Thyoliday Blues & Truths

28Dec09



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?

It has been less than a year since my diagnosis, but of course it came in time for the holidays.  Thanksgiving and the festivities surrounding it were extra special because some of my relatives thought I might not make it for the next couple of holidays and that they wanted to come after this traumatic bushel, so they thought they ought to come in to see me.  We had more than 20 people at our table.  I found that this year, the discussion wasn’t focused on me, but all of the eyes were.  Everyone looked at me while discussing other matters—as if to check and see if I were still alive.
During the other holiday season, I was back “home” in Germany, and with the other side of my family—I found that after the children were dismissed from the table, the questions began, but otherwise there was really no difference.

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?)

My favorite holiday dishes from childhood are mashed potatoes (with the skins) and cranberry sauce.  They remain my favorites—and luckily I got done with my low iodine diet before Thanksgiving, so that I could indulge in both.

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?

At a university holiday party in Heidelberg a professor of mine said, “Wow, your haircut is really horrible”.  To which I responded “radiation, hormones”.  He then continued to make a big fuss about it until he finally listened to me and then asked “well, what does that have to do with your hair”—I then said “I have cancer.” He looked at me shocked (but I am aware that the administration in the medical program definitely had told him) and I added, “the hormone imbalance makes me lose lots of hair, and the doctor suggested I just cut it super short so that when they fall out, they’ll match coming back in”.  Most of my classmates were standing around to witness the event, which made it super awkward for those who didn’t know why I had been gone for the past two months.

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

Because my TSH has yet to be regulated, I have the nice effects of a rapid increase in L-thyroxin (Synthroid) dosage.  When I get upset or stressed I get heart palpitations.  So I’ve tried to take the most stressful moments with humor—although it makes me look funny, sitting there while everyone else is screaming at each other, laughing, it has kept any medical professionals from needing to use paddles.

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?

I do not usually feel the need to enlighten or educate those around me during holiday get-togethers—mainly because I don’t feel like scaring any of them.  As is, my nuclear family is on a need to know basis about my thyroid cancer—they have yet to understand the magnitude of a stage 3 tumor and the ridiculousness that I only had 3 lymph nodes removed.  If they knew this, though, I promise they would be either be inconsolable with complete confusion, in disbelief, or just be plain super upset.

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

No, not really… during Thanksgiving, my neck muscles were in their ripest stage following the surgery and sometimes they’d just give out and my head would plop to the side—in order to prevent such an occurrence or related injuries, I wore one of those neck pillows that looks like a toilet seat.  I decided not to wear my pillow that evening, and just as I was engaged in conversation with my aunt, my neck gave a bit.  It was awkward, and then I had a few complaints of various pains (these I would ordinarily expect to be ignored)… I have a feeling that that really pushed my disease to the forefront and gave my family a bit of a spank-in-the-ass reminder that I was “sick”.

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 have and did, it was a hate letter to my thyroid and will be published in the beginning of January.

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?

It isn’t all the same.  I loathe hearing people say, “Oh yeah, my friend had that, but she’s just fine now.”  Or “Yes, I knew someone who had that, and it was hard in the beginning, but once she got over it, she was fine for life.”  That makes me boil inside, the problem is, though, I know that they’re trying to relate to me or console me, so I don’t lash out at them (despite the extreme urge) and explain that everyone’s body works differently, and living without a thyroid is different from living with out a thyroid because you had thyroid cancer, etc.

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

That it’s curable and can be easily fixed by a simple pill once a day.  I wish this misconception would stop being propagated by websites and unknowing doctors.  If you’ve found a way to cure cancer, you better go tell someone ‘cause you’ll get a fucking Nobel Prize for that—until then, stop telling me that I can be “cured” (my Thyroglobulin is still detectable… and I don’t see it going away any time soon, despite the radiation treatment  went through).

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?

The stupidest thing someone has said to me was probably the day of my diagnosis, after I had received the phone call, I arrived at my parent’s house crying, and I told my mother, at which point she started yelling at me, asking me for a “term to google” and I told her “papillary-follicular thyroid cancer”… two minutes later she ran out of her office and screamed “I don’t know what you’re so upset about, it’s curable!”

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.

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8 Responses to “Thyoliday Blues & Truths”

  1. 1 Bee

    love your honesty.hate that you’re going thru this. love that you’re up front about what you’re going thru. hate that you -like many of us-have had to deal with some morons. love the neck pillow/toilet seat visual. One day at a time, darlin’.

  2. HFTSH, Thank you so much for participating in this blog tour. I absolutely loved your answers. As Bee said, your honesty is outstanding! Love it to bits and pieces.

    I also understand why you manage your family with respect to your thyroid cancer. I do have a question, how does it make you feel to not be able to tell them everything?

    PS: love the way you dispel misconceptions about thyroid cancer, it’s so very important to keep that message alive.

    Big hugs and love,
    Katie

    • Thanks!

      Well, as for the family issue– frankly, it’s horrible. I wish they could understand how I feel and how hard it is for me, and will be in the future… I hate that I can only talk to my friends about it, because one’s family really has such an intense bond, and with it, an intrinsically very intense connection, one that often helps with the healing process. Just being able to casually express one’s feelings, and the other person already knowing that one doesn’t have to explain any background information is very special.
      But I know that if I were to continue to talk to them about what’s going on, I will get bombarded with questions and the nice calmness surrounding me and living a continent away will break.

      hugs and love back,
      Hungry

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