Disney – Page 4 – beatingcowdens

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.

The Cowden’s Syndrome Roller Coaster

Published on July 18, 2012July 18, 2012 by beatingcowdens1 Comment

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things. It could be modified to hold the cell phone that is constantly in my hand! I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier. I LOVED having my hands free again. I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone. I waited forever for the vascular surgeon to call. Now Dr. K from Boston called Saturday, and we still haven’t connected.

1D10A322-10E4-41B9-8F21-EE59F4EF0940 — Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

54DBA6A0-F7C3-4554-AC2E-A3334649A24D

Today was a banner day.

It was the FIRST time we have been to the beach since before her first birthday.

This child was so sensory sensitive that we were both deeply traumatized by the first trip. It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

We only stayed a few hours.

Long enough to get into the sand and build a castle. Long enough to find a few shells. Long enough to jump a few waves. Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.”

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring.

But then what?

Will Dr. K have a single answer?

Will he want us to drive 5 hours just so he can say, “I don’t know?”

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.

It was a friendly visit, catching up on all we have done. I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago. It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

He asked a lot of questions again. He looked closely at Meghan, especially her legs. He pointed out again the 1/2 cm discrepancy. He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!)

He listened to my concerns about her avoidance of activities. He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint. Not JRA, but degenerative arthritis. He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives.

He will nose around, and see if he can get a closer orthopedist to take a look. Then he will look for an oncologist for me. In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe. Just a baseline.

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting. Always waiting, and wondering, and worrying. What next? Can we fix it? Wait… nothing new please! We haven’t fixed the last thing yet… and so on and so on.

Tomorrow we will go back to the pediatrician to recheck for the recurrent strep. Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan.

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad. Good thing. I think it’s a case of life imitating amusement park here.

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!

The Mommy Monster is BACK!

Published on July 14, 2012July 14, 2012 by beatingcowdensLeave a comment

See… all it really takes is for the wrong person to tick me off, and the tears just dry right up!

We went out today. I told you I like Saturdays. Family days. No doctors. We went to visit my parents, and my grandparents. Saw my sister and my nephews. Then we spent the afternoon with friends at a birthday party for 3 year old twins. Good times. I was even able to eat a slice of pizza. I have had less than no appetite these last few months, so I was impressed. Feeling pretty good we got home around 6 – and took in the mail.

It was clearly a bill, but I wasn’t prepared for it to read $750, “previous balance.” Followed by an admonishment that we should pay immediately.

Again I repeat, “HAS EVERYONE LOST THEIR EFFIN MINDS?”

There are things we don’t do in this house. We never give money to phone solicitors, and we NEVER pay a non itemized bill – ever. Not even if it is for $7.50.

So I went down to my very thick “pending” file, to find that on November 29, 2010 (because this is for surgeries in December of 2009 and April of 2010) I sent them a LONG and detailed letter with all the EOBs attached, stating why I owe them nothing.

Really, stupid people who choose not to do their job, and make work for other people REALLY annoy me!

As I got all fired up for Monday’s battle, I noticed the answering machine was flashing.

Checking the message I saw it was a Massachusetts number. At 4:30 PM today, apparently Dr. K from Boston was in his office reviewing Meghan’s MRI.

I sent him the report yesterday after my visit in NYC. I also sent him a cover letter which essentially said, what Dr. R had concluded – that there was no mass in the knee, and that Meghan is still having some pain in the knee. I closed the brief cover letter by asking him to keep the report in her file should I need him at some point in the future. I made a point of telling him “If I do not hear from you I will assume you are in agreement with Dr. R’s findings.”

SURPRISE! More opinions weighing in from up north in Boston.

Dr. K’s message said the knee MRI “looked good” in terms of him not seeing blood on the joint. He said, ” I know what you wrote about Dr. R not seeing a mass. I just think if she has symptoms you should bring her to me for evaluation. Give it another few weeks and come up in the early fall.” (Sure…. no conflict with the school calendar there)

Relieved to hear the “old boys club” doesn’t supersede professional opinion in this case.

As for what happens next – who knows? Every day is a great adventure for sure. At least the Mommy Monster is back in full swing. Looking forward to fighting the good fight Monday morning.

I will probably call Dr. K – just to be clear on his thoughts too. It’s Saturday night. Monday’s agenda is set. And I have set my own internal countdown to Disney – the family vacation. Keeping my eye on the prize. God willing the doctors can’t find us there.

Headed to bed now. Tomorrow I will take my family to a cute little church a few miles away from the one I grew up in. The people I love aren’t there, but they are nice people too. And we will thank God for the blessings that have come from a week of ups and downs.

Cowden’s Syndrome is exhausting… but we can take it!