Thursday, September 20, 2012

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.