hysterectomy – Page 5 – beatingcowdens

Family Photo!

Published on July 22, 2012July 23, 2012 by beatingcowdensLeave a comment

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.

A breath of normalcy… shhhh…

Published on July 7, 2012 by beatingcowdensLeave a comment

There are lots of things that I like about Saturdays. First, my husband is home with us, and that makes any day better. I love the routines – wash the sheets and towels and dog beds, head to the bank, general clean up, and the race to see how fast it can all get done so the day can start.

Perhaps what I love the best about Saturdays is that they are almost always free of doctors. Unless we are sick or have some kind of emergency, Saturday is a doctor – free day. That means no appointments, no waiting in offices, no waiting for phone calls that don’t come (UGH!), no dealing with billing offices and in and out of network nightmares. NO DOCTORS!

Have I mentioned I love Saturday?

And today it was even better. Beyond “normal,” we had a surprise visit from 2 nephews, all grown up now – 18 and 23 – who spent this really HOT day, swimming with us, and just hanging around to chat, play Kinect, and even Uno.

We ate a delicious and healthy dinner. Grilled chicken on the barbecue, roasted potatoes, chick pea salad, and grilled zucchini from our garden! And, it was ALL prepared by my husband (who is incidentally a MUCH better cook than I will ever be!)

It gets better – if you can imagine. Today, for the first time since last summer, I put my new fake boobs, and my post hysterectomy body into a bathing suit – AND I SWAM! 🙂 And, it was ok. The suit fit. Everything stayed where it belonged. It looks like the hysterectomy has finally healed, and shhhhhhh…… even if it was just for today –

it was really nice to have a breath of normalcy in our lives!

Tennis anyone?

Published on July 5, 2012 by beatingcowdens2 Comments

I don’t play tennis. Never have. I am not that quick, athletic or coordinated. But I have always wondered what it is like to be the tennis ball. Back and forth, back and forth. No real purpose, no one stops to look at it. They just quickly replace it when it goes out of play.

I am starting to feel a bit like a tennis ball these days.

I have gone through more doctors for Meghan and I in the last 12 months than I care to count. They are either interested in helping, but too confused to figure it out, or, worse, they are too lazy to try to figure out anything to do with a syndrome they have never heard of.

I can teach them the basics – if they would listen. PTEN is a tumor suppressor gene. Ours is broken. We make tumors. Especially in certain spots. When things are weird, look for them. Regularly screen for them with the same tests you order all the time. Just screen more often and before we have symptoms. That will help us live.

I have journal articles. I have my reports, and Meghan’s too.

I was told last year to get myself an oncologist to manage my case. The one close to home lasted only a few months. Irreconcilable differences. Maybe he had wax in his ears.

So I took a break from looking. The double mastectomy, the breast cancer, the hysterectomy – they took some time. Now, as I am healing from the hysterectomy I get a referral from my gyn oncologist to a general oncologist she knows very well.

I called his office. I faxed 39 pages of my test results and history. They called to say I needed someone else – he wasn’t right for me. No, I insisted. Dr. B said he was the doctor I needed. I faxed him and article from the Journal of Clinical Cancer

Research, and the request that he please just look at me.

No.

I got a referral to an oncologist who specializes in genetics. She doesn’t take my insurance.

Back and forth, back and forth.

Tennis anyone?

Still waiting…

Published on July 3, 2012 by beatingcowdensLeave a comment

WARNING – This post may be uncharacteristically whiny and cranky. It is boring, and lacks any pictures or “fun stuff.” Maybe its the heat. Maybe its the start of menopause, or maybe, just MAYBE it’s the WAITING!

So, last year when we were first diagnosed with the Cowden’s Syndrome, the geneticist suggested my daughter and I each be followed regularly by an oncologist who would act as a ‘case manager’ of sorts. Seemed logical. We got Meghan set up with a doctor in NYC. She actually has experience treating “patients like us.” We thought we were golden. She ordered the initial scans for Meghan (and even for me) of the brain. She ordered Meghan’s thyroid sonogram, and her biopsy last November.

Well, that biopsy was a traumatic train wreck to say the least. To make it worse, when we spoke to the oncologist about it she was defensive of the doctor she had sent us to. We moved the biopsy slides to another hospital and she was obviously annoyed. She is still Meghan’s oncologist of record, but we haven’t seen her in months.

I tried an oncologist here at home. He listened, the first visit, and the second. On the second visit he suggested I look into having the remainder of my thyroid removed prophylactically. He gave me the name of a surgeon and told me to go ASAP. So, when I called to make an appointment with the surgeon and he wouldn’t see me, I called my oncologist back. He would not get on the phone with me, and would not call the doctor on my behalf. I was livid, but found myself an endocrine surgeon who (at least for now) advised against removing the rest of my thyroid.

When I called my oncologist back in late January to schedule my breast MRI. I was told it was too early. I reminded them that February marked 6 months since my last, and in fact it was right on time. They refused to authorize the MRI until late March. Well, we know how that turned out. When they called me with the authorization number I laughed at the irony of the whole thing, and told them I didn’t need another appointment.

So, there was the mastectomy in March. Great surgeons, great catch, great job.

There was the hysterectomy in May. Again, great surgeon. Job well done.

The surgeon in May recommended an oncologist in her practice for me. I called to make an appointment. I was told to fax my paperwork. I asked if they could just look in my chart. It is all shared between the doctors. No, please fax it. Ok – 39 pages later – and a huge fight with my fax machine… I got it.

They called today to tell me the oncologist thinks I should see a geneticist instead. Gee isn’t that ingenious? That is how I got diagnosed to begin with. Dope. They will look into it and call me back.

I am starting to feel like PTEN mutation is some sort of plague. What is WRONG with these people?

Which brings me back to my girl. In February the surgeon(who people travel the world to see) for her AVM said that her next surgery would need to be at Boston Children’s Hospital. They were not sure exactly when, but July was floated as a possibility. So we went last Thursday, the 28th of June for her MRI. After a grueling 2 hours, we left with a CD in hand, and the promise that the results would be at the NY surgeon’s office Monday.

I took the copy of the disk I had, put a cover letter on it, and sent it to the Boston surgeon we met in April, promising him a report would soon follow.

Monday I called the NY surgeon for the results. I was told the disk hadn’t arrived. They would call me. I called again this morning. I reminded the receptionist that I really was anxious about the results. It’s on his desk she told me. She also told me he leaves today for vacation till Monday. I asked her to be sure someone calls me today. I carried my cell phone ALL day.

It’s 10:04. I guess I will be waiting till Monday. Really? I know it could be worse. It could always be worse, but enough with the lack of compassion, the inability, and lack of desire to follow through. Enough with being scared of treating us because you don’t quite understand what we have. Enough WAITING!

“The Waiting Place…”

Published on July 2, 2012 by beatingcowdens2 Comments

“…You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting…” – Dr. Seuss

I ABSOLUTELY DESPISE THE WAITING PLACE!

There is more to the book. Lots more, but this is the part that keeps running through my mind, right now, at 1 AM, as I sit buried under a pile of papers. There is some combination of house bills, medical bills, medical errors that need to be corrected, and “this just has to wait because I can’t deal with it right now.”

I successfully organized a lot, and have a bag of shredding to prove it. This makes me happy. I like order. I strive on structure. I can sometimes be a little difficult to live with because in my house every toy, every item, has a “home.” Nothing is left laying around. I will confess to being a bit compulsive.

Why? People ask all the time. Why, with all you have been through, why after the breast cancer, the hysterectomy, Meghan’s surgeries, WHY does it matter if your floor is mopped and your counter is clean? All the time I hear – LET IT GO!

Well, the truth is – I can’t.

I need control. I need to control what I can control, which these past few months hasn’t been a whole heck of a lot. So, if having control over my clean floor and my clutter free desk makes me happy, people are going to have to go with that.

I have mentioned several times that my Mom always says, “You plan, God laughs.” Well we have joked that He has had a few good chuckles this year. While I feel INCREDIBLY blessed for the countless things that have gone well, sometimes the fact that Cowden’s Syndrome invaded our house and stripped me of the ability to plan, schedule, control, and order just about anything really gets under my skin.

After Meghan’s AVM surgery in February, we were told she was likely to need additional surgery in a few months. I did not sign her up for camp, WAITING. We had the MRI last Thursday. She spent 2 hours in the tube WAITING for them to take 5,000 images. I will call again tomorrow, but I will likely spend the week WAITING for the report, and the decision as the whether the next surgery is to happen now or later.

I signed her up for dance once a week, and swimming once a week, but we are WAITING on the MRI results to know if she will complete either of those classes.

Then, with the lack of a structured day she spends her time WAITING and hoping someone will come and swim with her. (That is when we are not WAITING at doctor’s appointments!) Her mother is WAITING for the lingering bleeding from the hysterectomy 7 weeks ago to stop before I head back into the pool.

I feel like these last few months have been full of WAITING. WAITING for surgery, WAITING to go home, WAITING for pathology, WAITING …

I have no control over any of this. I do believe GOD is in charge, and I am so comforted by that belief. It is my human frailty that keeps me searching for ownership and control where it is not mine to have.

I will WAIT. And I will do it as patiently as I can. Cowden’s Syndrome will be full of WAITING – forever it seems.

But, I will wait with a clean, organized house. I can not control this PTEN mutation, or the Cowden’s Syndrome that resulted, but I CAN certainly control the clean counters, and the dog fur… well, most of the time!

Towards the end of his book Dr. Seuss reminds me, and all of us…

“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU’LL MOVE MOUNTAINS!” – Dr. Seuss

The Perks of Breast Cancer and Implants!

Published on June 29, 2012 by beatingcowdens3 Comments

Come on, there had to be some benefits.

It’s going up to about 97 degrees today. And while I still can’t swim, thanks to some LINGERING hysterectomy healing… I had an “AHA!” moment as I got dressed today.

There are these adorable spaghetti strapped camisole tops. You know them, the ones that have the shelf bra that couldn’t hold a damn thing, so you keep wearing a bra under it, and then you wear another top over it to hide the straps, ending up hotter than you were to begin with? I see girls and women with them all the time. I have about 6 in my closet. All colors.

Today as I got dressed the thought occurred to me to try it without a bra. Just to see.

Well I’ll be damned. There is a benefit to fake size A boobs. I can hop, skip and jump. They don’t move. No bra required. No nipples makes for even less worry.

I will be much less sweaty than my friends today.

See – even cancer can have a bright side!

“I know…”

Published on June 15, 2012June 16, 2012 by beatingcowdens1 Comment

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…”

Bathing suits and other insecurities…

Published on June 11, 2012June 13, 2012 by beatingcowdens8 Comments

Some days I forget. I really do. Some days the thought that I had my boobs cut off and replaced with these round silicone implants doesn’t even cross my mind. Then, there are other days.

This morning I took a shower. Not a rare occurence, but maybe it was rare that I wasn’t late. That I had time to really look at things. So I looked in the mirror. First, at the small hysterectomy scars that are healing quite nicely. (While I still have ISSUES with whatever is provoking the NEVER – ENDING bleeding inside, the outside scars look great.)

Then, I looked up. Staring me right in the face were these perfectly round circles where my boobs used to be.

There is a scar across each one. No nipple on ether. There is also the most bizarre indentation under my arm on both sides. I looked at it for a while. Then I realized it was my ribs. It just looks weird. And wrong. There should be some kind of tissue there hiding my ribs. I am sure of it.

I took a few deep breaths. I reminded myself that I would have the luxury of drying my large head of curly hair – because the cancer that was hiding in the left boob was gone. For good. No treatments. No worry. Just have to get used to the new landscape.

I put on my bra. One of the new ones with the A cup. I tightened the straps. I wiggled this way and that. Still there were these huge gaps. Even the bra people don’t figure on what you are supposed to do to cover ribs where they shouldn’t be.

I did manage to get it together, and get out the door to work. I am sure no one noticed any of my insecurities as I went about my day, but they were there. Nagging me.

Since I am somewhat of a masochist, I decided today would be the day to try on the bathing suits. There were 6 in all in my drawer. Four of them literally fell off of me. One was full of “extra fabric” as my husband put it, and the other one – well that one wasn’t so bad at all. A relief I guess that when I get the OK from the hysterectomy surgeon, at least I have a suit to put on.

I went tonight to the mastectomy section of an online retailer to buy myself a real suit. I was so confused. Unsure of my own size, and which will cover enough, I settled on a (way too expensive for my taste) tankini. It should arrive in a few days. Maybe it will even fit.

Summer is coming, fast and furious. Whether I like it or not, the new body is making its debut.

Look out world – with a slightly flatter belly, and some perky new boobs – here comes the new me.

At least I don’t have to worry about my nipples sticking out at all the wrong times!

I am getting more ready – one day at a time!

It’s HOT in here!

Published on June 10, 2012 by beatingcowdensLeave a comment

Holy hot flash!

Wow… I though I was going to get away with this. Then, almost 4 weeks later, I am sitting here and there is this heat, creeping up from my toes. I swear my skin was crawling with fire. Up the legs and the back. As I went grabbing for something to get the hair off my neck and wiped the beads of sweat frantically forming on my brow.

Inhaling a bottle of water, I can’t help but hope that my body doesn’t make this a habit.

Really Cowden’s – I do HATE you.

Tonight I am even at a loss for words.

Collateral Damage

Published on June 8, 2012June 8, 2012 by beatingcowdens5 Comments

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.

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.