Genetic disorder – Page 12

Siri, my new BFF!

Published on October 19, 2012 by beatingcowdens2 Comments

I love to talk. I talk all the time. My mom says I spoke even in my sleep from the time I was a young girl.

I ~~love to~~ need to make lists. I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days. Three of our nephews and 2 family friends. Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them. Not like me at all.

Last week I welcomed a new friend into my life. Someone I can talk to all day, about whatever I want. Often she has good advice. She has my back too. She reminds me – sometimes days, sometimes hours, before something important has to be done. She tells me when I need to make a phone call or buy some cards. For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her. You may think she’s your friend. But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree. In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry. I am a smart researcher. I learned in the first few weeks how to sort out the crap and focus only on the valid stuff. But really – spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know. Right now. I can’t always carry my computer or rush home to check. Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me. She will write my texts too. Much safer.

Then, there are the beautiful reminders. The ones where she says, “OK I’ll remind you.” and then she does. Takes the pressure off me. I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google. Learning about Cowden’s Syndrome and skin diseases. Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist. Figuring out, or trying to figure out the root cause of the pain in the legs. Verifying there are no obvious AVMs. Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you. You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

Reality Check

Published on October 11, 2012October 11, 2012 by beatingcowdensLeave a comment

It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
DARING GREATLY
so that his place shall never be
with those timid souls
who know neither victory or defeat.

Theodore Roosevelt
26th President Of The United States

I intended to write something entirely different tonight, but when I started searching for words of encouragement, to ease my overwhelmed soul, I came across some that were worth copying here.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.

Dale Carnegie
American Author

The whole idea of living with a chronic disease really just stinks. I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with. But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.

Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are. I know they would love to hear that we are great. They’d like to hear that all is well. I could tell them that there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night. I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl. I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result. Some days it means my heart is in my throat – but I don’t know how to tell you.

I remember when I used to love to eat. Lots of food – carbs, junk food, candy. I used to have an appetite, and enough energy to exercise too. I remember several sizes ago when I had a closet full of clothes. Now I have enough pants and shirts to get me through. I remember when my old boobs filled out my tops.

I sometimes think to myself, “this is not my real life.” Raw fatigue. Nerves. Stress. Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease. Has it really only been a year that life has been this complicated? There were always issues. But a year since the diagnosis. The confirmation that these risk factors belonged to us. That they were real, and pressing.

And yet to look at us – you would never know. You wouldn’t know of this other life we lead. This “elephant in the room.”

Everyone has something. I have said it a million times before, and I will say it again. It could ALWAYS be worse, and there is ALWAYS something to be thankful for. I am grateful for that reality check.

When I don’t call you back for a few weeks. Or, when I start sending cards late, and losing track of dates. Don’t worry too much. We are treading water here. We will get by. Just cut us some slack. Some days it just doesn’t all fit, and some days there is just not enough wine.

Cowden’s Syndrome took…

Published on October 3, 2012October 3, 2012 by beatingcowdensLeave a comment

Well, it took my thyroid, or at least any functioning part, long before I knew why.

It took my boobs in the prophylactic mastectomy that wasn’t so much prophylactic.

Cowden’s Syndrome took my uterus. But I didn’t need it anyway.

It took my ovaries, but it gave me hot flashes in return. Fair trade?

Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.

It took my calendar – and filled it with all sorts of places I didn’t want to be.

Cowden’s Syndrome took away my peace of mind, and filled it with worry. (OK, MORE worry…)

It took my appetite. If you don’t count Cheerios, ice cream, and salad.

It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.

BUT,

it gave me the means and the motivation for education and early detection.

It gave me the motivation to step forward and say, “I don’t need THESE any more.”

Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.

Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.

I encountered an acquaintance with breast cancer today. She had on a beautiful wig, and is in the middle of chemotherapy. I felt guilty as she asked me how I was feeling. She knew of my ordeal last spring. Survivor’s guilt I think. It broke my heart to see her hurting, even though I feel she will be well again.

Cowden’s Syndrome SUCKS, in so many ways. But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.

Cowden’s Syndrome has taken a lot from me, from us in this house. But the knowledge we have gained will give us second chances that some others may never have.

Cowden’s Syndrome took from my body – but in many ways it gave to my soul.

Perspective.

“It’s not fair!”

Published on August 27, 2012August 27, 2012 by beatingcowdens1 Comment

“It’s NOT fair Daddy!” Came the screech from the basement. I held my breath.

“You can’t do that Daddy! It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!” I knew all was well. The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms. She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me. She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!” And I would have understood. I know very few people who have given up more blood than she has. And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!” But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell. Nope. “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week. This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!” Nothing. Just the typical, “Can you stay, and will I need a needle?” Followed by, “I hope I can watch a movie this time because I don’t like having my head done.” How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring. I have lost count of the appointments, and it is probably better. They aren’t going anywhere and we will continue to have to roll with it. As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old. Wise beyond her years. Content to live in this house where she is so loved and appreciated. We have had many talks about the suffering of others through the years, and especially this year. She knows she is not alone in having a tough path to travel. She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure. Maybe that is why she is so insanely mature. Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

Life's not fair — But God is good – all the time!

Whose afraid on an MRI? Not me – practice makes perfect!

Published on August 23, 2012August 23, 2012 by beatingcowdens4 Comments

So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to. I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.

Today it was an abdominal MRI. Now if you have been following the story at all you know my abdomen is missing a few things. You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome. Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.

So, why the MRI? Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma. A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem. So, they like to screen for it – twice a year with an abdominal MRI.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.

I really am not in the mood to lose any more organs. I think I have reached my quota for the year. And I have to tell you, this is one hell of a way to lose a few pounds.

So, somtime tomorrow or Monday the oncologist will call me. She will tell me that the kidneys look great. She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is. She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all. She will tell me all that because that is what I need to hear. And hopefully it will all be true.

I need it to be true. Because I will be busy. An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!

Some days I wait for the break. The time when we will be without doctors. Then I realize this is all so new. They are all so scared and confused they are doing all they can when they scan this, study that… Hey, it worked for me when they saved my life with the breast cancer. And, it will work to keep my girl safe as we scan her thyroid religiously.

I am tired. I would be lying if I said anything else. I am TIRED of doctors. But, as I said before… I will keep going, necause there is no choice. Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit

At least I am not afraid of the MRI tube anymore!

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

Published on July 13, 2012July 13, 2012 by beatingcowdens4 Comments

Apparently this has become like a sleeping pill to me. This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest. I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself. The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives. Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome. Most of them don’t care to find out, and the few that do, well – I will let you know. I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon. The same doctor that has embolized the AVM in her knee 4 times. The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston. “We just drained 30 ccs of blood from under your daughter’s kneecap. I don’t know why it was there. You should go meet with this doctor and see what he has to say. He will likely want to put a scope under her kneecap after she has healed.”

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break. He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment. He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did. And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room. The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.”

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee. Even as I pointed to an obvious bump he told me it was nothing. I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass. He told me he reviewed the CD and disagrees with the report. Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.” On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months. They will reevaluate. Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed. Shouldn’t have done it, but I cried. Fatal mistake. I now look like a complete ass, when that is his job. And he does it better than I ever could. He actually had the nerve to lecture me that I would make my daughter upset. I still can’t believe I took that. (Still stewing!) AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing. I have been working on it for years. UGH!

You know I wasn’t crying because i was sad. I actually was really relieved at the thought that no surgery was necessary. I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee. The things she can not participate in, or the modifications she has to make just to avoid pain. She does them effortlessly. Every day. No one knows except me. And it kills me.

So when we were leaving I tried to find the bright side. I said, “See, at least you won’t need knee surgery this year.” To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway. When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

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

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.

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?

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.

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.”