like my questions. Something will have to give.
Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?
Probably not.
The good thing about an identity crisis is it forces you to focus. It forces you to stop and think about who you are, and what matters to you. It forces you to decide to be deliberate in your thoughts, words and actions.
Initially I spent a good deal of time very angry about the identity thing. It took quite some time to start shaking it off. I am much better now- although not thrilled, I’ve come far.
See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”
Wise words from my preteen.
I am angry. But it won’t control who I am.
Identity theft sucks. It’s mean and it’s wrong, and it’s a time-consuming pain.
Cowden’s Syndrome is flat out horrendous. The follow up appointments are enough to drive you mad. If you let them.
Life seems to be tossing boulders.
Maybe my identity is “boulder catcher,” so I can put them gently down.
Or “magician” so I can turn them into something more gentle and flowery.
I know who I am.
And I can not, and will not be defined by the obstacles in my path.
I will not remain a ‘Victim” of identity theft – or anything.
I have “Cowden’s Syndrome” but I will not let it have me.
I am a mom.
I am a wife.
I am a sister.
I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.
Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.
On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.
Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”
They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.
And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)
We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.
This kid is clearly a “FORCE” to be reckoned with!
We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.
Meghan and “AJ” our helpful tour guide!
Then, it was time.
Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.
The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.
Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.
He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.
Her eyes brightened. Her goals got larger.
“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.
And she did.
And she will.
Watch out world.
Thank you Borough President Oddo. Staten Island is in good hands. You are one of the good guys.
Sometimes I forget that Cowden’s Syndrome is not just Meghan’s – it’s mine. If I am to be precise, it is Meghan’s BECAUSE of me. And I say that not out of guilt, but more as a point of fact. And I had plenty of time to think about THAT – and the rest of the week – in the MRI this morning. Last summer when I saw the oncologist, and the surgeon about the 4 sizable vascular tumors on my spleen, they were unsettled. I fought hard for my spleen. I felt I owed in to my emptying insides, currently missing my uterus and ovaries. I “won” a 9 month reprieve. And not the sentence is up for review.
So as I arrived at the facility at 9AM, and by the stroke of those angels, found on street parking in NYC, I dutifully filled out the intake papers. Papers that, well between Meghan I, I have lost count of the number of times I have completed.
Any chance you might be pregnant? Asks the male technician who brought me back. Even though I had written the date of my hysterectomy on the intake papers, I dutifully replied, No. Not that I ever WANTED to be pregnant again, but you know sometimes they could read…
Any implants in your body? Metal, I asked? No, ANY as he clutches the paper I spent 15 minutes completing – unread. Yes, I have breast implants – a double mastectomy 2 years ago. I gestured toward my purposely selected “NO, They’re not real – the real ones tried to kill me” shirt. Not even a smile. Why are you having this exam? By now I am ready to scream JUST READ! But I know better. I have played the game too often, and the man you yell at now could be the one inserting your IV in 10 minutes. Because there are 4 tumors on my spleen that are being monitored.
HOW DID YOU FIND THOSE? asked the non- reader. Well, I have Cowden’s Syndrome – and we tend to grow tumors. So they were found accidentally during another scan.
Oh.
That was the end of the medical talk. Maybe the words “Cowden’s Syndrome” stumped him. Just as well. Directions on what to take off and what to leave on. Locker key in hand, I was led up the stairs by the non-reader to the tiniest MRI machine I have ever seen. (and I have seen quite a few.) Meghan did some time in this machine during the 3 hour MRI debacle of her hand last summer. I felt a wave of nausea and I am not typically too freaked by these.
“How did I end up in the tiny magnet?” The non-reader, still with me, grunted that I was the thinnest one in the waiting room.
Not sure if that was a backwards compliment. Thank you ISAGENIX – I think. Grateful I had held my tongue it became apparent that the non-reader and I were in this together. As he told me to lay down so he could start my IV. I sat straight up. My daughter gets a few things from me. I sat up and had the IV placed so the toxic gadolinium could drip slowly though my body. I laid down, closed my eyes and kept them closed the whole time. I am pretty sure my nose would’ve been almost at the top.
And as I spent 30 minutes amid the noise and banging… “Breathe in… breathe out… stop breathing. Breathe normal.” My mind wandered. I hadn’t given much thought to the MRI, or the reality that it COULD indicate growing tumors, and another surgery. For so many reasons I have blocked the thought. But, now its too late. It’s like telling a secret. The images have been shot. The report will be read next week. The reality that already is has been exposed, and I just get to wait and see. Cowden’s Syndrome. We grow things. It’s what we do.
I am grateful maybe, for the insane pace of life. For the full time job. For the daughter who swims, and has PT and doctors galore. For the car that won’t go into gear – the 1996 that has likely seen its last trip – but can’t be replaced right now. For the paperwork that keeps me on my toes, and sometimes drowning a bit. For the letters that need writing, and the never ending list of phone calls that need to be made. I am grateful even for the “calm” day, when we didn’t have much to do – until I noticed a bulge in the sidewall of the tire Thursday. So I grumbled a bit, then thanked my angels and headed off to Costco, where they put on the donut and told me to come back Friday. I did, and the tire is new. The car is safe.
So I logged onto my online bill pay to see what had cleared and got the shock of my life as the zero balance hopped off the page. Phone in hand immediately calling my bank. Apparently it only took someone a day to extract $2000 from my life, and start a cycle of more unending paperwork.
Two hours at the bank yesterday, an hour at the Police Station. My only wish for the dimwit who decided to pay his credit card bills with my money is that if he REALLY wants to be me – he takes the whole deal. The doctors, the tests, the tumors, the bills, the anxiety, the WHOLE thing. After all, its’s only fair… if you want to take someone’s identity – you should knwo what you are getting into. Sometimes I forget I have Cowden’s Syndrome. I am always sure Cowden’s Syndrome doesn’t have me. There are too many other things vying for my attention. As the non-reader said, “Breathe in… Breathe out…. Stop Breathing. Breathe Normal. OK your test is finished.” HA! If only he knew…
This one is a favorite of a dear internet friend 🙂
This image has been on my mind all week. Truth be told there is an awful lot on my mind, and I apologize that most of it is likely to come out jumbled. When I don’t get to the computer regularly there is all this stream of consciousness stuff…
My girl feels cruddy. And I know, “its a big surgery,” and “it takes time to even things out.” But it really stinks. Her thyroid numbers are way out of whack. The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them. If my thyroid numbers were as wacky as hers you’d be scraping me off the floor. Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too. Good thing I live in a big city. I might well run out of doctors otherwise.
It is so hard to watch her – feeling betrayed by her own body.
She is bright. And kind. And super rational. She gets the whole idea that people have it worse. She is grounded.
But sometimes she is 10. And she doesn’t understand why she can’t keep up. Cognitively she can dance. But physically…
She has to decide on a Friday if we are busy on Saturday morning. This way she knows if she can play gym. She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover. She played last week. She had the time of her life. Good thing the school staff doesn’t have to watch her get out of bed on Saturday.
And running. How she LOVES to run. And she’s fast. But she can’t. Not for long anyway. Tendonitis, inflammation. And forget it this week as we TRIED to lower the Celebrex.
Never mind the swimming. She belongs to a team that practices 4 times a week. On a good week we get there twice. Not for lack of trying, but exhaustion gets in the way. It is CYO season now, so she is with a more recreational team too. Some fun times. But she wants to be faster. And she could be. But her body betrays her. And it makes her angry.
And now the headache. The migraine returned 2 days ago despite the recent medication increase. She is just so very tired. The neurologist called me tonight. Increase the Celebrex. See if that helps. So much for less medicine. Let’s pray for relief.
I think alot about the others. I think about the other’s with RARE Diseases. I think about the ones less fortunate than us.
I also think about the other’s with Cowden’s Syndrome. I have never met them – any of them except my own girl. But, we “know” quite a few. There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers. We share experiences and ideas, and successes and disappointments. We toss things out to each other before the rest of the world. We speak safely to people who “get it.” And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.
I often go to bed and wake worried about these people I’ve never met. I think about their physical struggles, and their family struggles. I pray for them when they have tests, and surgeries, and they do the same for us. People could argue they aren’t “real” friends. I would have to disagree. They give me hope.
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Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter. And inside the package are jeans for Meghan and I. Carefully sewn on each rear pocket is the denim ribbon symbol. Also in the package was a bag “Hope, It’s in our Genes.” Yep. It sure is. A friend of my sister’s. Inspired my some crazy words she’s read here. Go figure. Grateful.
And there are the events coming up. The fifth grade events. The ones where she will try her best to fit in. The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance. The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food. Just another way to feel different. But she plugs along. Keeps that smile. stays focused on the good as best she can. Because she is acutely aware that there is a lot of good. And painfully aware that things are fleeting.
We miss my father. It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world. There is a glitch in each direction. No major problems. Always just a series of minor ones. He may not have been always around, but the time he was was powerful. Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others. But I do, we do what we can to keep his memory alive. We talk about reality, and we keep our most special missions close to our hearts.
There should be sunshine and roses. But there isn’t. Well maybe there is… if we look hard enough. All I seem to hear are stories of tragedy, heartache and pain. In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness. I don’t profess to know the grand plan. Not for a moment. And I am sure its better that way. I have only learned to find the blessings I can in whatever I can, as frequently as I can. That is what keeps me sane.
I am far from perfect at this. FAR from perfect. But I – like all of us, am a work in progress. So as the days sometimes seem insurmountable… I remind myself, and my girl – that we have to follow Dory’s advice…
Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!
Meghan chatting with Borough President Oddo!
Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.
This is her speech.
Living with Cowden’s Syndrome
Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.
Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.
We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.
Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.
Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.
I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.
All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.
When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.
Be KIND, be AWARE, Rare Diseases are EVERYWHERE!
And then – as if I wasn’t proud enough…. she put this video together all by herself….
Such a proud Mom! Spreading the word…. LOVE this kid.
The girl doesn’t feel well. She just doesn’t. End of story. But, not too many people seem ready to listen until she’s in a full on physical crisis. Even then sometimes the numbers are frighteningly low. Yesterday she knew. She NEVER tells me to stay home from work. She KNEW. And my pediatrician heard it in my voice. She was admitted soon after he saw her. He wanted it to be the flu. In some ways I did too. A little Tamiflu and some rest. Buts she’s negative for flu. No real surprise. Too simple a diagnosis for my girl. Since her surgery in February, her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3. Enough thyroid hormone and the TSH decreases. Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time. I barely remember my own battle with thyroid hormones over 20 years ago. The veterans of this surgery tell me 6 months, a year… I get it. I do. But then there is the reality of watching your kid feel crappy every day. The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted. And then I get impatient. 
To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck. We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever. She never gets fever. Not really. And yesterday it was 102. Today around 100. No answer why. Not even the White Blood Cell Count gave a clear indicator. And the reflux. Painful. Like fire. Lack of desire to eat much of anything leads to weakness. 
And the throat clearing. Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues. The medical equivalent of robbing Peter to pay Paul. The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI. Girls can hope. So I sit. We sit. Waiting for answers to questions. Waiting for answers to more questions than we will ever get. But we are hopeful. Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.
beatingcowdens 