Cowden’s Syndrome – Page 42

Not a doctor, but I play one… in real life!

Published on July 8, 2012 by beatingcowdensLeave a comment

Tuesday when the doctor didn’t call me with the MRI results, I was really irritated. Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report. While regulations prevent them from faxing it, they did put it in the mail. I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.

Now, if you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent. It’s not perfect, nor am I fluent, but I can manage to get the idea. (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)

So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)

Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend. So, I will give it a go.

The first thing I notice is that the reports are similar to each other. Since they took place 6 months apart I first rationalize this must be a good thing. There was not any significant growth of the AVM over 6 months. Then I realize she had surgery in February to shrink the AVM. There is NO significant change at all in the size of the AVM.

Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass” Now I know that’s the AVM, but I had to take out a tape measure to picture the size. Then I figured out the other words were obviously location, so I went searching for some pictures. I took this one-off the www.aafp.org website.

I took a long hard look at this picture and then a long hard look at my child’s knee. I think it hit me for the first time when I did that.

I mean, I have always known her to be in pain, a pain I belive to be very real and very intense. But she has often said to doctors, and to me, that her knee is “swollen.” That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.

But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it.

So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain. Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain. I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8. It has to feel AWFULLY strange to have something IN there.

The question is – what do you do about it? When I ask Meghan to straighten out her right knee, she can’t. She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her. Her range of motion is clearly restricted.

There are still “tiny feeding vessels arising from the distal superficial femoral artery. (Picture from http://www.orthopaedia.com/display/Main/Femoral+artery

Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out. When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee.

For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.

So, now what?

I guess I am no better off than I was if I didn’t have the report. Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not. I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants. Maybe it is OK, and we will just watch it – every 6 months like the thyroid. Maybe it has to come out.

I guess I will find out tomorrow.

But, for Meghan it doesn’t really change her reality. She will have pain and restrictions with or without the surgery. This thing can easily come back – even if they get it all. So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.

It is amazing to me how infrequently she complains – about anything. She is my hero.

EVERYONE has SOMETHING!

Published on July 4, 2012July 5, 2012 by beatingcowdens1 Comment

Meghan and I have a lot of “deep” conversations. More than you might expect an 8 (almost 9) year old to be capable of.

Today she was wondering why we have to have Cowden’s Syndrome. Why is our PTEN gene broken?

Well, I said to her, everyone has something to deal with – and this is what we’ve got.

She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”

“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”

I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”

Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”

“Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”

It doesn’t take much for her to “get it.” That’s why I love her so much.

“There are kids without dogs,” she said. “Lots of them. And I really love Allie and Lucky.

There are kids without their own room, or even their own house.

There are kids whose Moms and Dads don’t love each other.

Some kids have other diseases where they have to go to the hospital even more than me.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

Some kids don’t get to know their grandparents or their great- grandparents, like I do.

I get it Mom, I think I do. But, still it seems like some people have no worries, no problems at all.”

“Those are the people I worry most about Meghan. Those are usually the people whose hearts hurt. They are often alone, or insecure, or feeling unloved. Trust me, EVERYONE has something.”

“I guess you were right Mom. I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”

“I am glad – me either. Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on. We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life.

We are all struggling, and we are all lucky.”

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!

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!

A story of two Meghans…

Published on June 25, 2012June 25, 2012 by beatingcowdensLeave a comment

The cutie in this picture is my cousin Meghan. She was born in 1985 when I was just in the 6th grade. She was the first child I ever babysat for. She was my buddy.

She was diagnosed with Leukemia around her second birthday.

Remissions and relapses, bone marrow transplants and chemotherapy followed the next 4 years, but a cure was not to be.

She passed away in 1991 on my 18th birthday. She shaped my life in every way imaginable. I am a better person because I knew her. I developed perspective at an early age because I knew the pain of having loved, and lost someone so young.

She is our guardian angel – ever-present in our lives.

My daughter Meghan was born in 2003. I asked my aunt and uncle for permission to use the name. They were pleased, but not surprised. Meghan was a huge part of my life, and I wanted my daughter to know her name was carefully chosen, and she was named for one of the strongest little people I ever knew.

My daughter knows all about “Angel Meghan,” and how she watches over us. She knows all about childhood cancer and its gold ribbons. She happily worked to raise money for a school project this year, for a “great” cause. She knows cancer took young Meghan’s life.

She also knows her Mom and her Grandma had cancer, and they are doing just fine. She knows the battles can be won, but they seem to be all around us.

What she doesn’t know, is where she fits in. She lives a life where at a young age, cancer and its risks have become a real part of her life.

She knows she fights every day, to get through her own life with a rare genetic disorder.

What I find interesting is she is seeking a symbol. She wants something to wear to show the world what she is contending with. She was able to express it to me, and while I was amazed, it made sense.

My husband bought me a Pandora necklace with pink ribbons after the cancer diagnosis. I have a bracelet I wear. They give me strength, as silly as it may sound. A sense of focus. A reason to stay on top of things.

She needs something. And it isn’t easy to find. It’s not a blue ribbon, but a denim one representing genetic disorders. I think I will have something made. Anything to help her find her identity.

She is special. She is named for someone special. She is unique. She is smart. She is funny. She is friendly, and wise. She is a lot like my cousin who came years before her. She is tenacious and strong-willed. She is finding her identity. She is growing up. She knows Cowden’s Syndrome will never define her, but she wants to feel empowered. I can’t blame her.

Two special Meghans.

One shaped my heart as a young girl.

The other daily inspires me to be a better human.

I am truly blessed.

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.

“Sapphire”

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

Grandpa, …, passed away on Monday, June 18, 2012. . Born in …Grandpa lived in … for many years before moving to …7 years ago. He worked as a lineman and foreman for PSE&G for many years prior to his retirement. He was a proud veteran of the U.S. Army during WWII and the Korean War and lifetime member of the American Legion. Beloved husband of 60 years to Grandma. Devoted father to…and his wife … and … and his wife …. Cherished grandfather to 6 grandchildren and 3 great-grandchildren. He was also survived by many loving nieces,nephews and friends.

***************************************************************************

The above is a snapshot of my Grandfather’s obituary. I removed the names and locations, because really – they don’t matter. He was a kind and gentle man, loved by everyone. Classy, and wise – funny, and easy to talk to.

My daughter proved to me again this week, that although we have Cowden’s Syndrome, it does not have us. It does not define who we are.

She is 8, turning 9 in a few short months. This was her first funeral. She went to the funeral parlor with me, alone. And then to the funeral with our family. She acted as one of the honorary pallbearers. She cried, she smiled, she focused, she hugged all the right people at all the right times. She got through the service, and hours into lunch before we handed over her Itouch – she never even asked.

My Grandfather called her “Sapphire.” He knew she was special. He made sure she had a sapphire necklace. Her eyes lit up whenever they were together. He will be sorely missed by all of us.

De :fr:Image:SaphirSynthetique.jpg Categoría:M... — De :fr:Image:SaphirSynthetique.jpg Categoría:Minería (imagen) (Photo credit: Wikipedia)

Once again – I am reminded of how precious life is. And once again, I am humbled and proud to be her mother.

–>

“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…”

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?