Costco – beatingcowdens

Moving at our OWN pace

Published on July 10, 2013 by beatingcowdensLeave a comment

Two weeks ago today we left for the last day of school. Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do. Our first mandatory stop is swim practice at 5:30 PM. So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

This morning I woke when my body told me it was time – somewhere around 8:15. What a blessing to open your eyes because you are ready.

I tended to the garden. I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini. I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea! — Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift. I understand its not “the norm,” and I AM grateful. But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

The rhuematologist confirmed that the Celebrex is necessary. On the up side she said, at least the liver seems to be handling it well. Yep, on the up side I need to worry about my almost 10 year-old’s liver? So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex. Take her off. Leave her on.

I love them all, but ultimately the pain decides for us. This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees. Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it. And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones. Did I miss my calling somewhere along the line? Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left. A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better. Not really at all. So she said, definitely get an MRI.

We are on it. 11AM Saturday. We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP. She expects they will find something. I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk. Better since the shredding is over. I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up. I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile. I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip. Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2. Obviously I still have a little more work to do down here.

Monday I went for my MRI. The one that checks my spleen. Next Tuesday I have the appointment to find out if I can keep it. Already covered the endocrine surgeon, the gyn oncologist, the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits. It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world. It will be a long week – again. So for today, I will try to slow it down. The sun is shining. It’s July. And we don’t have to go to work OR the doctor today!

Saturday Adventures

Published on May 25, 2013May 25, 2013 by beatingcowdens1 Comment

I have this delusion in my head of what a Saturday should be. I think sometimes about getting up – not at the crack of dawn, but at a reasonable hour. Getting a quick breakfast and jumping in the car to head… well wherever we want to go. I think about spending Saturday as a family. Worry free. Relaxing together. Sharing an adventure.

Then there is reality. It has a way of biting you in the behind when you aren’t paying attention. (Or when you are practicing active ignoring.)

Reality is that we have two working parents in this house. That same reality that allows us to pay for the medical bills that creep up, and the fun stuff like vacations, is the same reality that means Saturday afternoon adventures are uncommon. Well, almost unheard of anyway.

I have a grocery shopping routine – down almost to a science. About every 3 weeks on Friday night, I go on the marathon. I stop at Costco, and run home with what we need. Then I head to Wegmans in Woodbridge, and Whole Foods in Millburn. The whole journey is about 40 or so miles, and it takes about 6 hours from door to door. Then there is the unpacking…

Why?

Well food sensitivities have kept Meghan gluten, dairy, and soy free since she was about a year old. She is also very sensitive to dyes, preservatives, nitrites, food coloring, and the like. Her diet is pretty much pure and organic.

Local shopping is not as plentiful as that over the bridge, and prices are flat out better there. So, last night as we undid the (ridiculous amount of money) worth of groceries, and I put a soup in the crock pot for today, I was about to fall over from fatigue.

The piles of laundry already covered the basement floor. The beds would need to be stripped in the morning. The bathroom was in dire need of a cleaning after my husband repaired a pipe that burst under the bathroom sink. I thought about shutting down the alarm and just letting my body do the talking this morning. I thought about it for about 3 minutes.

Then I took a flashlight into Meghan’s room. I covered her eyes and looked at the sores on the right cheek of her sleeping face. My heart sank. I turned the alarm on. I knew where we had to be in the morning.

In addition to having Cowden’s Syndrome, Meghan suffers with an immune deficiency. Well, technically speaking probably more than one. She is IgG subclass 1 deficient. Her body doesn’t seem to remember how to fight infections. She is also Mannose Binding Lectin deficient – a whole other element of the immune system – just absent.

Usually she holds her own. She takes a HOST of vitamin and mineral supplements. She eats that pure and largely organic diet I spoke about, and aside from seemingly chronic fatigue, she does OK most of the time. She can’t be running around too long or too often. She can not be over stressed. These things wear her out, and then we have trouble.

When she was just 6 months old she was first hospitalized with an infection of Herpes Simplex 1 (fever blister) on her right cheek. It was odd the location it started. It was in the middle of her face. Before we knew what it was it had become cellultis, and we spent a week in the hospital. The first 2 days were the scariest as the blister kept increasing in size. Eventually my pediatrician at the time called in an infectious disease specialist (my pediatrician now,) who swiftly diagnosed the herpes simplex, and began IV acyclovir. Within 24 hours things calmed down. A week after we were admitted, we got to go home.

However she never, despite a few miserably failed attempts, got off the acyclovir.

She spent another week in the hospital at about 20 months, treating an aggressive outbreak.

At one point we slowly weaned her to 500 mg a day only to have her develop a very painful trigeminal neuralgia which the oral surgeon wisely explained was caused by the herpes virus taking up residence in the trigeminal nerve in her face.

We promptly went back up to full dose, only to watch the pain fade away in a few days.

We have seen minor outbreaks through the years – usually nothing more than a red mark to indicate its time to do something. We have slowly watched her dose of acyclovir be increased. Currently at 80 pounds she was taking 1400mg a day.

We worry about the liver. About whether there are long term effects. But there really is not a choice.

That’s why as I shined the light on her face last night I knew this morning would involve a trip to the pediatrician.

We arrived bright and early and as he greeted us warmly he sized up her face in one brief glance.

“I see our old friend is trying to make an appearance. Raise the acyclovir to 1600mg. Move to 3 times a day to help it get through the system better. Take a picture every morning, and call me if it doesn’t improve. I will see you in 2 weeks.”

We stopped at CVS. We texted a friend’s mom for a play date. Then we got home at about 11:30 – drained.

Felix was working to bleach the bathroom – a job my asthma doesn’t allow.

There were human beds and dog beds to wash. There were floors to clean, and dishes to do. There was spaghetti sauce and some gluten free cookies to make.

As I heard the sound of giggling girls from behind Meghan’s closed bedroom door – I took solace in the fact that at least she had an adventure today. Even if it was in the house.

Cowden’s Syndrome and the immune system don’t seem linked on paper. But, anecdotally I hear of issues from every Cowden’s patient I correspond with. What goes on in our bodies to make it just so hard to put a virus to rest?

One child. One diagnosed genetic disorder on the tumor suppressor gene. A mannose binding lectin (a protein) that is also missing. An IgG subclass deficiency. Metabolic errors still being unearthed.

And I was looking for an adventure?

I should be happy and content with the Saturday cleaning. It is the most rest we seem to get!

Four hours in the gas line

Published on November 3, 2012November 4, 2012 by beatingcowdens4 Comments

I left my house at 8:25 this morning. Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.

I drove for a bit, to all the local gas stations. I even spent a few minutes on line at one. Then I had my friend Siri call to make sure they had gas. Nope. Off that line too.

I drove past a station with a line that seemed manageable. I asked a woman if they had gas. She cried. She said, ” I have been here since midnight waiting. The delivery just hasn’t come.”

I finally ended up at Costco. I knew they had gas. If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot. I estimated 4 hours when I got on. It was 9:42

Four hours in the gas line is a LONG time. I had more time alone with my thoughts than I like. Thankfully, I had the iPhone to keep me a bit busy. But in between games of scrabble, there was way too much time to think.

It was flat out unnerving, almost surreal to be on a gas line of this magnitude. No matter how I tried, I couldn’t wrap my head around it. I just knew I needed a full tank to get me through the week, so I waited.

I thought about the hurricane. Hurrican Sandy. My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away. No more.

The recovery efforts taking place miles from my home, in areas I have frequented my whole life. I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable. And those who could get in, well – they had the job of a lifetime ahead of them.

I thought about the mother, whose 2 babies were ripped from her arms in the rising waters. The babies, safe in God’s hands. The mother – tormented for all of her days. I prayed one of the many prayers I pray for her each day.

I thought about friends from work. Their losses. One with a new baby on the way. Waiting to have the FEET of water that entered their home addressed. Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.

I thought of the trees that make my neighborhood so spectacular – ripped from their roots.

It was a really long line. So I had time to reflect on the courage, strength and resiliency I have seen. I thought about the downed trees, and the friends STILL without power of heat.

I though about the looters, the liars, and those taking advantage of the tragedy. And I truly hope God has a place all picked out for them.

I thought about my little girl, and all she has gone through, and how she continues to make me so proud. Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’

And of course, all thoughts always return to Grandma. 92 years old – most of it spent right here on Staten Island. She and Pop married in 1945, and moved into their current home in 1956.

Grandma came home last night. Late. So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night. I was anxious to see her, and Pop.

I thought about this year. The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired. The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.

I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus. We need something to celebrate.

1:35 (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump. I don’t know – or care how much the gas cost. I only know my tank is full – at least for now.

Home for a quick shower, then right to Grandma.

Family. It always mattered a lot. It matters now more than ever.

I got my “FAMILY PHOTO!”

Published on August 20, 2012August 20, 2012 by beatingcowdens1 Comment

I was photo obsessed headed into this trip. I was determined to get a family photo. So, we headed to Downtown Disney in the 98 degree heat, and did our best in the Disney Photopass studio. We had a great time. He got some great shots. Two family shots, and one of Meghan that are just fabulous.

I won’t be showing them here. Well, the one of just Meghan may slip out, but not the others, sorry. I chose one for my Christmas card. And while I was at it, I sent it to Costco to be printed. So, I can not even believe I am saying this, but I have 200 Christmas Cards in my basement August 20th. Ridiculous confession of my OCD – YIKES. Never in all my years have I done that. But, there was the picture, all ready to go, and I figured it was the best way to keep me from showing too many people.

So, you will have to wait for that one. Instead – I will show you some of the Family Photos that didn’t make the Christmas Card!