I fully realize that I am still very hypothyroid, which makes me overly emotional. I know this. So take everything I'm about to say with a grain of salt. Understand that I am fully cognizant that nothing I am about to say is really rational. I'm just kind of processing at a pure emotional level right now, which is not where I like to be, but it is what it is. I'm going to allow myself this. For tonight at least. I will wallow, in a completely irrational way.
I requested the actual report from my recent PET and CT scans, and received them today. So I read the real, unfiltered report. Not the "GREAT NEWS! NO DISTANT METASTASIS!" verbal report I got from the nurse, but the actual down and dirty, "what lit up on the scan" report, straight from the radiologist who was staring at my insides for three hours. And it kinda took the air out of my sails.
I thought it was strange that the call last Wednesday from the nurse, quoting the letter that the doctor had transcribed to mail to me, just said there was "nothing outside the neck area". That seemed very deliberately vague to me. Great news... don't get me wrong. We really didn't WANT cancer to have spread outside the neck area. That would obviously be bad. But... what about INSIDE the neck area? That was what was so vague. Had the cancer stayed where it was supposed to, just inside the thyroid that we had removed with surgery? The 2 cm nodule? Had it stayed put like that? Did only the place where that thyroid used to be light up on the PET scan? Just residual, normal thyroid tissue? Was it all so nice and neat and contained and DONE, like that? The endocrinologist didn't say in his letter. The nurse couldn't say when I asked her on the phone. In fact, she actually said "I'm sure there wasn't any spread outside the thyroid bed, because the doctor didn't mention it at all in his letter."
But the actual report could say. And did say. The cancer HAD spread outside the thyroid bed. It had spread to lymph nodes. It had spread to my trachea. It had spread to the neck muscles on either side, and it had spread to my esophagus. And it had even spread, just a little bit, to the middle lobe of my right lung. It had "lit up" my neck so much, in fact, that the radiologist was worried that it had invaded my sternum and chest bones, which is why he took extra pictures, and the scan took three hours instead of the one hour I had anticipated. He wanted to make sure that the bones were cancer free (they are, by the way). But the cancer very much did NOT stay right in the thyroid. The doctor was right, it had (mostly) stayed "in the neck area"... but man, did it coat that neck area. And the doctor was further right, in that radioiodine SHOULD take out all of that "extensive abnormal uptake in the mid cervical area and base of the neck". So regardless of how much was there... I've had my treatment, and it should kill all the bad stuff. The doctor's office called me back on Friday (after the "GREAT NEWS!" phone call on Wednesday) and asked me to come all the way back to Wisconsin for one more blood test, just to make SURE that my tumor markers return to zero, and that we really did kill all that cancer in my neck (and the little spot in my lung). So the doctor could honestly tell me what great news the PET scan was, without really telling me the extent of what the actual report said, because... hopefully... it doesn't matter. Hopefully, radiation took out all that metastasized cancer, just as it would've taken out the residual thyroid tissue if there hadn't been any metastasis at all. Why scare me with all the gory details, when treatment (and presumably results of that treatment) should be the same, regardless? It doesn't necessarily matter what lit up on the scan in the neck... the 100 mCi of radiation should have killed it all. So don't stress yourself out over it. It's GREAT NEWS. The cancer was limited to the neck!! TA DA!
I am irritated, because I don't like being coddled. I prefer the straight dope. I am a medical professional. I can handle it. My way of handling things is to educate myself, and I can't do that if I'm given vague generalities meant to alleviate potential fear. I find that incredibly condescending, and I don't appreciate it. Which is why I ALWAYS prefer the real data from the original report, unfiltered by nurses on the phone, and why I always request my medical records, because I know... no one is going to advocate for me like I can advocate for myself, if need be. This is why I insist on being educated on my own health, and don't rely on others.
But, a kazillion times more than that... I feel violated. Violated by stupid cancer. Because I was led to believe that it was just a small little tumor in the thyroid, and that all the cancer was removed with surgery. I've been told repeatedly that I have the "good kind" of cancer, the "if you're going to get cancer, this is the best kind" because it's slow growing, and curable, and all of that. Except... mine wasn't so slow growing, OBVIOUSLY. It had tripled in size in six months, and spread OUTSIDE the thyroid to coat a good chunk of the inside of my neck, apparently. And to my lungs, even if just a little bit. I feel... I don't know... like someone broke into my home and stole my stuff. Like cancer broke into my body and VIOLATED me. That's what it feels like. A violation. An invasion. It wasn't just a little tumor in my thyroid. It was an assault. I feel... not safe in my own body, which is ridiculous. And irrational. But that's what it feels like. Like I was betrayed by this "good" cancer that's in reality far more aggressive and ugly then what people and the internet have been telling me.
I know, in my brain, that none of this changes the course of my treatment. It doesn't even really change my prognosis. Stage 3 cancer is stage 3 cancer. The amount of metastasis doesn't change the stage of my cancer, because it never left the neck area. If it had, then things turn into stage 4 cancer, and all of a sudden, prognosis goes WAY down. The little nodule in my lungs is small enough that it could just be a random thing, so it doesn't count. And hopefully, it goes away by the next scan. Just something to keep an eye on, but not enough to change me from Stage 3 to Stage 4. So, as of right now, my treatment should still be done for the time being, my prognosis is still really good, and the only difference is that I'm having trouble wrapping my brain around the idea that SOMETHING invaded my neck far more than I thought it did, and that just makes me feel... emotional. And not good. Even though, rationally, I should be able to say "it's okay. It's all still okay".
So when people congratulate me on being back to work, and being "ok" again... I smile, and say "thanks, it's good to be back". Because it IS. But I don't feel myself yet. I don't feel "back". Not just yet. Hopefully, I'll get there soon. But it's been a rough road, to be honest, and I feel worse for the wear. I'm tired all the time, and cold, and hoarse, and overweight, and crabby, and continue to have abdominal cramps, and not be able to eat normally. And I feel like a big old baby because it COULD BE SO MUCH WORSE. I'm thankful it's NOT been worse. Truly I am. And I'm just so sick of focusing on myself and my health status. If I'm sick of it, I know that others are sick of it. It's so all-consuming and self-absorbed, it needs to ALL GO AWAY ALREADY.
Tomorrow, I will be rational and upbeat, and regain some much needed perspective. I will work on putting it all behind me tomorrow.
But for tonight, I'm allowing myself to wallow.
Tonight, I will allow myself to say... "you suck cancer. Get out of me and leave me alone."
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