Some Very Good News for Christmas

Friday was Chris's second post-radiation follow up. Last Tuesday he'd gone through the thyroid bed ultrasound and a full panel of blood tests. Earlier he'd gone through a radioactive scan to see where the radioactive iodine had picked up.

According to his endocrinologist Chris does not have any distant masses anywhere in his body, or any masses on the thyroid bed. He's been declared either cancer free, or close enough that more radiation can be put off. The tests will be run again in June. But nuking it from orbit seems to have stopped the progression of the cancer in its tracks and may have killed all but the tiniest little speckles off completely.

He's also extremely hypothyroid (which is an odd term for someone without a thyroid) and his adrenals and pituitary are still fairly messed up. Oddly enough this is a good sign, as that means there's not enough thyroid cells left to make enough hormone to even semi- keep up with him. The doc thinks the hypothyroid might be responsible for the messed up adrenals and pituitary so our highest priority is getting the thyroid hormone levels under control.

He'd been on 400 mcg of levothyroxine which should have been the absolute max for his body size but his TSH is at 6.06, well outside of the normal functioning range (anything over 5 is considered hypothyroid) and considerably too far over the goal of under 2 (in order to suppress any remaining cancer from multiplying). The doc has upped him to 600mcg, a quantity so high that insurance won't even cover it and the pharmacist checked with me to make sure there wasn't an extra 0. Thank God it's on the $4 list.

So while he is either cancer-free or out of danger, there's still much to be fixed. He's experiencing all of the normal hypothyroid symptoms plus some of the less well-known. His sleep schedule is non-existent and he's experiencing peripheral neuropathy from various hormone and vitamin deficiencies, as well as not losing the weight. We're working on that. Even now his TSH gap is much higher than the gap I'd experienced when first diagnosed with hypothyroidism 2 years ago and fixing my levels had a dramatic effect. We're hoping the same happens for him.

So why isn't Chris writing this? His symptoms are pretty severe today (peripheral neuropathy sucks) so he's been sleeping it off.

Which means, of course, that's he's actually SLEEPING, which is a huge improvement over the last few weeks and not something I'm keen to interfere with.

So there is our very good news for this Christmas.

Mel

Fallout Boy - Day 14: Still sick as crap

'S'why I haven't done a fallout boy post since Friday. 

Sinus and chest congestion, coughing, sneezing, headache, sore throat,  joint aches, intestinal disturbances poor temperature regulation... Your basic respiratory infection. 

I'm feeling somewhat better than I was a couple days ago; but it's probably going to be hanging on for a while given the condition of my immune system. 

Yes, I know, any kind of infection can be dangerous in my condition. Yes, we're keeping a careful eye on it. Temp and blood pressure every few hours, tons of fluids (I'm the only person I know who GAINS weight when he's sick), and the second anything gets out of bounds I'm going to the ER and/or urgent care.

Such is life with a compromised immune system. 

On the whole weight thing... I lost 38lbs in the first two days after I went on my levothryoxine in conjunction with my diuretics; but I had to stop the diuretics when I got sick, and have gained a bunch of that back. Can't wait until this infection passes so I can start losing weight again. 

I have been keeping my numbers, but I reduced my measurements to one per day when I fell below 50uSv/h peak. My immediate surroundings have all fallen down to a small multiple of background and are slowly fading. My skin surface is less than 20uSv/h everywhere, including directly over my thyroid bed. 

Actually, as of right now, I'm under 20 mSv/h over my thyroid bed, and under 10mSv/h everywhere... Under 5uSv/h most places; including anywhere my wife might be dosed pressed up against me. 

It's FINALLY safe for my wife and I to actually sleep together in the same bed. 

So, from my case, I can say that the exceedingly broad estimates of 4 days to 4 weeks as "safe to sleep with your pregnant wife" are correct; and the "rough guess" of "about two weeks" by my docs is right about on the money... But honestly, for anyone who has to go through this, I STRONGLY recommend you get yourself a beta+gamma dosimeter like we did; because every case is different, and a lot of our assumptions (and a lot of the guidelines) were very much incorrect (both on the good side and the bad side). 

Also, the degree and speed which I have purged radiation out, indicates that I've had a LOT more cancerous tissue dieoff over the past week... Which is probably contributing a lot to how miserable I've felt (purging radioactive dead cancerous tissue causes flulike symptoms in some people); but which otherwise is a good thing.

Oh and even with the thyroid meds, my sense of taste and smell are mostly gone again; which is most likely, again, a side effect of the radiation, and the purging of dead nuked tissue.

Fallout Boy - Day 9

Long day,  running errands, down in Spokane half the day, seeing friends for the first time in a month or more (getting out of the house for only the second time in five weeks that didn't involve a doctor for that matter)... and we only got back a few minutes ago.

I'll update the radiation numbers in this post later.

Due to the sudden appearance of Teh Kitteh, we got NO sleep last night... Just sort of drifted off for about 90 minutes this morning, before the fullness of the day sprung upon us;  and we are both dead tired at the moment.

One very good number, I've lost 34 pounds since 10am Wednesday (as of just before midnight Saturday that is); and I wasn't taking my diuretics today because I was out and about (believe me, you don't want to be peeing every 20 minutes when you're trying to run errands).

G'night folks.

Fallout Boy - Day 8: The numbers

NOTE: I split the "fallout boy" post for today into two parts. This part is the data for today; the other part is the story of the day.

So... Today was a rather eventful day... For both good and ill, mostly good. I spent half the day at the docs, so there was no 1400hr data series.

Date         Time HR   D   Dose 

9/20/2012 10:00 164 0 115   

9/20/2012 10:00 164 2 6.8    

9/20/2012 10:00 164   3    4.0    
9/20/2012 10:00 164   6    0.97  
9/20/2012 10:00 164   12  0.62   
9/20/2012 14:00 168 0   

9/20/2012 14:00 168 2      

9/20/2012 14:00 168 3    

9/20/2012 14:00 168 6    

9/20/2012 14:00 168 12  

9/19/2012 18:00 172 0 107  

9/19/2012 18:00 172 2 5.5   

9/19/2012 18:00 172 3 2.7   

9/19/2012 18:00 172 6 0.97 

9/19/2012 18:00 172 12 0.62 

9/19/2012 22:00 176 0 116  

9/19/2012 22:00 176 2 5.3   

9/19/2012 22:00 176 3 2.7   

9/19/2012 22:00 176 6 0.94 

9/19/2012 22:00 176 12 0.57 

As I said, there was no 1400 series, so I'm going to include the 1800 series for the day over day.

Distance -- 9/13 ------ 9/14 ----- 9/15 ----- 9/16 ----- 9/17 ----- 9/18 ----- 9/19 ----- 9/20 
0                 >1000    >1000     790       580         485       335         190       107  
2                 >1000    240         70         38           20        13           9           5.5  
3                 800        40          15          7            6           4.7         4.0        2.7  
6                 600        22           5.3        2.5         1.7        1.6         1.0         0.97
12               480        9             2.4        1.1         1           0.75        0.8        0.57

Tomorrow, I'm going to restart the day over day data series, starting with a 9/20 baseline.

I'm pretty happy with where where I am, given what happened today. By the 2200 measurement I was just about safe for my wife to sit with me on the couch touching me.

Yeah... we're still at least a week away from sleeping together again unfortunately; but that just means the radiation is still working... Which is kinda important...

We also took another series of residual measurements today


Date -- Time -- Delta -- Distance -- Dose uSv/h -- Object

9/20      1000      164        0                  7.52              Shirt (worn for 3 days, dropped to 5 after 12 hrs)
9/20      1000      164        0                  4                   Handkerchief (used repeatedly)
9/20      1000      164        0                  3                   Wet towel after shower (0 dose after 12 hrs)
9/20      1000      164        0                  1.87              Couch seating area (used constantly 7 days)
9/20      1000      164        0                  1.23              Bedding (used for 7 days)
9/20      1000      164        0                  0.4                Laptop (used constantly 7 days)
9/20      1000      164        0                  0.4                Glass of water sitting for hours (used)
9/20      1000      164        0                  0.2                Plate (used repeatedly 7 days)
9/20      1000      164        0                  0.2                Spoon (used repeatedly 7 days)
9/20      1000      164        3                 1.16                Seating area at other end of couch
9/20      1000      164        6                  0.62              6 foot line from seat, open air, no objects
9/20      1000      164        9                  0.92              Closest seat on other couch across room
9/20      1000      164        12                0.72              12 foot line, open air but some objects in area
9/20      1000      164        15                14                 Toilet (used repeatedly)

9/12      1000       0           25                0.14              baseline 25ft from seating area before dose
9/20      1000      164        25                0.43              25ft from seating area, unchanged since 24hr

The biggest surprise was how much the shirt I'd been wearing the last couple days (I should mention, I'm barely sweating at all, because I'm basically lying on my ass all day; and because I'm severely hypothyroid) retained, giving off a dosage of 7.52uSv/h a few minutes after I took it off, and was still at over 5 uSv/h 12 hours later.

Given how little the bedding or couch retained, I was really expecting the shirt to retain less; and to decay faster than that.

 We also did a shower skin test, checking various areas on my skin before and after a vigorous shower (after not showering for a couple days), and found that I consistently dropped about 1 uSv/h over my entire body. My wet towel registered 3 uSv/h immediately after use. Funny thing though... It was indistinguishable from background after hanging up for 12 hours.

I realize this whole series of data is anal and nitpicking... and if you're not interested it must seem endless... But I haven't seen any other thyroid cancer survivors doing this; and I know I wanted this data before I went through the radiation, so I'mna keep doing it for a while.

I'll probably do this level of detail for another week; which will bring us to the "two weeks" line that the doctors recommend for "restricted" contact and limited work time etc...

After that, I'll probably do it as a one measurement a day thing, until my levels fall below significantly above background.

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.

Edema

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.

Testosterone

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.

Thyroid

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.

Fallout Boy - Day 7

Back to the small hammers again today... Almost to the medium hammers.

Yesterday I said:

 the symptoms of the severe forced hypothyroidism are getting worse day by day. I can't wait for them to tell me I can get back on the levothyroxine.

Today, I have two new words for you all: Ageusia and Anosmia

For those of us who don't speak "pretentious obscurity", those are two rare side effects of severe hypothyroidism, which are respectively the loss of your sense of taste, and the loss of your sense of smell.

I've been progressively having less of each for the last week or so; but as of today, the only thing I can taste is a slight metallic taste in my mouth all the time, and a very faint sense of acidity with strongly acidic food or drink. No taste of saltiness or spiciness at all.

Just for giggles, we did some tests with a habanero pepper sauce... I just barely had a slight sensation of spiciness, no taste of the sauce at all, a little bit of burn, but nothing in the nose.

Then we tested my sense of smell, and I was just barely able to smell chlorine bleach, and pure distilled white vinegar; and then smelled essential orange oil slightly stronger.

Perversely, at the same time as I can't enjoy my food at all; by body wants as much of it as it can get.

I have no sense of satitation at all. I can eat and drink 'til I'm bursting, without ever feeling like I've eaten properly; and then the second that processes out enough to no longer be bloated, my body is telling me I'm hungry again.

Rather unpleasant really...

And more than a little depressing.

You see... It's taken away the only thing I had to look forward to in my day. I'm stuck in my basement, I'm sick, I'm exhausted, I'm fatigued, I'm sore, I'm achy... I can't even sleep with my wife, or play with my dogs...

The only thing I have to look forward to every day is dinner, and maybe a bit of dessert...

And now, that's taken away from me as well.

Were I a more morose type, I would be most depressed... As it is... combined with the financial situation this has put us in... Well...

There's not a lot of light in my day, let's just say that.

This may sound extreme to some folks... It's "just taste right?"... well, no. It's taking away the little moments of joy and hope and expectation that make the day livable.

Were I facing this long term without prospect of recovery...

...I have never in my life seriously though of suicide, and I'm certainly not thinking of it right now...

...But I can see how one would.

For now though, we're at the 7 day mark (indexing dose day as day 1, not day zero); and we should take a look at my radiation levels.

Date         Time HR   D   Dose 

9/19/2012 10:00 140 0 210   

9/19/2012 10:00 140 2 11     

9/19/2012 10:00 140   3    3.3    
9/19/2012 10:00 140   6    1.2    
9/19/2012 10:00 140   12  0.80   
9/19/2012 14:00 144 0 190  

9/19/2012 14:00 144 2 9      

9/19/2012 14:00 144 3 4.0   

9/19/2012 14:00 144 6 1.0   

9/19/2012 14:00 144 12 0.8  

9/19/2012 18:00 148 0 185  

9/19/2012 18:00 148 2 9.3   

9/19/2012 18:00 148 3 3.8   

9/19/2012 18:00 148 6 1.1   

9/19/2012 18:00 148 12 0.6   

9/19/2012 22:00 152 0 175  

9/19/2012 22:00 152 2 8.3   

9/19/2012 22:00 152 3 3.2   

9/19/2012 22:00 152 6 1.30 

9/19/2012 22:00 152 12 0.62

The slope steepened up again, the day over day is encouraging me right now; but things are going to be inconsistent over the next few days, because of the expected tissue death, and purging out.

Distance -- 9/13 ------ 9/14 ----- 9/15 ----- 9/16 ----- 9/17 ----- 9/18 ----- 9/19  
0                 >1000    >1000     790       580         485       335         190  
2                 >1000    240         70         38           20        13           9     
3                 800        40          15          7            6           4.7         4.0  
6                 600        22           5.3        2.5         1.7        1.6         1.0   
12               480        9             2.4        1.1         1           0.75        0.8  



Tomorrow is my full body gamma camera scan. I should have the results back and the call from the doc Friday or Monday; and find out if I have any large distant masses (major metastasis).

We know that from the vascular invasion and endocrine microlesions, and now from my reaction to the radiation itself (and the rate of uptake on the radiation dose); that I have at least minor haematogenous metastasis, and minor implantation metastasis.

What that means is that little specks of cancer have been floating around my bloodstream for a while now, and sticking themselves into my endocrine glands, making them go nuts.

Yeah, we knew that...

...and that's OK. It's expected, and  he whole point of the high dose radiation is to kill it off before it becomes major; growing into large masses, or spreading outside the venous and endocrine systems into my lungs, lymph nodes, bladder, stomach lining, or intestine (the most likely targets for large non-endocrine masses).

I had a very high initial uptake of the dose of radiation (48hr uptake was calculated at over 37.5%, which is 4 to 10 times the "normal" uptake rate for someone with a total thyroidectomy, and almost double the normal rate for someone who has a full thyroid that they are ablating to treat hyperthyroidism).  As my thyroid was free and the tumor was able to be completely excised without invasion or infiltration into the surrounding tissues (excepting the venous infiltration) this indicates that I had a very large amount of cancerous tissue floating around my blood stream, or implanted into my other tissues.

All that would also be consistent with the extensive venous infiltration and the aggressive nature of my malignancy.

So, it's very likely that I have a large number of speckles of cancerous tissue in there, and it's strongly possible that I have other large distant masses, or multiple small distant masses.

HOWEVER, those "normal" values are calculated for someone who weighs 1/2 to 1/3 what I do, which does make a difference....

And all that said, again, that's the whole point of the high does radiation.

And I can tell you, just from my bodies reaction in the last few days, I have a lot of tissue in there being killed, and being purged out.

And it really doesn't feel very good.

Not very good at all.

That of course is part of the process...

And if the gamma camera shows any large masses, or large concentrations of specks, I'm going to need to wait another 3 or 4 weeks, and then have another high dose of radiation.

Let's hope not... But, if it does, we have a known successful treatment plan.

More than anything in the world right now, I'm looking forward to sleeping and cuddling with my wife again... Let me tell you, I need that right now almost as much as I need to breathe...

... But only slightly behind that in second place, I'm looking forward to knowing.

Because good news or bad, knowing is better than not knowing.

Fallout Boy - Day 6

Thank GOD, my rad levels have started falling again.

For several days, they were barely falling at all; now they've fallen much faster in the last 24 hours than they did in the previous 48.

What I think was happening, was that for the first 48 hours I was dropping the dose that wasn't taken up by cancerous tissue very quickly. Then the last three days I had already dropped most of what wasn't taken up, and the cancerous tissue hadn't died off or purged out yet.

Which would also be why I was having the worst symptoms of radiation on day 3. I had full uptake and excretion of what wasn't going to be taken up; and the rest had a few days to "work".

Now I'm dropping faster again, and I think it's because the cancerous tissue is finally dying and purging out.

Of course, the symptoms of the severe forced hypothyroidism are getting worse day by day. I can't wait for them to tell me I can get back on the levothyroxine.

Date         Time HR   D   Dose 

9/18/2012 10:00 116 0 385   

9/18/2012 10:00 116 2 13     

9/18/2012 10:00 116   3    4.7    
9/18/2012 10:00 116   6    1.6    
9/18/2012 10:00 116   12  0.75   
9/18/2012 14:00 96 0 335  

9/18/2012 14:00 96 2 13    

9/18/2012 14:00 96 3 4.7   

9/18/2012 14:00 96 6 1.6   

9/18/2012 14:00 96 12 0.75 

9/18/2012 18:00 100 0 310  

9/18/2012 18:00 100 2 12    

9/18/2012 18:00 100 3 3.9   

9/18/2012 18:00 100 6 1.5   

9/18/2012 18:00 100 12 0.75 

9/18/2012 22:00 104 0 260  

9/18/2012 22:00 104 2 12    

9/18/2012 22:00 104 3 3.5   

9/18/2012 22:00 104 6 1.35 

9/18/2012 22:00 104 12 0.65

As has been the case the last few days, the non-contact numbers have gone below where they're going to be consistent; because the residual dose is now as large or larger than the active dose being given off by my body.

As I said yesterday, the 3, 6, and 12 ft are all under 5 uSv/h at this point, which is in the safe zone for my wife, so I really don't care too much.


The slope is steepening again, and I just say go baby go, because I want to sleep with my wife again. The day over day is encouraging me right now.

Distance -- 9/13 ------ 9/14 ----- 9/15 ----- 9/16 ----- 9/17 ----- 9/18  
0                 >1000    >1000     790       580         485       335   
2                 >1000    240         70         38           20        13     
3                 800        40          15          7            6           4.7   
6                 600        22           5.3        2.5         1.7        1.6    
12               480        9             2.4        1.1         1           0.75  

We're not quite there yet; but so long as we don't spend all night cuddling together (which IS our preferred sleeping position unfortunately), we can probably be sleeping together again by Friday... It's going to be some time beyond that before we can actually cuddle together... but we'll take what we can get.

As of late yesterday or early today, she can sit on the same couch with me, we can hug etc... The only limitation is the sleeping and cuddling; but otherwise, it's 100% safe for her to be around me. And the dogs too, though again, gotta keep them from licking me.

Actually I should do a shower test... See what kind of difference a good shower makes. I think I'll do that as soon as I finish this post; and if there's a significant difference I'll update it.

The elimination tests had been falling steadily; I think they're going to rise a bit now that I seem to be purging out dead cells. I'm only doing one a day now, at the 24hr interval, as the data was just repetitive the last few for shorter intervals.

Right now we're just looking forward to our 7 day gamma scan Thursday. Here's hoping for no distant masses or excessive concentrations.

Fallout Boy - Day Five

Bad day today... not so much from the radiation; I think I'm over the hard stuff from that; but I have got to get back on thyroid meds as soon as possible because I am dying here on the hypothyroid effects.

That and the money problems caused by this cancer are really kicking our ass today; but that's life.

Again, it's better than dying.

Date         Time HR D Dose 

9/17/2012 10:00 92 0 530

9/17/2012 10:00 92 2 19  

9/17/2012 10:00 92   3   6    
9/17/2012 10:00 92   6   1.9 
9/17/2012 10:00 92   12 1.1   
9/17/2012 14:00 96 0 485

9/17/2012 14:00 96 2 20  

9/17/2012 14:00 96 3 6    

9/17/2012 14:00 96 6 1.7 

9/17/2012 14:00 96 12 1    

9/17/2012 18:00 100 0 470

9/17/2012 18:00 100 2 17  

9/17/2012 18:00 100 3 5.8 

9/17/2012 18:00 100 6 1.5 

9/17/2012 18:00 100 12 0.8

9/17/2012 22:00 104 0 415

9/17/2012 22:00 104 2 16  

9/17/2012 22:00 104 3 4    

9/17/2012 22:00 104 6 1.7 

9/17/2012 22:00 104 12 0.9

At this point, the 3ft, 6ft, and 12ft distance measurements have become inconsistent. The environmental reflection, absorption, residual etc... are within the margin of measurement error, and the changes in background levels, so they're not going to be particularly accurate at this point.

I could average the errors out by taking five measurements, dropping the high and low, and averaging the middle three... but really that's too much hassle. the 3, 6, and 12 ft are all under 5 uSv/h at this point, which is in the safe zone for my wife, so I really don't care much. She can sit on the same couch with me; just at the opposite end. In a few days, she'll be able to sit next to me on the couch.

What's really important to me right now, is the torso contact measurement, which I'm measuring at the junction of neck and torso (a couple inches below my incision); the highest point of radiation concentration on my body (it falls quickly down to somewhere over 100 within a few inches, and between 20 and 60 over the rest of my body; higher in sensitive areas with lots of blood vessels, lower in extremities etc...).

Again, it's very clear the slope of change has shallowed dramatically; both hourly, and the 24hr day over day:

Distance -- 9/13 ------ 9/14 ----- 9/15 ----- 9/16 ----- 9/17
0                 >1000    >1000     790       580         485
2                 >1000    240           70       38          20  
3                 800        40            15       7            6    
6                 600        22           5.3       2.5         1.7 
12               480        9             2.4       1.1         1    

From differential scanning, around many areas of my body, that high toros contact number could indicate that I've still got a large mass, or large concentration of cancerous tissue somewhere in my neck or upper chest. We'll know when they gamma cam me on Thursday.

That may indicate I need a second dose... We'll know better on Thursday... Or more likely Friday or Monday, after my endocrinologist and radiologist consult...

Or it could just mean the tissue is still dying and hasn't purged out enough yet. It has only been 105 hours since I was dosed after all.

We'll see.

Fallout Boy - Day 4

Yay, no more medium hammers.

Small ones... but not medium ones.

Honestly, I'm feeling a heck of a lot better today. Still pretty weak and achy, particularly in the joints; but a lot better than yesterday. Also, the nausea is gone. 

Part of that may be I was finally able to get a little sleep. A whole uninterrupted six hours last night, which is more than I've been getting for the past few months. 

I'm still a little fuzzy and off mentally, and I still zoned out a few times today; but I was much more awake and alert than I have been. I've had a reasonable attention span as well. 

The downside, I actually kinda passed out for a nap in the middle of the day; and my temperature regulation is awful. My fingers and toes feel like they're freezing off, and I'm wrapped up in a blanket at 70 degrees.

Now, the numbers for the day:

Date         Time HR D Dose 

9/16/2012 10:00 68 0 620

9/16/2012 10:00 68 2 40  

9/16/2012 10:00 68 3 8    
9/16/2012 10:00 68 6 2.8 
9/16/2012 10:00 68 12 1.3   
9/16/2012 14:00 72 0 580

9/16/2012 14:00 72 2 38  

9/16/2012 14:00 72 3 7    

9/16/2012 14:00 72 6 2.5 

9/16/2012 14:00 72 12 1.1 

9/16/2012 18:00 76 0 540

9/16/2012 18:00 76 2 26  

9/16/2012 18:00 76 3 8    

9/16/2012 18:00 76 6 2    

9/16/2012 18:00 76 12 1.2 

9/16/2012 22:00 80 0 515

9/16/2012 22:00 80 2 21  

9/16/2012 22:00 80 3 7    

9/16/2012 22:00 80 6 2    

9/16/2012 22:00 80 12 1.1 

You'll note, the slope of change has shallowed dramatically; both hourly, and the 24hr day over day:

Distance -- 9/13 ------ 9/14 ----- 9/15 ----- 9/16
0                 >1000    >1000     790       580 
2                 >1000    240           70       38  
3                 800        40            15       7    
6                 600        22           5.3       2.5 
12               480        9             2.4       1.1 

My wife still can't sit with me, but there's no problem being in the same room with me or sitting NEAR me, all day long. We let the doggies in for a few minutes... Kinda hard to keep them from licking me.

I'm getting VERY tired of sitting/laying on a couch, watching reruns... but hey, it's better than... you know... dying and stuff.

Irrelevant Geeky Sidebar:

Actually, the wife and I have been using this whole thing, from pre-surgery 'til today; as an opportunity to watch the entire new run of Doctor Who (from the 9th Doctor on).

We had seen the 9th doctor (the first new series), but never picked up the 10th, because it was being played inconsistently in the U.S. As of today, we're up to the middle of series 3.

I still prefer Christopher Ecclestone. I know that's an unpopular choice, but I like his performance and his personality better than David Tennant (who I still thing is GREAT. Funny, charming, ALIVE as hell). Though surprisingly, they both beat my previous favorite, Tom Baker (my first Doctor, from PBS showings in the early 80s); which I thought was impossible.

After we finish Dr. Who, we're going to do Torchwood; which, again, we haven't watched at all. Maybe Warehouse 13 as well.

When she's not watching with me, I'm using the time to read/re-read some long series I haven't read in a while, to catch up on long podcasts, and to watch "24" from the beginning. I was living in Ireland when the show premiered, and I hate coming into a show in the middle of its run, so I never watched it.

I think I'll watch "lost" after I finish up "24"; and pick up season 3 and later of "Eureka".

Thank god for netflix.

Fallout Boy - Day 3

So... basically today sucked.

Oh wait, I said that already... Yesterday in fact.

Medium hammers, bag, beatings, nausea, pain, weakness etc... Not as bad for the most part, but still...

One thing I forgot to mention the last couple posts is that I have a complete lack of body temperature regulation. Fever, chills, and my extremities feel frozen off half the time. This is a known side effect of hypothyroidism, gets worse the more hypo you are, and is exacerbated by the radiation.

Yeah cancer still sucks.

Sleep... That would be nice. I had 3 hours of semi-awake semi-sleep, and an hour or two of zoned out not sleep.

HOWEVER, I ate some real food today, even had some coffee and a sweet baked good (from the local hippy bakery. No preservatives, conditioners etc...).

...and, by the 48 hour mark, the rad levels had dropped enough so that Mel could sit across the room from me; which is nice. Still not on the same side of the room, but at least close enough to "be with" each other.


I'm going to graph out a couple doses here from today:

Date -- Time -- Delta -- Distance -- Dose uSv/h

9/15      1000      44          0                  830
9/15      1000      44          2                  86
9/15      1000      44          3                  16
9/15      1000      44          6                  6.8
9/15      1000      44          12                2.7

9/15      1400      48          0                  790
9/15      1400      48          2                  70
9/15      1400      48          3                  15
9/15      1400      48          6                  5.3
9/15      1400      48          12                2.4

9/15      1600      52          0                  750
9/15      1600      52          2                  60
9/15      1600      52          3                  14
9/15      1600      52          6                  5.2
9/15      1600      52          12                2

9/15      2200      56          0                  680
9/15      2200      56          2                  43
9/15      2200      56          3                  13
9/15      2200      56          6                  3.7
9/15      2200      56          12                1.7


Since the levels were safe enough, we also had Mel some testing on residual items, my seating area etc... with me out in the yard so as not to effect the measurements.

Very interesting numbers actually... Much lower than I thought they would be, considering the elimination tests.  Oh and the difference in my open air distance readings immediate before and immediately after elimination, was generally about 5%, which I thought was interesting as well.

My first full measurement was at 1600 thursday, so comparing 24 hour intervals we see (0 is touching my torso, 2 is holding the meter at arms length):

Distance -- 9/13 ------ 9/14 ----- 9/15 
0                 >1000       >1000     790
2                 >1000       240         70
3                 800           40           15
6                 600           22           5.3
12               480           9             2.4

Again a substantial, and very nonlinear falloff. Not directly proportional, not very close to inverse square, or inverse cube, and not really on any kind of consistent or predictable trend line slope except "down".

Basically, as I said yesterday, from my own personal results, you can't make any linear regression analyses to plot future dose numbers with any kind of accuracy.

Ehhh, the wife can be in the same room with me, I'm happy with that for now... Sleeping together again is still a while away (still projecting over a week from the dose, though the line is inconsistent). Oh and tomorrow, it'll probably be OK for me to let the dogs in, so long as I don't let them lick me or lay on top of me.

Now as I mentioned, we did some testing on residuals. Yesterday I said this:

One thing that I've found the guidelines are overcautious on though, is your dishes, silverware, and disposable plates and cups. They're not taking on any significant radiation to dose back out; though admittedly it's only been a day, and dosages are cumulative. So with multiple uses over several days, it may build up. I'll test it. Same thing with the sheets, towels etc... 

That isn't to say these items aren't picking up some radiation, they certainly are; but it's not a lot, and they don't hold on to it long once out of my immediate presence.

Today we got some real numbers (doses for objects are over background baseline):


Date -- Time -- Delta -- Distance -- Dose uSv/h -- Object

9/15      1400      48          0                  9                   Handkerchief (used repeatedly)
9/15      1400      48          0                  2.27              Couch seating area (used constantly)
9/15      1400      48          0                  1                   Bedding (used for two days)
9/15      1400      48          0                  0.8                Laptop (used constantly)
9/15      1400      48          0                  0.4                Glass of water sitting for hours (used)
9/15      1400      48          0                  0.2                Plate (used repeatedly)
9/15      1400      48          0                  0.2                Spoon (used repeatedly)
9/15      1400      48          3                  1.02              Seating area at other end of couch
9/15      1400      48          6                  0.59              6 foot line from seat, open air, no objects
9/15      1400      48          9                  0.72              Closest seat on other couch across room
9/15      1400      48          12                0.71              12 foot line, open air but some objects in area
9/15      1400      48          15                15                 Toilet (used repeatedly)
9/13      1400        0          25                0.14              baseline 25ft from seating area before dose

9/15      1400      48          25                0.43              25ft from seating area 24 and 48hr after dose

The 25 foot away baseline reading was the same at both 24 and 48 hours. Long distance, not much emission hitting there, so a slow change is expected.

Essentially, items I was in direct contact with absorbed a bit, but less than I'd expected; particularly my sheets and blankets. I had only been off them for a few minutes when they were tested, and they still barely hit 1 uSv/h.

Bodily fluids dosed the most by FAR. The handkerchief I'd been blowing my nose with for two days absorbed four times as much as my seating/sleeping area, and 9 times as much as my bedding; and the toilet, even though it's 15 feet from my seating area, even a couple hours after use, and even after multiple flushes, absorbed 15 times as much as my bedding.

Items I was less than 6 feet away from, and may have briefly handled or used, but I wasn't in direct contact with for extended lengths of time, absorbed very little. Organic matter more than 6 feet away got a small dose above background, something like .2uSv/h; and inorganic matter more than six feet away seems to have retained almost nothing over background.

Certainly, it would be safe to have someone else wash dishes you had used... Though of course I don't recommend you disregard doctors orders and guidelines.

Now, I just hope I can get some sleep tonight. I'm braindead.

And that was day three...