Just Another Day “Off”

 We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor!  Because, that my friends, is how we roll.  Except today wasn’t a high-tech specialist or a visit to Manhattan for testing.  Today was kind of ordinary.  Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7.  At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated.  At 7 she had a rake put in her mouth.  A fixed appliance, similar in concept to a palate expander, but different.  A rake is there to break the tongue thrusting habit.  She wore that fixed appliance for a year, and a removable nighttime retainer for another year.  All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in.  I asked when, and was told, “soon.”  It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months. 

Quickly doing the math I asked, “She could have them off before Junior High?”  Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again.  I asked him if she was too young.  He told me her chronological age really had nothing to do with things.  Her dental age makes the decisions.  Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time.  She asked me question after question.  She was curious about my braces, and her Dad’s experience as well.  She wanted to know why I thought it was so good to have them off before 6th grade.  She told me she was scared,  which I said was normal.  She asked me why everything was happening at once.  Why was her body growing so much, why is she ready for braces, why can’t she just take a rest?  She understands really, she always does.  But sometimes she needs the pep talk that we have to press on.  She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all.  Don’t blog about it.  Don’t tell your friends.  Don’t tell anyone.  I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut.  But she was clear.  This was HER secret – not to be released without her permission.  And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day.  When I share my life here, I am also sharing hers.  And she wants, and deserves a say.  We have talked a lot since then about whet I can and can not write about.  She puts very few restrictions on me, and I appreciate that – but I respect each one.  This life is hers too.  And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS.  I write about breast cancer and my mastectomy and hysterectomy.  I write about her worries about cancer.  I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal.  I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read.  If it bothers her.  It comes out.  Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness.  She gets it.  She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.)  There were some tears then.  Some frustration about  wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today.  For both of us.  We stayed calm.  We had another long talk about how “everyone has something” even though it seems she has an awful lot.  We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her.  That young lady never seems to complain either.  Maybe that’s why Meghan respects her, and is drawn to her.  Kindred spirits?  We know quite a few.

We got the bracket fixed.  We headed to Party City.  We got a bargain on matching Halloween costumes.  We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November.  Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth.  Soon they will become  natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished.  One day I would just like the mission to be a day in our PJs!

Award winning smile – even before the braces!

Fighting My Way Out of the Cage

A few days ago I wrote about my dog Lucky – biting through the cage.  Well she got her wish, and she is a free dog now.  Free to roam around my house, lay where she wants, and drink when she wants.  She is much calmer and happier now.  It doesn’t take much to make her happy.

Why then can I not take her lead?  Why am I living in the cage of my own thoughts? 

My husband, he has the right idea.  He worries only when it is absolutely necessary.  I worry about making sure the stove is turned off.  He worries when the house catches fire.  Maybe it’s a male/ female thing.  Maybe it’s my controlling OCD.  Who knows?  What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic.  Some say it was inevitable after the year we have had.  I think it stretched back much farther.  I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post.  She talked about her brain continuing 24/7 even when she asks it not to.  That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping.  And those are just mine – not Meghan‘s!  We average 3 doctors a week, usually at least 2 on the schedule and a pop up.  Each one seems to look, poke and prod and not offer a single answer.  Then the tests lead to more tests.  It’s a bad cycle we are in here.  So then I spend my spare time researching – thinking maybe I can find the answers they don’t know.  I end up just as clueless and thoroughly exhausted.  Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out.  I am “luckier” than my dog Lucky – no pun intended.  I have the benefit of being able to free myself.  I just never seem to get it quite right.

I am going to try that one day at a time thing again.  I am going to try to concentrate on all the many things that have gone right.  I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest.  I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid.  I swear I will try.  It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality.  ONE DAY AT A TIME!

TODAY – good things happened.  I got through the baseline screening colonoscopy and endoscopy.  The colonoscopy was completely CLEAN!  I do not have to go back for another 3 YEARS!  Beats the heck out of the every 6 months they were recommending for Cowden’s patients.  Also, my CLEAN scope frees up my little girl for a while.  As long as mine stay clean they won’t start screening her until she is at least 18.  Breathe.  Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage.  We can do it – one day at a time!

Stay tuned…

I learned a few things as I set up my classroom this week.  Many of them I will not say here, because Mom always says, “If you don’t have anything nice to say, don’t say anything at all!”  Well at least that’s what she used to say when we were young…  but I digress.

I have been without my own classroom for a few years now.  I have been a traveling math cluster, and then last year shared a room with a colleague.  This year I was given my own 3rd floor room. It is harder to have a room, but change is good – so I was ready and excited to try it out.  And grateful for the opportunity. 

See last spring my colleague and I were told we were to share the 3rd floor room.  So, in the heat of June we brought everything we could (using LOTS of kids to help) up to that room.  The rest of my personal belongings (from the first 10 years in the classroom) were stored in a nearby storage closet.

Sometime over the summer I got an Email that the schedule had changed.  The third floor room would be mine alone, and the 1st floor room would belong to my colleague.  So I set about the business of buying all the things you need for a room.

I brought my things in on August 22nd, but I couldn’t stay to set up.  Meghan had an appointment.  As a matter of fact I couldn’t come in the next day either because of two of my appointments -so I first got in to get settled yesterday.

Much to my surprise, the storage closet where all my personal things were had a new lock.  I didn’t have a key so I took that as my clue to vacate. 

Now, prior to the Mastectomy, I was pretty strong.  I helped my husband renovate the house.  I know how to move heavy things.  Prior to the hysterectomy and the mastectomy – just a few short months apart, and just 6 months ago… I felt like this.

Now, after moving boxes for 3 hours yesterday. up and down the stairs, even with the help of a few well intentioned friends, I feel more like this.

I am sore in places I had no idea it was OK to be sore.  This was either an eye opener to my age, my body’s fatigue, or the fact that it is time for some serious exercise.

But, after 2 days my classroom went from this:

To a lot closer to this:

Which is a good thing, because I just don’t do clutter well at all.

So when I left a little more relaxed it was time to get a confusing phone call from the doctor.

Meghan’s blood panel appears normal, but I have to compare the thyroid numbers off the last one when I see it.  That was OK, and then he said the MRI had an “ODD” finding – shocker!

The “anterior pituitary tissue is seen though it is diminutive in size for age.”

Still actively trying to figure out what that means, especially because we were scanning for a pituitary tumor to try to find the cause of the early puberty. Now, clearly the pituitary is TOO SMALL?  Really?  I just can’t figure this out.

Grateful there is no tumor, I asked the doctor if it was insignificant.  To which he replied, “Everything means something.  I have never seen this before but I will be asking a lot of questions.”

So, fourth grade for my big girl tomorrow.  One day at a time, this is all we can do…

Random Reflections – nothing profound today!

We tried another church today.  This time all three of us went.  A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless.  Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

Førde Church, a typical Protestant church in N...

God has a plan.  And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.”  I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me.  So we will see.  At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day.  Glad we got in a swim yesterday.  It may have been the last one.  We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner.  Hoping its nothing too serious. 

We got to spend the afternoon with my grandparents and my parents.  Last minute plans are always a treat when we get to be with family.  Pop was 93 last week.  Grandma will be 92 in 2 weeks.  GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday.  She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things.  I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend.  She told me I could get it Tuesday.  I chuckled.

No matter how hard I try…  “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday.  I will not physically be able to have the CD burned until Friday.  They will get it in about a week and a half.  At which point she nicely reminded me that it could be serious.  To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think.  But, what I meant was, I have undergone 2 major surgeries in the last 6 months.  I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one.  Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD.  I will get the results of Meghan’s blood test and MRI.  I will call Meghan’s school and sort out the busing mess that is developing for the first day of school.  I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed.  I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work.  We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine.  LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!

Whose afraid on an MRI? Not me – practice makes perfect!

MRI

So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing.  Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to.  I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.

Today it was an abdominal MRI.  Now if you have been following the story at all you know my abdomen is missing a few things.  You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome.  Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.

So, why the MRI?  Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma.  A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem.  So, they like to screen for it – twice a year with an abdominal MRI.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

Part of me wishes they could just do the kidney.  You see I have this theory about taking the used car to the mechanic…  You just sometimes find out more than you wanted to know.

OK Used Cars

 I really am not in the mood to lose any more organs.  I think I have reached my quota for the year.  And I have to tell you, this is one hell of a way to lose a few pounds.

So, somtime tomorrow or Monday the oncologist will call me.  She will tell me that the kidneys look great.  She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is.  She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all.  She will tell me all that because that is what I need to hear.  And hopefully it will all be true.

I need it to be true.  Because I will be busy.  An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!

Some days I wait for the break.  The time when we will be without doctors.  Then I realize this is all so new.  They are all so scared and confused they are doing all they can when they scan this, study that…  Hey, it worked for me when they saved my life with the breast cancer.  And, it will work to keep my girl safe as we scan her thyroid religiously.

I am tired.  I would be lying if I said anything else.  I am TIRED of doctors.  But, as I said before… I will keep going, necause there is no choice.  Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit

At least I am not afraid of the MRI tube anymore!

Fireworks in My Heart

After 12 years of marriage, I still feel fireworks for my husband!

When we were vacationing at Disney World, we stopped one night to see the beautiful fireworks show at EPCOT.  My husband captured a few great shots, as I sat with Meghan and watched the show in awe.  It was such a wonderful, peaceful, “normal” night, and I relished every second.

I watched my husband, practicallly laying on concrete to take photos – partially because he loves photography, but also partially because he knew I was photo obsessed this trip – and I couldn’t help but think how much I adore him.

Those wild days of dating and hot romance have toned down into a sense of companionship, but there is still plenty of passion in our lives.  He can give my stomach a flip with a touch, or a hug; with a quick kiss or a slow one.

I loved him soon after we met.  I loved him more when we married, but I never could have imagined I’d be this in love.

He has held my hand this past year alone, as we watched Meghan be wheeled into surgery for the 9th time.

He lovingly drained my drains after the mastectomy.  He held me, and reassured me.  He told me I was still beautiful, and even helped me believe it.

And, when it came time for the hysterectomy I spent many nights in his arms listening to him repeatedly explain what I already knew – “You are more than the sum of your parts!”

From the start of this whole Cowden’s Syndrome mess, his ONLY concern has been keeping us safe and healthy.  He is my biggest support system, my cheerleader, and my safety net.

I have been blessed in so many ways, but I truly feel this PTEN mutation, helped strengthen an already solid marriage.

He goes back to work in a few hours, and I couldn’t be more sad.  My happiest times are when we are a family of three.

The loves of my life!

You STILL don’t LOOK sick (reblog from 5/26/12)

We are headed home tomorrow from a wonderful family vacation. I will have lots of lovely things to tell you about the fun we had and the great people we encountered. Unfortunately there are still some ignorant people… even here, who do not realize you can look perfectly healthy and still be “sick.” There were a few times… especially today when the monorail operator gave us an attitude when we asked for a ramp into the handicap accessible car (even though her chair is clearly marked as a wheelchair.) People can be so frustratingly ignorant. She notices now, and it bothers her, but she is awesome, and she tells me she hopes they never know what it’s like because no one should feel this way. So here it is one more time…

beatingcowdens's avatarbeatingcowdens

“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick.  As a matter of fact we look alike.  A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome.  To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.”  When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?”  Actually she is 8, and she would…

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Thought for the day…

A friend of mine posted this on her Facebook page today.  She is the kind of person who every day finds something to be grateful for.  I love that about her.  Those are the people worth surrounding yourself with!

Today was the kind of day that could have gone either way.  Three doctors appointments back to back in ManhattanMeghan and Felix home together.  I was a bit bitter about wasting a day.

But I got a spot in my favorite lot, and got in a nice walk.  Then I met a new dermatologist who studied me very closely.  She KNEW what Cowden’s Syndrome was!  And, as she took my medical history about the breast cancer, and the hysterectomy, she said “you look awfully good for the year you’ve had!”  I had to smile.  She understood the rarity of Cowden’s well enough to call the resident in to look at my gums, and what I have come to learn are “classic” Cowden’s marks on my palms and feet.  The resident is studying melanoma specifically, so she let her “double check” and ask me all sorts of questions.  What a treat to not feel like a freak and be in a room with people trying to learn.  Even more of a treat to hear that all is well, and I don’t have to come back for 6 months. 

I made it to doctor number 2 – the endocrinologist with time to spare.  So, she took me early.  An exam, some conversation about the past few months, (through NYUs new system where all the doctors are linked,) some talk about a bone density test in the next few month, a script for blood, and an invitation to return in 6 months.  Wooohoo!  2 for 2!

Early for doctor number 3, the breast surgeon, I had to endure a bit of a wait.  She however, is THRILLED with my healing, and said I don’t need to see her for a year!  (We will do 6 months just so I stagger her with the plastic surgeon, one every February, and one every August – but still! :-))  She asked about my new oncologist, also an NYU doctor, who had contacted her to discuss my case.

Am I starting to feel like there is a competent team of doctors out there?

So, I made exactly the same appointment, same three doctors, February 19th.  How nice to come into the city once and park once, and get three done at once.  Maybe… just maybe… we can start to get our lives back, little by little.

I was home by 2.  Enough time to spend the rest of the day with my family.  Who cares that the black car doesn’t start.  We will take care of that another day…

When I saw that picture tonight I had to smile.  I could have had a really crappy day – but I didn’t.

Because I decided not to!

Stick Your Face in an Air Conditioner and Deal With It!

Window air conditioner, from left side

Maybe that should be the slogan for 30 something (ok closer to 40, I know) women who have been thrust into menopause.  Kind of like the equivalent “Put on your big girl panties…”

Estrogen loss and menopause.  Two more things I can thank Cowden’s Syndrome for, as I learn all the side effects connected with both – one at a time.   At least I can relate to… well, not really ANYONE in my age bracket.  But that’s Ok… I am getting used to it.

Fortunately it hasn’t been THAT bad yet, but I have found myself a little sweatier than normal, and I have been known to stick my face in an air conditioner lately while throwing an ice cube down my back.

I am not one to complain too much, but really, the reality of this one took a little time to catch up with me.

Yeah, I know it had to go.  Blah, Blah Blah… Cowden’s Syndrome, uterine cancer, suspicious polyp.  I get it.  Oh, and your ovaries are way too big, too many cysts, let’s take those too.  Sure – why not?

Nothing would have changed if I had asked all the questions in the world.  It had to be done.  And I am learning sometimes it is better not to know everything at once.

So, I am hearing words like calcium supplements, bone scan, and osteoporosis, while I have friends my age going for 20 week ultrasounds.  Don’t misunderstand me.  I never wanted another baby – but it just seems wrong.  Like I have warped into a different reality.

That’s what these last few months feel like sometimes.  A bad sci-fi movie.  I am the girl who gets all her body parts cut out, one or two or three at a time. 

I wonder how it ends. 

And, most importantly I hope the movie theater has air conditioning.  It’s HOT in here!

I Am Blessed

This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!

It is late.  I should be asleep.  Morning comes fast and it is already after midnight.  I just can’t seem to find a way to unwind. 

I just had a long chat with a ‘new” friend.  That helped a lot.  But still here I am, trying to get these racing thoughts out of my head before I rest.  

I saw a new oncologist today.  The geneticist insisted I have one to follow me and one for Meghan.  Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious.  (Ok, perhaps I exaggerate, but they weren’t anxious to see me.) 

So the geneticist sent out an Email on Tuesday to some of his friends.  By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today. 

She is lovely.  Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier.  Now she gets to push me to the fun stuff.  Next up- colonoscopy, and kidney MRI.  So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI. 

And all the while I will mourn a bit for the summer that wasn’t meant to be.  This was more, a necessary doctor “catch up period.”  I think by the end of August we will have at least 25 appointments done between us.  And those are just the ones scheduled right now. 

So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember.  Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment. 

So, we still get our trip to Disney, and there is always NEXT summer… 

I spent the last hour preparing for Meghan’s oncologist visit on Friday.  We haven’t seen this doctor for months.  There have been a few things going on.  So, I faxed her 32 pages of what we have been up to.  She wanted to review it before the appointment. 

I posted the cartoon because I had her binder out while I was preparing the fax.  I laugh every time I read it because even after all these years it is still true.  Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain.  Every day.  And not one of these doctors that we take her to can tell us why. 

I thank GOD every day for her stamina, and her spirit and her spunk.  She is my love, my reality check, my perspective, my reason for being.  I feel displaced right now, from my church, my comfort zone – but not from God.  Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare.  God has us in the palm of His hand.  We are blessed.  And it WILL be OK!