Maybe it wasn’t a “Total Loss”

The Insurance Agent called Friday night.  He told me my car was a “Total Loss.”  I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

I really did love my Hyundai
I really did love my Hyundai

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me.  To me, a “Total Loss” means I didn’t learn anything.  It was a waste.  I took nothing from it.  That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day.  Sometimes what I take away is positive, and sometimes – not so much.  But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know.   And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all.  There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls.  Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride.  Especially when you know you handled it right.  It  is hard to get over hurt pride, but you can find peace with a clean conscience.  So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you.  It’s all about the stop sign.

10. Whiplash, and muscle spasms are real.  Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us.  (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust.  I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please.  The hamartomas are growing.  I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess,  I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps.  I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf.  I have parents in my school fully supporting me and working to gain signatures on a petition.  Their children’s lives are in danger every day.  I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant.  Always marry someone with a sense of humor.

16. Wear your seat belt!  Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either.  So glad I was buckled up.

17. Those silicone implants can take a good hit.  Thankfully – nothing popped!

18.  I am not going on the teacups at Disney World ever again.  I have had enough spinning for a life time!

There… not a “Total Loss” at all…

to-be-continued

Cowden’s Syndrome took…

Well, it took my thyroid, or at least any functioning part, long before I knew why.

It took my boobs in the prophylactic mastectomy that wasn’t so much prophylactic.

Cowden’s Syndrome took my uterus.  But I didn’t need it anyway.

It took my ovaries, but it gave me hot flashes in return.  Fair trade?

Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.

It took my calendar – and filled it with all sorts of places I didn’t want to be.

Cowden’s Syndrome took away my peace of mind, and filled it with worry.  (OK, MORE worry…)

It took my appetite.  If you don’t count Cheerios, ice cream, and salad.

It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.

BUT,

it gave me the means and the motivation for education and early detection.

It gave me the motivation to step forward and say, “I don’t need THESE any more.”

Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.

Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.

I encountered an acquaintance with breast cancer today.  She had on a beautiful wig, and is in the middle of chemotherapy.  I felt guilty as she asked me how I was feeling.  She knew of my ordeal last spring.  Survivor’s guilt I think.  It broke my heart to see her hurting, even though I feel she will be well again.

Cowden’s Syndrome SUCKS, in so many ways.  But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.

Cowden’s Syndrome has taken a lot from me, from us in this house.  But the knowledge we have gained will give us second chances that some others may never have.

Cowden’s Syndrome took from my body – but in many ways it gave to my soul.

Perspective.

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!

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!

Cowden’s Syndrome – The Elephant in the room

Elephant in the room” is an English metaphorical idiomfor an obvious truth that is being ignored or goes unaddressed. The idiomatic expression also applies to an obvious problem or risk no one wants to discuss.- Wikipedia

English: Elephant in the room
English: Elephant in the room (Photo credit: Wikipedia)

Cowden’s Syndrome is the “Elephant in the room.”  It is always there.  It is never going away.  Yet, most people – even immediate family- don’t want to discuss it because it makes them worried or uncomfortable.  They would prefer to justify to themselves that your constant worry, and never-ending list of appointments are nothing more than paranoia and nonsense.

 The “elephant” made its way into our house last fall.  It’s not leaving.  So we are working on respecting it, and treating it as the oversized house guest it is.  Feed it too much and it will become more overpowering in its sheer volume.  Ignore it and forget about it, and well… a hungry elephant can do some damage. 

What brought me to all this metaphorical thinking today?  It is likely to sound quite silly, but it was an earache

Now, granted it was not an ordinary earache, the whole side of my head hurt, and still does.  But the point is prior to my diagnosis, prior to my knowledge of Cowden’s Syndrome, it would have been “just an earache.” 

Instead, I woke this morning in terrible pain.  I was dizzy and uncomfortable.  I immediately started remembering all the times I was dizzy or out of sorts this week.  I have no fever, no cold, no signs of infection, no real reason for this pain.  Yet, it was bad enough for me to drive to the Urgent Care center at 9 on a Saturday morning

I waited for the doctor nervously.  I recounted my symptoms to him.  Here they know nothing of Cowden’s or chronic issues – they simply treat what they see.  So, he looked in my ear and said, “It’s not red, there is no swelling, and no sign of infection.”

 My heart sank. 

That should have been very good news.  He was sending me with a script for ear drops “just in case,” but not to worry – “there is no problem.”

 No problem except, my ear feels like it is going to explode, the whole side of my head is sore, and all I can think about is “What if there is a tumor in there?”

 This is not a rational response to an earache.  I know it isn’t.  I am also pretty sure there is no tumor anywhere near my ear.  But, this is how Cowden’s Syndrome can change your perception of reality, heighten your anxiety, and keep your worries hopping. 

If the doctor had told me I had an ear infection I would have been thrilled.  Instead I have unexplained ear pain, dizziness, and worry. 

I am sure it will get better in a few days.  That’s what I keep telling myself. But what if it doesn’t?  

Cowden’s Syndrome – the elephant in the room.

6 Months…

June 18, 2012

As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.

It was the endocrinologist we had seen the Thursday prior about the thyroid.  It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it.  This is how life will always be.  Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life.  So somehow, we need to find a way for them to get along, and exist – simultaneously.

The thyroid sonogram had been done on the 14th.  When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months.  He told me he would call me after he compared her November 2011 sonogram CD to the new one.

So I stopped in the hallway at my school.  Tears were still streaming down my face as I composed myself enough to talk to the doctor.

He reviewed the older images and compared them.  There are a lot more nodules, he didn’t even give me a number, and most of them are very small.  However, there is one a bit bigger than all the others.  He would like to keep an eye on that one.

Instead of a sonogram in a year, we got bumped back to 6 months.  Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments.  Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…

So, the last time we were there they told us to prepare.  She will have thyroid cancer I was told.  Until then, they will just watch.  December 27th it is then.

Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer.  At least not today.

So, I closed the phone and dried my eyes.  One day the thyroid will turn, but it’s not today.  Not now.  At least we can have the week to bury Grandpa in peace.

“I know…”

Kids know.  They have instincts adults have lost.  Never underestimate the power of a kid.  (This was written a few weeks ago, and I am just now getting to adding it here.)

I know that my daughter is a smart girl.  I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.

She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome.  She knows that we tend to grow things.  She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.

I am guarded but honest when I speak to her.  It is important when you have a child who is sick so often that they trust you.  I learned there is no way to lie to her and keep her trust.  So, I answer the questions she asks, using as few words as possible, and I always stay honest.

That is why I was floored a few nights ago.  She has been having a hard time with her knee again.  In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling.  She was frustrated, and she is allowed – so I held her as she cried.

What floored me was what happened next.  She grabbed onto my shoulders and looked me in the eye.  She said “I know…”  I said, “What do you know?”  She said, “Cowden’s makes it more likely for us to get cancer.  You had cancer once and you were ok.  Are you going to have it again?  Is that why you had your other surgery (the hysterectomy?)”

I swallowed hard, intent to stay focused.  “I don’t know,” I told her.  “I don’t think so.  We just took this stuff out to be safe.”

She looked at me with those tired eyes.  She looked at me for a long time.  She held me tightly and said, “I don’t like leaving you ever – even for school.”

Holding her as tightly as I could, I said, “I know…”