Sunday, December 6, 2009

Thyoliday Blues and Truths

Intro:

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Questions:

1) Have the holidays and your experience of them changed since you've been diagnosed?

I was about to say no to this question when I was suddenly smacked by the realization that one of the biggest changes in holiday's is directly related to the thyca. My having cancer got my parents to talk to one another. Not just talk, they've become friends... friendly even. It's weird. Its weird to have my dad show up to holiday things w/ my mom and step dad, and step dad's family. It's weird to have my parents coordinate things without yelling or using me to play telephone. I don't think I watched them interact this much since we moved to the US when I was 5. They did the split up/get back together thing from 6-9th grade, and then that was it. Then I went in for surgery, parents sat on opposite sides of the waiting room forcing me to wander back and forth and chose who to sit next to, then I wake up post surgery to them laughing and making jokes over me. I thought i must have been on some good morphine. So yeah, in that respect, cancer changed everything for my holidays.

2) What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)

Butter cookies... and still butter cookies. My diet changes on regular basis. On the LID, obviously that's a change. Back in the day, once i got off the LID I basically yo yo'd the other way... F*k salads... and lettuce... evil green leafy plants. But then just trying regular dieting. Trying to figure out how not to eat soy or walnuts b/c it interferes with the thyroid meds in ways i'll never understand. Man I want some butter cookies....

3) Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?

I think I get the 20 questions at every function. Or worse, the unsolicited advice. But this isn't just based on the cancer, and there hasn't been anything front and center that sticks out.

4) How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?

Butter cookies

5) Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?

No. I avoided educating my family like the plague. It goes back to the 20 questions bit. They tend not to be good listeners, nor perceptive ones. Like when I change my tone, and stop eye contact as to say, "and we're done talking"... I have a strange family dynamic like that. No one really wants to hear what I have to say, they just want everything to be ok, and voice their advice on how they would handle things and criticize what they think I do wrong.

6) Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?

Senior year of college spring break, officially told i had cancer, surgery w/in the week. College graduation, just started LID. Every summer break except this year since 2005 begins with either surgery or a round of radiation (be it ablation or dosimetry)... Last year, Christmas break... I had a tube running through my eye to my nose... Lots of antibiotics and glasses for christmas... and new years... I've also skipped a few spring breaks to do my thyrogen stimulated stuff...


I just want to point out here, when i first read these questions, I really didn't think I had anything to say. I think I had actually blocked out all of this stuff, like family reactions, the connection to holidays... maybe it was just selective brain fog...


7) Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?

I submitted a letter a few months ago, from me to my thyroid... definitely a hate letter. A bitter angry break-up hate letter. I loved it. I fueled it with about 4-5 years of anger and rage. I'm now totally stumped about another letter as I'm pretty sure I covered everything possible the first time. But I'm thinking if I do it again it'll be from my zombie thyroid... seeing as my level of recurrence is remarkably like sequels to bad horror movies. "yes there were just a few cells left, totally undetectable, but they mutated and took over the world... aaaaaaaaahhhh"

8) If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?

Removing an entire thyroid is not a cure for thyroid cancer... its a treatment... a painful life altering treatment... even radiation is not a cure for thyroid cancer... it does not go in and kill cancer... it goes in and kills thyroid cells, which presumably have cancer.


9) What is the greatest misconception regarding thyroid disease and thyroid cancer?


I have no idea... probably that it's an easy cancer to have, the best cancer you can get... doctors that say this should be smacked, or at least glared at... what should be said is that this is the cancer that is least likely to kill you and that it is treatable... don't spin it to sound like a walk in the park. Its misleading.


10) What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?

This happened while carving pumpkins for Halloween this year. I can't remember exactly what I was doing but my livestrong bracelet just snapped. One of my friends just blurted, "looks like cancer won." Mind you, if you read my blog, you should know by now that i can take and throw back some pretty bad cancer jokes, but for whatever reason that actually just hit me like a brick.


And seeing as I don't want to end on that story, I'll end on a more amusing one. I was visiting some friends up north and we were at a Renaissance fair, along with some of their friends that I didn't know. As we're leaving there's this giant... and my friends' friend, was like, bet he has a thyroid problem. My friend Andrew went on an instinctive hug/back pat, "i'm so sorry," ... "dude, not cool"... while i meanwhile was cracking up.






Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

2 comments:

Dear Thyroid said...

Robs;

Outstanding post! Loved it. Thank you so much for participating.

I can't believe what your friend said re: your Livestrong bracelet snapping -- I would've felt pretty badly too, and like you, I love a good come back with respect to my disease.

I love, love, love that your family dynamic has changed with respect to the holidays.

overall, and as always, you're honesty bowls me over.

XOXOXO
Katie-

Joanna Isbill said...

Great post, Robin. Loved your answer to #9--why do people think any cancer is good to have?! Yes, I am grateful that I am not likely to die from my cancer, but that sure doesn't make it easy to go through!