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Finding Normal

26 Dec

I have been waiting for three years to write this blog. As we close the year, I am celebrating FINALLY achieving the New Year’s Resolution that I have had since 2009. I have achieved normal.

After my thyroidectomy, I tried everything to relieve my hypothyroid symptoms. Based on all my research, I believed natural thyroid hormone replacement would be the answer I was looking for. For a majority of people, Armour Thyroid or NatureThroid is all it takes to resolve the symptoms of weight gain, dry hair that falls out, exhaustion, depression…(the list goes on). I had the opposite experience. Coming off of my stable dose of Synthroid put me in an uncontrollable tailspin. A year later, once I finally gave up control and went back on 125 mcg Synthroid + 5 mcg Cytomel (as my endocrinologist prescribed), I stopped the tailspin. But could I ever recover the “normal” that I lost so long ago?

Over the course of my journey, I have tried many weight loss strategies, including strict calorie counting, vigorous exercise, the elimination of wheat and the elimination of dairy. Absolutely nothing worked. Imagine my devastation as I found myself 20 pounds heavier from all of my medication changes. Even after stabilizing on Synthroid/Cytomel, starving and working out like a crazy person, the best I could do was a 3 pound weight loss over 8 weeks. I believed I was doomed to live a life avoiding pictures and mirrors. I would never feel comfortable again. I would not be able to shop in my favorite clothing stores, and I would never be excited for a dressed-up event ever again. I started every morning on the scale, filled with shame and dread. I went to see my holistic doctor one last time in desperation.

She prescribed the HCG diet. It’s controversial, it’s really hard, and it probably isn’t a good idea for someone who wasn’t already committed to doing whatever it takes. But it literally changed my life in just one month.

  • Phase 1 (2 days): Daily HCG injections and eating a “loading” amount of high calories and fat
  • Phase 2 (23-30 days): Daily HCG injections and eating only 500 calories a day…no sugar, no starch, no dairy, NO DIET SODA
  • Phase 3 (21 days): No HCG injections, 1500 calories a day, no sugar, no starch
  • Phase 4 (life): Slowly add back starch and sugar

I lost 9 pounds my first week. I am currently in Phase 3, and I am down 18 pounds and 14 inches. It was pretty hard, especially during the holiday season. But the quick results made it much easier to adhere to to the strict diet. The HCG reduces hunger and weakness, but I did have to temporarily postpone my workouts. I did a few TurboKick sessions that made me feel like I was going to pass out. That was really the only “con.” Critics say that anyone would lose weight by eating 500 calories a day. However, I was literally burning more calories than I was consuming during my low-iodine diet, and I didn’t have any noticeable weight loss at all. As for regaining my lost weight, I am confident that I will maintain, because I was already in the habit of watching my calories and exercising.

Before: My heaviest weight ever, exhausted and riddled with hypothyroid symptoms. After: Lower than my pre-surgery weight, happy and healthy!

Before: My heaviest weight ever, exhausted and riddled with hypothyroid symptoms. After: Lower than my pre-surgery weight, healthy and happy!

Because my thyroid medication is now stable, I feel very normal. My hair and skin look better than ever. I sleep great and I have plenty of energy to get through the day. Before my thyroid cancer diagnosis, I would not be happy with my size 8 pants. I would still be beating myself up and trying to fit into my wedding dress from 2002. Not this time. Today, I celebrate my healthy BMI, my comfortable jeans and my favorite Coldplay T-shirt. This Christmas, I posed for as many pictures with my family as my children would tolerate. I found normal. And I am never going back.

Christmas 2012 - enjoying my normal hair, my comfortable clothes and my wonderful family

Christmas 2012 – enjoying my normal hair, my comfortable clothes and my wonderful family

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Letter to Dr. Jennifer Ashton

1 Dec

Recently, Brooke Burke-Charvet was diagnosed with thyroid cancer. Shortly after the news was released, Dr. Jennifer Ashton spoke about it on ABC News. Naturally, she said, “patients will do incredibly well…it will not affect her life.” I was annoyed, but not surprised. I reached out to Dr. Ashton via Twitter, asking her to refrain from dismissing the difficulties of thyroidless life. Many of my fellow thyroid cancer survivors friends did the same. It is Dr. Ashton’s Facebook response to us that has me infuriated. Here are the condensed highlights:

Here is my official response to the plethora of inaccurate, vicicous, hurtful and reactionary comments made following my segment on Brooke Burke’s recent diagnosis of thyroid cancer:

I am a practicing physician, who actually takes care of patients. Therefore, on a daily basis, I am involved in patient care, rather than trolling social media. 

 Perhaps many of those who were irate at my saying thryoid cancer is ‘good’ should go back and rewatch my segment. AT NO TIME DID I UTTER THOSE WORDS. IN FACT, BROOKE BURKE HERSELF DID, IN QUOTING HER ONCOLOGIST.

I would consider it incredibly poor form to mention any ominous, negative, skeptical, frightening, or discouraging comments about her disease on national television. She bravely brought her diagnosis to the public and it was my hope to ENCOURAGE those fighting the disease.

As an Ivy-League educated, Board-certified physician in Women’s health, (as all physicians do) I have been formally educated and trained in treating the entire patient, not just a body part. That is why medical school is four years and residency is four years. We learn the ENTIRE body, not just one specialty. I have patients with ALL types of cancer, including thyroid cancer. 

This journey has made me strong. But not strong enough to sit back and let her call thyroid cancer survivors vicious social media trolls. My letter to Dr. Ashton follows.

Dear Dr. Ashton,

I was very sorry to hear that one of my fitness idols, Brooke Burke-Charvet, was diagnosed with the disease that ripped my body apart. When I saw her video blog, I pitied her…I remember thinking I had “good cancer” too. And who told me I had “good cancer?” My stupid, stupid doctor. And why did my doctor say that? Because the pervasive thinking in the medical community is: “Outcomes are everything. Thyroid cancer doesn’t kill as many people as some other cancers. Quality of life post-surgery is not really a problem.” Guess what? It’s a HUGE problem. But since most doctors are unsympathetic, our problems are brushed off as imaginary, self-inflicted or exaggerated.

When you went on national television and said, VERBATIM  “patients will do incredibly well…this will not affect her life,” I thought, what a waste of an opportunity to set the record straight about thyroid cancer. Instead, our doctors, employers, family and friends will continue to feel justified as they condescend us and blame our thyroidless symptoms on other things. So I reached out to you in hopes you would recant your statement and at least acknowledge that while thyroid cancer has an excellent prognosis in terms of life expectancy, that life can be quite altered. Instead, the entire thyroid cancer survivor community was called names and further dismissed in our fight for true awareness.

I get why you are defensive. You should be. You are very, very wrong. It is not your words that we are most offended by, it is your attitude and beliefs about cancer patient care. We do not wish to be lied to for purposes of encouragement. It would be very encouraging to me to have a doctor confirm that I am not crazy and that my symptoms are real, and are to be expected after a thyroidectomy. Instead, I was supposed to go back to “life as usual,” so I must have suddenly come down with a case of obesity, depression, high cholesterol, high blood pressure, chronic fatigue, hair-falling-out-in-clumps, shaky-hands syndrome. If I had not connected to the wonderful community of thyroid cancer survivors whom you categorize as “vicious,” I would believe I was all alone. I might be focused on correcting my plethora of new health problems with additional, unneeded medications instead of focusing on optimizing my thyroid medication and the new lifestyle it requires. All you had to do was say,” I apologize if I offended those who are battling this chronic disease.” Instead, you had to throw your Ivy-League education in our faces, as if that qualifies you to know more about our daily lives. (P.S. “Vicious” is not spelled with an extra “c.” You spelled “thyroid” wrong. And “re-watch” is hyphenated. But what do I know? I only went to a lowly little college in Middle America.)

I hope with all my heart that thyroid cancer will not affect Brooke Burke-Charvet’s daily life as much as it has mine. But in case it does, I hope she will connect to doctors and fellow survivors who can give her the real encouraging words she needs: “You are beautiful. You are tough. And while your thyroidless life will be different, it can still be great.”

Sincerely,

Sarah Young, Thyroid Cancer Survivor

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Surrender

19 Oct

It’s been two whole months since I’ve blogged. During those two months, I have been on a self-imposed hormonal roller coaster.

Remember how I said I couldn’t give up on losing weight and achieving “normal?” Since my thyroidectomy 14 months ago, I have tried the following thyroid replacement medication combinations:

  • 125 mcg Synthroid alone
  •  90 mg Armour Thyroid
  • 112 mcg Synthroid alone
  • 112 mcg Synthroid + 5 mcg Cytomel
  • 125 mcg Synthoird + 5 mcg Cytomel
  • 125 mcg Synthroid + GTA Forte supplements
  •  125 mcg Synthroid + 10 mcg Cytomel
  • 65 mcg Nature-Throid alone
  • 97.5 mg Nature-Throid alone
  • 65 mg Nature-Throid + 25 mcg Synthroid

Do you know when I felt my best? I felt the most “normal” on the very first dose of medication – 125 mcg Synthroid. I have spent the last 14 months in a complete state of panic, distrusting my doctors, self-medicating, and fending off impending weight gain. And as a side effect of all of my medication changes, I created the very thing I feared – weight gain. My latest conquest was switching to Nature-Throid. It took me MONTHS to find a doctor who would prescribe it. I worked so hard to stabilize my vitamin and iron levels first and I did everything by the book. And similar to my experience with Armour Thyroid, my body completely crashed, I started having extreme hypothyroid symptoms and I gained five pounds. Interestingly, my TSH stayed low at 0.43, but my FT4 was only 0.6. (Side note: this completely proves that you can be hypothyroid with a low TSH!) I tried upping my dose of Nature-Throid only to be greeted with extreme sweating and anxiety, and three more pounds. Then I tried combining a smaller dose of Synthroid with a smaller dose of Nature-Throid…all to no avail. Two weeks ago, in a fit of tears, I switched back to my old regimen: 125 mcg Synthroid + 5 mcg Cytomel. I am watching my calories very closely and burning at least 2000 calories a week through exercise, and so far, I have managed to lose five of the extra eight pounds I gained. I am beginning to feel better and most of my other symptoms are fading away. I also started taking Raspberry Keytones supplements, and I have no idea whether or not they are helping, or whether it’s the thyroid medication.

What I do know is that I have officially surrendered control. I am not a doctor and maybe I really don’t know what’s best when it comes to my thyroid replacement medication. As per usual, I took “being informed” into the extreme of being counter-productive. What if I had never messed with my medication at all? I may have been able to maintain my weight after surgery. The extra Cytomel would have resolved my lack of energy, and I could have been “normal” by now. Instead I endured 14 months of fighting, second-guessing, feeling good, feeling bad, losing sleep and gaining weight. So if this experience was supposed to teach me something, I suppose it did. My UofM Endocrinologist really is a good doctor. The first time I saw her, she told me the first year would be hard, that I might gain weight, but after a year, things would level out. At the time, I refused to accept that in my brain. My body, however, did exactly as she said it would. Before I switched to Nature-Throid, I was genuinely feeling good. Perhaps I was just about to turn a corner before I stepped in with my control issues and screwed it all up.

Can we pretend the last two months never happened? I promise I will behave this time.

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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.

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Cancer-Free…I Guess.

19 Jul

Today was a very, very long day at U of M. I was really hoping to announce “100% CANCER-FREE!” after my scan. Instead, what I can say is: nothing overtly bad showed up on my scan, and it’s up to me if I want to do any further treatment.

Let me explain…

When most people have papillary thyroid cancer, they follow the protocol below:

  • Total thyroidectomy
  • Medication withdrawl and low-iodine diet
  • Radioactive Iodine Ablation (RAI) for any remnant thyroid tissue (normal or cancerous..it all gets destroyed)
  • Follow-up whole-body scans to look for iodine uptake. Since all thyroid tissue should have been ablated with the RAI treatment, any uptake would be deemed “bad.” No uptake would get a gold “cancer-free” star.

Well, naturally, when I was diagnosed, I weighed all my options and I was not satisfied with the risks associated with the average protocol. I based my decision on the American Thyroid Association Guidelines for Thyroid Cancer Treatment. So my protocol looked like this:

  • Total thyroidectomy
  • Very long wait for Thyrogen injections so I didn’t have to endure medication withdrawl
  • Low-iodine diet and whole body scan
  • Follow up with ultrasound and bloodwork

Today, I had three total scans. The first two were 20 minutes each. I went in feet first, and I wasn’t restrained. I popped two Xanax, focused on my music and I was fine. Afterwards, I met with Dr. W, the nuclear medicine doctor. He said he was concerned about the level of iodine uptake he saw on the first scans, and he wanted me to do 3D image followed by a CT scan. He made it clear that he thought I should have done RAI in the first place.

Hysteria ensued.

I really couldn’t hold myself together. I became irate. I couldn’t stop crying. After waiting for another full hour, I got back on the scan table. This time, they had to restrain me and strap me in. I was told I was not allowed to move. Tears were streaming down my face and I felt like I couldn’t breathe, so I popped another Xanax. I sound like a drug addict, I know…but look at what they did to me! You would need prescription-grade relaxation too!

The nurse acted like I was crazy for needing my iPod. I am so glad I ignored her. I desperately needed it to cope!

After 40 minutes in this God-awful contraption, I got additional information. Dr. W said the iodine uptake was probably normal remnant thyroid tissue that my surgeon left behind. This happens frequently and is nothing to worry about. There was nothing abnormal in my lymph nodes, lungs or liver (where thyroid cancer frequently spreads). However, since he is a nuclear medicine doctor, he thinks I should just do RAI to ablate all the remnant thyroid tissue, whether it is normal or not. This would in no way improve my outcomes, and would not even guarantee that I wouldn’t have a recurrence. But it sure would make the nuclear medicine doctors’ diagnostic job a lot easier.

Dr. W acknowledged that there is good data on both sides of the RAI decision, and left it for me to discuss with my Endo, Dr. E, next week.

So what can I tell you? I have no bad news. And that, my friends, is good news.

Now, I’m off to eat dinner. I have a serious cheese deficit to make up for.

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Thyroid Cancer Scan Playlist

18 Jul

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Tomorrow is the big day – my first thyroid cancer whole-body scan. In true fashion, I am more worried about having to be in a small enclosed space than I am the actual results. I am pretty claustrophobic and I HATE needles and blood, so I am not exactly a dream cancer patient.

I have created a playlist for my iPod to help me zone out. All of these songs have special meaning for me, but most are relate-able for fellow thyroid patients.

Every Teardrop is a Waterfall – Coldplay. I am a huge Coldplay fan, and this is my cancer anthem. Maybe I’m in the black. Maybe I’m on my knees. Maybe I’m in the gap between the two trapezes…

Running to Stand Still – U2. Throughout this whole experience, I always feel like I am running to stand still. Besides, this song has one of the best Bono “Ooooohoooo” choruses ever.

Under the Stars – Morning Parade. This is just my favorite song right now. I love to crank it in the car on a warm summer night. Happy place.

Grace Like Rain – Todd Agnew. Usually I like to keep my Christianity and my music separated, but this song is my exception. I have a spiritual experience every time I hear it. It heals me.

Just Like Heaven – The Cure. This is a timeless, great song. One of my all-time favorites. It puts me in a good mood no matter what is going on around me.

Friday Night Lights Theme. I am not in this giant tube. I am in my favorite chair eating ice cream and Friday Night Lights is about to start. There’s Coach Taylor. And Tammy. Matt Saracen. And Julie. Jason Street and Lyla Garrity. And then finally Tim Riggins. Clear Eyes. Full Hearts. Can’t Lose.

In Your Eyes – Peter Gabriel. My favorite movie is Say Anything. It’s been my favorite movie since 8th grade. Is there any happier place than Lloyd Dobler and a boombox?

#41 – Dave Matthews and Tim Reynolds Live at Luther College. Before there was Coldplay, there was Dave Matthews Band. I was obsessed. Two seconds after this song begins and I am back on CMU’s campus, drinking a Bud Light and laughing.

Rearviewmirror – Pearl Jam. Before Dave Matthews, there was Pearl Jam. It’s time to leave my thyroid cancer in my own rear-view mirror.

Breathe Me – Sia. This song was in the Six Feet Under finale. I didn’t even like that show that much, but the finale really moved me. I remember telling Andy that moments in our lives pass too quickly and we will grow old before we know it. I was so, so right.

Fix You – Coldplay. I sing this song as a lullaby for both of my girls. It’s an amazing song. And I, too, have lost something I can’t replace.

Alive and Kicking – Simple Minds. That’s right. I’m still here. Alive and kicking.

Since U Been Gone – Kelly Clarkston. Ode to my cancer. The night before my thyroidectomy, I drove around my neighborhood and belted out this song, just in case I wouldn’t ever be able to hit the notes again. Guess what? I still can.

The Sound of Settling – Death Cab for Cutie. After three weeks on this low-iodine diet…I have a hunger twisting my stomach into knots…

Stop for a Minute – Keane. This is a song for my over-analytical inner-self. Sometimes I feel like it’s all been done. Sometimes I feel like the only one. Sometimes I wanna change everything I’ve ever done. I’m too tired to fight and yet too scared to run. And if I stop for a minute…I think about things I really don’t wanna know…

Lost? – Coldplay. I have to end my scan reminding myself that just because I’m losing, doesn’t mean I’m lost. And just because I’m hurting, doesn’t mean I’m hurt.

The U of M nurse told me that if the nuclear medicine doctor gets a good scan tomorrow, I can skip Friday’s scan. Here’s to hoping I get the all-clear and I can order a giant Starbucks caramel macchiato by tomorrow afternoon!

Want to buy this playlist on iTunes? You can get it here.

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LID: Week Two

13 Jul

Here I am – Day 12 of 19! By this time next week, I will be able to eat whatever I want. Surprisingly, I am finally starting to get into a groove and I don’t feel achy and starving anymore. I have also gotten a lot more creative since Week One.

Strawberry-Banana Smoothies – my new breakfast! I make my own, but also have found that the Tropical Smoothie Jetty Punch is LID-safe.

Hummus is one of my favorite foods…and I learned to make my own! I used dried garbanzo beans, imported tahini, lemon juice, olive oil and garlic.

What’s hummus without homemade whole wheat pita?

I even borrowed my mother-in-law’s breadmaker and made some french bread! It came out pretty well…I use it for natural unsalted peanut butter sandwiches.

I am still using MyFitnessPal to make sure I don’t overeat. Since I feel so deprived, I am worried that I will binge out on the foods I can have. This is the best I have ever eaten in my life. Here is what my food intake looks like:

Week One: I was right at an average of 1200 calories a day.

Week Two: I am averaging well under 1200 calories a day. In the old days, I would be so skinny!

I have lost two pounds, but I feel like they could come back at any moment, so I don’t know if I should count them yet. I also got my pre-scan bloodwork back and it is as follows:

  • TSH: 0.04 (I am sure Dr. E will try to take me off of Cytomel)
  • FT4: 1.1 (I would like it to be a little higher)
  • Thyroglobulin (tumor marker): <0.02 (I think that counts as undetectable, which is good!)

I see Dr. E on July 24 to get my scan results. I am preparing myself for the “you are on too much Synthroid” conversation. I may need to meditate on the drive down so I don’t scream at her. I have decided that if I clear this scan, I am going to have my holistic doctor, Dr. L, manage my thyroid replacement medication. Dr. L already started me on monster iron pills (Ferrex) and B-12 injections that have made a huge difference. My only remaining struggle is losing weight, and I will try ANYTHING to make that happen. If that means staying off dairy even after my low-iodine diet is over, then hold the cheese, please!

Even though I am obsessively focused on the way thyroid cancer has affected my appearance, I am also anxious to get the “all clear” from my scan next week. The last thing I want is more surgery or the dreaded radiation treatment. I really appreciate your prayers! I will update you after my week-long U of M “vacation.”

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LID: Week One

5 Jul

My first whole-body scan for thyroid cancer is scheduled for the week of July 16. It’s five-day party at U of M. What a great summer vacation!

Day 1: Thyrogen injection to artificially raise my TSH

Day 2: Second Thyrogen injection

Day 3: Drink tracer dose of radioactive iodine

Day 4: First hour-long body scan (pass the Xanax!)

Day 5: Second hour-long body scan (pass the Xanax again!)

In preparation for my scans, I have to be on a low-iodine diet (LID), which began on July 2. Four days down, 15 more to go. It sucks. Really, really bad. Those of you who know me know that I am an extremely picky eater. And all my core foods are now forbidden. As a reminder, the crappy low-iodine diet rules are:

  • No dairy at all (cheese is all I think about).
  • No bread unless I bake it myself with no-iodine salt (that’s not happening).
  • No soy (so no protein shakes).
  • No restaurant food at all (I get takeout A LOT).
  • Very small amount of meat, and no seafood.
  • Nothing that has natural iodine content, like the skins of potatoes and spinach.

Here is how I am surviving:

Breakfast: Cream of Wheat and black coffee. Never thought I could miss half and half so much! I do get to put sugar in the Cream of Wheat, so that helps.

Lunch: Salad with homemade lemon vinaigrette dressing and grilled chicken. Still get to have my Coke Zero. Hooray!

Dinner: Imjadara. Thank you to my mom for making me this Lebanese dish! It looks gross, but it is awesome. Lentils, onions and wheat. I even listed it as my favorite food when I was in kindergarten! Just wish I could have some pita along with it.

Snack: I love movies, and therefore love popcorn. Fortunately, I have never been a big fan of butter on my popcorn. So when I air-pop and add kosher salt, it doesn’t taste too bad!

I can also eat fresh fruit and vegetables, so I snack on those too. I am logging everything I eat into MyFitnessPal, and I am consuming about 1200-1400 calories a day, which is pretty typical for me. However, the food I am eating is just not very satisfying, so I am still hungry all day long. I am still running and obsessively weighing myself, because I figure if I still don’t lose weight doing this diet, than my endocrinologist can’t argue with me, right? I can’t do any medication changes until I am done with this experience, so this is truly my last hope to dump the extra pounds before my upcoming thyroidectomy anniversary. I have heard good things about eliminating dairy and bread as a way to lose weight, so I am hopeful. It’s the only thing that keeps me going!

In the meantime, please don’t eat pizza or enjoy Starbucks within 20 feet of me. You may get pounced.

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10 Things I Hate About Thyroid Cancer

22 Jun

One year ago today, I was diagnosed with papillary thyroid cancer. I have been blessed in so many ways over the past year, but health-wise, it has sucked. Plain and simple. I have been down on my knees, crying out to God for help. And the message I seem to be getting is this: Trust your struggle. If you haven’t struggled, you can’t help people.

I’m writing a book. It’s called 10 Things I Hate About Thyroid Cancer. Sure, there are “Patient Guides” and “What to Expect” books out there. But I am telling my story in real-life, plain-speak.

Here’s the deal: You’re not crazy. Thyroid cancer sucks. But now it’s time to GET EDUCATED and OWN YOUR TREATMENT. Here is a sneak peek at the 10 worst things that get glossed over in all the other books.

10. It’s the best cancer!

When you get thyroid cancer, everyone, and I mean EVERYONE, will tell you that it is the best kind of cancer to get. You will feel dismissed and guilty for even complaining about it. You won’t fit in with the thyroid disease crowd, and you definitely won’t fit in with the chemotherapy crowd. We’re on a tired, fat, lonely and depressed island. We are so lucky!

9. Endocrinologists

Patients with other types of cancer get the best of the best in doctors: oncologists. We ThyCa patients get endocrinologists. The “accountants of medicine.” One of the lowest paid and least empathetic medical specialties. They spend most of their day scolding diabetics to diet and exercise. Any guesses how they treat us?

8. The TSH Prison

After your thyroid is removed, your entire well-being will be reduced to one number = your TSH. You will no longer be allowed to have any thyroidless symptoms unless your TSH – a PITUITARY hormone marker – is elevated. If you do, the symptoms will be blamed on something else, and you will be completely on your own to find relief.  You will have to fight like hell to find a doctor who thinks beyond the TSH number, especially as a cancer patient. Put your boxing gloves on!

7. Low Taste Iodine… Diet

Every year, you have to do an AWFUL low-iodine diet for your scan, and if there happens to be a Thyrogen medication shortage, you will have to go off your hormone replacement medication (and become completely incapacitated) for 6 weeks too.  What’s a low-iodine diet? Just imagine 98% of the foods you eat. You can’t have any of those. There – that’s the diet.

6. RAI

RAI = Radioactive Iodine Treatments. I (luckily) haven’t had any of these yet, but I had to fight my way out of it. Based on everything I have learned from my ThyCa network of friends, it sucks pretty bad. I can’t imagine anything good coming from being so radioactive that you need a Geiger counter to find out if you are safe to be around other humans. Here’s the crappy thing: it’s shockingly unnecessary for many thyroid cancer patients whose tumors are less than 2 centimeters.  Too bad most of our idiot doctors can’t be bothered to know that.

5. Getting fat

You’re probably going to gain weight. When I was diagnosed, I found ONE blogger who said she could not keep weight ON after her thyroidectomy. I clung to that hope, that I would at least get to be THIN after all this anguish. But I became “just another fat thyroid cancer patient.” Prepare yourself. Your metabolism will forever be changed, one way or another. And more often than not, you won’t like it.

4. The “new normal” sucks.

Being thyroidless brings all sorts of unwelcome symptoms. You’re tired all the time. Sometimes you are freezing. Sometimes you get hot flashes and sweat through your clothes. Your menstruation gets screwed up. Your hair falls out. You forget things. You’re clumsier. You’re depressed. You’re anxious. But the worst thing is that you never know how you are going to feel on a day-to-day basis, so there is no “normal.”

3. Most people don’t die from thyroid cancer.

Yes, the fact that most people don’t die from thyroid cancer DOES suck in some respects! That means doctors don’t take you seriously. I’ve even heard doctors say that it’s not “real cancer!” There is no cute thyroid cancer branding like “Save the Ta-Tas.” NFL players are not going to wear little butterflies on their jerseys to increase awareness about your disease. Pharmaceutical companies don’t invest in research for new thyroid cancer treatments. Insurance companies don’t cover medications that improve your quality of life. Sometimes your friends and family are unsympathetic. Half the time, people have to Google “thyroid” because they don’t even know what it is.

2. You’ve never really “beat” thyroid cancer.

No matter what kind of thyroid cancer you have, you are always left with the chronic disease of hypothyroidism. You don’t go through treatment and then move on with the rest of your life. You are forever dependent on pills to keep you alive. Your body never recovers from the day you lose your thyroid. You keep fighting, monitoring your symptoms and changing your medication. You don’t check the “survivor” box. Surviving becomes your lifestyle.

1. If Synthroid doesn’t work for you, GOOD LUCK.

It was patented in the 1960s and it is the “gold standard” of thyroid replacement. Too bad it only replaces 20% of what your real thyroid would give you. Over the last year, I have been to four different doctors, given 18 vials of blood, and spent over $5000 in cash to find a way to get something better. Oh, the stories I can tell! But there ARE options. And it is up to us to find them, and fight for optimal treatment.

My book will do more than complain about how much I hate thyroid cancer. I will tell my story, offer up coping mechanisms, and make you laugh along the way.

What do you think, thyroid cancer survivors? What do you hate about thyroid cancer?

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Thyroid Cancer Prayer

18 Jun

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Dear Lord,

Please be with all of the thyroid cancer survivors in the world today. For those who have just been diagnosed, bring them peace. Help them to know they are not alone. Direct them to seek support from one of the many organizations available. Bless them with the capacity to overcome the shock and the ability to take control of the process of their upcoming treatment.

Please be with all of the loved ones of thyroid cancer survivors. Give them empathy, and open their hearts to give the assistance that is most needed.

I ask you to be with all of the surgeons who are operating on thyroid cancer patients today. Guide their hands. Protect their patients’ vocal chords and parathyroid glands. Most of all, I ask that that surgeons are able to see the cancer clearly, and that they are able to safely remove it. Heal their patients quickly, Lord. Ease their pain and reduce their scarring.

For those of us who have been fighting for awhile, grant us the serenity to accept the things we cannot change; the wherewithal to learn, to fight and to work with our doctors to change the things we can; and the wisdom to know the difference.  

Strengthen us through our struggles, and light the way back to normal.

Amen.

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