Follow your gut

By Denise Organ
February 24, 2009

Let me start by saying I spent a lot of time trying to figure out why I got diagnosed with cancer: why had he picked me? Well, after some long nights thinking and even longer nights crying, I think I figured it out. I think maybe I was given cancer so I could give cancer a voice. You see I am a talker, about anything and everything. So I guess he wanted me talking about something more important than the weather.

In August 2007 my identical twin sister got diagnosed with papillary carcinoma (thyroid cancer). She had been on thyroid meds for years and had an unusually large neck that she had asked doctors about for years, but no one felt it was anything to be concerned about until December 2006 when she was really ill with pneumonia. She saw a different doctor who told her he could see the growths in her neck from across the room, and so began her journey with cancer.

She was diagnosed in August of 2007. She had the entire thyroid removed and did the radiation, and all that comes with that.

When she saw her oncologist she asked him if her identical twin should be tested and he said well maybe but nothing really to worry about. So being the concerned sister she asked me to demand an ultrasound on my thyroid. In December 2007, I found out that I had a number of lumps on my thyroid but of course nothing to worry about. About two weeks later I was sitting at the same surgeon’s office that my sister had and he reassured me it was more than likely nothing.

Mmmmmmmm nothing; well I demanded surgery as soon as possible. I waited for eight months to get surgery with many calls to the secretary asking for someone to listen to me as my gut was telling me this was not “nothing.”

I had half of my thyroid removed to test the lumps. And so began my journey. As odd as it sounds, my sister found out December 2006 she had lumps and found out August 2007 she had cancer. I found out about my lumps December 2007 and that I had cancer August 2008. Coincidental? We don’t think so!

I am now waiting for the second surgery to remove the other half as it has three lumps as well. Against the surgeon’s opinion, and against the oncologist’s opinion; I have made the choice to remove the rest. It seemed so clear to me to remove it but the doctors didn’t see it that way. Then again they did not think I ever had cancer so with all due respect, I am going to listen to my gut.

I wanted to share my story as I am hoping someone out there will read it and get tested, demand someone listen to you, expect more from our medical system and don’t stop until you get it. I am now stuck in the waiting game that all cancer patients get really good at playing: “Hurry up and wait” should be the cancer motto. You wait for tests, then results, appointments, surgeries, treatment, and finally your life back.  I am anxiously waiting to be on the other side of this diagnosis.

I want to get the other surgery complete, treatment (if needed), and kick cancer’s ass so I can move on with all the other important things I want to do like laugh, hug, play in the sand, sleep in, walk in the rain, lay in bed with my children telling me jokes early in the morning. I want my life back.

I am angry most days, as I am a control freak and one thing I have learned is you have to be willing to give up some control when you have cancer. My health sits in someone else’s hand, date book, and schedule, and that upsets me immensely. I want what I am worth, the best, immediately! We are all worth that much.

I am a survivor already; even though I am not completely through my journey (as if anyone is ever complete with cancer) but I am where I am because of my persistence and my voice. I tell everyone my story who will listen. I don’t want anyone to be “shhhhed” by another person telling them it is nothing to worry about.

These are the only bodies we get and I intend to be good to mine.

I had no symptoms, no signs, and no reason to be concerned except my twin sister’s diagnoses, and that was enough for me!

And so began my journey.

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