cancer – Page 10 – beatingcowdens

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.