beatingcowdens

“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…”

“Every little thing gonna be all right…”

Published on June 14, 2012 by beatingcowdensLeave a comment

http://www.youtube.com/watch?v=mACqcZZwG0k

Bob Marley – “Three Little Birds”

“Don’t worry about a thing,
‘Cause every little thing gonna be all right.
singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, “This is my message to you-ou-ou:”

Singin’: “Don’t worry about a thing, worry about a thing, oh!
Every little thing gonna be all right. Don’t worry!”
Singin’: “Don’t worry about a thing” – I won’t worry!
“‘Cause every little thing gonna be all right.”

Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry about a thing, oh no!
‘Cause every little thing gonna be all right!

I can imagine sitting on the deck by the pool. Oh, wait – the surgeon hasn’t cleared me to swim. And, I still need a bathing suit.

The cute tankini I bought was vetoed by my husband who thinks it makes my boobs look fake. LMAO at the irony of that!

Well, at least I can imagine sitting on the deck with a strong cocktail in hand… working to convince myself that every little thing is gonna be all right.

My daughter’s much awaited appointment was today. The sonogram was at 1, and the doctor at 3:30.

The sonogram was thorough – took almost 45 minutes. The doctor reviewed the images, but could not give us a clear decision until he uploads the CD I brought with last September’s sonogram images for comparison.

For right now he said things looked good. There are MANY nodules, but most are smaller than one cm. He is content to keep watching every 6 months if he doesn’t find anything on comparison that warrants a closer look. Somewhere this has to be good news, although I am always afraid to get too relaxed, so I am waiting for the phone call.

What boggled me was how laid back he was about the puberty. He told me even though she won’t turn 9 until August and she has been developing a good 6 months, that it is not too early. He said to leave it alone. Apparently she and I are the only 2 concerned. I have been super upbeat about all the changes to her, but I can’t help it. In my belly it just feels WRONG.

Maybe I am just too used to worrying. And there are reasons for that. Its seems to be all we do. Sometimes good news gets to be harder to process because it comes so rarely. Sometimes it is almost odd to hear that things are “normal.”

So, we will wait for the phone call to confirm. Then we will table the thyroid issue till December.

Next up for my girl, MRI/MRA of her knee. June 28th.

For me, well, I need to find a dermatologist, someone to screen my kidneys, someone to follow the tumor on my spleen… oh, and I need a bathing suit. According to my dear husband, one that doesn’t make my (fake) boobs look fake.

And, a LARGE cocktail with a cute little umbrella, and some Bob Marley in the background…

Every little thing IS gonna be all right!

Ready or not!

Published on June 13, 2012 by beatingcowdens2 Comments

Time is a strange phenomenon.

It just doesn’t stop. There are days we would like it to go slower, and days we would like it to go MUCH faster.

There are days we would like to relive, and those we would gladly forget. But really, we have no control at all.

60 seconds in a minute

60 minutes in an hour

24 hours in a day

7 days in a week

52 weeks in a year

I find there are occasions when I would like time to hurry up. When I am waiting for my daughter to get out of surgery is the best example. Time can’t go fast enough. When I am waiting on pathology results, for any of us – it always seems like forever.

When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram. Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop.

As we sought out another opinion, and moved the slides to a much more reputable facility, an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s. He told us he had reviewed the slides and noted precancerous cells. He essentially told us our daughter would have thyroid cancer at some point, he just could not say when. So, he told us to return in 6 months, and we would check again.

I remember at the time thinking 6 months was an eternity. I wanted it to be faster. I wanted reassurance that she was well. He was insistent that 6 months was appropriate.

So we made the appointment for June 14th. Now June 14th is tomorrow. And I think I may need a little more time before I am ready. Things have changed. Now we have an 8 year old with a developing body, and labs that don’t match. Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit.

If we could slow things down… just a little?

15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.

I am trying to prepare myself for whatever he has to say. I have to hope for answers, for her sake.

Even if they aren’t the ones I want. Too many open questions. Too much time had passed.

Ready or not, here we come!

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.

Back to work, back to reality!

Published on June 6, 2012 by beatingcowdens1 Comment

Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.

Um, thanks… and OUCH!

I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.

I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.

He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.

I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.

Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.

You mean I have to teach too? Wasn’t getting here enough?

I made it through – thankfully my days were shortened so I could deal with other issues.

I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.

My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.

It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.

I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.

Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.

My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.

If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.

Forgive my whining…

Published on June 3, 2012June 3, 2012 by beatingcowdens4 Comments

… but no one else seems to want to listen.

I am tired. Not just the physical tired, but the mental and emotional tired too.

My body is exhausted. Tomorrow I head back to work. Two major surgeries in 3 months. I think my incisions might be healed, but I am just so wiped out.

This recovery from my hysterectomy has been nothing short of obnoxious. The bleeding seems to have subsided, and the pain is gone. The restrictions are still in place, but the hardest part has been feeling so damn alone.

Days go by, the phone doesn’t ring. Not a text message to check in. Not expecting fanfare here, but a little love from my friends and family would be nice. Now there are a few. There are always a few… but even with them, I am lonely.

That loneliness hasn’t helped me feel better. No. Not one bit. Combine that with the fact that my dear husband, who truly tries his best, is in school 2 nights a week, and has worked more overtime in the last 2 weeks than he has since December. He can’t say no. Not in this economy. And he so rarely gets called. Timing sucks.

So it has been me, and my girl. She is awesome. Yesterday when we realized Daddy definitely wouldn’t be home, and we were dangerously low on food, she came to the grocery store with me. She didn’t let me lift a thing. She packed the cart, packed the bags, and carried them right into the house. She is awesome. But, she is tired too. She is always willing to take care of me. But she is 8. A friend would make for a much better weekend.

So, today I took her with me to a meeting at my church. Remember a few weeks ago when I said, “I don’t have a problem with God…it’s His fan club…?” Well that is getting more true by the day. I can actually say I was disgusted by my minister, and a large portion of my church. The church where I have grown up for the last 38 years. Things are tenuous between the pastor and myself, I would say largely due to his LACK of support, but he did not even greet my daughter or myself at the meeting. She is so astute. I am trying to channel her energy away from anger, but she feels the hurt in me.

I know there is a plan here. One larger than me, larger than any of us. I do believe strongly in God and His guiding hand. I have been blessed with several miracles, and witnessed others. I know He is here, but I do not often understand His plan.

So, in the midst of all the chaos, the drama, and the confusion, I seek solace in music. I remind myself that these people who are so painfully absent – don’t mean to be hurtful. Those full of drama are lacking the bigger picture. I never lose touch with the reality that I am not the only life struggling. There are so many others, so much worse off. But for now, for right this minute, it doesn’t change the fact that I am sad, scared, and lonely. No one really wants to hear it, because they can’t fix it. But its true.

I have always believed everyone does the best they can with what they have where they are. So, even amidst my sadness, I do not have anger. People have their reasons.

Tomorrow I will go back to work. I will smile brightly as if I was without a care in the world. Even if my bones ache from exhaustion, and my heart aches to share this pain with those I love, I will smile. I will get through the days, one at a time. And I will always have a song in my heart to help me.

http://www.youtube.com/watch?v=skQQRhhZZQg

“He Said”
(feat. Chris August)

So your life feels like it don’t make sense
And you think to yourself, ‘I’m a good person’
So why do these things keep happening?
Why you gotta deal with them?You may be knocked down now
but don’t forget what He said, He saidI won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He saidWho you are ain’t what your going through
So don’t let it get the best of you
Cause God knows everything you need,
so you ain’t gotta worryYou may be knocked down now
but just believe what He said, He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said

Don’t fear when you go through the fire
Hang on when it’s down to the wire
Stand tall and remember what He said

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break…

I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said

Falling Stitches, and other Hysterectomy Recovery Issues

Published on June 1, 2012 by beatingcowdensLeave a comment

WARNING, some of this text may be a bit graphic, and might be better reserved for those recovering from a hysterectomy!

Enough with the bleeding already. That’s it. I am done. Over it. I had my hysterectomy 2 weeks and 2 days ago. I didn’t know headed in that I was headed for 4 to 6 weeks of bleeding. I thought this was supposed to make the bleeding STOP!

I guess if I had stopped long enough to think about it, I would have realized that the removal of a few things inside of me makes it necessary to stitch up a few other things, and as they heal it’s not unusual for them to bleed.

BUT, what is with the stitches? (No not that STITCH! You know what I mean!)

Stitched up Stitch (Photo credit: amesis)

Really it is easier to heal mentally from an external surgery than an internal one. At least from the mastectomy I could watch the wounds close. I could be sure I wasn’t doing too much. I watched the bruising fade. I knew I was getting better.

Now, just when I think this bleeding is letting up, (and it’s not all THAT heavy, but just REALLY annoying) a stitch falls out of me, I begin to cramp, and on go the faucets again.

The doctor said the stitches are coming out a bit too early, but apparently they don’t care, because they are coming fast and furious. Apparently my body seems to understand me when I say that stitches belong outside, not in.

What I want to know is why every time I think all is calm, there is this surge of blood. Enough to scare the heart out of me. Then, just like that it stops.

It seems to be taunting me. Daring me to switch to the lighter pad, but I won’t do it. Not yet.

I have cramps today. The kind I would equate with sore boobs, and a craving for chocolate while I wait for my period. Except, I don’t have any boobs – at least not ones that will be sore, and I won’t be getting my period ever again.

So what is with these cramps?

I am convinced stitches belong on the outside, where you can keep an eye on them. I told them my body doesn’t like dissolvable stitches. I guess I have to sit tight and wait while it cleans them out.

At least I am a professional at healing.

Healing well…

Published on May 31, 2012 by beatingcowdensLeave a comment

After she stopped laughing at my Tshirt,

“No, they’re not real (the real ones tried to kill me)”

the surgeon who two weeks ago did my hysterectomy did a wildly uncomfortable internal that brought back memories of the one when I was 41 weeks pregnant.

She then declared that I was, “healing well.”

I laughed and reminded her I am a “professional at recovering.” At least she has a sense of humor.

That is what we Cowden’s patients do, isn’t it? Surgery to surgery, procedure to procedure, happily enjoying the time in between. Knowing it will end. We recover. And we darn well better recover stronger and wiser and with our humor in tact – the alternatives are frightening.

She did tell me, because nothing should ever be quite “normal,” that she has never actually seen internal stitches come out so fast, and in pieces so large.

I told her in the hospital my body didn’t care for dissolvable stitches. She laughed at me then too. Come on, almost 20 surgeries later – I know my body.

So, it’s essential that I don’t lift anything over 10 pounds for at least another 3 weeks. I need to avoid bending any more than necessary. No swimming. No pushing. No pulling.

When I left the hospital they told me I could drive in 2 weeks. I lasted 6 days. I am an overachiever. I also asked them when the chauffeur was coming to drop off, pick up, and all that other stuff.

Now, since I know the stitches are loose too early I will try to be good. But really, when are they sending the housekeeper, preferably one who cooks allergy safe meals? My husband is working all day Saturday and Sunday. There is a bit of an echo, or occasionally an attitude when I ask for help.

So, my girl and I will make it through. Ticking the time away until her appointment June 14th. This time its my turn and she is awesome. Next time it will be her turn to be “healing well.”

Dear God, please remind me to ALWAYS be there for her, and support her, her whole life, no matter how tired or busy I may be. AMEN