Category: Daily struggles

Bookends

Published on by beatingcowdens1 Comment

So my little girl took some of the influence of her Dad and has taken a liking to comic books.  She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea.  I like Superheroes, and their “Good beats evil” message.  I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again.  And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends.  See, back in June, on the first day after school was out for the summer we went for an MRI of her knee.  It was a Thursday, the Thursday before July 4th.  So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends.  Our summer ends the way it began, waiting for test results.  Although I am starting to get the feeling that this testing and waiting will transcend all seasons.  I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago.  This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable.  When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point.  When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow.  My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it.  So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder.  That is what the MRI was today.  My fault.  I needed to have them rule out a pituitary tumor.  We have Cowden’s Syndrome.  We grow things.  Someone should check.  Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue.  He wants to see her the next time she has strep.  He shouldn’t have to wait too long.  He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically.  And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor.  We spent most of the summer at the doctor.  Scan this, check that.  It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff.  There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.)  There were some lazy days, and lots of just being together time.  We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad.  Cheated.  I stress at the thought of the scheduling complications being back at work brings.  Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough.  Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer.  Maybe I just love my girl too much.  Time marches on.  School next week ready or not!

My beautiful 9 year old!

“The Velveteen Rabbit”

Published on by beatingcowdens6 Comments
by Margery Williams

“Real isn’t how you are made,” said the Skin Horse.  “It’s a thing that happens to you….

…”It doesn’t happen all at once,” said the Skin Horse.  “You become.  It takes a long time.  That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept.”  Generally, by the time you are Real, most of your hair has been loved off. and your eyes drop out, and you get loose in the joints, and very shabby.  But all those things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand…”

I spoke to the oncologist today, about my MRI.  She had really no better or clearer information than the nurse I spoke to Friday.  The harmatomas are large.  There are several.  They might be able to stay, they might not.  She requested the sonogram from April to see if it is worth a comparison.  I will get the CD and the reports and send them along.  I will let the doctors again analyze the same few articles on Cowden’s Syndrome that exist.  I won’t tell them that I have likely read all of them myself too.  I will let them tell me if the spleen stays or goes.

I think it is that conversation, combined with the one I had with Meghan that brought the story of The Velveteen Rabbit to my mind tonight.  As we are buying clothes for school and trying to keep her quickly developing body comfortable and appropriate, she asks about my scars.  There are quite a few, the lipoma in my neck, the partial thyroidectomy, the C-Section, the hysterectomy, but she focuses on the mastectomy. and the scars from the reconstruction.  She asks sometimes to see them even as they are covered.  She asks if she will get to decide when to have that surgery.  “IF” I stress, “IF!”  You don’t know…  But she knows.  She is preparing already for the day it is her turn.  It twists my stomach in a knot.

We have had between us more than 25 surgeries, large and small.  We have scars of all sizes – inside and out.  But we are “Real.”  In a deep, important sense, we are “real” to each other.

I am in limbo… waiting.  But it is ok.  I live in a house where I have become “real.”  And, even on my darkest days, “…once you are Real you can’t be ugly, except to people who don’t understand.”

“It’s not fair!”

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“It’s NOT fair Daddy!”  Came the screech from the basement.  I held my breath. 

“You can’t do that Daddy!  It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!”  I knew all was well.  The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms.  She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me.  She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!”  And I would have understood.  I know very few people who have given up more blood than she has.  And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!”  But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell.  Nope.  “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week.  This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!”  Nothing.  Just the typical, “Can you stay, and will I need a needle?”  Followed by, “I hope I can watch a movie this time because I don’t like having my head done.”  How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring.  I have lost count of the appointments, and it is probably better.  They aren’t going anywhere and we will continue to have to roll with it.  As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old.  Wise beyond her years.  Content to live in this house where she is so loved and appreciated.  We have had many talks about the suffering of others through the years, and especially this year.  She knows she is not alone in having a tough path to travel.  She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure.  Maybe that is why she is so insanely mature.  Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

But God is good – all the time!

“I plan, God laughs.”

Published on by beatingcowdens1 Comment
I really should listen to my Mom…

My Mom says this… a lot.  And she is usually right.  I am a planner by nature.  Mom, although sometimes reluctant to admit it, is a planner too.  The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos.  At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much.  If you saw the legal size yellow pad on my desk you would chuckle.  I have appointments planned until February of 2013.  And, at first glance to list doesn’t look too bad.  I was proud.  I got to these appointments early.  They are all routine.  They will all happen after school or on vacation days.  My terms.  But then we get to the unscheduled ones… and the follow ups… and the new visits.  That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI.  The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour.  She said, “Everything is benign.”  I wasn’t sure to be relived, or panicked.  What “everything?”  So she started with telling me my liver is just fine.  (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.)  She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen.  Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?”  That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor.  I just wanted to reassure you there were no malignancies.  She may want you to come in.”

Which is where I did laugh out loud.  Come in – to hear a summary of what I was just told?  No thanks.  Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September  previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year.  There goes that planning again.  Maybe I will keep my spleen and its harmatomas forever.  Maybe they will make me have it out.  Truth is I have no idea.  And I can’t plan for it at all.

School starts in a week or so.  My life apparently doesn’t always jive with the school calendar.  I will have to roll with it.

More importantly, Pop’s birthday is tomorrow.  He is 93, and a true inspiration.  My family will gather at my house to celebrate him.  I couldn’t be more excited.

I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on.  It will all work itself out, as it has for… well forever.  I will try to keep the planning in check.  I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

The Carousel of Life

Published on by beatingcowdens1 Comment

How can you tell if it’s really progress?
When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.”  Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.

For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years.  Of course, with all progress, there are a few snags along the way.

The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.

 

 

 

 

 

 

And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old.  It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.

So why was this on my mind – aside from sorting out the Disney Photos?  Today was a doctor day  – again.

Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E.  People ask me all the time who he is, and why we see him.  Well, the truth is, he is kind of our “think outside the box” doctor.

We first met him in 2005.  Meghan was severely delayed in many areas.  Her behavior was at times scary, as she was having fits of rage that were tough to manage.  She was bloated, and her belly was in terrible shape.  She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.

Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner.  He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.

It was a scary commitment to see such a doctor.  There was no insurance at all, and the initial out of pocket fees were frightening.  But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it. 

It is 7 years later.  My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005.  We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication.  He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.

Progress.  At a cost.

Not just a financial cost, but an emotional one too.  And now we hit a crossroads again.  Progress is at a standstill in many ways.  (Not in the bright, articulate, funny girl, but in other ways people don’t see.)  The strep is returning to life on a regular basis.  Her development is not agreeing with her hormone tests.  Her belly bothers her, and she needs medicine to help her sleep.

I spoke with him at length today.  He wants me to see a very intelligent nutritionist in NJ for a very specific test.  It will uncover some of the “mysteries” we are missing, he says.  We are past the point where we can look at her and treat her.  She appears well, but there are too many things that don’t make sense.

What about the Cowden’s I ask?  What about the PTEN?  Isn’t that the cause?

To which he gives me the honest, “I don’t know.  There isn’t enough research.” 

But, he insists what he does know, is that we will gain a wealth of information from this test.

It is costly, and there is no guarantee the insurance will cover it.  But, she is worth it, and we will likely set it up.  The question is when?

School starts in a week and a half.  I have 2 appointments tomorrow, she has 2 Monday, and another Weds.  There comes a point where we have to stop running like this.

The Carousel in Ocean City, NJ

When I was a little girl we vacationed in Ocean City New Jersey.  I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings.  I liked to hold on – tightly.

Some things haven’t changed.

I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.

I find all these appointments all consuming, almost overwhelming.

Then I stop and think – it’s not about getting there, it’s about enjoying the ride.

Progress will come…

I got my “FAMILY PHOTO!”

Published on by beatingcowdens1 Comment

I was photo obsessed headed into this trip.  I was determined to get a family photo.  So, we headed to Downtown Disney in the 98 degree heat, and did our best in the Disney Photopass studio.  We had a great time.  He got some great shots.  Two family shots, and one of Meghan that are just fabulous.

I won’t be showing them here.  Well, the one of just Meghan may slip out, but not the others, sorry.  I chose one for my Christmas card.  And while I was at it, I sent it to Costco to be printed.  So, I can not even believe I am saying this, but I have 200 Christmas Cards in my basement August 20th.  Ridiculous confession of my OCD – YIKES.  Never in all my years have I done that.  But, there was the picture, all ready to go, and I figured it was the best way to keep me from showing too many people.

So, you will have to wait for that one.  Instead – I will show you some of the Family Photos that didn’t make the Christmas Card!

Fireworks in My Heart

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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!

Bra-less in Walt Disney World!

Published on by beatingcowdens2 Comments

I just returned from 9 days in sunny, HOT Florida with my family.  We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th.  I now officially have a 9 year old!

The trip was great, and I will have loads of things to share over the next few days, so bear with me.  But this is the thought I had to share first.

I spent 9 days in Florida and I didn’t wear a bra – not once.

Now I was never huge.  Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better.  So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.

She told me that just isn’t the way they do things anymore.  She said she wouldn’t have enough skin to maintain my existing size.  So I said, “OK, go smaller.”  Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.

I did.  You see my surgery was as much about my daughter as it was about me.  I knew that tissue expanders required fills.  I knew that that meant more trips to the doctor.  I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them.  I also knew I had to get home to my daughter and get about the business of recovering – quickly.  So, if that meant I had to go down to an A cup – so be it.  It supported the weight loss all the recent stress has brought.

After the surgery I wasn’t unhappy at all with the “new” girls.  Once healed I got used to them, and grew more confident.  So, when I went shopping for vacation I got a little daring.

All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones.  Then, I tried them on with no bra.  THAT was something I never dared to do before.  I jumped, I bounced. I checked.  Nothing moved.  And, since I lost my nipples to the surgery – nothing stuck out.

Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.

Best part of all, I am sure NO one had a clue.

After all that has gone on, if I don’t find the bright side, I will crack up.  So here it is, just for you – the shots of me Bra-less in Walt Disney World!

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

Published on by beatingcowdens1 Comment

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…

Published on by beatingcowdens2 Comments

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 Manhattan.  Meghan 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!