Thursday, September 20, 2012

Fallout Boy - Day 8: Tired of Being a Radioactive Zebra

NOTE: I'm splitting the "fallout boy" post for today into two parts. This first part will be the story of the day; the second will be about the data from today.

So I had my full body gamma scan today.

Or rather, Mel and I took the 75 mile drive to the hospital, and I got into the lab, and onto the Gamma Scanner...

...and the damn machine broke while I was in it.

They had started the scan, but decided they wanted to reposition me and start over.  So they paused the scan; and as they were pulling me out of the machine, it went into a continuous reboot loop.

It was so bad, they got the manufacturers tech rep on the phone, and even he couldn't get it to stop. So, unfortunately, they couldn't do a full study.

 ...but they did get some pics… including some spot pics with a pinhole scintigraph...

The bad news, is that I've definitely got a lot more cancer left.

Frankly, we were pretty sure of that anyway, because my 7 day residual radiation is WAY higher than clean would be, and my initial uptake was more than five times what they expected. We weren't really surprised there.

They WERE able to get a study of my thyroid bed, and it's so hot it looks like there's still a full thyroid there (on the scintigraph). So much so, the radiologist looked at it and said to me "Are you sure you got a thyroidectomy? It looks like your thyroid is still there".

Yeah, that's how much radiation I took up just in the thyroid bed alone...

Ayup... I'm still a damn radioactive zebra

So anyway, we talked to the radiologist about the radiation measurements, and uptake calculations; and basically he said "yeah, that looks about what I'm seeing here... That's totally consistent".

However, we also talked about the differential body testing we'd done with the dosimeter, and that there didn't seem to be any major concentrations other than the thyroid bed; and we agreed that was probably a solid indication that there were no other LARGE masses.

That said, the levels we were seeing, the few pictures they were able to get, the blood work, the other indications... All of that indicates that I've still got a lot of cancerous tissue floating around in there, and in particular attached to my other endocrine glands.

After that we went up to my endocrinologist, went over the study with him, went over the radiation numbers we saw, talked about the radiologist reports... And basically he said the same thing.

BUT THANK GOD, there's some GOOD news today

Actually, three pieces of good news.

First good thing:

Given the HUGE uptake, and current residual radiation, my docs think that I shouldn't take an immediate second course of radiation.

The nuclear medicine guys ARE going to have to go back next week. They're going to call me tomorrow to schedule me for a scan next week, to look for large masses; but if they don't see any large distant masses (or large concentrations or unexpected involvement in the lungs, bones, kidneys, liver, or lymph nodes) then we have a better plan, than keeping me down another three months with immediate radiation.

My endo thinks that with the dose I've absorbed, that if we give the radiation a couple months to work, there's a good chance all the cancer will be killed off (again, so long as there aren't any large distant masses) without another dose.

Assuming next weeks cam scan is OK, my endo is having me come back in in mid-December. They're going to check my residual radiation, my residual thyroid tissue indicators, my other endocrine bloodwork, and they're going to ultrasound my thyroid bed (and possibly my esophagus and airway, stomach, bladder, and kidneys, depending on what they see on other tests).

They may give me a tracer dose and gamma cam me as well; but they may not, depending on the testing indications.

If at that point they still see cancerous tissue, or indicators in my blood of more cancer, or other misbehaving endocrine glands; then they're going to give me another big dose, to kill whatever residual cancer there may be.

Then two weeks after that, another gamma cam scan, to make sure; followed by another one after six months.

Second good thing:

Under this plan, once my medications have brought me back up to "normal", and I have a few more weeks for my immune system to recover, I am completely cleared to work without restriction.

In fact, I can work now, if I keep my immune system protected and don't overstrain myself.

Which leads to my...

Third good thing:

As of this afternoon, I am back on ALL my medications; including immediate full dose thyroid supplementation (which we will check and adjust in 60 days, to allow my levels to normalize; or sooner if necessary).

I'm also off my ultra-low iodine diet.

I took 400mcg of levothyroxine in the parking lot of the doctors office (about 8 hours ago).

They say it takes a few days to notice the effects.... But in my case, they are very much wrong.


I've been back on my diuretics since Monday, but they weren't having much impact. The docs were glad to have me on them once I hit full uptake (after 48 hours basically), to flush my system out faster...

...But that didn't really happen. I was drinking more than a gallon a day (as much as two gallons in fact) to induce more evacuation and flushing, but I was only evacuating every two to four hours.

Yeah, that's still more than most folks, but I also take a ridiculous amount of diuretics.

For the last 18 months or so, I've been on 8mg of bumetanide, 240mg of furosemide, and 100mg of dyrenium a day (two of the strongest diuretics on the market, and a third that holds on to potassium, to help keep me from becoming hypokalemic); plus associated potassium, vitamin, and mineral supplementation to keep my kindeys from shutting down, or depriving my other organs of essential elements.

I take them staggered out from the time I wake up 'til a few hours before bed, to make sure that there is no time during the day that they are not active and working; and it's the only way that I can control the edema enough to avoid balooning up.

...Or at least it has been... My docs (and Mel and I), are hoping removing the cancer and supplementing the thyroid will fix that; and in a few months I can at least reduce them, and may even be able to go off them entirely.

When the diuretics are working (and I'm drinking a normal amount of fluids), I basically urinate every hour, or more often. Sometimes as much as every 20 minutes. And I don't gain weight that day, or maybe I actually lose some weight that day.

When the diuretics are NOT working, I keep taking the same dosage, nothing else changes; but I only urinate once or twice a day... and I gain weight that day.

It's very frustrating.

Basically, from Monday through today, the diuretics were working a bit. I stopped actually gaining weight, but wasn't losing any. Basically, because my thyroid levels were so low, they were fighting against an inrushing tide.

Since the levo started working though, I've been evacuating damn near constantly... Pretty much a full bladder every 20-30 minutes.

As I write this, it's 10pm. I've lost over 20lbs since I weighed myself 10am yesterday morning; all through water loss, even though I've drunk over 2 gallons in the last 36 hours... And most or all of that loss is in the last eight hours (during which time I've drunk about 64 ounces).

If my past experiences, from when I first went on them two years ago hold true; I may lose 40 lbs in the next two days.

Since I went off my medications (eight or nine weeks ago now I think? I can't even remember. Depending on the medication it was between 2 and 4 weeks before the surgery, now it's more than five weeks after the surgery) through Sunday, I gained 80lbs; mostly water.

Now, in 8 hours, 20lbs gone; and losing fast.

Note: by 11:30pm, 90 minutes after writing that, I had urinated four more times, drunk another 16ounces, but lost another 3.5lbs

I'm most best pleased with that.

Yes, I know, be careful of my electrolyte, vitamin, mineral, and particularly potassium levels. I've been on the damn diuretics two years, I know the deal. It's hard on the kidneys, which is why I get them checked out once a month (and have since I went on the diuretics in the first place. My doc insists on it before he will renew my scrips). We also check iron, calcium, vitamin levels... Pretty much everything they can test for, they do it once a month.

I also check my blood pressure and heart rate at least twice a day (usually three times. Wakeup, midday, and before bed), to make sure I don't get hypovolemic, or hypokalemic; and I carry potassium supplements around with me, and keep orange juice on hand at all times (32oz OJ, is the same as half my days potassium supplementation).

You know what's harder on your body than peeing every 20 minutes?

Carrying around 100lbs to 140lbs of "excess dependent fluid"; choking the circulation out of your extremities  swelling your joints, and compressing your heart, lungs, and nerve trunks.


Tonight, I injected my testosterone for the first time in those months. By tomorrow I'll be feeling it.

I can't tell you how AWFUL you feel when your testosterone drops below 300ng/dl for extended times, or below 150ng/dl for more than a few days... No energy, no strength, no drive...

The labs I got two weeks before the surgery, I was in trough (I hadn't injected in two weeks), and I was down to 70ng/dl.

My last testosterone test was in my postsurgical labs. I was down to below 50ng/dl... and had probably been down there for a while... And without any thyroid function or supplementation, there wasn't much telling my body to make more, so I probably stayed that low or lower the entire time.

MONTHS below 150.

By tomorrow, my testosterone levels will be back over 150, and I'll be feeling it. In a week or so the difference will be VERY obvious to me, and I should be over 350.

In conjunction with the thyroid supplementation (which should also stimulate adrenal, pituitary and testicular activity), after six weeks or so (three injections), I should be back up over 700 ("normal" for a male my age) peak, and above 350 trough... And feeling GREAT because of it.


But just the thyroid supplementation on its own is HUGE.

This afternoon I took my levothyroxine for the first time since the post surgical labs; and I was feeling it within an hour (of course it helps that I take a massive dose of 400mcg, and that I was SOOO low that anything at all is a huge improvement).

My sense of taste and smell started returning within a couple hours. It's still muted (and probably will be for months, as a side effect of both the radiation, and the extended time at extreme hypothyroid state) but I was actually able to taste dinner.

Oh and I was able to feel satiation again.

Tonight for dinner, I had my first completely unrestricted meal in two months (though three weeks ago I had a cheater cheeseburger with friends who were visiting over labor day weekend); a normal sized plate of pasta with butter, oil, sea salt, parmigiana cheese, prosciutto, chicken, and sausage... And I was completely full by the end of it, even though I hadn't eaten breakfast or lunch.

In fact, it's about six hours later, and I'm still not hungry.

It's been nine hours since my levo dose, and I can already tell the muscle aches, the chills and lack of temperature control, the lack of energy and fatigue and exhaustion... Even after just one dose, I can feel that it's a little bit better.

Just a little bit better, but enough that I'm sure it's real, not just in my head; not just feeling better emotionally.

Most importantly though...

I already feel less brain fog. Less fuzziness. Better presence of mind.

I've felt stupid... Like I was trying to think with wool wrapped around my brain... for months now...

I already feel less stupid.

And THAT, is the best news I've had in a while.