Dear Thyroid^TM

Written by Joanna Isbill: Editor, Life Redefined (Thyroid Cancer in Young Adults Columnist)

It was Wednesday, October 8, 2008. Just a few days after my 24^th birthday. I woke up with an ache in my neck. I reached up and felt a large knot on my thyroid. Something inside me told me it was cancer.

The next day, I saw my primary care physician. He ordered blood work, sent me to have an ultrasound, and referred me to an endocrinologist. The ultrasound showed three nodules on my thyroid—one on the left and two on the right. The blood work indicated Hashimoto’s thyroiditis. I met with the endocrinologist. He told me that the chance of this being cancer was very small. However, he still recommended I have a biopsy to confirm what the blood work suggested. Another endocrinologist in the practice performed the biopsy. It was less than pleasant. Afterward, I heard him talking to my endocrinologist about the appearance of the nodules. They were talking in hushed tones about calcifications. I later learned that calcifications are commonly seen when cancer is present.

On October 21 I got a phone call from a medical assistant at my endocrinologist’s office. She told me I needed to come in the next day to get the results of my biopsy. Who calls and asks you to come in to tell you everything is benign and you’re in better health than ever?  After this phone call I broke down and cried for a long time. Even though I had known in my gut all along I had cancer, that phone call still hit like a brick. I will never forget the emotions that coursed through me that day.

The next day, my endocrinologist confirmed what I already knew. The biopsy indicated papillary thyroid cancer. I had a total thyroidectomy and central node dissection on November 5, 2008 followed by RAI a few weeks later.

I’ve been through several different frames of mind since I was diagnosed with cancer (which I’ll discuss in further detail in future installments). Relief. Denial? Fear. Acceptance. The day I was actually diagnosed with cancer I felt relief. I was relieved because, although I knew in my gut I had cancer, the actual diagnosis confirmed my instincts. During the two or so months after my surgery, I think I was in shock. I don’t know if it was denial or not, but I do know that I had not yet absorbed the fact that cancer was no longer something that happens to other people, but something that happened to me. Once I absorbed this, the fear set in. The fear that cancer brings is crippling. It is absolutely all-consuming. After I got over the fear, and I did eventually work past it, I was left with acceptance. I accept that I have cancer, and I accept that it’s something that has changed my life.

Throughout the weeks and months after getting my biopsy results I was bombarded with emails and cards full of encouraging messages. Many of my friends who sent these messages told me they hoped I could soon put this all behind me. If only. Cancer is not something that I can put behind me. I carry it with me every single day. It has changed every single part of my life. As much as I fought the change, it happened. I am a different person. And so it will never be “over.”

Cancer left my life in pieces. But when I tried to put them back together, I realized they no longer fit the same way they once had. It’s a work in progress, but I am trying to figure out where everything goes, redefining my life.

I’m looking forward to walking this road with you, because it’s not a road that should be walked alone.

xoxo,

Joanna

joanna@dearthyroid.org

Read Joanna’s Bio.

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(Written by Louise Sopher, Hashimoto’s Patient)

Dear Thyroid,

Prior to the last few months I was constantly occupied with either irritating, hilariously irritating (and stupid), then finally, brilliant eventful occasions. I thought it was about time that we both addressed the way in which you made me turn, point and laugh at myself time after time after hilariously stupid time. Oddly I cannot remember each and every stupid and clumsy thing which you made me do not long ago and somewhere between the summer months and the end of hilariously stupid year. Still, let us try, and laugh at what I do remember:

Stupid thing number one: I lost my brand new—literally days old—Prescription Charge Exempt card (which I do actually thank you for as it is a kind gift). Well, let’s not say lost: it fell out of my wallet as I got either in or out of my car just down the road.

Now I believe that this surely must’ve been a hint by you, Thyroid, of how unappreciated you were of having more pills thrown on your head, although you cannot be angry about that considering that they are supposed to help you. And even if it wasn’t, it certainly was some kind of a reaction by you, considering that any other card could’ve dropped out at that moment – any other card. And there were quite a few.

Now, for a minute, let’s cross stupidity with luck: arriving home I was greeted with that unwelcoming “something’s missing” feeling (as if one card less made my wallet lighter!) and, after several checks of pockets and the car floor, arrived upon the conclusion: “I’ve lost a card!” Hoping to go out for a walk anyway, I decided to switch my usual walk for the minimum hour-long walk down the road, whereupon I found myself standing on the pavement aside the spot where I had that morning parked my car. And there it was: the card I’d lost, still sitting, totally unseen by anyone, waiting for me to rescue it from the streets. Cheers.

I had thought I was lucky. I had thought I was brilliantly clever. But that was just the start of it, because, lo and behold – Stupid thing number two: I sent my paychecks back to the people who sent them to me!

Now that really was stupid. And I’m talking unbelievably stupid. Thyroid, you must of been impressed with your clever act, you evil little bugger. You left me to clear that one up on my own. We victims of bullying thyroids must always work hard to clear up their mess. It’s like a kitchen full of boys: they leave a trail of their stomach-insides.

And it didn’t stop there.

Whilst enjoying walking in my absolute favourite field I would keep dropping my water bottle. One minute it would be in my hand, the next it was on the floor and I was shaking my head, dismayed at myself. It was like my hand had forgotten that it was holding something. I mean, what hand forgets why it’s open, tight around a water-bottle? Clumsy or what!

Thyroid, you turned me into a walking, perfectly sober, drunk. I kept spilling water. On the examinations results day I first dropped papers and then flipped my phone several times over before finally dropping it, receiving the comment of “smooth” from a well-observing friend. Working at a summer camp I joined in with a sports game and couldn’t catch a single ball. What a prat! No one trusted me to be on their team again!

Thyroid, thyroid, thyroid, part of me wants to swear that if you dare fall asleep again I will make sure that nothing changes unless it’s for the good. Nothing. And part of me, if you do that again, wants to scream and shout internally at you – wanna see me when I’m angry? Oh, no, I don’t either!

Yes, thyroid, I know it wasn’t your fault and all that rubbish – it was our immune system gone ruthless; it was your lack of being able to protect yourself…but you know you have to fight sometimes, thyroid? You have to fight.

Look at me, a matter of months ago: I could barely string a sentence together…very little time ago, every now and again, and at the moment, very rarely (please, please don’t let me talk too soon!) I am stalling over my words and going “what was I saying?“. Usually though, when this is happening at the moment it’s because I am thinking so many things at once; because part of me is working faster than my body can keep up with; however when you, Thyroid, are snoozing away, everything works at a snail’s pace – everything works so slow, in fact, that sentences just don’t quite work so well. What’s that saying – that things never sound as good as they did in your head, do they? Now tell me why people choose to drink when they end up like this?

Now, almost certain that the stupidity and clumsiness was now surely over but still having to tidy up the mistakes of my previous acts (receiving a phone call that a letter I’d sent had been received without a most important document) I was half-excited at a new day and half-angry at myself, and I tried to jump over something (as I quite frequently did) and ended up falling over, dislocating my shoulder. That, I hope, was the end of that.

And good riddance too!

Hoping that you will learn a lesson from your outrageous stupidity,

Your finally perfectly un-drunk outer-casing,

Louise

(Bio): Aged 18, I was diagnosed with hypothyroidism and I think Hashi’s about a year and a half ago. In May 2009 I saw that the first ever International Thyroid Awareness Week, brilliant though it was, was barely publicised anywhere except on thyroid-related sites. I created my blog: Small But Mighty: A Thyroid Life with the hope of kicking up some of that awareness for the ‘Thyroid Oblivious’ bunch, as well as offering tips to people who have thyroid disease. On my blog on Everyday Health – Life With A Headless Metabolism I’ve been writing about Changes and how they spin around, this way and that way, crafty little buggers, wonderful and horrible, all at once.

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There are only 40 days left before the Relay for Life!  Can you believe it?  We are still the number one team with a $1,000 lead over second place!  Our team is furiously working away to get ready for the big day.

First, I want to say how great it is to watch the Oscars and see commercials to raise awareness for cervical cancer.  It is so important to raise awareness for all cancers – not just the pink one.

Second, a major thanks and virtual standing ovation go out to Angel McMellin for all of her hard work on our bake sale.  Not only did she bake enough to feed the entire hospital, but she ran our event at the Johns Hopkins Outpatient Center and raised $320 for our team!   And thank you again to our supporter, Kim Thompson, who donated her own baked goods to help us in our fundraising efforts.

Saturday’s team meeting was a fun lunch event and we covered a LOT of information.  Thank you to All American Coin & Jewelry Company (www.aacoinco.com) for sponsoring our lunch.  Those crab cakes definitely got the creative ideas flowing!

If Bitching Was a Cure for Cancer, I'd be in Remission

Important Information For Team Members…

In order to get an official Relay for Life participant shirt, you MUST raise $100 by March 10, 2010!

Again, if you haven’t all ready, I encourage our team members to log in to their participant centers on the ACS website and start updating their personal pages for donations.   There is also an application on facebook that will help you with meeting your $100 personal goals.  Both of these tools will provide donators with official receipts from the American Cancer Society.

Please check your email for an important update on team and individual fundraising incentives provided by the American Cancer Society.

Online Fundraiser Update…

Our online fundraiser is going strong thanks to our wonderful ladies at Dear Thyroid.  We are encouraging the Dear Thyroid community to form fundraising teams to help us in our goal for the American Cancer Society.  The first team to raise $3,000 wins TEN free “Invisible No More” bracelets; the first team to raise $1,500.00 wins FIVE free bracelets; the first team to raise $750.00 wins THREE free bracelets; and the first team to raise $500.00 wins TWO free bracelets.  For more information, contact me or visit us at http://main.acsevents.org/goto/wings2010.  The contest ends March 16^th!

As always, thanks to our supportors and our team members for their tireless fundraising efforts.

Until next week,

Wings of Hope

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(Written by Elaine, Graves’ disease patient)

Dear Mr. Graves,

Why I give you that endearment is beyond me. I guess it’s a force of habit when writing letters to use “Dear”. You are anything but dear to me. I guess you know that by now. I’m not in a good mood today, so I thought I’d take it out on you. As the saying goes, “What goes around comes around.” You’ve given me such a hard time over the years. You have actually made my life miserable. So now my mind is working a bit better and I can now think halfway straight again. I thought I’d give you a piece of my mind. A very small piece, as you have managed to mess with a good part of my mind already.

I’m still trying to get all my mind back. I still have bad days. “Brain Fog’” some call it. Sometimes I can’t remember how to spell a simple word. Sometimes I even forget what I’m writing about in the middle of the sentence. I just sit, looking at what I just wrote with no comprehension of what I was saying. Do you know or even care how much I’ve missed out on because of you? I have had to give up certain functions in my life because I had such a hard time remembering things. I feel like I lost so much of my memory of people and past events, and yet somehow I still miss them.

I’ve even started writing down names of old school friends, places I have been, and things I have done just to jog my memory. I cry when I can’t remember a relative’s name or something as simple as how to spell a word. This has been so frustrating. It’s downright painful at times. I wish I could make you hurt the way I do. I just want to be able to write and not misspell a simple word without having to use a dictionary for everything. You’ve taken away my self confidence. I WANT IT BACK. All of it. You had no right to take my memories. The more I write, the more pissed off at you I get. My grandchildren have to remind me of things. If not for them I’d be really lost. I’ve had to ask my 10-year old grandson how to spell a word, remind me of what I’m doing, remind me where I’m going.

Thankfully I have patient people around me. But, what about the people with nobody to remind them or who have no patience with them? Nobody should feel this lost and upset. Nobody should be embarrassed by their forgetfulness. This isn’t just old age, it is YOU. Someone else who does not have a “Mr. Graves” may not understand what I am talking about. But, there are thousands who do. Who feel the pain of losing a part of ourselves. What have you done to us ?

I forgot my name….but you know who I am

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