Thursday, September 13, 2012

Fallout Boy - Day One




So, I'm radioactive.

 On purpose.

 ... Aint that a kick in the head.

My regular readers can skip ahead to the section after this, unless you'd like a recap of the course of the cancer. I'm writing this up for other thyroid cancer fighters, who will be coming to this page without having read me before.

So, once more unto the breach my friends...

The story so far...

For those of you just tuning in to our show, your humble narrator has been suffering from unusual health problems with endocrine symptoms since sometime in 2004 (or probably before, but it started being noticeable in '04).

By late 2005 it was very clear something was wrong, but we couldn't find any cause. Basically, I had lots of symptoms of diseases I didn't have; and they got progressively worse and weirder.

I also went from a healthy and strong 285-295lbs, working out regularly with under 15% bodyfat; to a damn near crippled 497lbs at 57% bodyfat; and most of that weight was gained about 4 of those 7 years

...and doesn't include the losing 70, then gaining 90, then losing 60, then gaining 100 see saw back and forth. Added up it was over 600lbs just in big swings of 40lbs or more.

Oh, and most of it was on a severely calorie restricted diet. At one point I was eating under 1200 calories a day, at over 400lbs, and I was still gaining weight; because my metabolic rate had fallen to well under 1/2 normal caloric burn per pound per day, and because I was retaining ever more water (eventually to the point it threatened my heart, breathing, blood pressure, and circulation in my hands and feet; never mind the great deal of pain it caused).

In early 2011, after 7 different doctors in 3 states over more than 6 years; we finally figured out what I had...

It was thyroid cancer.

Of course, I had been tested for thyroid problems, multiple times in fact; and my results were always inconsistent  Sometimes very high, sometimes very low, sometimes things that should be high when other things were high were low etc... etc...

But none of the blood tests were consistent with thyroid cancer.

I'd had head MRI, chest MRI, abdominal MRI, contrast on all of them, pet scans, cat scans, ultrasounds; in fact multiples of all of them... But because my blood tests weren't consistent with thyroid cancer, they'd never scanned for thyroid cancer, or even FELT my neck.

My endocrinologist saved my life, because he (and his PA) were the first to say "well, sometimes the blood tests are wrong, let's just check anyway".

They found what, at the time, was a potato sized tumor in my neck.

The other weird symptoms were side effects of the wild fluctuations in thyroid function, from paraneoplastic syndrome caused by the thyroid cancer, from microlesions all over my endocrine system making it nuts (which were also thrown off by the thyroid tumor); and from my body attempting to deal with all of it... very unsuccessfully.

Great, I finally had a diagnosis, and we knew how to treat it. Even better, there were ways to address the symptoms even before we got the cancer out.

The theory was that once we got the big main mass out, the other issues would either be easily treatable, or may even go away on their own.

BUT... they wanted me to wait a while before we went after the big tumor.

Because I had gained so much weight, my care team wanted me to lose over 140lbs before we removed the big tumor; to reduce the risk of death or serious side effects on the operating table.

140lbs is a lot of weight to lose; and I had been GAINING weight for years even on diets...

Initially, they offered me a gastric bypass; but I wasn't really happy with that idea. I was pretty sure that with the right medications helping me control my hormones and water weight, I could do it.

So I did it...

Once we figured out what was wrong, we were able to get me on a BIG STUPID PILE of medications  (including biweekly hormone injections, and literally dozens of pills a day) that allowed me to get rid of a lot of my ridiculous water retention, and start getting my metabolic rate back into something approaching a reasonable range.

With the medications, I was able to lose 153lbs in about 14 months; but my weight wouldn't stabilize. I would fluctuate as much as 60lbs up or down in a week or two. So my care team debated what to do for a few months; my endocrinologist wanting to do the surgery as soon as possible, and my oncological surgeon wanting to hold off on more weight loss and my weight stabilizing.

Finally, my endocrinologist, the leader of my care team, decided to get another ultrasound on my tumor; and it's good that he did, because he found that it had more than doubled in size and volume in the 12 months since my previous ultrasound.

At that point, he asked my surgeon to operate, but she still insisted that we stabilize my weight... So we found another surgeon.

That was the end of June. I had my surgical consult in mid July, and got scheduled for surgery in mid-August (the first slot the surgeon was able to get me into).

August 13th I had my tumor, as well as my whole thyroid removed (though they were able to save both parathyroids), in a surgery that took more than twice as long as expected... Because the tumor had grown even larger just in the six weeks since the ultrasound.

When they finally took the tumor out, it was a 10.2cm rough sphere (about 4"); and with the blood and thyroid included, the total mass removed was almost SIX POUNDS.

They got the pathology report back after the surgery, and I met with my surgeon, who told me that it was very lucky they had got it when they did, because if they hadn't I would likely only have had a few months before it was critical (could have killed me).

According to the pathology, this was an extremely aggressive malignancy (which we suspected given the growth rate of course), and that while there appeared to be no lymphocytic involvement, there was extensive vascular infiltration. Given the size, mass, and nature of the malignancy; along with the other symptoms (microlesions etc...), I would need to undergo aggressive radiation therapy, and a full body scan to check for other masses etc...

I knew this was a possibility, so I was preparing for Radioactive Ablative Iodine (RAI) therapy from day one. I have been on a mostly low iodine diet, and have not taken any thyroid supplementation, since two weeks before my surgery.

As soon as we got the lab results back, I went on an ultra low iodine diet, and tested my thyroid levels...  (they look for a TSH of at least 30, and over 40 is preferred. 9 days after surgery I was at 40, 20 days after surgery I was at 70) such that I was ready to take my first radiation treatment one month from my surgery (the minimum time allowed by protocol).

The various and sundry details, setbacks, annoyances, discoveries and whatnot have all been written about in fairly great detail in these pages these past two years; and are roughly indexed in this link:

http://anarchangel.blogspot.com/search/label/Cancer

And now, you're caught up to present day, at 2pm

At just about 1400 pacific today, a very nice guy named Bobby, very carefully (and thankfully very patient in letting me take some pictures) unscrewed a small shielded vessel containing a small sealed bottle, which he then unsealed and stepped back from:






After letting me take my pictures, he then very carefully put a small bluish white capsule containing a 150 millicurie equivalent dose of Iodine-131 onto my tongue, and had me swallow it.

After I finished the paperwork, I just randomly stood in the room near his dose calibrator, and it showed 85 microcuries from about four feet away (I cropped in on it in this pic):



With the probe just over my gullet (but not touching), his calibrated dosimeter registered me at 160 millirems per hour (which is also 1600 microsieverts per hour).

That's 1.6 times the Nuclear Regulatory Commissions (NRC) dosage limit for non-radiation workers for entire YEAR,  as an hourly dose rate. So, Yay!


Remember, that's not what's inside me (which is much more), it's what I'd be irradiating someone else who was standing right up against me.

I'm really glad I took the opportunity to ride my motorcycle down to the clinic. It was an absolutely amazingly beautiful day; high 70's, breezy and clear... Just beautiful, especially on a bike. It makes the 75 miles actually enjoyable, rather than a chore.

It couldn't have been a more amazing day, and I took the extra long and scenic ways home; stopped by the lake a while, then rode off deep into the woods away from everything where I knew there was a view, and just enjoyed it; because that's likely the last chance I'm going to get to take a lovely ride on a nice sunny day for a while.

I did notice one thing though; the GPS on my phone lost track when I touched it. Not surprising since, the tiny GPS antennae in the phone isn't exactly robust, and a VERY small amount of interference is all it takes to glitch one. It was only while I was actually touching the case though, as soon as I left it alone in its mount it was fine.

I was hoping that there'd be enough beta excitation to make my watch hands glow brighter; but it certainly wasn't evident in daylight even holding my hands up around the face to darken it up.... I'll try it again later, and it doesn't take all the much beta for a phosphor reaction; but I'm guessing there won't be much if anything noticeable.

Yesterday we got our radioactive dosimeter (RADEX 1706), and calibrated it to our local daytime and nighttime background radiation, which varied from 0.12-0.16 uSv/h day, and 0.08-0.10 uSv/h night; depending on where we measured, what time of day etc...

Basically, across 10 long baseline measurements (long baseline being 4x the 26 second short baseline acquisition time; or 104 seconds each), across 12 hours day and night, the baseline background radiation here is 0.12uSv/h; which is almost exactly 1/2 the national average; and unusually, is 1/3 the statewide average of neighboring Washington state.

Of course, that's still damn near nothing; it's about the same dosage of radiation you get from eating a banana.

Wait what, bananas are radioactive? AHHHH WE"RE ALL GONNA DIE!!!!

Or not...

EVERYTHING is radioactive; it's just a matter of how much.

Bananas have a large amount of potassium. Potassium naturally has a small amount of radioactive potassium isotopes mixed in; enough to give you a 0.098 or about 0.1 microsievert dose of radiation.

So, for those geniuses who constantly spout off about non-ionizing radiation, and how "there is no safe dose of radiation" etc...

Yeah, you're an idiot. Sorry.

When I got back home, I had Mel go to the gate with the meter and check when it hit 50, and then 100 microsieverts per hour... Which was about 35 and 25 feet away respectively.

Then had her walk up to the main floor and scan as I went by down to the basement (so she didn't have to get any closer for any further exposure). From a few feet inside the house, it peaked at around 80 uSv/h as I walked about 15 feet from the front door.


You might note, all that weight I lost? The 153lbs? Yeah, with the hypothyroid and the being off the meds for now about two months etc... All but 50lbs of it is back.

I've gained 40lbs since the surgery alone (and that's after losing 20 in the few days after the surgery); most of that in water. I feel like an overfilled water balloon.

 I can't wait until I can get back on my meds, and get my thyroid supplementation up (400mcg... rather a big difference from zero); and start losing weight again. Oh, even with the nausea I probably won't be losing any weight during radiation, because of the thyroid thing. My metabolism is so suppressed I can't keep my hands or feet warm; and my water retention is through the roof.

So, the rest of the post I've decided we're better off without pics, and we'll be talking about some bodily functions....

About the time I got home, the headache and nausea started coming on; and have been steadily coming on since.

Also, I was drinking mass quantities (as I had been advised to do; and I decided to test out one of the things all the websites tell you is a big safety issue... Just how much radiation you "pass out with water" so to speak.

I was... shocked.

From the seat, my ...liquid elimination... showed an effective dosage of 300 uSv/h; and that was before the full uptake (apparently it's going to rise further during the night; and may continue rising til tomorrow). Even after one flush, it was 80 uSv/h, and two it was 24...

Damn...

The docs told me that the more I could eliminate, the faster the radiation would come down to safe levels, the fewer side effects I'd have. They say that once per hour is ideal, but I should be going for at least once every two hours (which is about what I've been doing).

So then I ran some distance tests; and again, the engineer in me is amazed at how little attenuation there is from my body, the couch, the table in front of me etc... They're nearly transparent. I knew they would be of course, on the general "nuclear" scale... but we're talking about some very small amounts of radioactive material, with a comparatively very low energy isotope.

When I first got home, and sat myself in my normal position in the basement, Mels normal position on the main floor was below 10 uSv/h, but only just (9); and that's with about a 30 foot slant range, a floor and ceiling, and a bunch of furniture in between.

Touching the meter, holding it out at arms length, I was over 1000uSv/h (the max detection on my meter in that ranging), so I didn't bother checking the rating touching my abdomen. 3 feet away at the other end of the couch from my normal basement seating position was at 800 uSv/h. Six feet away was 600 uSv/h, and 12 feet was 480 uSv/h.

Honestly, these numbers all really surprised me. I really wasn't expecting that high... and they actually are high enough that with a few hours exposure, they could measurably increase someones rate of cancer or having children with birth defects.

Of course, that also means they increase my chances of other cancers; but since I've already got cancer that could kill me if I don't do it... That's the way it works.

Oh and never mind the fact that they didn't follow inverse square all that well; life isn't a physics problem, and atmosphere isn't vacuum.

The good news, is that the numbers are going down fast.

A note on rounding:
For these measurement, my meter can display 3 digits (internally it calculates to four decimal places) however, unless obviously otherwise, I am rounding as follows (always rounding up):
  • 1000+ is off the scale
  • 26-1000 to the nearest higher 5
  • 10-25 to the nearest higher 1
  • 0-9.9 to the nearest higher .1

6pm

Two hours later at 6pm (four hours after the dose), I was still over 1000 uSv/h at arms length touch, but hopefully not too much, because it took 20 seconds to get there. 3ft was 400 uSv/h, 6ft was 200 uSv/h, 12 ft was just 40 uSv/h.

However, my second elimination test showed 600 uSv/h!!! yipes.

8pm

I ran another series at 8pm, (six hours after dose), and I was finally below 1000uSv/h at arms length touch (850 uSv/h), 3ft was 200 uSv/h, 6ft was 80 uSv/h, and 12ft was 30 uSv/h

Third elimination test, another 610 uSv/h.

At 8, I also had Mel run the floor test, and now her seating position is only getting about 3 uSv/h; which is well below the safe threshold for reasonably long exposures ( 5 uSv/h) for pregnant women. So we're good with our current arrangements of things.

10pm 

Now as I write this it's 10pm, and I've got to say, the nausea and wooziness/woogieness is a bit much... The fatigue and ache and lack of body temp control from being severely hypothyroid are just WAY worse... But I'm not losing it or anything. I had dinner an hour ago and I'm holding it down no problem.

Also, I've been sucking on candies, and drinking a lot of sports drink and OJ, as is recommended to help elimination and to avoid salivary gland problems.

Seems to be working.

Let me just run my next test series...

Ok, arms length touch was 600 uSv/h, but I was still over 1000 uSv/h at my torso. I have to move out 12" to get below 1000 uSv/h. 3 ft out was 130 uSv/h, 6ft was 40 uSv/h, and 12ft was 25 uSv/h; with elimination at 520 uSv/h

I'll probably be awake 'til 2am, and if I am I'll update at midnight and 2am as well; to get a 12 hour baseline on the radiation.

Tomorrow, once I wake up, I'm going to switch to a 4 hour measurement cycle. I may stick at 4 hour, or go to six hours on Saturday.  I'm spreadsheeting all this data, and at the end of this I'm going to graph out the radiation dosage and distance over time.

Midnight update:

Well, the rate of reduction is reducing; as would be expected of course, though the slope isn't particularly consistent.

It was still more than a foot from my torso to get under 1000 uSv/h; and the arms length measurement had only dropped to about 535 uSv/h. The 3ft dropped to 110 uSv/h, the 6ft to 35 uSv/h, and the 12 ft measurement dropped to 22 uSv/h. The elimination test showed 480 uSv/h.

12hr update:

So, 2am, 12 hours after the initial dose, and here we go.

It's still more than a foot from my torso to get under 1000 uSv/h; and the arms length measurement  dropped to about 485 uSv/h. The 3ft dropped to 90 uSv/h, the 6ft to 30 uSv/h, and the 12 ft measurement dropped to 18 uSv/h. The elimination test dropped to 320 uSv/h.

One thing I've noticed, is that once you drop down below 500-600 uSv/h, the radiation dosage is HIGHLY directional; with my sides radiating about 2/3 the energy of my front, and my back radiating about half... Interesting.

I'm sure folks have done this in labs many many times; but I couldn't find it online anywhere; and it's the kind of data I wanted to see and understand when I was doing my research on this cancer, and this therapy so... Here it all is.

Tomorrow etc...

I'll be doing the following days radiation measurements one post per day. Haven't decided if I'll post in the morning and update during the day, or I'll just post it at the end of the night.

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