Collateral Damage

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

 

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack.  This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant. 

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless.  The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

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“The Six Month Leash”

The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.

6_months

On Wednesday  I got word that I can keep my spleen for at least 6 more months.

On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign.  We return for another scan in 6 months.

There is 6 months in between visits to the vascular surgeon.  6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too.   There are more, so many more, but you get the idea.

See you in 6 months.  So we can do it all again.

I am trying to slow down.  Instead of waiting for the next appointment, I am trying to enjoy today.  I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.

stpwatch

Truth is if I don’t pull the battery out of that thing, I may lose my mind!

It’s not all neat and clean, this whole Cowden’s mess.  Although when I stop to think about it, it is readily apparent that life is far from neat and clean.

Reality is that life is complicated.

Life carries with it no guarantees.

Life is what you make of it.

The struggle for everyone is different.  Mine is a struggle with my mind.

Beating Cowden’s is not like training for a sprint.  Nope.  We are training for a hilly marathon in the snow.  We have to build the endurance – and find a way to enjoy the training.  Even the really painful ones.

See, if it was just me suffering – it would be easier.  But it’s not.  And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?”  Well, that was downright exhausting,  I am NOT looking forward to doing it again, in 6 months, or ever.  But, reality tells me there will be more biopsies on the horizon.

So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.

positive attitude

Well, that isn’t actually the goal.  The goal is for me to shelf the worry altogether… but baby steps please.

Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously.   I fell on Saturday.  Over the dog.  She was on the sheets on the basement floor that were waiting to be washed.  I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.

My calendar tells me we have about 5 weeks until the next major doctor cycle.  Good thing.  I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.

The 6 month thing… well that’s not just twice a year.  That would be neat and clean.  No, the 6 month thing seems to just be ongoing.  We try to make the breaks as long as possible.  You know, so in between we can deal with the new adventures life tosses our way.

changes - adapt

I am going to focus, and keep trying to get this one day at a time thing down.  I am going to stop and look around more.  I am going to try to enjoy the ride.  It won’t be easy.  But I am on it.  I promise.

I need a new pair of sneakers for this marathon training.

Who knows, I might just get back in shape yet!

you were given this life

BENIGN!!!

I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.

I spoke to the nurse this morning.  She said the pathology was BENIGN!  I don’t think I heard much else she said, as the tears just started flowing.

We are not, nor will we ever be “out of the woods.’  They will scan her thyroid every six months indefinitely.  But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.

Right now she does NOT have thyroid cancer.

Right now she does NOT need the thyroid removed.

Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.

So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.

It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

Collateral Damage

Collateral Damage (film)
Collateral Damage (film) (Photo credit: Wikipedia)

Collateral damage occurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

 

I don’t think it’s far-fetched to equate Cowden’s Syndrome to a war.

Our bodies are under attack.  This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant. 

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless.  The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is also the  battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.

This is a war my daughter and I are fighting together.  Each on our own road, but we are battling the same enemy.

Like in every war it is inevitable that there is collateral damage.

Haughton play park 20070602
Haughton play park 20070602 (Photo credit: Wikipedia)

  Today was the 3rd grade play at my daughter’s school.  It was also “Family Fun Day,”  where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.

It was about 82 and sunny here today.  The weather hasn’t been this perfect in weeks.

And I, I was at work.  My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.

How is this all connected?  Very easy.

If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.

Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.

I got permission to go in an hour late.  I got in to see the dress rehearsal of the show.  I stole 10 minutes on my lunch to drive by the park.  And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.

She is such a good girl.  “Don’t worry Mommy, I understand.  I am so glad you are feeling better, and I know you need to get back to work.  Maybe next year we will all have less surgeries, and then you can come?”

Collateral damage – my girl having to grow up so damned fast.

I really do hate this disease.

Me 2 – Cowden’s – 0

The surgeon called.  Two days earlier than I expected.  My heart flipped a little when she said, “I have your pathology.”

“Everything looks great.  It was all totally benign.”

Big Sigh…   Thank you God.  No more cancer.  No more surprises.

For a moment there was doubt.  Was I too rash?  Should I have waited? Then, reality.  They told me there would have to be a surgical uterine biopsy every three months.  The scar tissue was already extensive.  One ovary was twice the size of the other.  There were cysts everywhere. General anesthesia is getting harder for my body each time.  Who has time for surgery every three months?  The worrying. The waiting for when it will hit.  No… I was right.  This was necessary.

Can I have a copy? I asked.

Well, aren’t you coming in next week?

Yep,but I need to see it.  I need to hold it in my hands.

The beep of my fax confirmed receipt of two pages.  Totally benign pathology.

Sigh.

Breast Cancer 85% lifetime risk. Got it, but got them off in time. I win.

Uterine cancer 28% lifetime risk (or something close.)  I win.

Two less areas to screen compulsively.  I really win.

Watch out Cowden’s.  I am up 2 nothing.  People say I am not that competitive, but when it’s important I play to win.

And I will.