Tag: mastectomy

“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.”

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)

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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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I Am Blessed

Published on by beatingcowdens4 Comments
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!

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.

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

Published on by beatingcowdens4 Comments

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.

TWO bathing suits to pick from!!!!!

Published on by beatingcowdens3 Comments
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?