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.

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...)

September

September is Thyroid Cancer Awareness Month. I was planning on giving you all kinds of statistics that show how the incidence of thyroid cancer is on the rise and kills thousands of people every year. But, I decided that numbers don't necessarily increase awareness. So, I'm just going to tell my story instead.

On October 8, 2008, I wake up with an ache in my neck. I feel a huge lump at the base of my neck. I immediately call my mom and she makes an appointment for the next morning with my GP. After that appointment I go to have an ultrasound. Later that day, I get a call from the doctor's office with the results of my ultrasound--three nodules on my thyroid. I am referred to an endocrinologist. The endocrinologist schedules me to have a biopsy with another doctor in his office. I lay on a patient bed with my feet higher than my head in a tiny room that is so hot I am ready to strip off my clothes. The nurse cleans my neck. The doctor comes in. I am nervous. He pours a local anesthetic onto my neck. It feels weird, cold. It doesn't work very well. Maybe the doctor knew it wouldn't and is just trying to trick my brain. He sticks a needle into my neck seven times. It hurts. Bad. It feels like he is trying to push my thyroid through my spine and out the back of my neck. A few days later, I receive a call from the doctor's office. I have to come in to get the results. I know it's bad. I call my mom and break down. When I hang up with her, I move to the couch and sit there and sob for a long time. The next day, the doctor tells me what I already know. Thyroid cancer. I have another ultrasound to check the lymph nodes in my neck. On November 5, I have my entire thyroid removed as well as the lymph nodes in the central part of my neck. The cancer has spread to most of those nodes. After surgery, I have radioactive iodine to kill off any remaining thyroid tissue in my body. With no thyroid, I begin depending on a couple little pills to live. My life is forever changed.

So check your neck. Know what your neck feels like so you will know if something is different. Next time you are at the doctor, ask him or her to check your neck. Be aware.

photo from www.lightoflifefoundation.org

a word about hope

It's been awhile since my last post (Sorry, Cteve). I decided to take a little break to focus on myself (wow, that doesn't sound selfish). But, now I am back!

I read a good bit of cancer information--stories, research, etc. I am in the process of reading a book that has captured stories of various cancer patients. One of these people stated that trying to hope while fighting cancer became too exhausting, and so hope was abandoned.

Hope. Exhausted. Abandoned.

This absolutely broke my heart. Hope is not supposed to be exhausting. Hope is supposed to be comforting. If you are exhausted by hope, you are hoping in the wrong thing. Hope in Jesus is satisfying. I'm not trying to preach here, I just want you to know that if you are tired of hoping in something that leaves you unfulfilled, you can find something new and refreshing in Jesus. I'm telling you because I know. It's been almost a year since I found out I have cancer. This year has been one of the hardest in my life. But I have hope. And my hope has kept me going, not tired me out. That so many people go through life with a hope that leaves them exhausted is heartbreaking. Know that it does not have to be that way for you.

Dear Thyroid

Dear Thyroid(TM) is a forum that allows patients with thyroid ailments to write, among other rants and raves, letters to their thyroids. It sounds kind of weird, but it's a great outlet to let go of any anxiety, anger, or sadness you may be harboring. Friends and family are also welcome to send in letters addressed to the sick thyroid of their loved one. They can also send in a letter of gratitude addressed to their own healthy thyroid. I recently submitted a letter... stop by their site and read more about them. And while you're there, you can read my letter. :)

World Thyroid Day

Today, May 25th, is World Thyroid Day. If you are a woman, you know that you should conduct a monthly breast exam. But did you know you should also conduct a monthly neck exam? According to the CDC, thyroid cancer is one of the ten most common cancers among women. Check your neck. (Men, that goes for y'all, too!)

scartracker [6 months post-op]

May 5th marked 6 months since my surgery! You probably don't care about these pictures, but I like seeing how my scar changes from month to month. :)

six month update

Exactly six months ago today I was sitting in the doctor's office with my stomach in my throat. I knew what was coming, but exactly six months ago today, my doctor looked at me with pain and sadness written all over his face and told me I have cancer. I don't think I will ever forget his expression. His compassion at that moment continues to reassure to me that he is a blessing from God. He has never said anything stupid. He never told me this was going to be easy. In fact, he said it was going to be hard. He never told me that I had the best cancer there is. He never told me that being hypothyroid while preparing for radiation was going to be fun. He never told me I was on my own to figure out the best treatment for me. He has always been in control of the situation and has never seemed to lack confidence. He is optimistic that I will be cured. He is realistic that this is not over yet. He listens to me instead of just looking at my labs. He is willing to make adjustments to my medication if I need him to. He genuinely cares about me and I love him for it.

Today I had a check-up and my doctor had a very different story to tell than six months ago. My TSH level is where it needs to be and my thyroglobulin (tumor marker) level is undetectable. Does this mean I am cancer free? No, but it does mean I am headed in the right direction and that my treatment to date has been effective. Is it reason to praise God for getting me this far? Absolutely.


**Just a clarification regarding the previous post. I don't want anyone to think I stay in bed all day crying my eyes out. I don't. I am actually in a really good place. I was able to write that post because I am in a good place. Yes, I go through a lot mentally and emotionally some days, but who doesn't?

confessions of a cancer patient

I might look strong on the outside, but on the inside I am fighting a constant battle against fear. Most days I win. Some days I lose, and those are bad days.

I don't always know how to fit in because sometimes I think most people don't understand me anymore.

If one more person tells me how glad they are that this is all behind me I might scream. Because it's not behind me. I know they mean well, but it's still a very real thing. So cut out all that past-tense crap and help me fight the battle I'm facing today.

Don't tell me that thyroid cancer is the easy cancer or is the best cancer to get. I KNOW that my treatment has not been as physically harsh as other cancer patients'. I KNOW that I am fortunate to not have had the need for chemotherapy. I KNOW. I don't need you to tell me, because even though I haven't had to deal with the horrible side effects of chemo or external beam radiation, there is nothing easy or good about this cancer.

When I was first diagnosed with cancer I was bombarded with people who rallied around me. It's only been six months, and so many of those people are gone. That hurts. (If you're reading this, I'm probably not talking about you!)

I may sound like I'm looking for pity, but I'm not at all. I'm just looking for support.

I don't want cancer, but having cancer has changed me to the very core, and I know God is going to use this for something great one day. He's good like that.

Cancer with benefits

Apparently, having cancer in America entitles you to special economic stimuli. A few weeks ago I received a discount card in the mail that I can use any time I rent a car from Hertz. Just knowing that I can get a deal on a rental car helps me rest easier at night. Except I am too young to rent a car from Hertz. But let me tell you, come October 3rd I am headed straight to Hertz, using my cancer discount card, and driving my worries away.

Happy Easter

Hope. A word I have heard all my life. A word I use all the time.
"Hope to see you soon."
"Hope you do well on your test."
"Hope you can get some rest."
"Hope you don't get stuck in traffic."
"Hope you win the lottery." :)
"Hope you feel better."
Hope. A word I never really understood until I was diagnosed with cancer. Hope is nothing unless it is hope in Jesus. Hope in Jesus is real. It is life. It is what gives me rest at night and what gets me out of bed in the morning. It sustains me the few days before a check-up when gut-wrenching fear threatens to creep in. It conquers fears. It brings peace. Hope in Jesus Christ because He defeated death and rose from the grave. Hope because He lives. Hope because His power is not limited by cancer.

scar tracker [five months post-op]

firebreather: long-term effects of radiation

I got to see the Discovery shuttle launch (from afar) when I was in Florida over spring break. It was really cool and was clearly an excellent photo opportunity. :o)

scar tracker [four months post-op]

doctor's office etiquette

The day I went to the doctor to have him tell me I have cancer there was this insanely annoying woman in the waiting room. She was talking on her cell phone in an extremely loud voice. And she.would.not.shut.up. I'm sitting there with my stomach in my throat about to puke my guts out because I know what the doctor is about to tell me, and Chatty Cathy is over there talking about what she had for lunch. I wanted to take her precious cell phone and cram it down her throat. But I didn't. And eventually, after the nurse called her name multiple times (Chatty C. couldn't hear the nurse over all the loud talking), she went back to see the doctor and I no longer had to listen to her obnoxious phone conversation. So, next time you're at the doctor, out of respect for that girl sitting across the room consumed with dread and anxiety over what she is about to hear, mind the sign posted at the door and turn off your cell phone.

pray for this sweet little boy

I don't know how I came across this family's blog, but go check it out and pray for their adorable little boy.

i am privileged.

Thank the good Lord that I don't have to deal with this. I don't want to make this a political blog, but this is one of the reasons I am glad we don't have socialized medicine.

Scar Buddies!!

That's what they'll call us!!!!!!

Did I ever tell you...

Did I ever tell you that after my thyroidectomy my voice was terribly messed up? It wasn't just like a scratchy, I lost my voice kind of messed up. My vocal cords/vocal cord nerves got damaged and my voice was about five octaves higher than normal. Seriously...I'm not exaggerating. My brothers called me Michael Jackson. I sounded like a 5 year old girl. It was like that for six weeks, and then one morning I woke up and my voice was miraculously back to normal.

Thought you might enjoy that tidbit of information.

retail therapy

(note: you should really listen to this song while reading to have an optimal blog experience)

A new friend and fellow thyroid cancer fighter suggested that I engage in a little retail therapy. She told me to go buy some new shoes, shoes that I typically wouldn't buy. It's really not hard to convince me I need some new shoes, and I was going to Kohl's anyway, so I figured I would take a stroll through the shoe department. I found some on sale that were cute and it was a pair that I would not typically buy...I usually buy monochromatic shoes. But I bought them and when I wear them I feel good, rendering this particular session of retail therapy successful.



If you do not have at least one pair of colorful, exciting shoes then I really recommend you buy some. Life is too short to spend every day in boring shoes.

three months post-op

This past Thursday marked three months since my surgery. My scar has changed quite a bit in the past month, don't ya think?

3 months:

2 months:

the "easy" cancer???

When I was first diagnosed with cancer I had many people tell me that thyroid cancer is the easy cancer...if you had to get cancer, this is the kind to get. Medically speaking, maybe that is true. Some of the variants of thyroid cancer are very easy to treat. That does not make this an easy cancer. There is nothing easy about going through any of this...it's a beast I have to face every single day. So, some advice--never tell anyone that they have an easy cancer, because having cancer is never easy.

Check your neck...Change your life

It's thyroid awareness month! Go to this website and learn how to check your neck.

before the rain there was sunshine

This is what the calm before the storm looks like:



The weekend before this whole thyroid cancer ordeal started my family and I celebrated my 24th birthday. It was so much fun and so carefree. We truly experienced a calm before a nasty storm. I am grateful for that weekend. I really think it was a gift from God, that He was reminding me of all the good things in my life so I could have something to hold onto as I go through this terribly scary time in my life. As my mom told me, it's a good thing we can't see our future because it would freak us out.

You can see the tumor on my thyroid in that last picture. It might be hard to see if you don't know what you're looking for, but it's that lumpy thing at the base of my neck. If that grosses you out, just don't look. :o)

for my best friend

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the Lord forever, for the Lord God is an everlasting rock." Isaiah 26:3-4

two months post-op

It's been two months today since my surgery. Here's a two month post-op picture of my scar...it matches my shirt:

I was thinking about how fast things have happened the past few months, so I thought I would make a time line so I wouldn't forget all that has occurred. Here's the abbreviated record of all my doctors visits and such:

October 8: I woke up and felt the lump on my neck.
October 9: I went to my general physician--he thought the lump was just a cyst, but referred me to a specialist; I had blood work and an ultrasound; the GP's office called back with results of the ultrasound--I had a 2cm nodule on the left lobe of my thyroid and two smaller nodules on the right lobe.
October 10: The GP called with the results of my blood work--I had an increased level of thyroperoxidase antibodies, indicative of Hashimoto's thyroiditis.
October 14: I met with the endocrinologist, Dr. S. He also thought the nodule was a cyst and agreed that I probably had Hashimoto's thyroiditis. He still wanted me to have a biopsy.
October 16: I had the biopsy which was performed by another endocrinologist in the same practice, Dr. O. Based on the ultrasound images seen during the biopsy, Dr. O said it was not a cyst.
October 21: The endocrinologist's office called and said I needed to come in to meet with Dr. S to get the results of my biopsy. (I immediately knew it was cancer.)
October 22: I met with Dr. S and he told me I had cancer and needed my thyroid removed. He referred me to a surgeon.
October 29: I had a careful neck ultrasound to see if any lymph nodes on the sides of my neck needed to be removed. The radiologist said that only the nodes in the front of my neck near my thyroid needed to be taken out.
November 4: I met with the surgeon for the first time.
November 5: I had a total thyroidectomy and central lymph node dissection.
November 7: After struggling with hypocalcemia the previous day, I was released from the hospital.
November 10: I went to the endocrinologist's office for blood work
November 11: I met with the surgeon for a post-op evaluation. He had the pathology report, which showed I did have papillary thyroid cancer and it had spread to 10 of the 13 lymph nodes removed.
November 13: I met with Dr. S. He had the results of my blood work and said my TG level was low. He was ready for me to prepare for radiation, which meant a low-iodine diet and stopping my Synthroid so my TSH level would reach 30.
November 20: I went to the endocrinologist's office for blood work to check my TSH level.
November 24: A medical assistant from the endocrinologist's called and said I was ready for radiation--my TSH level was 38.
November 28: I went to the hospital to take my radiation. I received 150 mCi of I-131 in the form of two capsules. I swallowed them, then went home where I was in isolation for a week.
December 7: I went back to the hospital for my whole body scan.
December 9: A medical assistant from the endocrinologist's office called and said I had residual thyroid tissue in my neck, but no metastases.
December 23: I went back for yet another round of blood work.
December 30: I met with Dr. S who said my TG level has dropped about 25%. He increased my dosage of Synthroid from 100mcg to 137mcg.


It's hard to believe all this has happened in less than three months. But, at the same time, I am very glad that my treatment has moved along so rapidly. Thank you, Jesus, for giving me such awesome doctors!

"The Lord gives me strength and a song. He has saved me." Psalm 118:14

Health Update

I went to my doctor for a check-up on Dec. 30. All went well--he was optimistic and felt good about how things are progressing. My TG (the cancer marker) level decreased from the previous month by about 25%! This means the radiation is doing its work. The doctor decreased my calcium from 3000mg a day to 1000mg a day and he is also weaning me off of the Rx strength vitamin D I've been taking. Please pray I don't become hypocalcemic again. The doctor also increased my dosage of Synthroid. Praise the Lord! My TSH level was 19 (definitely in the hypothyroid range) and he wants it to be 0.3. Hopefully with this increased dose I'll start feeling less tired soon. I go back in two months for more blood work and another check-up.

All this typing has tired me out. I'm moving to the couch.

Exterior illumination: a mishap?

Well, I didn't get a picture of the reindeer in the tree, but I did snap a picture of another neighbor's Christmas lights. (Neighbor: if you are somehow reading this blog I am sorry if I have embarrassed you, but please make necessary adjustments next year. The candles in the windows, however, looked very nice.)


Please pay attention to the bushes to the right of the stairs. If you find nothing amusing about these, then you do not have a perverted sense of humor like my family and I do. Kudos to you, but you're missing out on some laughs.