Tag Archives: support

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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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

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.

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?

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.

Dos and Don’ts for the Thyroidless

10 Mar

Throughout my thyroid cancer experience, I have had unlimited amounts of support from my family and my closest friends. I have even been supported by new friends online who are having the same experiences. I am one of the lucky ones. I only have to deal with the annoying “helpfulness” of acquaintances and strangers. So, to help those of you who know someone who had thyroid cancer or is struggling to overcome uncontrolled hypothyroidism, here is a list of dos and don’ts.

DON’T EVER SAY…

“I know someone who had thyroid cancer and they’re totally fine!”

Would you say that to someone whose house burned down? “My friend’s house burned down and they are fine now!” No, you wouldn’t say that. So don’t say that to someone who also just had a devastating, life-altering experience.

“If you had to get cancer, that’s the best one to get, right?”

This one is my favorite, because even I said it when I was first diagnosed. What it really means is, “I’m not going to look sick to you and I probably won’t die from this, so people around me won’t have to feel guilty and uncomfortable.”

“At least you are alive.”

Again, is that something you would say to someone who told you their house burned down? Yes, I am happy I am alive. At least we are ALL alive. That doesn’t mean it is okay when crappy things happen to us.

“Have you tried (fill in the blank here) to lose weight?”

No, I haven’t tried that! Wow! What a lifesaver you are! Let me assure you – I have tried EVERYTHING.

“Were you a smoker?”

No. But would that make you feel better about my diagnosis? Like I brought it on myself or something?

“Not everything is because of your thyroid.”

You’re right! Not everything! Just my body temperature, my metabolism, my hormone regulation, my digestion, my ovulation, my energy level, my brain processes, my hair, my nails, my skin and MY MOOD.

DO SAY…

“What can I do to help?”

We are tired. ALL THE TIME.

“…”

That’s right – just don’t say anything. Listen to us vent, and then just don’t comment.

“It’s okay.”

Be there for us, and cut us a lot of slack. Sometimes we get overwhelmed and we overreact to things. Imagine waking up one day and not having any control over how “off” you feel. Imagine having the rug pulled out from under you and everything you have ever known as normal is GONE. Sometimes we just don’t have the energy to pretend that we are the same. We’re not.

I am doing well…I really am. And I know how blessed and lucky I am. I know how much worse it could be, and I am grateful for what I have. But that doesn’t mean I don’t miss life as I used to know it. That’s why I keep fighting. I am working so hard to put the missing pieces back together, and I have to believe that someday I will. Just don’t tell me that you know someone else who did…and now they’re totally fine.