Tag: Cowden’s Syndrome

Family Photo!

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Family Photo

This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.

This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.

We are a family of three.  Immediate family that is.  (Not including our furry friends Allie, and Lucky.)

Our extended family includes his parents, two sisters, a brother-in-law, and three nephews.  On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides.  Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that.  While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!

We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers.  We will be making it a 5th this year.  We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.

It is usually the week of Meghan’s birthday.  It is doctor free, no needles, just be “normal” week. We take LOTS of pictures.  Usually it is of Meghan alone, or of one of us with Meghan.  They are great photos and I treasure them.  The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs.  Meghan and I have dresses picked out, and matching sandals too.  (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)

There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.

I have been smacked in the face with the reality of the frailty of life.  In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone.  Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life.  Gone.  But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.

Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer.  She is strong, a survivor, still here, enriching our lives.

Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.

I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months.  One nodule is starting to dominate.”

I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.

My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week.  Families out to see a movie – life ended so tragically.

I love to look at pictures.  In an age when people have stopped printing them, I have shelves FULL of albums.  I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.

Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times.  So since 2012 has been quite the year, we will take a “fancy” family photo.  One that will hang somewhere in our house and remind us that we can endure the tough times.  One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.

One that will remind us that we are defined by our spirits, and not by the sum of our parts.

We are family, and a pretty special one at that.

Family Photo!

One year…

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One year…

It just sounds better than 6 months.  It feels better too. 

“Six months” says, we are still a bit concerned.

A year says, “You got this.  I’ll just check back and make sure it’s all good.”

One year from now I will visit the plastic surgeon.  She will check on my fake boobs, and make sure they are still doing exactly what they are supposed to do.  (Which near as I can figure is stay still.)

Next month I visit the breast surgeon.  Hoping to get “one year” from her too.

Eventually my life and Meghan’s will be in some type of maintenance cycle.  We still have some time before we get there, and there will always be doctor’s appointments – but for now it’s a big win.

The cancer is long gone.

I heal pretty well.  Especially on the outside.

Cowden’s Syndrome is good for something.

The Cowden’s Syndrome Roller Coaster

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Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things.  It could be modified to hold the cell phone that is constantly in my hand!  I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier.  I LOVED having my hands free again.  I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone.  I waited forever for the vascular surgeon to call.  Now Dr. K from Boston called Saturday, and we still haven’t connected.   

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Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

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Today was a banner day. 

It was the FIRST time we have been to the beach since before her first birthday.

  This child was so sensory sensitive that we were both deeply traumatized by the first trip.  It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

 We only stayed a few hours. 

Long enough to get into the sand and build a castle.  Long enough to find a few shells.  Long enough to jump a few waves.  Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.” 

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring. 

But then what? 

Will Dr. K have a single answer? 

Will he want us to drive 5 hours just so he can say, “I don’t know?” 

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.  

It was a friendly visit, catching up on all we have done.  I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago.  It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

 He asked a lot of questions again.  He looked closely at Meghan, especially her legs.  He pointed out again the 1/2 cm discrepancy.  He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!) 

He listened to my concerns about her avoidance of activities.  He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint.  Not JRA, but degenerative arthritis.  He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives. 

He will nose around, and see if he can get a closer orthopedist to take a look.  Then he will look for an oncologist for me.  In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe.  Just a baseline. 

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting.  Always waiting, and wondering, and worrying.  What next?  Can we fix it?  Wait… nothing new please!  We haven’t fixed the last thing yet… and so on and so on. 

 Tomorrow we will go back to the pediatrician to recheck for the recurrent strep.  Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan. 

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad.  Good thing.  I think it’s a case of life imitating amusement park here. 

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!

I really wish I had kept my broken genes to myself!

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Apparently this has become like a sleeping pill to me.  This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest.  I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself.  The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives.  Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome.  Most of them don’t care to find out, and the few that do, well – I will let you know.  I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon.  The same doctor that has embolized the AVM in her knee 4 times.  The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston.  “We just drained  30 ccs of blood from under your daughter’s kneecap.  I don’t know why it was there.  You should go meet with this doctor and see what he has to say.  He will likely want to put a scope under her kneecap after she has healed.” 

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break.  He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment.  He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did.  And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room.  The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.” 

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee.  Even as I pointed to an obvious bump he told me it was nothing.  I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass.  He told me he reviewed the CD and disagrees with the report.  Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.”  On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months.  They will reevaluate.  Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed.  Shouldn’t have done it, but I cried.  Fatal mistake.  I now look like a complete ass, when that is his job.  And he does it better than I ever could.  He actually had the nerve to lecture me that I would make my daughter upset.  I still can’t believe I took that.  (Still stewing!)  AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing.  I have been working on it for years.  UGH!

You know I wasn’t crying because i was sad.  I actually was really relieved at the thought that no surgery was necessary.  I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee.  The things she can not participate in, or the modifications she has to make just to avoid pain.  She does them effortlessly.  Every day.  No one knows except me.  And it kills me.

So when we were leaving I tried to find the bright side.  I said, “See, at least you won’t need knee surgery this year.”  To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway.  When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

Frustration…

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Angry Penguin
Angry Penguin (Photo credit: Wikipedia)

It felt like anger at first, but it isn’t.  Sometimes even at my age I forget things I already knew about myself.

I cry when I am frustrated and overwhelmed.

I am not really angry.  That takes up too  much energy and I have none to spare.  To be angry there has to be a target of your anger.  And really, who or what am I going to be angry at?  And what purpose would it serve?

Now frustrated is a different story.  Frustrated is when the control freak can’t sit long enough to organize the pile on her desk. 

Frustrated is the dead sod in the yard, and the cucumber and zucchini that seem to have developed a “creeping crud” fungal infection.

Frustrated is when old “life” problems, like credit and identity theft issues that were solved three years ago start taking up time, and there isn’t much to spare.

Frustrated is when you can’t get a doctor who takes your insurance (despite countless phone calls) to order the tests you need so you can stay well enough to be on top of the (not so bright) doctors who are treating your daughter.

Frustrated is trying to plan some FUN events when doctors appointments keep getting in the way.

Super frustrated is having to go to NYC to see the knee surgeon tomorrow, on a perfectly nice – I should be scheduling a play date for my kid- kind of day.  Frustrated is being unsure how to get my point across without being escorted out by security, and/or without scaring my kid.

Frustrated is going to the appointment alone- when I really want my husband there, but knowing it is not the kind of appointment he should take off work for.

Frustrated is wanting so badly to let some of this worry go, and knowing I can’t.

Frustrated is a new medical issue, every time I turn my head. 

A toddler girl crying
A toddler girl crying (Photo credit: Wikipedia)

Frustration IS Cowden’s x2!

Sometimes I cry when I am frustrated…  but everything always looks better in the morning.  ( I hope!)

TWO bathing suits to pick from!!!!!

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I never owned a 2 piece suit in my life… even though you can’t tell! 

Sorry about the strange head tilt… Never owned a suit that wasn’t primarily black either!

CAN I HAVE A WOOHOO?  THERE ARE BATHING SUITS AFTER A MASTECTOMY!

 Today after a few annoying things happened (like setting up Meghan’s appointment for Friday morning with the stupid surgeon, and fighting with a credit reporting agency over an old identity theft issue)  I got to try on my new bathing suits. 

Now, this (almost 39 year old) body, is in no condition to model, but I was so very excited I had to share. 

Since the mastectomy I have had a lot of work getting used to my new boobs.  They are smaller than the old ones, and that seems to be just as difficult to adjust to as if they had become bigger.  It just changes everything – the way everything fits and feels. 

I have also had to get used to no underwire – in anything.  That has been an understandable, but difficult transition. So, I have pretty much transformed my closet into tops that worked for me.  Lots of new T shirts, a couple of dress shirts that still need a tuck at the shoulder to tighten them up by the boobs.  But all in all – its going ok. 

When I first put on last years bathing suits I did cry a little.  I had to immediately put all but 1 (which was salvageable, but not great) up in the attic.  Not only did the boobs just not work in those suits, the stress of the last few months has taken off some pounds.  So they were a mess. I ordered 1 suit a few weeks ago.  My husband made me take it off because he said it made my boobs look fake.  (LOL… newsflash honey… )  But I understood. 

Got these in the mail today and got the seal of approval on both.  I have some nerve showing them here… but I want to know what you think. 

So come on tell me – black, pink, or try again? 

Have to have some fun, right?