And the headache continues

I hate medical insurance.

I know, I know. "Hate" is a very strong word. It's not often I use that word and truly mean it. But in this case, I feel absolutely justified in my use of it. Medical insurance has caused nothing but trouble in my life. When dealing with cancer several years ago, the insurance carrier who my employer was using refused to pay any of my bills, claiming it was a "pre-existing condition." They stuck me with around $60,000 in medical bills. Needless to say, this has caused some problems in my life. Now today, cancer is once again being... well... cancerous.

After getting all treated and "cured" of all that nasty cancer business, I still have to go in for yearly checkups. I have to get my blood drawn to make sure that my T3, T4 and thyroglobulin levels are good. I have to get an ultrasound on my neck to make sure nothing's regrown. And I have to shake my doctor's hand and say "Thanks for not letting me die!" It's a pretty simple set of procedures, really, but it's costly nonetheless. For that trouble, the doctor's office charges $641. Ouch. Not to fear, medical insurance to the rescue! ...or maybe not. While they were kind enough to get the charges reduced to $221.91 due to "preferred rates" (umm...what?), they didn't actually pay any of it. Not a single penny. Nada. But wait, my work has planned for just such a problem! We have a second bit of coverage titled "Hospital Confinement Indemnity (GAP) Insurance." Yes, that does say "Hospital." No, I did not get this work done at a hospital. Don't worry, I'll come back to that. So now, a few phone calls, emails and hours later, I've got a GAP (is this supposed to be an acronym for something? Because I sure don't see it...) claim form to fill out and send along to this OTHER insurance company. As I am informed by our insurance carrier however, they will not cover the office visit. They will only cover the procedures performed there. So this leaves me with $61.37 (their cute little preferred rate) to pay of an original $641 bill. Not bad; I can handle that. After filling out the form, gathering up my doctor's bill, my original insurance explanation of benefits (in which they explained that they are going to do absolutely jack,) I faxed off all 9(!) pages to the GAP insurance company. Done deal! I should have a check in my hand within 10 days; fantastic!

But wait, you say, what about that "Hospital" business? This is where I get confused. I did not have my procedures performed at a hospital. I have not even been to a hospital in some time (knock on wood) and that is perfectly okay with me. This GAP coverage is specifically worded to be for hospital confinement resulting from sickness or injury. Granted, there is an "outpatient" section under which I may theoretically be covered, but I'm not holding my breath. Our insurance broker is absolutely certain this will be covered. After all, that's exactly why we got this silly second bit of coverage. Why wouldn't it cover it?

I'm just waiting to cringe and bend over at this point.

I hate medical insurance.

Low iodine confusion

Even though I am drawing near to the end of my current cycle of the low iodine diet, I have still been looking into the specifics more and more closely over recent days. This is especially after receiving a print-out from my doctor's office yesterday (I had been instructed over the phone to begin the LID, thus never received it before) which brought up many questions for me.

You see, every publication I have found regarding the low iodine diet disagrees on some points... usually several. In general, they agree on most things. I have found some almost disturbing discrepancies, however. For instance, every guideline I have seen so far says no soy products. Well, almost. According to Dr. Kenneth Ain, in The Low Iodine Cookbook (Norene Gilletz; Your Health Press, 2005)

Soy lecithin is extracted from soy oil, rather than the protein parts, and has just trace amounts of soy proteins (only enough to bother people with soy allergies). Soy oil, in reasonable amounts (usually as part of a vegetable oil mixture or a minor ingredient) won’t add any discernible iodine to the diet and is not goitrogenic. There is no reason to think that soy lecithin is in any way unsafe for the LID.

Okay, good to know. SOME soy products are safe. Then I receive these guidelines from my doctor's office yesterday, and there is NO mention of soy at all. Not a single word of it.

Another point of confusion is with fruits. Yes, fruits. According to the ThyCa LID guidelines, there are no issues with fruits, aside from maraschino cherries and rhubarb. They make for wonderful snack foods and there are no problems with any fruits aside from the two mentioned. I have been going by this notion for the duration of my diet so far... only to find that this may be grossly wrong. The banana & strawberry smoothies I have been making for breakfast may in fact be quite high in iodine. The guidelines I received from my doctor yesterday states:

Allowed fruits and fruit juices: Apple (fresh only), apple juice, apricots (fresh only), avocado, berries, cherries (fresh only), cranberries, figs (fresh only), grapefruit, grape juice, grapes, mangos, lemon juice, melons, nectarines, oranges, orange juice, peaches (fresh only), pineapple (canned), pineapple juice, plums, tangerines
Disallowed fruits: Bananas, dried fruit (raisins), applesauce, fresh pineapple, canned peaches or any fruit not listed in the foods allowed.

Now I have found, through my own research today, thanks to The World's Healthiest Foods Website, that strawberries are in fact one of the most iodine rich foods in the world. This source, at least, provides solid numbers. This I can work with. I'm tired of all of these lists of do's and don'ts with no numbers or resources to back them up. I need to start finding solid numbers.

I could continue on and on with the discrepancies between the diets, but what's the point? Nobody really agrees. For my own sanity, however, I need a single definitive source. I need to know the iodine content of different foods. I need to know what foods I can and cannot eat while on this diet. I was astounded yesterday when I was reprimanded for drinking orange juice on the diet, by a lab technician who was assisting with my case! Not even doctor's staff knows the specifics of the diet! This should go to show just how contended the diet really is!

I think I have some work ahead of me...

Cancer haiku!

I'm disappointed
I got irradiated
...and I still don't glow.

Don't ask. These things just come to me out of the aether.

Hooray for TSH!

I get radiation Monday! Yay! (I know. Strange to be cheering for being irradiated... but it is a good thing.)

Obviously, it did not happen this past Tuesday. When I first got my blood tested for TSH levels, on the 4th, I believe my I was at a 12. Now I realize that this number, by itself, means nothing... it will become slightly more clear though. This past Monday, I went in to get checked again (see my previous posts...) and my levels came back at a 25. Unfortunately, this did not meet the required level of 35. Hence the lack of radiation on Tuesday. Of course, this does not get me off the hook for radiation, nor would I want it to. So yesterday, I went in to get tested again. I just got the call from the doctor, and obviously, from the beginning of the post, I met the required levels. Not only did I go up to 35... I shot all the way up to 52! Holy crap! (I *believe* these measurements are in parts per billion, in case you're curious.) I guess I've been doing a good job with this diet after all! Hell, I've already been working on planning a Christmas feast with all low iodine ingredients! ...and if anybody has recommendations on that, I'm open to them...

Anyways, I'm happy! 10:00am on Monday, I go in to get my dose! YAY!

EDIT: It turns out, the TSH measurement unit is in uU/ml, which means picograms per milliliter... a picogram being one trillionth of a gram. Learn something every day!

Floating

I feel a bit like I'm floating right now. Not the happy Cloud 9 floating that everybody talks about... this is more like an "in limbo" floating. It's a bit odd.

Right this moment, I should not, by any means, be awake. I should not have the least bit of consciousness. From when I woke up Saturday morning until now, I've had a total of right around 9 hours of sleep... all of it restless, waking constantly, tossing and turning. Basically useless sleep. Yesterday, I was running on mostly adrenaline. Today, I woke myself with coffee which would easily be mistaken for tar. I'm sure that kept me going most of the day. The rest of the day, I've had to keep myself moving. Do a few pull-ups... pace around the house... move some things around... clean, go shopping, whatever. I just spent most of the past 3 hours in the kitchen, cooking. I made a pizza from scratch, each piece of it, from the dough itself, to the hamburger and other toppings. Even the pizza sauce was cooked during all of this. Not only that, I made enough dough for a second pizza, which is now in the freezer... and I took the leftover hamburger that I cooked up and turned it into a mini stir fry of sorts (which would work wonderfully for some fajitas, I must say.) Regardless, my point is, I kept myself running around the kitchen all that time in order to just keep myself going. As soon as I sat down to enjoy the fruits of my labor, I could feel the energy draining from my body. The only problem is, now that I want to go to sleep, I find myself unable to again.

It's an odd thing, being unable to sleep, when you feel exhausted enough to sleep for two days straight. I've never had a problem with insomnia before, but I certainly feel sorry now for people who suffer this chronically. I don't know what it is, really, that's keeping me awake. It could very well be stress. Stress over my cancer... over whether I get radiation in the morning or not. Stress over work... whether I will be able to live up to my word and meet the deadlines that have been set, despite the fact that I can hardly keep myself focused on one thing right now. Writing seems easier to focus on, but this is just a pouring out of my thoughts. I'm not having to think through every possible scenario that this writing could go through, like I have to when I'm writing code.

I think this whole radiation thing may really be getting to me. I'm chomping at the bit for this right now. I've been so freaked out over my diet, I've cut my iodine intake to practically nothing. I take no risks with what I eat. Aside from meals I have cooked myself, the only ones I have had were at my favorite bar, Boulders on Broadway, where they actually have my diet restrictions pinned up in back so that they can figure out things to make for me. I love those people, I really do. How many places would do something like that for just one patron? I can't personally think of any others. They even custom tailored a beer dinner for me. This was an event with around 40 people, eating dishes custom crafted to go with the particular beers that were being presented. Obviously, some of these things, I was unable to eat. Going above and beyond, they created a whole different menu for me to replace these things. This was something I never expected. In fact, I told them I wouldn't be able to attend because of my diet. They would have none of that talk. Obviously.

Possibly the biggest reason I'm still anxious about the radiation right now is that I still don't know if I'm going to be receiving it... and I'm scheduled for 11:00 tomorrow morning. This morning, I went in and got my blood drawn again for my final test. It was written specifically with orders to get the results immediately, by this afternoon. Of course, as has been the case lately, Murphy was lurking in the shadows. The machine which would analyze my blood for TSH levels was not working this morning. This means that they had to send my blood over to Sonora Quest Labs to get the results. Sonora Quest, however, was unable to get the results by this afternoon; they aren't ruled by my doctor's office... they have other orders to fill. Because of all this, my results were delayed until 8:00am tomorrow morning. Three hours before I'm supposed to get my radiation dose. The absolute drop dead cut-off point for my results is 9:00am in order for me to receive the dose at 11:00am.

Several people have suggested sleeping pills already, but honestly, I refuse. Maybe it's that I don't trust the pills. Or maybe it's that I don't trust myself with them. I don't really know... I don't think it really matters. Whatever the case, I won't be using them. I fully intend to simply let myself drift off to sleep in a natural fashion. How I'm going to accomplish that, I'm still not certain.

But I'm certainly going to try.

The real effects of cancer

Lance Armstrong said it right in his book, It's Not About The Bike: My Journey Back to Life.

When you have lived for an entire year terrified of dying, you feel like you deserve to spend the rest of your days on a permanent vacation. You can't, of course; you have to return to your family, your peers, and your profession.

Now granted, I haven't gone through anywhere near the ordeal that Mr. Armstrong did, and I am eternally grateful for that, but the same thing still applies. You see, when I was first in Dr. Glenn Rothman's office and he told me that I had cancer, I had no reaction. None at all. I just said, "Okay. What do I do now?" as though it were an everyday thing. I said it the same way I would place an order for food. No emotion, just a routine piece of conversation. This was my personal form of shock. Any and all emotions I had in reaction to what I had just found out went straight to the back of my mind, locked away in a little box, marked "Do not open."

Eventually, however, as this whole ordeal unfolded, that box did come open and I did start to react. I think one of the biggest triggers was when I started reading Mr. Armstrong's book. In the beginning of his book, he recounts his initial trip to the doctor when he first found that he had cancer. Not only did he have testicular cancer, it had metastasized into his lungs. Reading this piece, seeing another person's situation, his reactions, his emotions, was just too much for me to handle. That box opened wide and I finally reacted. I cried. This is cancer. This is serious.

The quote I cited earlier is so true it hurts. After you have cancer, no matter what form, no matter how curable, everything else seems inconsequential. It doesn't matter how successful you are in life, cancer can take all of that away in one fell swoop. So what's the point? These are, in fact, thoughts that I am still fighting with. It's made especially difficult by the fact that I am currently without any thyroid hormones; I was taken off of my pills in preparation for my radioiodine treatment. This has put my entire chemical balance out of wack. Earlier this morning, I was freezing cold... now I'm sweating. I had to fight myself for a half hour to even open my eyes this morning, when normally I jump out of bed as soon as the alarm goes off. Another unfortunate side effect has been my mood changes. I have begun to experience mood swings so bad that I would be labeled as bipolar. All of this is still just the tip of the iceberg though. Needless to say, this has been quite a trying time.

One thing that I have learned from this whole ordeal, however, is more patience... if that's even possible. Since November 23rd, I have been on a special "low iodine" diet. Essentially, I have to cook all of my own food. I can't trust almost any processed, packaged food to be free of iodine. As another nice side effect, this has gotten me into the kitchen much more, and I have been becoming much more handy at cooking. In addition to the diet, I have also been, as I mentioned, off of my medication since November 29th. This is all in preparation for my radioiodine treatment which will be, I am hoping, on December 11th. This is supposing that all of my blood tests come back with the desired results.

The way this whole thing works is, on December 11th, at 11:00am, I will go in to my doctor's office and he will give me a pill. I'm somewhat fuzzy on the exact details at this point, but I'm fairly certain that I will wash down this pill and head home. Now here is a bit of frightening information. For 72 hours after I take this pill, I can not be around infants or pregnant women, as I could cause irreversible damage to the underdeveloped thyroids. It is also recommended that I keep at least a one to two meter distance from other people, just to be safe. Once I have received this pill, 7-10 days later, I will go see the doctor again for a body scan to make sure that the radioiodine was sucked up and is doing the job that it's supposed to be doing. At this point, I will finally be able to go back on a normal diet (first thing I'm eating after is sushi!) and will start taking my medicine again. This will be a glorious day, I assure you. Just in time for Christmas vacation as well! Of course, this is all assuming that the TSH levels in my blood are at an appropriate level, indicating that my body is severely starved of iodine.

So now, this whole thing has been going on since August, when I first went to see Dr. Smith. The main part of the treatment will be finished near the end of December... but it won't really be over. I'm going to be taking pills for the rest of my life, to replace the hormones that my thyroid would be producing. I am also going to have to go in for yearly body scans... meaning that I will be dealing with this diet and no medicine again, once a year. If I ever move, I will have to get copies of all of my medical records (which I have been keeping a personal copy of now anyhow) and find a new endocrinologist immediately near my new home. Then again, Dr. Duick is, in himself, a reason not to move. From everything I have heard and experienced so far, he is one of the best. Hell, when I scheduled my first post-op appointment with him, I wasn't able to get in to see him for over a month! That says something about his demand, for sure. What are the chances that I can find somebody as good in a new location?

I said before that all of this has taught me more patience, and it had. That's not the only thing it has taught me though. Through all of this I have gained more humility, awareness, compassion... and certainly knowledge. You don't go through something like cancer without learning about exactly what is happening to you. I ask the doctors and nurses about everything; what they're doing and why, what they are looking for when they draw my blood, what the results are and what ranges they are looking for on everything. Cancer is certainly not something I would ever wish on another living being... but it is most definitely a growing experience which most people would benefit greatly from. A bit of an odd sentiment, I realize, but very true. Here's an even stranger way of putting it: I think that society as a whole would benefit, and be much better for it, if everybody had to go through the experience of dealing with cancer in some way. Then again, we may just end up with a society full of lazy people, never wanting to work again...

Why I Hate Doctors.

Or, "Surprise! You've got cancer."

Yes, that's the news I heard today when I went to a second doctor. Luckily, it's not a serious cancer. The name is some ridiculously long medical mumbo-jumo for thyroid cancer. Am I scared? Not really. Every person I know in the medical field assures me that this is the "best" cancer you can have. It's basically 100% curable. I just have to have my thyroid removed, take a radioactive iodine pill, and then take thyroid supplements for the rest of my life. Simple enough.

For my last surgery, yes, I was scared. Everything was unknown. I had never had surgery before. I had never been put under before. I wasn't even sure I trusted the doctor. I was scared. Luckily, his colleague was there to assist with the surgery, and was greeted warmly when we went into the OR. This made me go under with a nice warm fuzzy feeling, not entirely brought on by the medications they were pumping through my system.

This time. I know what's going to happen. I already have the experience of being put under, and I already trust this doctor who will be performing the surgery. Let me explain this whole big trust thing going on here a little more. I'll start from the beginning. First off, right when I meet the first doctor, Dr. Douglas Smith, he's got a smile that belongs on a used car salesman. A bit creepy. But he seems to know his shit. He checks the lump, looks down my throat with a scope, says it's most likely just a cyst but we're going to get a CT to check it out and then proceed with surgery to get it removed. We are also going to try, as another possible route, some antibiotics... according to Dr. Smith, cysts will sometimes react to antibiotics because they can be just large infections. Sounds good to me.

So, head from the doctor's office, off to the pharmacy to pick up that antibiotic. May as well get it taken care of right away. Get to the pharmacy, give the script to the pharmacist.... he pulls up my medical records... looks at the script... looks back at my medical records... looks at me... and asks, "What doctor gave you this prescription?"

A bit confused, I tell him, "Dr. Douglas Smith."

After which he asks me for Dr. Smith's phone number. Still confused, I give him the phone number for the doctor and inquire as to why he might need it. "Your records state that you are allergic to amoxicillin." I confirm with a nod. "What kind of reaction do you get when you take it?"

Getting even more confused, since I know the doctor didn't prescribe me amoxicillin, I simply tell him "Hives."

"That's one step in allergic reaction before anaphylactic shock. This prescription is for a derivative of amoxicillin and could possibly kill you if you have the same reaction to it."

This was quite shocking. Obviously. A major screwup which could have been potentially very disastrous. At this point, I should have gotten a clue.

I never claimed to be very bright.

So we got my prescription fixed and, being that it was only a far outside chance that it would have any effect anyhow, it did nothing. A week later, I got a phone call telling me that a surgery date had been set and I needed to come in and finalize some paperwork. "Well," I figure, "he specializes in surgery... not medicine." Stupid rationalization, I know. I managed to convince myself with it though, because I wanted this over with. Plus I was scared out of my wits... that may have had something to do with it. I need to get somebody to go along with me for these types of things and smack me with a billy club when I do something stupid. But I digress...

On the morning of Wednesday, August 29, 2007, I go in for surgery. Dr. Smith comes in with his far-too-toothy smile to greet me before surgery. I'm bodily shaking... only in part because of my reaction to needles... what with a large IV needle sticking out of my arm now and all. However, when we get into the OR, I hear a friendly "Ah, Dr. Bartell, it's good to see you!" (Dr. Thad Bartell is Dr. Smith's aforementioned associate.) Next thing I knew, I was waking up 2 hours later in the recovery room, receiving several doses of morphine and demerol. I was happy.

About a week later, Dr. Smith calls me up to tell me that I need to speak with a Dr. Glenn Rothman. He's rather vague about why. All he tells me is that there was "a growth" in the middle of the cyst that was removed, and it is likely "a common thyroid problem," which is "easily curable." Well, that doesn't sound so bad. I set up an appointment with the new doctor and go about my business, figuring it's something caused from hyperthyroidism. That's not so bad. I can deal with that.

Today, I went in for my appointment, and after talking for less than a minute, Dr. Rothman asks me, "Wait, what exactly did Dr. Smith tell you about why you were coming here?" So I tell him what Dr. Smith told me. The next words out of his mouth, I could never hear again from a doctor and be live perfectly happy. "I'm so sorry," he told me. He then proceeds to tell me what Dr. Smith should have. That this growth was in fact cancerous, although it is easily treatable. Amazingly I maintained my cool through this whole thing... I think. Next step, Dr. Rothman is ordering the results of my CT scan and scheduling a chest x-ray and ultrasound just to be absolutely certain that nothing is missed. He's thorough. I like that. He's candid, he's kind, to the point, sincere. This guy, I feel I can trust. I hope. At least I can be more analytical with this one. I've already looked into his credentials. They seem impressive enough. I don't know anybody who knows of him, but I'm going to keep asking around.

I just want this all over with.

Then, no more doctors. For a long, long time.

Franken-me!

So uh yea, for those who don't know, I had surgery on Wednesday morning. I just now took the gauze off, and this is what I was greeted by!

Holy monkey! When he told me 9 stitches, I was figuring on something smaller than this! Kinda cool though... just too bad it isn't Halloween, I wouldn't even need a costume! Anyhow, just thought I would share this with the world. :)