Tag Archives: Thyroid Cancer

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?

Thyroid Cancer Prayer

18 Jun

Image

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.

Still Bargaining…

21 Feb

Finally! Something to celebrate!

I just got a call from U of M, so I thought I would do a lunch hour post to share some news.

First, my ultrasound showed no abnormalities and my thyroglobulin (cancer tumor marker in the bloodstream) level is still undetectable.

The rest of my numbers are as follows:

  • B12: 490 (normal, and way better than before)
  • Vitamin D: 31 (normal, but could be higher)
  • TSH: 1.55 (I think that’s high – Dr. E likes it)
  • T4: 0.97 (I think that’s low – Dr. E likes it)
  • T3: 2.4 (that’s just about perfect, and that is while taking Cytomel)

So what does all this mean? It means I FINALLY get to go back on 125 mcg of Synthroid. Dr. E wants me to drop the Cytomel, but I begged to stay on it. We’ll see what she says.

OTHER NEWS:

  • I continue to live flour-free, and I think I am happy with the choice. I feel healthier overall, so it’s worth it. I never thought I could win the battle over bread, but I did! I don’t even crave it anymore.
  • I added back my iodine supplement (Iodoral) and started taking Selenium. It’s been 4 days, and I have lost 3 pounds. It’s hard to attribute the weight loss to any one thing, but whatever, I’ll take it. I am researching and closely monitoring my response to iodine, and will post separately about my findings.
  • I am feeling really good. I always forget to reflect on the improvements in my health. My energy level is almost normal, my hair totally stopped falling out and looks normal, my skin is not as dry, and I don’t feel as depressed as I did before. What’s changed? Cytomel? Flour elimination? Added estrogen? The fact that I have been exercising a little bit more? There’s no way to know, so I will just keep doing what I’m doing!

Cheers to being cancer-free, and to a higher dose of Synthroid!

***THIS JUST IN***

 I get to stay on 5 mcg of Cytomel with the new increased dose of 125 mcg Synthroid. It’s what I have been pulling for all along! I am seriously jumping for joy!

The Flourless Experiment

15 Feb

I made it through 21 days of no flour. I incorporated Ezekiel bread into my breakfast. I ate more fruit, vegetables and lean meat. I skipped the quick airport and meeting snacks when I traveled to Florida last week. I even ordered salad at Disneyland. And what were the final results?

-0.8 pounds

That’s right, my initial weight loss kinda rebounded back, and I basically have nothing to show for my suffering. It’s true, I didn’t gain anything over the past three weeks, which is positive. And my digestion, brain fog and energy level have maintained their improvements. But what’s the use if I am still overweight? Today at lunch I ate 4 croutons in my salad and I had some vegetable dumplings. And boy, did I regret it. My stomach ballooned out and I almost fell asleep at my desk at 2:00 p.m. I have ruined my favorite food forever, and I am still fat!

So, here we are in My Journey…

DENIAL: I will be fine. This is the best cancer to get!

ANGER: I am NOT going to be one of those people who get really fat and have permanently hoarse voices!

BARGAINING: Okay, maybe if I try Armour. Or adding Cytomel to my Synthroid. Or giving up flour. Maybe then I can have my old life back.

DEPRESSION: Why do I even bother? Now the best I can hope for is never eating white bread or noodles again and still being overweight! Why did this have to happen to me??

I guess the next step is ACCEPTANCE. But can I go there after I have one more round of bloodwork this Friday? After all, I did start on birth control pills. Maybe the added estrogen is interfering with the thyroid meds. Maybe a magical dose increase will make me normal again?

Oh wait, now I’m back to bargaining.

Weighting

21 Dec

I’ve been on the reduced dose of 112 mcg Synthroid for almost a month now. I hate it. I am tired and freezing cold all the time. I have chronic headaches and a strange ringing in my ears. And worst of all, I never know if my clothes will fit from one day to the next.

As tempted as I am to take brown seaweed and black licorice supplements (Dr. Oz said they work!), I am holding to the promise of playing by the rules until my January 25 appointment. Hopefully by then, my labwork will match my symptoms. I have grand dreams of saying “I TOLD YOU SO!!” and demanding an upped dose of Synthroid coupled with T3 for energy. But if my labs are consistent, I will be stuck with what I’ve got.

I so wish I could keep everything in perspective, especially when it comes to the number on the scale. But I just can’t. I’ve gained 12 pounds now since my surgery. I am heavier now than when I came home from the hospital with a newborn. I really would like to hide this in shame, but in the hopes of recovery, I am putting it all out there for other thyroid cancer survivors to see. THIS SUCKS, and I miss my thyroid. I am not doing anything differently, and the weight just keeps magically appearing. Thyroid cancer = fat cancer, and I fear that no amount of medication will give me my metabolism back. This is like my worst nightmare coming true.

Or is it?

Last week, as we were rushing out the door for Ellie’s Christmas Concert, Mary smacked her mouth into our open TV stand door and severed her gums. There was blood everywhere. I didn’t know if I was going to pull back the washcloth and see missing teeth. And it was terrifying. In the end, she ended up with a bruised and puffy lip and an amoxicillin prescription. What would I do if something was really wrong with one of my girls? Or what if I was actually dying from my cancer instead of just growing out of my favorite pants? It’s time to put myself in check (again). I may be exhausted and fat, but at least I’m here

I can only control what I can control. It’s time to face the inevitable. It’s time to clean up my diet. Even if it doesn’t reverse the number on the scale, it might improve my energy level and my overall health. I eat a low-calorie diet, but it’s made up mostly of the four Cs…

  • Coffee
  • Coke Zero
  • Carbs
  • Cheese

I am meeting with a nutritionist in Thursday. My New Year’s resolution is to focus on my health instead of my weight. That is, at least until January 25.

Four months post-thyroidectomy

The Difficult Patient

22 Nov

Remember the Seinfeld episode where Elaine’s doctor writes “difficult” in her chart? It’s one of my favorites. And now it is officially my life.

This little Armour Thyroid experiment has been a failure. All my research pointed to Armour as the ultimate answer to my prayers. But in 3 weeks, I have gained 4 more pounds, I am more tired, and I have such bad brain fog that I asked Andy what you call that red thing that you put fires out with. It’s the opposite experience that most people have with Armour. I even tried chewing it up like all the blogs say you should do to increase its absorption. Still I feel worse than I did on Synthroid. My labs are consistent…I should be anxious and losing weight like crazy and having heart palpitations. But I’m not.

Today I heard back from Dr. E’s office. She is happy to switch me back to Synthroid, but this time, I can only have 112 mcg. That’s right…because of my stupid TSH being suppressed and regardless of how I feel, she is REDUCING my hormone dose and then rechecking in January. This is how it sounded in my head:

“Sarah, since you are so difficult and had to play around with your medications, we are going to screw you over and have you get really fat and tired before we help you. That way, it will be our idea and not yours. Merry Christmas!”

I am so ANGRY.

There is really nothing I can do. I can exercise more and eat better, but really, I can’t switch doctors at this point. I haven’t even had my scan yet. So I have to force myself to do what she says and wait it out until January. My family promises to still love me even if I turn into a giant marshmallow. And I am buying a t-shirt that says, “It’s not my fault. It’s my thyroid’s.”

Why are doctors so afraid of a low TSH? Why does that number eclipse my symptoms? Why is a doctor HAPPY to hand out Zoloft, Xanax, Vicodin and Ambien, but won’t aggressively treat a thyroid disease? If you compare the side effect profiles of the drugs, it truly doesn’t add up. My personal opinion is that thyroid patients are labeled as difficult. Our symptoms are too easily misunderstood as whining. And after all, women are supposed to suck it up when it comes to quality of life. We need THREE different billion-dollar erectile dysfunction drugs, but the best we will do for thyroids is what we’ve been doing since 1960.

It’s not just frustrating, it is an outrage. So if you’re a furious thyroid patient who is stumbling upon my blog looking for answers, all I can say is this:

  • Look for support from Facebook groups, blogs, family and friends, but don’t expect your doctor to be your therapist.
  • When you discuss your symptoms with your doctor, be quantitative and try not to be emotional.
  • Make a list of questions for your appointments, not instructions.
  • No matter how bad you want to, never say, “If you always do C when A=B, then why did you waste all that money on medical school? Couldn’t you have just downloaded an iPhone app?”

Sigh…guess I have to take my own advice and be a patient patient. Until then, it’s not my fault, it’s my thyroid’s.