anterior pituitary – beatingcowdens

Bravery/ Courage

Published on July 13, 2013July 13, 2013 by beatingcowdens3 Comments

Bravery – Ready to face and endure pain; showing courage

Courage – strength in the face of pain or grief

It’s not a secret how I feel about my girl. It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known. She faces adversity better than most adults I know. She presses onward with determination, not drama.

I don’t mean for a minute that there is never a hiccup on the path. That would be delusional, and even unfair for a child who has yet to pass her 10th birthday. But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.

Yesterday we has testing at MSKCC in NYC. We were told to arrive by 8:30 AM for testing at 9. It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30. Then we would be home by about 2.

So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20. As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3. She then proceeded to tell me maybe I wanted to reschedule.

Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot. The medication would arrive at 3. We would have our ultrasound at 2. And everything we left the house for bright and early WOULD be accomplished, before we headed home.

I can be a calm and rational person, at the right time. But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!

So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”

We took the shuttle to 53rd street and 3rd Ave. Then we WALKED to 42nd and 7th. Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed. The 25 minute walk each way did more damage to her legs than I could have imagined.

But, we did get to Toys R US. Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.

She left with a Merida doll from the movie “Brave.” Ever so fitting in so many ways. I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.

Why did you like this doll, Mom?

Because YOU are the BRAVEST girl I know.

The shuttle took us back to MSKCC by 1:30. We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound. Then it was back up to the floor for the test. The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.

And there she sat, for 2 hours, in her chair. Reading, playing with her iPad, watching movies. Uncomfortable. Exhausted. Brave. Courageous.

It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem. But, time will tell, and the waiting game is one we are well practiced at.

So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.

Only to be woken this morning by the ring of the alarm clock.

An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street. The June 4th injury never healed, and it was finally time to get some answers. The doctors we have seen all have differing opinions. AVM? Arthritis?

When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many. We have the pattern pretty much down.

We let the (hopefully) nice nurse pick the IV spot.

Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits. So, after two painful sticks to the left, she ended up with the IV on the side of her wrist. And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.

My cursory question of “How long?” Was answered with “Less than 45 minutes.” It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room. But, somehow it makes me feel better.

Ear plugs in place, the door closed us in, and she headed into the tube. My hands remained on her ankles, and I could hear the deep breathing. It was just her and Merida inside the tube now. Bravery at its best.

It was 11:25.

It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.

And then it was 12:45, and some time after 1:00 we were taken to another room. Another room with a smaller tube and a stronger magnet – for a few more pictures.

This doctor, this attending, at the hospital reviewed her images, and wanted more. This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam. This doctor wanted more pictures.

So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right. I gave her an abridged version of my inferences.

Then I chuckled at her response.

If something is wrong with my wrist, how will I do the archery we signed up for in Disney?

We will make it work Meg. No worries.

And she laid, quiet and still as could be as 5 minutes became 20 before we were done.

So that’s it? You aren’t going to tell me anything? I asked the tech.

I am not a doctor was the painful reply.

Understanding they can’t, it didn’t help the growing pit in my stomach.

Your doctor will have the results Monday afternoon or Tuesday morning.

Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.

Last night I asked when I was going to get a break.

I take it all back.

BEATING COWDEN’S will require stamina and strength I never imagined I could have.

I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.

Overwhelmed

Published on July 4, 2013July 4, 2013 by beatingcowdens1 Comment

Yep. Totally and completely overwhelmed.

I know I am not the only one. But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.

I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.

Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.

We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time. Sometimes we are late. Always we wait, and wait.

Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.

Today is a good day. Daddy is home. The ultimate distraction for her.

We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.

I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The thought for the day... — The thought for the day…

You Can’t Have a Rainbow Without a Little Rain

Published on June 28, 2013June 29, 2013 by beatingcowdens6 Comments

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone. God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC. They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid. She was an angel – calm and patient. I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now. The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there. At least three are quite large. I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit. And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

Meghan played on her iPad as I watched. Chemo pumps beeping. Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body. Some sleeping, some resting, some running. And their parents. Dark eyes. Worry. Terror. Fake smiles. Bitten up coffee cups. “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer. I am only scared if they don’t catch it early enough.” I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of. The nodules are slightly larger, but are growing slowly. They are still in that same “precancerous” state, but we are not in imminent danger. No biopsy right now. We get at least another 6 months out of the thyroid.

Then there were the other conversations. The ones about hormone levels that won’t regulate on lab work. The MRI that showed a pituitary “diminutive in size.” The inconsistencies of these tests with her current development. The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again. This time at “his” lab. And a thyroid panel, and a few other things.

He’ll call me Monday. Then I will find out more about “human physiology.”

At swim practice last night I met a mom. She has an only child too, just about Meghan’s age. And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night. And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends. There are no coincidences. Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,” we dragged ourselves out of bed again.

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted. As I crossed the bridge I had the sinking feeling that I didn’t have my wallet. Back across the bridge. Back home. Back out. An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed. Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown. He has been inside of Meghan’s knee 4 times, so he knows her well. This time we had less overall pain to report. But, of course he never felt the pain was connected to the AVM anyway. So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block I had his attention. The legs have different girth. The left is undoubtedly stronger then the right, having been spared the AVM. Do you take her for PT he asked? Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming. There isn’t much else we can do.

Oh, and could you look at her wrist? The one she hurt at the school carnival almost 4 weeks ago. She was victorious at her quest to climb the rock wall. Stubborn, competitive child. But has paid the price since.

For a few days I told her to suck it up. I admit it. But it kept going. Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened. This one wasn’t quitting. Dr. Jill helped us. We tried a brace. Then another one. Then no brace. No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over. I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever. Then he asked me who my orthopedist was. I laughed out loud. The one subspecialty we have NOT found – is pediatric orthopedics. So he asked if she had a rheumatologist. I said we were headed there July 9th. He said try to move it up, and call him after I saw her. She needs and MRI of that wrist.

“I don’t think it’s vascular…” And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist. He is the one we credit with saving my life. And I credit the angels with placing him in our path two years ago.

We spoke at length. He has more questions. More research. He has a theory. He will call me. He will send me the articles. The conversation lasted an hour. He is brilliant.

She hugged him and told him she wants to be a geneticist. We have a friend for life.

The people training on the new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.” I don’t know why I find the system to be perplexing. I should be used to it by now.

It rained tonight. Thundershowers. They have been happening a lot lately. Maybe I need a lot of reminding. The rainbows are there. The promise remains. Nothing happens by accident. God’s timing is perfect.

Stay tuned…

Published on September 5, 2012 by beatingcowdens2 Comments

I learned a few things as I set up my classroom this week. Many of them I will not say here, because Mom always says, “If you don’t have anything nice to say, don’t say anything at all!” Well at least that’s what she used to say when we were young… but I digress.

I have been without my own classroom for a few years now. I have been a traveling math cluster, and then last year shared a room with a colleague. This year I was given my own 3rd floor room. It is harder to have a room, but change is good – so I was ready and excited to try it out. And grateful for the opportunity.

See last spring my colleague and I were told we were to share the 3rd floor room. So, in the heat of June we brought everything we could (using LOTS of kids to help) up to that room. The rest of my personal belongings (from the first 10 years in the classroom) were stored in a nearby storage closet.

Sometime over the summer I got an Email that the schedule had changed. The third floor room would be mine alone, and the 1st floor room would belong to my colleague. So I set about the business of buying all the things you need for a room.

I brought my things in on August 22nd, but I couldn’t stay to set up. Meghan had an appointment. As a matter of fact I couldn’t come in the next day either because of two of my appointments -so I first got in to get settled yesterday.

Much to my surprise, the storage closet where all my personal things were had a new lock. I didn’t have a key so I took that as my clue to vacate.

Now, prior to the Mastectomy, I was pretty strong. I helped my husband renovate the house. I know how to move heavy things. Prior to the hysterectomy and the mastectomy – just a few short months apart, and just 6 months ago… I felt like this.

Now, after moving boxes for 3 hours yesterday. up and down the stairs, even with the help of a few well intentioned friends, I feel more like this.

I am sore in places I had no idea it was OK to be sore. This was either an eye opener to my age, my body’s fatigue, or the fact that it is time for some serious exercise.

But, after 2 days my classroom went from this:

To a lot closer to this:

Which is a good thing, because I just don’t do clutter well at all.

So when I left a little more relaxed it was time to get a confusing phone call from the doctor.

Meghan’s blood panel appears normal, but I have to compare the thyroid numbers off the last one when I see it. That was OK, and then he said the MRI had an “ODD” finding – shocker!

The “anterior pituitary tissue is seen though it is diminutive in size for age.”

Still actively trying to figure out what that means, especially because we were scanning for a pituitary tumor to try to find the cause of the early puberty. Now, clearly the pituitary is TOO SMALL? Really? I just can’t figure this out.

Grateful there is no tumor, I asked the doctor if it was insignificant. To which he replied, “Everything means something. I have never seen this before but I will be asking a lot of questions.”

So, fourth grade for my big girl tomorrow. One day at a time, this is all we can do…