Wither testosterone? Or, Who is that Masked Man?

I want to write about the disappearance of testosterone, and its return, before I become completely engulfed by the hormone and forget what being without it was like.

But let's go back a bit to when I was diagnosed and went to consult with the radiation oncologist, who explained the treatment protocol he recommended, and why. In the midst of that he said they were going to "chemically castrate" me by essentially removing testosterone from my body, and thereby wiping out my sex drive. I recall reacting to the word "castrate" as any man might...with fear, and the idea of removing my sex drive...well, that was flat scary too.  I also recall sensing something like gear-headed pride emanating from the doctor about his ability to do that.  And I let it pass without too much question.  I should have questioned this aspect thoroughly, had I known what questions to ask. I didn't and odds are if you know anyone going into this kind of therapy, they won't either.  But looking back I should have asked what that would do to my emotional life, to my concept of self, to my sense of spirit and also to my physical body.  I thought the hormone segment of the treatment was the least of my worries. But it has long-lasting effects and it's slow... both in the going and coming. You don't feel it slipping, and when you want it to come back, it's hard to sense that as well.

But oddly, the return of my testosterone levels into the normal range had the effect of making me look back and wonder at the way my mind changed. I had read the research papers on the cognitive effects of the treatment (androgen deprivation therapy), but they didn't touch on some pieces that were significant, perhaps because they are hard to measure. I'm talking about sex drive, emotions, physical strength, sense of spirit (small s and big S), and the interplay of all those in a sense of self.

A few weeks ago a friend asked me what it was like to lose your sex drive. And I replied that it slips away silently and you almost don't notice it being gone. (Of course, in the midst of treatments your thoughts are more about just getting through them than they are about having sex, but having said that it just seems odd that part of you can just go... like that! ... and it's just not important.) Anyway, he seemed shocked, but wanted to know more and I tried to explain some more, like this:

OK, so you lose your sex drive, and don't really miss it as much as you think you will. And then you begin to realize you're more emotional than ever. And weirdly, you have names for these emotions, some of which you vaguely recognize as things you've felt before, but couldn't name. And you're out of energy and don't have the ability to think of anything complex anymore, and your muscles seem to be almost falling off because they're disappearing. And then, after the treatment ends, you might be stuck there, because it's a crap-shoot as to whether your body will start making testosterone again (and the doctors are not going to give you any because, you silly goof, you had prostate cancer which feeds on testosterone).  And so, in my case I'm back on the boy's side of the testosterone fence (after having less than most women) and now, here's my sex drive back, and I find myself oddly missing the time, not so long ago, when I didn't have this silly distraction.  Really.  I spend too much time... really, I waste time... thinking about sex (which is probably saying too much, but oh well).  Sex is a good thing, but it would be great to be able to turn the drive off...at will... because I think I could get a lot more done without it.  And I kind of miss the connection with my emotions that I had six months ago.

I was laughing at the end of that.  He wasn't. You should have seen the look of fear on his face.  Frozen fear.  But it's OK, really.  And the little rant I had there was good for me.  It showed me that there are many levels to being human, and physical, and there are times when I am not myself because of, essentially, chemicals.  Who is the person I was when I had testosterone levels of less than 20?  And, who am I now?  Ah... I think these questions are pretty silly, really, but it makes me wonder about the "me" I call me.  And it makes me wonder about how my spiritual experience is tied to the chemicals in my body that I have no control over.

Catching up is just an illusion,,,

...but then, I'm not slamming illusions. Or allusions, for that matter.  It's almost a year since the last posting and I'm only now getting back to being able to think about updates and writing here. So much has happened, and so many thoughts on different levels have come and gone, but even after all this time I think I need to write them down. But first, there are some things to explain, mainly about why the long silence.

The last post contained a hint at the back-and-forth with the insurance company - applying for long-term disability benefits, at the end of my short-term disability (which I took to "freeze" the lay-off clock, you may recall). While my application for long-term disability was in progress I went on unpaid leave of absence from work.  There was some money coming in from California, but to my company, I was on leave.  And surprise! The insurance company denied my initial claim for long term disability on the grounds that I was not physically impaired (meaning, I could bend and lift and do normal physical labor). Of course, as soon as I was denied I began putting together an appeal package, and solicited the help of many friends and family for advice and counsel in addition to doing a lot of research into the effects androgen deprivation therapy has on the mind.  I also consulted a lawyer who specialized in disability claims and paid for a series of cognitive tests by a neuro-psychologist (not cheap!) to see if there were measurable effects from the therapy (there were). My doctors, and the staff people in their offices, were also pivotal in helping me with the appeal.

I didn't want to discuss the appeal here because I was concerned that any public information (specifically, using the name of the insurance company) might hamper my appeal and I wasn't that stupid. But I'm fairly angry at what amounts to fraudulent representation of benefits by the company I work for and by the insurance company who underwrites (and administers) the benefit.  Signing up for the benefit every year left me with the impression that all I needed to do was invoke the benefit to get it. How naive of me!  As it was, I applied, was denied on grounds that made no sense (my job was not physical, after all) and then went through months of expense and effort, all the while operating with a mind that found it increasingly hard to concentrate on anything, much less building a cohesive argument. And I had help! Consider all those who are denied and who do not have the help from friends and family to push back.

Eventually, my appeal was successful, but it was so late in coming, that I had already gone back in to work and applied for another job, in a different organization, and was in the closing steps of taking that job when MetLife decided to grant me what was by that time essentially a claim for back benefits.  I don't want to get too political here, but my brief dip into the health insurance nightmare left me convinced that these structures need serious change.  There are so many levels that can be discussed about what needs change, but just take the basic level of applying for long term disability and you can get a picture. The forms were entirely focused on physical ability and functions, as if all of the jobs that might expect to need disability claims were all manufacturing jobs. Patently ridiculous!

So, as a preview of coming attractions, to anyone still checking this, are topics still related to my treatment (not in any specific order): Unexpected radiation effects (long after stopping radiation), the return of testosterone (a goofy title for a western novel, eh?), sex drive (or, who is that Masked Man behind the wheel?), hormones and their effects on thinking and spirituality (never mind emotions), some reflections on losses and gains, and a bit of a spoof on Tieresias ... who, I think, was holding back.