18 December, 2007

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.

14 December, 2007

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!

Stretch-a-roo!


After almost 9 months with 0 gauge holes in my ears, I finally stretched up to 00. I guess it really was just a matter of time. I was just sitting here at home the other night, getting ready to cook some dinner, and I suddenly said to myself, "Self... I need a stretch." So I ran down to my friendly local piercer, HTC, and got some new suckers popped in! This means that the holes in my ears are now 0.365 inches, or 9.27 millimeters. I wonder how long this one will last...

Plus, on another happy body mod note, I will hopefully be getting back in contact with a tattoo artist I used to know, who I would absolutely LURV to have start my ink!

10 December, 2007

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.

05 December, 2007

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...

03 December, 2007

Amen!


That is all.