Tag Archives: Thyroid Cancer

Thyroid Cancer – Three Years Later

11 Aug

timehop

Three years ago today, I was having my thyroidectomy. Two years ago, I was having my first scans. One year ago today, I was pregnant. On all three occasions, I was frantically worried about my health and my future. Today, I only remembered that I had cancer because my TimeHop app told me so.

Life is crazy that way…so overwhelming when you’re in the moment, and then when you come out on the other side, you barely remember the anguish. I wish someone would invent a TimeHop app that showed you the future. I wish I could go back in time and tell myself more than the doctors were telling me.

Here’s what my fast-forward TimeHop app would have said on August 11, 2011.

In three years, you will be cancer-free. Your scar will be barely noticeable. You will have been on so many different dose combinations of Synthroid and Cytomel, that you will need a storage cabinet for half-used bottles. You will be within five pounds of what you weigh today, but you’ll still obsess about it constantly. You will have a totally different job and career path. You will have THREE beautiful, healthy, perfect daughters who make you laugh every day. Being abnormal will have become so normal, that you will ask questions like “am I cold, or not?” out loud. Having cancer will give you perspective about marriage and motherhood and happiness that you would never trade for your thyroid.

Also, it’s a good thing you like Coldplay, because repeating the same song over and over is the only thing that calms your youngest daughter down enough to sleep.

Three years later, I’m still here. I worry way more about grocery shopping than I do about not having a thyroid. Most days I am too busy to look back. I can’t trade my thyroid cancer because it got me here. And August 11, 2014 is pretty awesome.

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My Perfect Christmas Gift

24 Dec
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Baby Annie
Born 12/4/13
1:47 p.m.
7 lbs. 12 oz.
19 3/4 inches

I received my Christmas gift three weeks ago when my perfect Anna (Annie) was born. The last month of my pregnancy was rocky…I had prodormal labor, and went to the hospital three times during my last two weeks. I caught a nasty respiratory virus over Thanksgiving, and I really thought I couldn’t take it anymore. But little Annie waited until the time was exactly right…my water broke at 4:30 a.m. on December 4, and she made her grand entrance (after about an hour and a half of real pain) at 1:47 p.m. When they put her on my chest, she didn’t make a peep. She just stared at me with her peaceful little face.

My recovery has been so good, and Annie is such a good baby, that I kept waiting for some bad news to arrive. But there is none. Annie is a little angel – a perfect Christmas gift. As for my thyroidless pregnancy and birth experience, here is the list of my worries, paired with my final outcomes.

  • Ability to conceive – no issues
  • Excessive weight gain – gained 27 pounds (the least I have ever gained with a pregnancy)
  • Inability to control hormone levels – had to stay organized and get tested frequently, but leveled out with no problem by week 25
  • Difficult labor and delivery – it was no picnic, but unrelated to my thyroid!
  • Cancer recurrence – I checked out “cancer-free” in July, and will follow up again in April
  • Birth defects – Annie is BEYOND perfect!
  • Congenial hypothyroidism – I felt like I couldn’t breathe easy until Annie’s own thyroid levels were checked. Again, she is perfect!
  • Hormone crash post-delivery – This still might happen, but so far, I am the LEAST hormonal that I have ever been post-delivery. No tears, no temper tantrums, and so far, no hypo- OR hyperthyroid symptoms. My body may have adjusted to the new higher dose of medication, or I may need to adjust in a few months. I will have follow-up testing next month.
  • Breastfeeding issues – Annie is a champion breastfeeder, and my thyroidlessness has had zero effect on my milk supply. This has by far been my easiest transition into breastfeeding.
  • Weight loss post-delivery – I gained 27 pounds, and after three weeks, I have 7 left to lose to get back to my pre-pregnancy weight. I am struggling to celebrate this milestone, because my natural reaction is to compare myself to my wedding photos, and say that I really need to lose 20 pounds. I have to remind myself that I believed having another baby might mean I would NEVER lose the pregnancy weight, and that is obviously not true. My pre-pregnancy jeans (though a little snug) even zip all the way!

It’s hard to imagine a better Christmas gift than Annie. She is the perfect addition to my family, whom I love so much. I am humbled and grateful and so very happy. Merry Christmas to all of you, and the best of health and happiness in 2014!

 

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Tips for a Healthy Hypothyroid Pregnancy

28 Oct

ForTwoFitness-AmbassadorSeal_200

I was featured on the For Two Fitness Blog! Link below and here is the full text:

TIPS FOR A HEALTHY HYPOTHYROID PREGNANCY

After my second daughter was born, I was diagnosed with papillary thyroid cancer. My chances for survival were very good – more than 95% – but my chances for a permanently decreased metabolism, altered quality of life and infertility were also very high. Two years after my cancer treatment, I became pregnant for the third time, and I celebrated my good fortune. But then I immediately got to work on a plan for a healthy pregnancy.

Nearly 10% of the female population has some sort of thyroid disease, and uncontrolled hypothyroidism can cause serious pregnancy complications. I was personally very concerned that my thyroidlessness would magnify the already difficult challenges pregnancy poses on health and fitness. As I enter my 35th week of pregnancy, I am happy to report that I feel and look great, and so does my baby! Here are my top tips for a healthy hypothyroid pregnancy.

MANAGE YOUR STRESS AND FATIGUE

I work full-time, have two young children and live a go-go-go lifestyle. It was important to me that during this pregnancy, I had enough quiet time to listen to my body. Make a list of your weekly activities, and ask yourself which ones are critical, and which could take a backseat for a season. Ask for help where you can. Rely on friends, family and neighbors. Give yourself permission to say no when you need to, and prioritize rest and rejuvenation.

MANAGE YOUR MEDICATION

A women’s thyroid hormone needs can increase as much as 60% during pregnancy. Unfortunately, most doctors take a reactive approach to medication management. Through my own experience and research, I worked out a schedule to track my own progress. I also found that most doctors primarily use thyroid stimulating hormone (TSH) as a hormone marker, but my own symptoms are more closely linked to my free hormone levels – free T4 and free T3. I had my doctor check all three levels the day I had a positive pregnancy test, and then every 4 weeks after that. As my pregnancy progressed, I needed to increase my dose and am now taking 40% more medication than I was pre-pregnancy to keep my TSH in lower end of the normal range, and my free hormone levels in the mid- to upper-ranges. The lab I use provides an iPhone app for patients to save and track their own results, but you can also do this in your own spreadsheet. The important thing is to take ownership and partner with your doctor to stay on top of your hormone needs and give both you and your baby what he/she needs.

MANAGE YOUR WEIGHT GAIN

Most non-pregnant hypothyroid women struggle to control their weight. In my experience, the slightest variation in thyroid hormone levels can result in 10 pounds that I have to work extra hard to lose. Naturally I was nervous about what a pregnancy with fluctuations in hormone needs would mean for me. To make matters more challenging, I rely on very high-impact activities to manage my weight when I am not pregnant, like TurboKick and running. During my first trimester, I continued these activities, but I definitely needed to modify my fitness plan as my body changed and my belly grew. Now I enjoy walking and Tracy Anderson’s The Pregnancy Project videos to keep me as fit as possible, and I focus on eating frequent, smaller, protein-packed meals. I use the Pregnancy Pounds iPhone app to watch for any big jumps in weight gain (which could indicate an issue with my medication dosage). I give myself small treats instead of big splurges to control my cravings, and I drink a lot of water. As I enter my last month of pregnancy, I have gained about 20 pounds, which is healthy for my body type, and actually less than I gained with my other pregnancies.

Generally speaking, hypothyroid women can have happy, healthy pregnancies too. Listen to your body, make modifications when you need to, stay fueled and hydrated, own your treatment plan, watch for major weight fluctuations, and treat yourself once in awhile!

http://fortwofitness.com/blog/2013/10/tips-for-a-healthy-hypothyroid-pregnancy/

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30 Weeks

25 Sep

Two years ago, I was recovering from surgery, starting a new job, and worrying about the impact thyroid cancer would have on my life.

Two months ago, I was struggling to get my thyroid hormone levels under control, and worrying about the impact hypothyroidism would have on my baby.

Two months from now, I will be holding my newborn baby girl – the evidence of life and happiness for the thyroidless.

It hasn’t been an easy road. I am on my 5th dose adjustment of medication, I am tired all the time, and I have had a miserable cold for the last week. But my thyroidless pregnancy hasn’t been the overwhelming disaster that I thought it would be. I’ve gained a reasonable amount of weight (~20 lbs.) and I managed to avoid gestational diabetes. I seem to have stabilized for the moment on 175 mcg Synthroid/ 5 mcg Cytomel, and I trust my OBGYN completely. I had my yearly check-up at U of M, and all of my lymph nodes look good and my Tg remains undetectable. If there wasn’t a “barely-there” scar on my neck, you’d never know that I had thyroid cancer.

And the best news of all is that my miracle baby is perfect. She has 10 fingers, 10 toes, and all of her organs are in the right place. She weighs 3.5 pounds already, and has frequent dance marathons. During my recent ultrasound, she sucked on her fists and made annoyed facial expressions. We’re in love already and we can’t wait to meet her.

3

Baby sucking on her fist – 30 weeks

I am still bracing myself for the post-birth roller-coaster.  Pregnancy increased my thyroid hormone needs by 40%. Will I suddenly need 40% less after the baby is born? Will all my hair fall out? Will I overheat and have the shakes? Will I bounce around between hyper- and hypothyroid before I figure it out? And although I haven’t gained an unusual amount of weight for a pregnant person, am I doomed to keep it on forever?

I am going to try to live in the moment and deal with those things as they come. For now, I am going to worry about middle names, crib bedding and baby monitors. And in my spare time, I might join in on some of my baby’s dance marathons.

29 weeks - with my pregnant friend who doesn't look pregnant

29 weeks – with my pregnant friend who doesn’t look pregnant

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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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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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