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I Am Blessed

Published on July 25, 2012 by beatingcowdens4 Comments

sharp stabbing pain — This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!

It is late. I should be asleep. Morning comes fast and it is already after midnight. I just can’t seem to find a way to unwind.

I just had a long chat with a ‘new” friend. That helped a lot. But still here I am, trying to get these racing thoughts out of my head before I rest.

I saw a new oncologist today. The geneticist insisted I have one to follow me and one for Meghan. Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious. (Ok, perhaps I exaggerate, but they weren’t anxious to see me.)

So the geneticist sent out an Email on Tuesday to some of his friends. By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today.

She is lovely. Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier. Now she gets to push me to the fun stuff. Next up- colonoscopy, and kidney MRI. So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI.

And all the while I will mourn a bit for the summer that wasn’t meant to be. This was more, a necessary doctor “catch up period.” I think by the end of August we will have at least 25 appointments done between us. And those are just the ones scheduled right now.

So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember. Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment.

So, we still get our trip to Disney, and there is always NEXT summer…

I spent the last hour preparing for Meghan’s oncologist visit on Friday. We haven’t seen this doctor for months. There have been a few things going on. So, I faxed her 32 pages of what we have been up to. She wanted to review it before the appointment.

I posted the cartoon because I had her binder out while I was preparing the fax. I laugh every time I read it because even after all these years it is still true. Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain. Every day. And not one of these doctors that we take her to can tell us why.

I thank GOD every day for her stamina, and her spirit and her spunk. She is my love, my reality check, my perspective, my reason for being. I feel displaced right now, from my church, my comfort zone – but not from God. Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare. God has us in the palm of His hand. We are blessed. And it WILL be OK!

Family Photo!

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

This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.

This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.

We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)

Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!

We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.

It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)

There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.

I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.

Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.

Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.

I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”

I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.

My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.

I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.

Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.

One that will remind us that we are defined by our spirits, and not by the sum of our parts.

We are family, and a pretty special one at that.

A 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.

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.

“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?

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!

The phone call continued….

Published on May 23, 2012May 23, 2012 by beatingcowdensLeave a comment

After I left off on the last post the “nice” man had the misfortune of coming back ont he line and reminding me AGAIN, that I had NO IDEA how difficult this was to work out.

I made him wait before he put me on hold again. “In the fall of last year my daughter and I were both diagnosed with a rare genetic disorder that no one seems to have ever even heard of. The few doctors who have, or who are willing to learn, have put us through every test imaginable. In March I had a mastectomy to protect me from breast cancer. I was pretty surprised to find I already had it. Last Wednesday I had a complete hysterectomy. I am 38. I was told the risk of NOT having one was too great. My 8 year old daughter has grown 7 cm in the last 5 months. She has grown 2 shoe sizes. She now stands 4 foot 9 and 73 pounds, and will not turn 9 until August. Her endocrinologist, the local one – not the cancer specialist she sees for the thyroid – has tried to educate herself about this syndrome. She examined my daughter and said it may be precoucious puberty, but it may be too early for that. Sometimes a tumor can hide and mimic puberty. I know a mom whose 8 year old has Cowden’s. She is 22 now, but at 8 had ovarian cancer. They had told her it was precocious puberty. We are at a doctor, for something, AT LEAST once a week, usually more. So, if you think I am crying because I am weak. Think again. I am crying because I don’t want to yell at you. I am crying because I am exhausted. But, if you tell me one more time “I don’t understand” how difficult this is, I WILL explode. You think it’s difficult to schedule. TRY LIVING IT! This is MY LIFE!”

Silence.

Still Silence.

Hello? Are you still there?

The “nice man” on the other side of the phone says simply, “Wow. I had no idea.”

“I know. But you do now.”

Yes. And I am going to make this happen as painlessly as possible. I will call you tonight. (HAHAHAHA I thought)

The phone rang at 5:30. The breast sonogram will be today, right after the pelvic. Someone from the breast imaging center will walk over to where we are to oversee. The results will be available to my doctor by Tuesday. It will be a long weekend, but we are used to that.

Maybe he is nice man after all.