The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog. Thanks for reading!
Here’s an excerpt:
The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 47,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 17 sold-out performances for that many people to see it.
I don’t often reblog. But I reread this a bunch of times and decided it’s well worth sharing. The Pink Underbelly has some excellent insight!
This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.
Proceed at your own risk.
The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”
The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they…
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In light of the events of this week, I wanted to reblog this so my next set of thoughts will make sense!
It probably started in the spring. Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org) The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.
Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991. She wanted to make her connection to the fundraising personal. As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.
So, I asked her what color? She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer. So, she took out her iPad and a quick search found us gold. The gold ribbon was the color for childhood cancer.
So we headed to Michael’s and…
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There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.
There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.
She is older now. More weathered at 10 than she should be. She misses nothing. And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.
With Cowden’s Syndrome comes cancer conversations. Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.
Anyone can get cancer. At any time. And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”
However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.
We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment. We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.
The facility is clean, and neat and tries to be festive. Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs. I watch and try to think nothing. Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through. But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.
We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck. He felt and thought and asked questions. “Has she been sick, any fever, trouble eating…?
“No, no, no.”
“Well, I don’t think there is a problem. I think it is probably OK. But just to be sure we’ll have you come back in 2 weeks. If it’s not gone we will scan it then. Oh, and you should see why her salivary gland is enlarged. It’s not just the lymph node.”
“With whom would I check that? Because for 6 months I have been talking about incessant throat clearing and all I get are theories. The last ENT told me to see a GI. Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old? I have. Any suggestions?”
Silence.
“Ok then, we will get you set up with an appointment 2 weeks from today.”
I had come in hoping for an all clear, or perhaps a 3 month review. 2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.
We arrived home at 12:20. Four and a half hours. Insanity.
This afternoon I was stressed. Over nonsense. When I am anxious I have an incredible need to control nonsense. I have been stressed a lot. I need a new outlet. This one is making me not so much fun to be around.
I heard myself today. My tone, my body language. All so negative. Not like me, and not the person I strive to be.
I was brought back on track by my own superhero. Only the strongest can share what’s on their mind and in their heart. That’s why I love her so.
Wise beyond her years. Worried about things she should never even have to think about. Yet still able to find the simple beauty in the world around her.
I took a “time out” tonight to regroup. She nestled up with Daddy. Warms my heart to see her in my bed.
My nighttime prayers include the many who had their own medical adventures today, and my girl. That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.
At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.
That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.
Because sometimes you need to sleep, and think carefully before you type.
The surgery went smoothly. The surgeon did a fine job, and so did his team. It was not their fault we were delayed by hours. Someone else’s baby needed their attention. And I can respect that. He followed up personally, listened to Meghan, was cautious but not paranoid. His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.
Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together. Things on her skin – even band-aids annoy her. This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.
But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.” By the early afternoon she looked better. The surgeon said to watch her till 5. A fair number considering she didn’t hit recovery until 7 PM the night before. If she was still good at 5 PM he would clear her to go.
And then there was endocrinology. Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.
When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function. That being said, even when they aren’t damaged, they are often traumatized for a bit. Low blood calcium is OK for a few hours, but not a few days. Like everything else, the body needs all things working together for smooth operation. Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover. They had to just see if it tanked out. The decisions for her post op supplementation would be made based on these blood results.
So, she had blood drawn at midnight after surgery. Then there was the draw at 1 AM for blood sugar. Then there was a draw at noon. Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw. I insisted that was not the case. Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.
Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw. I waited until 8PM and started hunting down results. I was told that the ionized calcium had dropped from 4.8 to 4.3. I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3, Apparently the 6PM draw held at 4.3 There were two other tests, and I wanted the numbers.
Run around. Run around. Run around. Finally after much work and some heated conversations we got the numbers from the other 6:45 tests. The calcium held their own, indicating a drop off to be unlikely.
Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw. Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week. NOTHING overnight.
Now it was after 10.
The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium. At least I was able to respect that she apologized right to my daughter for muddying up the entire process and raising her anxiety.
The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.
The passing of the buck that took place around the endocrinology department – disgusting.
And this is the clean version.
Facilities. Doctors. People. Can rest on reputations previously earned. And then one feeds into another and that reputation carries them – sometimes too far.
We have been there, and done that. And we are far from done. So loyalty lies in individual treatment and care by individual doctors and nurses. There is no one perfect facility. There is no one perfect place. Not even in Manhattan.
We gathered our things quickly.
We were in the car at 10:45PM.
My wise daughter asked what the lesson learned.
I said,”Trust your Mom.”
My husband said, “Educate yourself. Advocate for yourself.”
I guess we are both right.
The ride home was tough. Painful. You use your neck for an awful lot of things.
But we got home in time to give her a well deserved Valentine’s Day Gift
She certainly is our Hero. And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night. Especially the one to “Trust your Mother.” For now I can be the advocate. She has to find some time to be the kid.
Yep. Finally the taste of victory, and I will savor every single drop. I know all too well these moments don’t come often.
Sandwiched between way too many doctor visits this summer, were a few other pressing problems.
We need a new roof. Well, that one is cut and dried. Pension loan. Money available – job before the winter.
The bay window in the front of the house needs to be replaced. That one, not as easy. Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked. WAITING, and following up, and WAITING, as the wood shrinks and peels.
And then there was the car.
The car we bought in December after this happened in November.
The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up. It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.
If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.
In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.
The navigation was also connected to a blue tooth that went right through the car speakers. My phone synced to the car and I could talk without worry.
I was thrilled – when I wan’t frustrated. Or lost. Or left dropping calls, or using my Iphone to take me places.
The car wasn’t working right very early in the game. We ignored the “glitches” for a few months thinking it would get better.
Then in April it made its first trip in for service- only to be declared healthy.
Until it wasn’t.
Then it went back in. This time a new radio.
Nope – that wasn’t it.
And so on and so on and so on and so on.
I drove more rental cars this summer than I ever want to drive in my life.
During one stretch the car spent 11 days in the service station. They said they couldn’t fix it.
They called in the field tech (“Magic Wand Guy.”) He said it was fine.
Nope. Not fine. My Iphone is full of voice memos of me trying to get places. It took us 18 minutes to get started on the trip to the Philadelphia Zoo.
At one point I drove around the neighborhood giving it addresses. It was 2 for 10.
And the sound on the blue tooth just kept getting worse.
I didn’t know much about the Lemon Law, except that it exists. But hidden inside the glove box of my car was a handy book explaining it. It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.
I read.
In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office. The deliver confirmation says it was received July 22. I wonder when it hit the shredder?
Next, I opened a case with the Better Business Bureau. They closed it when “Magic Wand Guy” was coming to fix the car. After he declared it fine, and before I even drove it off the property, I tried the system again. Still broken. I reopened the case.
When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.” I was really hesitant. He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer. I trusted him.
It took so many hours to prepare the documents. I wrote a narrative that was over 10 pages. I faxed. I Emailed.
All of this in between dragging ourselves back and forth to the dealer in between doctors.
Today it paid off.
I finally got that call from corporate.
They are replacing the car. No out of pocket cost to us at all. We went tonight to decide on a color. The VIN number has been assigned to us. 7-10 days for the paperwork.
Then I drop off the old car and drive away with the new one.
If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!
However, with so much time spent together I developed a respect for the Service Manager. And, in the end he was our advocate.
And tonight, while we filled out papers, with no commission to be made, the salesman was kind. He was friendly and patient. He was personable and understanding. He got that WE matter.
We chose black. Time for a color change.
So many things go wrong, so often. Hanging onto the anger will make you sick. And, well – we haven’t got time for that.
Sipping my t+Chai I have peace.
Talking on the phone to my father before he told me a story. The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time. I was stressed about leaving her, and about the whole mess. He told me tonight she said, “I don’t know why Mommy’s so upset. She’ll get this taken care of.”
Tonight when I was so happy she said, “I never doubted you.”
Her confidence. Whatever I did, by whatever grace I have it- I hope to keep it for a long time. It’s quite the compliment.
I don’t keep a win/loss column. It would be too distressing. But tonight – we win. And for tonight, that’s just plenty.
September 11, 2001 I was teaching second grade for the first time. The kids were so little. ( I am sure you remember where you were too.)
The school was so well run, it was hours before I would know exactly what horrors had transpired so close to us.
I work in a school, that is part of a community where parents who are police, and firefighters are the norm. Not to mention our teachers – married to FDNY and NYPD.
Our community is so close to Manhattan, most of our working parents worked down town, or mid town like my husband.
As I watched the students leave, one by one, I was struck with the reality that this day they lost their innocence. That no child would ever again grow up as carefree as I once was.
As the names came out, and the stories unfolded we all knew someone – some a lot closer than others.
Funerals unending.
Lives changed forever. Still changing.
Street signs commemorating victims. Memorials, tributes.
Cancer. Asthma. Chronic illness. PTSD.
Everyone remembers, to some extent. But here, in New York the pain is palpable.
This morning we prayed that those suffering heartache would be able to take solace in the smiles and laughter of the youth surrounding them. We have not forgotten.
9/11 brings with it the promise of 9/12,
To all those with painful hearts- You are loved and remembered.
While we are on vacation- my friend started her own blog. She’s not a Cowden’s survivor, but a survivor of LIFE, and its many twists and turns. I have a good feeling this will be worth your time!
Sometimes when you lose you win. ~ What Dreams May Come
I have always wanted to write a blog. I think about doing it all the time. I’ve been struggling to find the perfect subject. The conversation (with myself) goes something like this:
Maybe I’ll blog about teaching. No. Maybe infant loss? No. Hmm… Ok maybe motherhood? Nope. Health and wellness?? Maybe…
I struggle with this all the time. But that isn’t what stops me from writing. It’s that familiar voice inside my head that says the words that I don’t want to hear:
No one cares what you have to say… about ANYTHING!
So I do what most of us do. I listen. I put the idea of blogging out of my head and move on to something safe. Something in my comfort zone. Something that doesn’t involve risk. Until this week. This week something shifted inside…
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I actually watched it happen. We were walking up the hill to swim practice last night. Then she was limping.
She handed me her bag – struggling to balance. Before I could ask what had happened…
“My hip, my groin, the whole thing!” Gesturing near her hip bone and down her outer thigh.
I looked for a bench but there was none. She wasn’t interested anyway.
“We can’t sit – I will be late for practice!” Exasperated that I would even think she should stop walking while writhing in pain.
“Um, Meg – I was thinking you shouldn’t go to practice.”
“No way! We are here. I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”
We took away soccer.
We took away dance.
We can’t take away swimming.
So I made sure she asked her coach to help her stretch the hip. She stopped only once during the hour and fifteen minutes. I am sure I could not have kept up.
As I walked, and she limped back to the car she said it was, “not so bad.” And, she was “glad” she practiced.
Dedication. Admirable. Torture.
After the shower it all fell apart quickly. She froze almost completely. We rubbed it, and elevated it. Within an hour she needed help walking.
She got settled into our bed and tried to rub her hip.
The yelp indicated the pain on her hand and wrist has not subsided either.
As we got her comfortable I thought forward, about the week to come.
I emailed her genetecist and her oncologist this week. I attached photos of her hand. I attached the copies of the MRI report. They responded inside of a few hours.
Biopsy those lesions. On this they agreed. Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome. Soft tissue tumors are common. The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.
I know. I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s. It wasn’t there. Then it was. Now it is. And it hurts too.
Tuesday we will see an orthopedist. Thursday we will see a hand surgeon. Two more doctors we didn’t plan for. Two more afternoons lost waiting. Two more opinions to contend with.
And the prevailing uncertainty that anyone will ever fix the problem.
She is walking a bit better tonight. That is encouraging. A nice afternoon with a friend. Conversation for me was easy and comfortable. Grown up talk – something I have craved, while the children swam in the pool. Almost normal for a few hours there. Almost.
The car is going to stay in the “car doctor” over the weekend. Apparently its condition has been downgraded.
Paperwork to begin a complaint with Better Business Bureau should arrive early next week.
Maybe I should give the CAR an ISAGENIX shake or meal bar. It might be more productive than what is being done to it.
Monday we should know more.
Monday we should also hear from the rheumatologist about her thoughts on the MRI.
Sandwiched in between concerns about family and friends alike. In some ways our lives are miles different. In more ways – they are exactly alike.
Patience. Worry. Anxiety.
Tick Tock, Tick Tock… that would be the sound of summer passing us by….
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.
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!
beatingcowdens 