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!
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.
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?