Cowden’s – Page 30 – beatingcowdens

Summer vacation begins…eventually!

Published on June 28, 2012 by beatingcowdensLeave a comment

Summer Vacation began today. Yesterday was the last day of school for Meghan and I until early September.

I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two. Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom… But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck.

Meghan’s report card was beautiful. She makes us so proud. We talked all about the end of third grade and the beginning of fourth. We ordered a new backpack (Have to order early if you want that special GREEN!)

Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.”

So this morning I got up at regular time. I watered the vegetables in our garden which is growing so beautifully this year. I made sure Meghan was dressed, and the dogs were crated. And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.

We made it to NYC in time for my surgical follow-up. I have officially had all restrictions lifted, although the chronic bleeding continues! I was told not to worry, and it should be gone in another 4 weeks. Delightful.

Then, we walked a few blocks to the knee MRI. She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05. unbelievable. They told me they had 5,000 images. I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch. I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail. Some time next week he will call to tell us if the date for surgery will be sooner… or later.

We made it to a friend’s pool for a few fun hours, to try to salvage the day. She went to bed exhausted, and soon I will too. I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days. More time with the kid, the pool, and the tomato plants.

Come on summer… be good to us. We need you!

Cowden’s Syndrome – The Elephant in the room

Published on June 23, 2012June 26, 2012 by beatingcowdens4 Comments

“Elephant in the room” is an English metaphorical idiomfor an obvious truth that is being ignored or goes unaddressed. The idiomatic expression also applies to an obvious problem or risk no one wants to discuss.- Wikipedia

Cowden’s Syndrome is the “Elephant in the room.” It is always there. It is never going away. Yet, most people – even immediate family- don’t want to discuss it because it makes them worried or uncomfortable. They would prefer to justify to themselves that your constant worry, and never-ending list of appointments are nothing more than paranoia and nonsense.

The “elephant” made its way into our house last fall. It’s not leaving. So we are working on respecting it, and treating it as the oversized house guest it is. Feed it too much and it will become more overpowering in its sheer volume. Ignore it and forget about it, and well… a hungry elephant can do some damage.

What brought me to all this metaphorical thinking today? It is likely to sound quite silly, but it was an earache.

Now, granted it was not an ordinary earache, the whole side of my head hurt, and still does. But the point is prior to my diagnosis, prior to my knowledge of Cowden’s Syndrome, it would have been “just an earache.”

Instead, I woke this morning in terrible pain. I was dizzy and uncomfortable. I immediately started remembering all the times I was dizzy or out of sorts this week. I have no fever, no cold, no signs of infection, no real reason for this pain. Yet, it was bad enough for me to drive to the Urgent Care center at 9 on a Saturday morning.

I waited for the doctor nervously. I recounted my symptoms to him. Here they know nothing of Cowden’s or chronic issues – they simply treat what they see. So, he looked in my ear and said, “It’s not red, there is no swelling, and no sign of infection.”

My heart sank.

That should have been very good news. He was sending me with a script for ear drops “just in case,” but not to worry – “there is no problem.”

No problem except, my ear feels like it is going to explode, the whole side of my head is sore, and all I can think about is “What if there is a tumor in there?”

This is not a rational response to an earache. I know it isn’t. I am also pretty sure there is no tumor anywhere near my ear. But, this is how Cowden’s Syndrome can change your perception of reality, heighten your anxiety, and keep your worries hopping.

If the doctor had told me I had an ear infection I would have been thrilled. Instead I have unexplained ear pain, dizziness, and worry.

I am sure it will get better in a few days. That’s what I keep telling myself. But what if it doesn’t?

Cowden’s Syndrome – the elephant in the room.

6 Months…

Published on June 21, 2012 by beatingcowdensLeave a comment

June 18, 2012

As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.

It was the endocrinologist we had seen the Thursday prior about the thyroid. It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it. This is how life will always be. Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life. So somehow, we need to find a way for them to get along, and exist – simultaneously.

The thyroid sonogram had been done on the 14th. When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months. He told me he would call me after he compared her November 2011 sonogram CD to the new one.

So I stopped in the hallway at my school. Tears were still streaming down my face as I composed myself enough to talk to the doctor.

He reviewed the older images and compared them. There are a lot more nodules, he didn’t even give me a number, and most of them are very small. However, there is one a bit bigger than all the others. He would like to keep an eye on that one.

Instead of a sonogram in a year, we got bumped back to 6 months. Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments. Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…

So, the last time we were there they told us to prepare. She will have thyroid cancer I was told. Until then, they will just watch. December 27th it is then.

Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer. At least not today.

So, I closed the phone and dried my eyes. One day the thyroid will turn, but it’s not today. Not now. At least we can have the week to bury Grandpa in peace.

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.

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

Me 2 – Cowden’s – 0

Published on May 23, 2012 by beatingcowdens1 Comment

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

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

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

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

Can I have a copy? I asked.

Well, aren’t you coming in next week?

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

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

Sigh.

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

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

Two less areas to screen compulsively. I really win.

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

And I will.

Recovery and Body Image

Published on May 21, 2012May 21, 2012 by beatingcowdens1 Comment

My husband says I need to be more confident about my body. He tells me that I am beautiful. I am lucky I know, because he really feels that way. He doesn’t understand my uncertainty at all.

I have always struggled with body image. I have always exercised, and eaten fairly well. There have been times of high weight, but my 5 foot 8 inch frame has always held it well. The last few months have been a bit of a roller coaster though.

Anxiety medication worked to keep the heart palpiations and the panic attacks under control, but it couldn’t give me back my appetite. I was down 30 pounds before the mastectomy. Now, 11 weeks later there are days when I forget. I forget the breast cancer that hid from the tests, the mastectomy that was supposed to be prophylactic, and the silicone that now lives under my numb skin. I forget – until I look. Then I see the huge scars, and the slightly uneven implants – not a surgeon’s error, but rather the error of 7 biopsies slowly removing the skin on one side over 14 years time and my refusal to endure tissue expanders and all their extra risks. I see… I feel…

Now I am home recovering from the complete hysterectomy. Another huge cancer risk removed from my list, but as I await the final pathology the reality that all my “girl” parts are gone – sometimes hits home, and it ouches a bit. What will instant menopause be like? I am not even 40, but I am sure I will know soon enough… Will my thyroid go totally nuts -again? Will I gain back every pound I lost? What will happen to my metabolism, my body?

And what about all these screenings still to do? There is already a harmatoma on my spleen, and a huge gallstone. That is before we have checked the skin, the kidneys, the colon.

I have to focus. I am not Cowden’s Syndrome. I am only a patient who suffers from it. I am still me. Neurotic, loving, caring – me. I will not let this disease define me, or my family. If I do that, it wins.

So maybe today I will look in the mirror. I will try to see the me that my husband sees. I will continue to recover, again. I will think about tomorrow when the sun will shine. I will emerge from this – better, stronger, more confident, and more beautiful. If I let it happen. I am not defined by the sum of my parts or by any disease. I am defined by my soul….

Danger.com – Post Op on the internet

Published on May 17, 2012 by beatingcowdens1 Comment

I am seriously starting to think that should be a website. One that reminds you when you have a rare disease its just dumb and dangerous to blindly internet search anything.

So yesterday was my hysterectomy. Ten and a half weeks after my double mastectomy. Two four hour surgeries. My body has had it.

I had talked to my surgeon about going home yesterday. She said it would be fine if I tolerated the surgery well. I was set to go home.

Instead I have a bruise on my arm from the epinepherine shot. Not even sure if I spelled that right, but you get the point. And, the reminder ringing in my ears that “If you try to move – we are going to need a crash cart.”

I have always had low blood pressure. It is not unusual for me to run 85 over 60. No doctor has ever been alarmed. I am used to the quizzical stares, and I take a minute beefore moving when I stand.

But yesterday, after four hours under anesthesia, and after not eating for about 18 hours, my body was a bit testy. Maybe it was trying to tell me I should slow down on the organ removal. But recovery wasn’t going well. I didn’t feel right. I had a terrible headache, and all of these bells kept sounding.

I wanted to use the bathroom. I needed to go. I tried to get up and the nurse said,” not yet.” We went through this a few times. She brought me a bedpan. I laughed to myself. There was no way I could make that happen. I thought of my daughter and the times we tried to make her use one. We are a lot alike she and I.

So it was getting ridiculous. I sat up. That was when they all freaked out. Apparently 74 over 33 is dangerously low. Up went the feet, down went the head, and over was any chance of getting home. Somehwere in the middle of all this they inserted a catheter right there in recovery. Even that brought no relief. My poor bladder wanted to pee.

My anxiety was through the roof. The tears were flowing. I was just beside myself. Hours later – after 8PM from an 11 AM surgery, they brought me to a room – where I lay awake all night. No food… and no mobility. Catheter and IV – UGH!

At 5 Am when they unhooked BOTH the catheter and the IV I sat up. I peed. I walked. All was right with the world.

Then I got home. I started wondering about low blood pressure. What causes those kinds of drops? Kidney issues – (what is the incidence of renal cell carcinoma in Cowden’s patients – almost 30% I think) or endocrine problems – thyroid (HUGE cancer risk – part of mine still sits in my neck like its own ticking time bomb) or heart problems (what the hell, that’s not even on the Cowden’s list!) No more problems. No more doctors. Really… I think I either need stronger medication for the anxiety, or a slower search engine.

On the upside – my uterus, having served its one useful purpose – sits in a pile of medical waste alongside my ovaries somewhere. Huge risks – gone. Its a tough battle, but I am on the winning end right now.

I wonder how many organs you can have removed before you thoroughly traumatize the body? Maybe I should look that up… tomorrow.