Tuesday, December 15, 2009

Thyoliday Blues and Truths

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?

Have the holidays and your experience of them changed since you've been diagnosed?
Since I've been diagnosed with cancer, I've started to cherish the holidays more. The reason for celebrating the holidays hasn't changed for me, but I've learned to really appreciate the time with family and friends because it's precious.

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?)
Oh my goodness. I don't know if I can choose a single favorite holiday food. At Thanksgiving I've always loved sweet potato casserole. Loved it as a kid, love it now.  At Christmas, my family always has an abundance of food and desserts. Some of my favorites include (and have always included) sausage balls, tang fruit salad, ham rolls, and turtles. 

I haven't significantly changed my diet since being diagnosed with cancer, unless you count the occasions I've been on the low iodine diet. And in those circumstances pretty much everything about my diet changed. 

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?
This has never happened because people are scared of the C word. You know, Cancer. I've probably been the one to make people uncomfortable. It's because I am OK with saying the C word but others aren't OK with hearing it. Let's all say it together, "Joanna has CANCER."

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
The holidays aren't stressful for me. But, when I need to cope, I cope with a nap. :o)

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?
I don't usually bring up my illness and treatment at family gatherings. If asked, I tell. I have no problem talking about my illness, but I think some people feel awkward asking about it. Some friends and family do ask about the details of my treatment and I am willing to share them. I just offer my personal experiences and leave it at that. I don't email my family research articles on thyroid replacement meds or thyroid cancer or the side effects of RAI. I think personal stories make a much greater impact than articles on studies conducted at some university you didn't go to by a group of researchers you don't know.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Last year at Thanksgiving I was on the dreaded low iodine diet. That made Thanksgiving a real treat, both for me and my mom who had to cook extra food for me. The day after Thanksgiving I took my dose of radiation and was sequestered for a few days. That was hard. My family was downstairs having fun and I was in my room. It was hard to be able to hear everyone but not able to join in on the fun. 

I was also on the LID on my birthday this year. And although my birthday doesn't really count as a holiday, I missed having the usual cake and ice cream. But my birthday certainly wasn't ruined by cancer or the LID.

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 have submitted a letter to Dear Thyroid! You can read it here. Now go write a letter of your own! If you don't want to address it to your own thyroid, feel free to address it to mine. :o)

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
I think much of the world (largely those with healthy thyroids) doesn't even know where the thyroid is or what the thyroid does. (It's in your NECK, by the way.)  Do you like being able to control your weight? Do you like having energy throughout the day? Do you like having a head full of nice, thick hair? Do you like being able to stay awake during the day? Do you like being able to sleep at night? Do you like making it through the day without your heart beating out of your chest? If so, you have your thyroid to thank. Please, educate yourself so you can appreciate what your thyroid is doing for you.  You can start here.

What is the greatest misconception regarding thyroid disease and thyroid cancer? 
The greatest misconception about thyroid cancer is that it's easy to go through. Let's set the record straight. Thyroid cancer is not the good cancer. It's not the easy cancer. Newsflash: "the easy cancer" does not exist. There is no such thing. The likelihood of thyroid cancer killing me is slim, but that does not mean anything about this easy, for me or my family. 

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? 
The day I took my second dose of RAI, one of my friends asked me if I felt radioactive...I think she maybe was asking if I felt like I was glowing. :o)  She realized that what she said was funny and we both got a laugh out of it. 

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.

Tuesday, December 8, 2009

Feeling Stupid

When your thyroid breaks you can turn stupid. (That makes me think of the Toad the Wet Sprocket song, but it's not the same kind of stupid.) There are a lot of days now where I just feel plain ol' dumb. It's like my brain is working in slooooooow motion. I forget names of people I've known for a long time. I open up the internet and forget what website I wanted to type in. I start a sentence and forget what I'm trying to say. I forget words. This happened to me today, and I would tell you about the incidence in more detail, but I really can't remember. Pathetic, I know. When something like this happens I just try to find another word that fits and move on.

I am not alone in this funky state of mind. Many people with thyroid cancer (or maybe it's people who've had RAI?) admit to feeling this brain fog. Kairol Rosenthal describes it much better here. I don't know why this happens, but if the next time I talk to you I look like I'm concentrating really hard just to get the words to come out of my mouth, it's probably because I am. Maybe you should just give me a bucket so I can put it on my head and think. (If you aren't an enthusiast of The Andy Griffith Show then you have no idea what I'm talking about. Go here and fast forward to about the five minute mark. That Gomer Pyle, bless his heart...)