...everything you need to know about thyroid cancer, and probably a few things you never knew! Oh, that, and I'm not going.
Since this is Thyroid Cancer Awareness Month, I figured I'd do some searching on the web to see what was being said about it. September is a pretty big month for me--new school year, birthday, start of my favorite season....so it seems fitting to have the same month dedicated to the thing that has turned my life upside down!
My pin up girl....go to DearThyroid.org for why!
The website DearThyroid.org is a great place, full of info, comfort, humor and a space to let it all hang out in whatever way works for you. It is a huge help to read what others have experienced, and if there is some humor in there, even better. One of the most important things that has helped me deal with this is the blogosphere. I've learned sooooo much from other people going through this hell. DearThyroid is sponsoring a blogging carnival where people post their ideas/feelings about awareness, so I thought I'd participate and see what comes of it. They have some questions they want answered....
First off, I was diagnosed in February 2010 with papillary thyroid cancer with classic, follicular and diffuse sclerosing variants. The original tumor was small, about 1cm, but it had already made it to my lymph nodes by the time it was discovered. I had a TT in March followed by a month of intense hypo hell, and RAI at the end of May. Prior to the thyca diagnosis, I had been waging a 12 year war with Hashimotos and a malfunctioning underactive thyroid that resulted in miserable infertility. We weren't on good terms before the diagnosis, and it only went downhill from there. Not sorry to see the gland go frankly. As of now, bloodwork is coming back undetectable. Woo hoo!
Question 1: How has your disease changed your view of awareness?
I think having thyca has made me want to talk about it, to let people know what the reality is. I have also spent time undoing myths about thyca. I hate hearing, "Oh, if you have to have cancer, that's the best kind to have." Really? I don't have to have cancer, and I don't want to have any kind of cancer. I want to ask the person which cancer they would choose if they had to have cancer. What a stupid statement.
And, "My aunt/sister/mother-in-law/ best friend's second cousin twice removed had thyroid cancer, and she's fine." I wonder if the person really understood what this new world entails? That thyca survivor probably never was "fine" since she had to be followed constantly with bloodwork, scans, possibly more radioactive iodine, and probably spent tons of time regulating her TSH. Redefine the word fine please.
I now feel some sort of responsibility to educate people a little bit. Thyca is not easy. It is not something that ever really goes away. 30% chance of recurrence isn't something to snicker at.
Question 2: Do you feel that raising awareness is important?
Hell yes. If thyca is on the rise, chances are you're going know someone who is diagnosed with it. And, look at what the pink ribbon has done for breast cancer--everyone seems to recognize what that represents.
Question 3: Do you feel the need to educate others about the disease?
Yes, if for no other reason than to provide accurate information and dispel myths. Thyca is by no means "easy". Is there any such thing as a "good cancer"?
Thyca also leaves you with a host of things that are just annoying: memory loss, brain fog, weight gain, extremes of being exhausted and hyper.... I don't think people understand how a disease like this shatters your foundations because it leaves you unable to trust--unable to trust your body, unable to trust the future you had planned, unable to trust that everything really will work out fine. There is always the nagging possibility that it might not. It can mess up your previously happy view of the cosmos and how you thought your life was going to be. More unpredictability than I want to deal with some days!
Also, aside from the scar, I look fine physically. Fatter and a little more puffy at times, but relatively normal. The outside package may be holding up, but there are days that I figure the innards are in total chaos, and no one can tell that by looking at me.
So if I can explain some of this, then maybe the "good cancer" image will go away.
Question 4: How do you go about it (promoting awareness)?
I'm still working on that one. My close friends and family and most of my co-workers know about it since I'm pretty open talking about it. I put a Thyca link on my Facebook page today and mentioned in my status that I'm a thyroid cancer survivor.
This blog has been a great outlet for me, but I also figure that if someone stumbles across it during a google search, and some if the info on it is helpful, then I've helped/educated someone else.
Ok, the classroom butterflies tie in with a movie I show in class (In the Time of the Butterflies--great movie), but it seems eerie to me that I plastered my room with these beautiful removable sticker butterflies, only to be diagnosed later in the year. They've taken on a whole new meaning!
And of course, there's the scar across my neck. I refuse to hide it and consider it a battle scar in this never-ending war.
Thyca.org has some great tips and suggestions to promote awareness too--I'm thinking I might print out some of their flyers and hang them up in the teacher's room at school.
I've never been one to mince words. so why start now?
I also think that by helping make people more aware, I'm paying back for the people who helped educate me, kind of paying it all forward. I love September.....
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