Tag Archives: Thyroidectomy

525,600 Minutes

11 Aug

Today marks one year since I lost my thyroid, and my cancer. 365 days. 525,500 minutes. How do you measure a thyroidless year?

Before my surgery, I was terrified of gaining 50+ pounds. I was already struggling with reduced energy, and I thought I would become non-functioning. I was afraid I would have a terrible, ugly scar. I thought I was saying goodbye to my fertility. I was worried that my voice would never sound the same. I didn’t want to end up with breathing problems that would prevent me from running. Deep down, I thought they might open me up and find more cancer. I prayed my personality wouldn’t change and I wouldn’t end up with chronic depression. I thought I wouldn’t be a good mother anymore. I thought my marriage might suffer. I was worried about my career. I thought saying goodbye to my thyroid meant saying goodbye to life as I knew it.

I thought I would never be the same. I was right.

My surgery was a piece of cake. The best decision I could have made was choosing an endocrine surgeon who does thyroids all day long. You literally have to squint to see my scar. No complications. No surprises either; he took the cancer out, and it hasn’t spread or returned. My voice sounds exactly the same. I can still sing to Mary before bed, and I can still hold private radio concerts in my car. Just last week, I got to see Coldplay, singing my cancer anthem, up close and personal. No one at the Palace of Auburn Hills was screaming louder than I was.

My surgery was so non-eventful, that I interviewed for a new job just 10 DAYS after my thyroidectomy (wearing a necklace to hide my fresh incision). Despite all odds, they hired me, and I have never been happier in my career. I’m doing something I love, and working with fantastic people.

I can still run. In fact, in May, I ran a 5K a full minute faster than I did before my surgery. My daughters don’t think any differently of me…they still like to run around outside and get really sweaty…”to look like Mom after Zumba.”

Having cancer actually made me slow down and appreciate my beautiful family even more than I did before. It forced me, the ultimate caretaker, to let someone else take care of me. There were times this year when I was overwhelmed by how much I am loved. I don’t think I would have been able to experience that without really letting my husband take the wheel. And if we decide we want to have another baby, we can. At my one-year appointment, my endocrinologist gave that choice back to me.

Over the last year, I’ve struggled to feel like myself. There have been days where I’ve slept 12 hours and still wanted a nap. I take four different vitamin supplements a day to make up for the deficiencies my thyroid left behind. And I can’t lose weight to save my life. One year later, I am 12 pounds heavier, and 25 pounds more than “normal.” I’ve tried to accept it, but I can’t. So I will keep fighting, playing around with my medication, counting calories and exercising. In the meantime, I am actually learning to be happy in my life without being happy with my weight.

So how do you measure a thyroidless year? When I measure the joy in my life against my pain, I came out ahead. I am winning the war. I am surviving. There is light at the end of this tunnel, and I know I will achieve “normal” someday. Maybe next year.

To quote Chris Martin, “You can hurt…hurt me bad. But still I raise the flag.”

I ran two 5Ks this year, and followed up one with a 2K run with Ellie.

Andy and me before the Coldplay concert in August 2012. No scars visible.

Advertisements

Dear Thyroid Doctor

22 May

Dear Thyroid Doctor,

Did you know that 25% of women will develop a thyroid condition during their lifetime? Look out into your waiting room…you will see at least 3 of these patients every day. According to the American Thyroid Association, up to 60% of those with thyroid conditions are unaware of their condition. They are coming to YOU for help. So why don’t you care?

You dismiss us. Ignore us. Pass us off to your staff members who care even less about us. You accuse us of lying, exaggerating, not trying hard enough, being clinically depressed. You alone hold the key to our quality of life, but you refuse to hand it over. You spend hours and hours diagnosing and treating other chronic diseases with the latest and greatest options. But if one 1960s thyroid drug doesn’t work for us thyroid patients, we must be the crazy ones.

Well, I’ve got news for you. The jig is up. We are smarter than you think we are. Smarter than the people you pay $10/hour to act on your behalf and deliver our “normal” test results. You can’t talk circles around us anymore. We’re not going to take it. We are banding together to expose your lack of compassion and lack of knowledge about our disease. So, unless you want to see your patient list decreased by 25%, I urge you to take this advice.

Do a little bit of research. TSH is fine for an initial diagnosis, but why on EARTH would you use a pituitary hormone as the sole marker for successful thyroid hormone treatment? Would you diagnose and treat a diabetic on their postprandial blood sugar alone? At a minimum, please check the TSH, FT4, FT3, and ALL THREE sets of thyroid antibodies. What do you have to lose? If our insurance won’t cover the tests, ask us if we will pay out of pocket. Nine times out of ten, WE WILL. We will do ANYTHING to feel better.

Please acknowledge that we are more than our lab values. Normal ranges do not apply to everyone. Talk to us about our symptoms. You are comfortable dosing an antidepressant until a patient feels better with absolutely no accompanying bloodwork. I am begging you…release us from the TSH prison!

Do not accuse us of lying about how much we eat or how much we exercise. You tell us “everyone can lose weight,” and “you just need to work harder,” and to “join Weight Watchers.” I challenge you to join me in the gym sometime. I log everything I eat into an online food diary, and I eat 1200-1400 calories a day. How much do you eat? How do you explain that I was thin before my diagnosis? Magically I started eating cupcakes all day at the exact same time my thyroid was removed? YOU need to work harder at optimizing our thyroid treatment. I assure you, it is easier than putting us on antidepressants, cholesterol drugs and insulin.

Take the time to train your staff. Frankly, they are jerks. They roll their eyes at us, they won’t answer our questions, and they have no idea what they are talking about when they deliver your messages. More and more, we are paying cash for your services. You are running a business. Accept accountability for your employees and their behavior. Hold yourselves to a higher standard. Do things right the first time. In the end, it makes less work for all of us.

Finally, explore thyroid treatment options beyond Synthroid. Synthroid alone works for very few patients…it’s like replacing an entire car with just an engine. (Sure, the engine is important, but how are you supposed to steer?) When a sick patient doesn’t respond well to one of the many antibiotics available, what do you do? You try another one. When a depressed patient doesn’t do well on an SSRI, you try an SNRI. Why are thyroid patients any different? What do you have to lose by trying a T3-T4 combination of drugs, or dessicated thyroid? Make yourself familiar with the other available options – Cytomel, Armour Thyroid, Nature-Throid, Westhroid. Consider using a compounding pharmacy. If you are concerned about the risks, then talk to us about them. Let us make that choice. But honestly, have you looked at the side effect profile for the top 5 most prescribed drugs in your practice? If you are comfortable with the risks of Zoloft, then you should be THRILLED to prescribe any of the thyroid replacement drugs.

If you partner with us in our quest for optimal health, we will be fiercely loyal to you. We will recommend you to the world. We will make sacrifices in budget to make sure you get paid on time. We will wait as long as it takes to see you, and we will greet you with a smile. So what’s holding you back? The only thing you have to lose is 25% of your patients.

My Thyroidectomy Story

13 Aug
I made it!

Here I am, two days post-thyroidectomy (with central lymph node dissection). I am feeling GREAT. I mean, almost normal! I know I need to take it easy, and I do notice that I get a bit overwhelmed easily, but that is to be expected.

I arrived at the hospital on Thursday at noon. I took two Xanax to relax, but I think I took them way too soon. They just helped me nap on the drive to Ann Arbor, and had worn off when I needed them the most. At 1:30, they took me to pre-op, and fear set in. Not about surgery, but about that darn IV. Anyone who knows me knows how I am about blood and needles (NOT GOOD). I cried a lot, and Andy distracted me. We talked about how adorable Mary is when she smiles, and that got me through the first poke. Naturally, the nurse botched the IV port, so I had to go through it all a very painful second time. That was the most painful, nerve-wrecking part of this whole process. Once that was over, I was all smiles.

Ready to go under!
Andy kissed my thyroid goodbye, and the last thing I remember is explaining my middle name to the anesthesiologist. I woke up very confused, because I saw that the clock said 5:45 p.m. That meant the surgery was really long, and I was worried about Andy and my dad who were in the waiting room. I tried so hard to stay conscious, but I just couldn’t. It didn’t really hurt that badly…I just felt nauseous and thirsty. The rest of the night was only tough because I was in a large recovery room filled with other patients, with just a curtain separating me from a very annoying fellow patient who loved the sound of her own voice. By the way, if anyone knows a 40 year-old junior high school teacher from the Tri-City area who just had a very gross, personal surgery that she loves talking about in great detail, please send her my best.

12 hours post-surgery
By 5:00 a.m., my countdown to escape began. I kept giving big smiles to the nurses and saying I was ready to get my IVs out, but every time they agreed, I would get sick and they would put me back on the disabled list. I was in a very nauseous state when Dr. G checked on me, and unfortunately, I let an error slip me by. He said he would get my Cytomel, a short-acting T3 thyroid replacement drug, instead of Synthroid, just in case I needed radiation. Before my surgery, we had already agreed that I would get a Thyrogen injection if I needed a scan or an RAI treatment. But Dr. G was already gone before I had the strength to articulate that I wanted Synthroid. I didn’t want to mess around with the ups and downs of switching meds. It took me four hours to get the Synthroid approved, and we never could get it filled at the hospital. By noon, I had enough of my talkative, obnoxious neighbor, and I basically got dressed and discharged myself. I kept my stomach empty, and took my first 125 mcg Synthroid at the Saginaw Rite Aid. My advice to others…get your meds all worked out before surgery. I should have known better!

I slept perfectly last night. I haven’t slept that well in years! I did wake up with some tingling numbness in my fingers….bad sign, and indicates low blood calcium. Dr. G told Andy that he had to move my parathyroid glands a bit. I obviously want more detail about that, but I probably won’t be able to get it until my follow-up appointment on September 6. In the meantime, I am taking six Os-Cals and two Calcitrols every day. I am all done with pain pills…I really feel fine!

Sympathy band-aids from my girls
Thank you all so much for your thoughts and prayers. I really felt them, and they certainly worked. I am well on my way to the end of this journey!


Surgery Update

9 Aug

Today was my surgery consult with Dr. G at UofM. I was very impressed and he put me at ease right away. He did a second exam and ultrasound, and concurred with Dr. E that everything in my thyroid and lymph node area looks perfect except for the only tiny spot. We discussed the pros and cons of robotic surgery, and I actually decided against it. The only real advantage would be the location of the scar (underarm vs. neck), and I should have the same recovery time with a traditional thyroidectomy. After the surgery, I will start on Synthroid (not sure of the dose yet), and will receive the pathology report five days later. After I heal, I will have to do a low-iodine diet for 2 weeks, and receive a Thyrogen injection to make me hypothyroid enough for a whole-body scan. I am excited that I can get the injection, because that means I won’t really have to go through the awful side effects of thyroid hormone withdrawl. Again, if all assumptions turn into truths, I will be back to normal in 1-2 weeks. No additional treatment necessary.

“Would you like to have the surgery on Wednesday this week?”
“Uh, that’s tomorrow.”
“Okay, we can do Thursday.”

So, here I am. I have one day to wrap up things at work, do all my laundry, plan and shop for Mary’s 2nd birthday, get groceries and finish all my medical paperwork.

Wish me luck!

Surprise! Point C.

27 Jul

I spoke with Wendy at U of M this morning. Point C is a little closer than I thought. Dr. G (the surgeon I really, really wanted) had a cancellation, and she can get me in for a consult on August 9. Hooray!

Oh wait. That means my surgery is the week of August 15.

I was a bit apprehensive at first…I had settled in at Point B and was ready to park it for awhile. But let’s just get this thing over with so I can move on with the rest of my life!

I am choosing to believe that this surgery will be no big deal at all. Dr. G has all of the latest robotic surgical equipment at his fingertips, and does nothing but thyroids all day. Mine will be totally routine to him. My recovery time will be 1-2 weeks, and I’m not going to have any complications. The pathology report will match all of our presumptions thus far.

Point C, here I come!

My Voice in Pictures

29 Jun

Dear Surgeon,

I may seem neurotic to you. I understand this is a pretty low risk surgery. However, 28% of patients experience voice changes after a thyroidectomy. I need to be in the other 72%. Capice?

Maybe you need to understand me better. No, I am not a professional singer. In fact, I don’t even sing that well. But that’s irrelevant. It’s what I like to do, and I would appreciate you not taking that away from me.

While you perform my surgery, there are a few images I would like you to have in the back of your mind. My voice in pictures, if you will.

When I was a little girl, I demanded the spotlight at family Christmas to perform the entire Annie album.

In high school, I belted out “Spanish Rose” in “Bye Bye Birdie.”
In college, I was the Mock Rock queen. And although I was only lip synching in the performance, I screamed the lyrics during the winner’s encore.
Did I mention how many times we won first place?
I need to be able to sing at venues that don’t even offer Karaoke, as I did during the summer of 2002.
I have big plans to once again hit the stage in Vegas with a live band to perform “Hit Me With Your Best Shot.”
Coldplay is releasing their new album. Do you think I am going to stand for not being able to scream “YEAH!” after Chris Martin asks, “How long must you wait for it?”
Yeah…there’s no way I am letting you take away my ability to scream.

So write yourself a note, or do whatever you have to do.

Sarah Young is in the 72%.

Thanks.