"You like this movie?"
Oh yeah! So fucking hot! What is that, a transvestite jerking off into a dead horse's mouth?
"No, it's a cow's head."
Oh. I though it was a horse. Fucking lame.
*click*

at the nadir

I stopped my thyroid meds completely 3 weeks ago, and have been descending deep into hypothyroid hell. Today, the last day before I get to go back on my meds, is particularly bad. The cats are locked in the livingroom because I'm still too radioactive from the radioiodine treatment. In the last 3 weeks, with minimal dietary change, I've gained about 18lbs. The extreme myxedema make my body feels like a stuffed sausage. My face is a giant ball. My head feels like fluff. Nothing fits me. I don't want to talk to anyone. Just looking out the window at the world outside upsets me. I'm still on the low-iodine diet (until tomorrow), which means I can't even enjoy my coffee yet. This is the very very bottom, and not just because what I'm feeling -now-, but because of the strong reminder of how I've felt in the past.

I've been here before, but didn't know why. Now, all signs point back to my thyroid. And you're gone now, you tortuous little bastard. Now, rather than being an animal in pain, confused and tormented, I'm a human in pain, handling it as rationally as possible.

And now, I literally count the ticks of time until I can swallow my first return dose of Levoxyl. T-12.3 hours and counting. And then it starts to get better.

Perfect illustrations of what the last 3 weeks of extreme hypo have done to me
from:
http://www.jcrows.com/hypothyroidism.html

Perfect illustrations of what the last 3 weeks of extreme hypo have done to me
from:
http://www.jcrows.com/hypothyroidism.html

This shocks the hell out of me.
I can't wait to post an after pic.

Cancer sucks.

I've been hesitant about posting this on Facebook. I've told very few people about the specifics of what's going on with me right now, but word does get around and I'm finding that I'm having the same conversation over and over. I really appreciate people wanting to know how I am, but that repetition is has been draining. Facebook has become my primary point of contact with many people, so it's the most logical place to talk about this.

I've spent the last several years keeping very much to myself physically and emotionally, not necessarily for the best of reasons initially, but I have, in many ways become quite a rock. Isolation has many wonderful lessons to offer when taken in moderation. But things are going on now that are leaving me weak in the knees, and I can't be and don't want to be a hermit anymore. Comfort, support and hugs are quite welcome.

Remember my thyroid surgery back in October? The thing that I've been dancing around is that, 10 days after the surgery, I received a call from the surgeon telling me that, after my excised thyroid was sent to pathology, a big surprise was found: a very large follicular carcinoma. Thyroid cancer.

Several despair filled weeks later, I met with my new endocrinologist, and he explained things in detail. Follicular thyroid cancer is considered just about as treatable as the more common papillary cancer. The difference is that follicular is more aggressive. It is angio-invasive, meaning that it spreads through blood vessels rather than through the lymphatic system. While my chest x-ray, CT scan and MRI showed that my lungs were clean, he did point out that the large size of the tumor opened up the very real possibility of there being microscopic metastases in my lungs. At least I know the score, and knowing really IS half the battle because that knowledge made me relax and stop despairing.

To make a long story short, I'm in the process of preparing for my body scan to determine the extent of the spread (if any). I went off of Levoxyl a few days ago and started on Cytomel, a fast acting, short-lived thyroid hormone replacement. In two weeks, I stop all thyroid medication all together. For two weeks. At the same time, I am to eat a very low iodine diet. I have a whole set of guidelines that I need to follow. The goal is to deprive all remaining thyroid tissue in my body (and what is this cancer but more thyroid tissue) of iodine so that they greedily soak up the thyro-destructive radioactive variant.

(I "accidentally" went on the diet a few weeks ago and realized that it's actually pretty easy. The only big issue for me was coffee creamer (those 300 calorie cups of coconut milk in my coffee have let an impact!). I found truly non-dairy creamer at the kosher grocery the other day. It doesn't taste half bad and will allow me to enjoy my caffeine vehicles all the better.)

January 5th, I report to Nuclear Medicine and receive a tracer dose of iodine. The next day, I come back for my full body scan. This is the day I fear the most because that's when we find out the extent of the spread. The next day, I come back for the ablative dose of Iodine-131. The dosage is dependent on what the body scan reveals. I take the pills and then rush home, where I am to be locked away for about a week. I will be quite radioactive and a danger to people close to me. I even have to keep the cats locked away. During this time, I will be as hypothyroid as you can get, so life will be pretty miserable. At least I'll have a lovely glow.

I do find it amusing that this has all come to be even after I've spent the last few years working so hard to make myself healthy. I quit smoking. I lost 80lbs. I became an avid cyclist, hiker, explorer. I learned to love the feel of sweat pouring down my face and the pounding of my heart in my chest. I loved being outdoors, wind in my face, the sun in my eyes and me as happy as I had ever been. I made the Summer of 2009 the best summer of my entire life, because I really lived it.

Here's the thing: this situation sucks. Hard. In the bad way. I have no idea how things are going to turn out. But it's funny how a life threatening situation helps to reprioritize your life. I always thought it trite, but every day, I grow to appreciate sunshine more and more. The feel of wind and rain on my face. The look on a stranger's face when they realize that you are smiling at them. Hell, just smiling is pretty great, and I'm doing it more and more. I'm getting out, meeting people, making friends and it feels wonderful. My social phobias are completely gone. I'm more confident than I have ever been. I'm awesome and it's great. Whether or not I beat this, I'm alive and healthy -right now-, and I'm making sure to take advantage of it while I can.

Healing

The surgery is about 4 weeks gone, and I'm thinking that the surgeon, along with my thyroid, decided to remove my clock chip as well, because I have absolutely no sense of the passage of time.
I'm healing up well; the scar is getting a touch puckered from the subdermal stitches. I can move my head in all directions but extreme up. That's ok; there's nothing worthwhile on the high shelves anyway.
4 weeks. Crazy. Week one was pure recovery and pain relief. They gave me a buttload of morphine, but I only took one; the side effects just weren't worth it, so I chose to abuse my liver with acetaminophen instead. It worked out just as well, but with less nausea.

Week two started off with me desperate to get home, but a dead car battery left me stranded. My brother took me home the next day, and the day after, he got the car started, and I took the T over. Driving was unpleasant, but it was good to have my freedom back. I had my home, my car and a healthy appetite, and all there was to do was heal up and find a job. I started getting calls from recruiters, but my voice was a wreck. I had a phone interview that I had to cancel because I had no voice. Ah well.

About 11 days after the surgery, I received a call regarding the pathology results. Let's just say that it was less than stellar.

The day after I got the call, I had a face to face interview in Burlington. I met with 5 different people. Each one was desperately curious about what my old company did, so I spent the first 10 minutes of each meeting discussing cancer research. Yay, just what I want to be talking about. Needless to say, I totally and utterly bombed that interview.

Fast forward - met with my new, highly recommended endocrinologist last Monday who explained the treatment plan. After laying everything out, he stated that if I were his own brother, this is the treatment plan he would put him through. Great!

But he never said whether he actually LIKES his brother.

As of yesterday, I've been on a low iodine diet in prep for the radioactive iodine. The goal is to starve any remaining thyroid cells in my body so that they suck up the radioactive stuff, poisoning them and causing an untimely (for them) demise. Poor thyroid cells. Oh wait, on second though, die, you little bastards, die!

Now, if you've ever had a specific dietary limitation, you know just how difficult shopping can be. Shopping for no/low iodine foods just sucks! No dairy, mainly because the dairy industry cleans teats with iodine and a significant amount gets into the foods supply (which is generally OK because the vast majority of the population needs the iodine supplement to avoid goiters and other thyroid issues). Anything prepared with salt is suspect because there's no way to be sure that the salt is iodized. Anything from the sea is out, including sea salt, carageenan and other kelp derivatives. No soy products. No egg yolks. No milk chocolate. No non-dairy creamer. Limited meats and grains.
I was feeling OK about the diet in general until I realized: no creamer? Black tea and coffee?? EW! So I looked into rice milk - every brand contains sea salt. ARGH! Then, it occurred to me - coconut milk is creamy! So, later, I try coffee or tea with coconut milk. I hope it's not gross.

So, in two weeks, I take my first (and hopefully last) dose of Iodine-131. The half-life is 8 days. I can't be around kids, and I can't sleep with my cats OR sleep with my cats, so they get locked away in the living room. I can't sit in a car with anyone for over 30 minutes or spend time in a room for more than an hour. I shit you not, spending too much time with me will possibly give you cancer (I'm pretty sure that's been said of me before ;)

I can't say what the future will bring. No matter what comes, I have to live today, so there's no sense in burying my head in the sand. So, here's to living in interesting times.

Live from the BI ICU!

Ow. Groggy, hurty. but wow can I breathe. I'm told there was a bleeding issue and I lost a half a liter of blood on the table. The surgeon, who does tons of thyroidectomies, said this was one of the most difficult he had ever done.
Apparently they shaved my chest in preparation for going through my sternum. Thanks for not having to do that Doc

Your thyroid is tiny, a delicate little butterfly nestled in your throat. Mine was compared to nearly 2 full 1 liter IV bags. Wow.

I haven't had food since 9pm monday and water since 11:30pm Monday. Suxor. Ice chips are heaven.

Depending on how I do overnight I should be released tomorrow, but I may be here another day.

Now for sleep. It's been a long day.

P.s. Foley catheter? Not freaking cool. Just because there's a hole doesn't mean a tube needs to be shoved up it.

Last update about yesterday. Promise. Poorly written novella ahead

Now that the sedatives are completely out of my system, I can think a little more clearly and give an update about yesterday. My brother Adam came with me and spent the day helping me get a clear picture of what was going on.

I went in expecting just a bronchoscopy. Everyone else was expecting surgery. The problem? I had never given any consent to surgery. I thought this had been made clear in my communications with the surgeon. So I made it very clear: no surgery today, and they said, "yes! No surgery!" And I felt better.

The bronchoscopy went exceedingly well. I was initially told that I would be given general anesthesia, but as it turned out, I only had a strong sedative (they said it was a strong hypnotic and that I would have no memory of the procedure - they don't know me very well!) and a lidocaine inhalation. If you ever have to inhale lidocaine, be warned that it is NASTY, even if you are all hopped up on smiley drugs.

They wheeled me into the procedure room - the walls were covered with giant HD displays (sproing!) and I immediately asked if I could watch the procedure. "Really?" "Yes!" I was so excited! So, I went through the lidocaine inhalation (ew) and they slipped the camera down my throat (pink and slimy, all the way down!) . It was like a Disney ride! I saw my vocal cords! And throat slime! It was SO COOL! IT'S A SEREEZ UV TOOBZ!

Then I saw the trachea and the compressed area. It was scary how small the opening was, but still ping and slimy (which is GOOD, as it means my thyroid hasn't invaded my trachea which means no tracheal reconstruction is necessary..phew!)

During the procedure, I'm fighting off mild panic; the lidocaine had my airway, including my lungs, completely numb, so I couldn't feel myself breathe or swallow. This is disconcerting. I put my hand on my chest to feel my breathing for reassurance. I was a little disappointed, though; I was having a mild zombie fantasy...Mmm, brains, indeed.

They removed the camera and I immediately started chattering on about what an awesome experience it was, but if you've ever been numbed teeth to toes like that, you know it comes out as "Glluuuurgaaahaha! Fufffffufufufufuuf!!". They told me to just relax and let everything wear off. I started getting really bouncy, then really tired, then really bouncy and tired, then just tired.

They told me to report to Pre-Op to speak with the surgeon. I was feeling a bit paranoid from the drugs; I thought that someone was going to grab me and make me have surgery. Adam and I get there, and I was on the surgery list. I made it very clear that the surgery was canceled. My surgeon was in removing someone else's thyroid, so they told us to come back later, so we went for lunch.
An hour later, we come back, and as it turns out, they had been looking for us. They sent us up to Pre-Op. We get there, and the nurse (who was all pissed off) sends us into the surgical prep room and assigns me a bed. I make it very clear - there is no surgery planned today! She tells us to wait. Another nurse comes up and we have to make it clear again - NO SURGERY TODAY! Somehow, word never spread.

The surgeon finished with his last patient and comes in. He was expecting the surgery, too, but is completely understanding - this has all been rushed, and none of my concerns have been addressed. There had been a HUGE miscommunication starting with the ENT who ordered the CT scan and said "OMG, HE CAN'T BREATHE!" without talking to me. The surgeon said he would have never ordered the MRI I had on Saturday if he had known about last Thursday's CT scan.
Either way, the thyroid needs to come out. Fairly soon.
The Surgeon came up to me and kicked my tires, so to speak. He checked the swelling in my neck and said , "oh, that's not so bad, I've seen much worse. Here's what I'll do: (using his index finger as a scalpel), I'll slice you here and here (slices my neck), get the thyroid out, close you up and you'll be able to breathe better than ever." The risks are bleeding, blood calcium issues and permanent hoarseness. He also says that the possibility of having to go through my chest is so minuscule that I shouldn't worry about it. I feel pretty confident with him.

So, tomorrow, I have to call his office and schedule the surgery. I feel much better about all of this. It's still weird to know that I'm going to be losing an organ and on meds the rest of my life, but I'll get awesome breathing in exchange, and I've never had that before.

But today, I get a medical reprieve; it's my birthday, dammit, and I'm going to enjoy it!

Update

The surgery is tentatively scheduled for Tuesday morning, but at this point, it seems unlikely as I'm sporting a 100F fever and some seriously nasty tonsils. Add a touch of cough. This actually sucks because I was all geared up and ready to go.

The severity of the situation has been laid out in detail and I understand everyone's concern: my thyroid is massive and has grown well below my sternum. It's causing a moderate compression of my trachea. From the doc and the surgeon's standpoint, it's , "HOLY CRAP, HE CAN'T BREATHE!" From my perspective, it's something that I've just been dealing with because I've always had crappy breathing.

So, the big bugger is coming out. Maybe not this week, but surely as soon as I'm well enough.

Saturday was an MRI and tomorrow is a bronchoscopy to measure my airway. Dude knocks me out and shoves a ruler down my throat. Sweet!

I decided to Googlestalk my surgeon. He's a very well known surgeon who seems to be quite good at what he does. A little extra hunting led me to his Twitter and Facebook pages; he only has 14 friends. Unacceptable. I only allow people with more than 20 friends to perform surgery on me. :)