Archive | March, 2012

“We have your Thyrogen prescription.”

31 Mar

I just got off the phone with Walgreens Specialty Pharmacy in Ann Arbor. My Thyrogen is in. That means I am finally going to have my whole-body scan to see if there are any remaining thyroid cancer cells in my body. My bloodwork hasn’ t shown any signs of tumor growth, but the scan will look at the cellular level. I nearly had a meltdown on the phone…it was so, so weird. They basically just called and asked me for my birthdate before they would even reveal why they were calling, and then I had to pay my $250 co-pay over the phone before they would ship it to UofM. Maybe it’s the anxiety, but that REALLY annoyed me. I told the pharmacist, “This is an insane way to deal with cancer patients that have been waiting 8 months for medication. I want to hang up on you, but I am afraid you’ll give my Thyrogen to someone else.”

Well, you survivors out there know what this means…low-iodine diet. Here are just a few items I will have to part with for two whole weeks:

  • Milk
  • Cheese
  • Yogurt
  • Chocolate
  • Bread
  • Salt
  • Pre-packaged or restaurant food of any kind

I seriously feel like crying. I probably won’t even lose weight. Speaking of, there has been ZERO change from upping my Synthroid to 125 mcg, so I made an appointment with a holistic doctor. She’s going to try to compound T3/T4 thyroid medication for me, but I don’t have my blood tests back yet to determine the exact ratio. I was supplementing with iodine and selenium (it wasn’t effective), and she told me to stop. That’s a good thing, since now I have to deplete all of the iodine in my body.

Okay, let’s try to be positive. Ideally, I will go on this stupid diet for two weeks, get two injections, and then get the scan over with. (Hopefully there is no iodine in Xanax, because I am not going in that giant tube without it!)  There will be no microscopic cancer in my body. Then I will start on my perfectly compounded (and probably very expensive) thyroid medication, and by summer I will be completely back to normal.

Right?

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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.

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