Saturday, December 10, 2011

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.

Saturday, October 29, 2011

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.

Wednesday, December 1, 2010

Benefits, or so one hopes

It may seem that this blog has died. But that would be premature. It's just that my mind (and time) have been almost completely taken up with dealing with an appeal with an insurance company...and as that appeal is still in process, I'll leave their name out of this.

I applied for long term disability to get through some healing from the effects of the treatment for this cancer. Specifically, I feel like my mind, and body, are not up to the point where I can count on them to perform reliably in the kind of work I do. And so it seemed right to use the benefit I'd been paying into for years. Silly me. I thought it worked as advertised. But nooooo. It doesn't work that way.

My initial claim was denied on the grounds that I was disease free and not physically impaired. Understandable, really, because my clinical data indicates that the treatment regimen has been successful. And the application forms leave little room for describing anything other than physical attributes. But my work is not physical, but mainly analytical and interactive...so I need my mind and emotions to be really in gear and in sync. And they aren't, just yet.

Being deprived of testosterone has effects on mind and body that include fatigue, muscle loss, emotional swings, and, it turns out, some cognitive functions can be affected. There are several research studies that support my feeling that all is not well yet.  However, recent data indicates that there should be a return to some baseline functional capability several months after treatment ends.  I hope so. 

And so I appealed the denial of benefits on the basis that while my treatment has ended, the effects of that treatment continue to leave me unable to perform my job reliably. It remains to be seen how the appeal will go. Of course I want it to be approved, but if not, what then?I'm not really ready to go back to work effectively and I wouldn't survive long in the current employment climate (or so I think). But if it comes down to that, I will have to try. Thing is, even thinking about trying is hard right now, never mind the real deal. I hate that part. I wasn't that way a year ago. But this is a path I chose, given the situation that presented itself.

I could go on a rant here about what seems to be false advertising by insurance companies what with the way the benefit is worded, but that's no new news. Or I could go on about how foreign it is to argue that one is disabled when I don't want to argue that. Or even feign eloquence I don't feel about how life events - loss, grief, disease, etc - can get you into places and spaces you never dreamed you would be, but to what end?

It would still be the middle of the night, and I would still be on the downstairs couch, listening to the old dog (who could not climb the stairs back to her preferred bed) sleep heavily. And I would still be awake trying not to think too much about the future, unsuccessfully.
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Sunday, November 7, 2010

My doctors & the great people who work with them

Long time, no write. There are reasons, but few excuses.  Reason one is almost my full attention has been focused on getting some papers filed to address some insurance/benefit items. I know that's fairly obscure, but it would be premature of me to go too much into detail right now.

But I didn't start this to talk about that.  I wanted to give some accolades to my doctors and the people who work for them or support their work. 

My urologist, who I poked some fun at when I wrote about the biopsy procedure, is great. I give him a lot of credit in getting me to consult the radiation oncologist before making a decision on proceeding with treatment. I called him at one point and said something like, "If I'm leaning toward surgery, why don't we just schedule it now and get started?"  He said he thought I should go see the radiation oncologist first.  His staff has been hugely helpful with paperwork support and there are several people in that office I owe big time.

My radiation oncologist is stellar. Not only did he connect me with the research data I needed to make a decision on treatment, but he's been a great counsel and supporter through the entire course of treatment.  The staff in his office, and in the supporting radiation department of the hospital are incredible, caring, sensitive people who all were (and are) exemplary in their approach, their sensitivity, and their knowledge.

I'll end with this: While my active treatment ended at the end of September, I'm still feeling the effects of the androgen deprivation therapy (what I have elsewhere referred to as "hormone therapy").  And all the research I've read so far indicates I'll be feeling those effects for some time to come.  And so I'm filing more papers and doing more research to find out (duh) what that means for me.  And both doctors, and their people, have been understanding, supportive, and involved.  Part of that is who they are, but part of it is also that I have a need to know, and so I ask them, and others in my network, for help.  Asking doesn't hurt.  Not knowing (for me), does.

Sunday, September 26, 2010

Losing Andreas

Andreas passed away recently. He was 44, and had brain cancer.  Losing him was another one of the losses in the midst of this journey through cancer.  He was a great help to me in my walk and I hope I had some small impact on his cancer experience as well. His cancer was the more deadly of the two of us, but I'm not being competitive.  I suppose it's a silly thing to think.

He modeled so well a perseverance of character, curiosity, and humor in his attention to rehabilitating himself after each surgery and throughout his treatment. And now, when I feel as if I am losing my patience with the treatment plan I'm on, I think of him and try not to  become the impatient patient that I fear I have become.

It sounds odd... and possibly offensive... to say that any good can come of a thing like cancer. Yet it was in the shared turmoil of treatment regimens that our relationship was deepened.  True, it might have done so in time without cancer, but we never get to know what might have happened, do we?  So, in the sense that I came to know and love this unique wonderful man in the midst of sharing a similar focus on what was immediately important and what was not, I can say something good came out of something most (if not all) of us would consider bad.  And I ask for forgiveness if by saying that I have offended anyone.

We laughed over the tragic things that were happening to us in our pursuit of living. We shared tea and talked about the healing effects of meditation and mindful walking.  I suppose my point is this: without community and shared experience the cancer walk would be a lonely, scary walk indeed.  But there is more to this... and here I expect I might wander a bit because I know my thoughts are scattered.

Losing Andreas was a big loss for me.  And just before Andreas passed away, my father-in-law died... and I was close to him.  And the treatment regimen I chose has taken things away from me that will never come back. Physical functions that I assumed would degrade with time - but still be there - are no longer a part of what I can call "me".  A close friend asked me, tenderly, what it was like to lose some of the sexual function, and I answered, but realized I was close to tears in the midst of my answer. Surprised at my emotion, I realized I have not walked through that particular grief completely.

Lest this turn into a maudlin crying fest (and I have those as well), I know this is just a compacted, telescoped experience of what is, to borrow a phrase from Robinson Jeffers, "...exactly conterminous with human life."

We lose all sorts of things all the time.  Some of the losses are significant (Andreas and my father-in-law are recent examples for me) and some are less so. But all of them, big or little, seem to point to something else that is much bigger, I think.  I know that I am so tied to my body that I have no conscious perception of what losing it will be like.  But I have a very clear, and sometimes painful, image of what loss is about.  And so, I think I have a picture of what that final loss might be like. I don't know, of course, and have no way to know until I get there.  For now, the ones I can handle are enough.

Wednesday, August 25, 2010

Catching up...

Well, it has been too long since my last post, as I was gently but firmly reminded recently. And what could I say but "no duh!?!"... and try and get on with what is going on in my head and heart as the treatment progresses.
Nothing. I could say nothing.  But I'll try.

The last couple of months have been hard ones and busy as well. My wife's father passed away and I had a really good relationship with him.  And there was a flurry of activity with that. And this week a close friend, and another cancer patient (albeit a different kind), passed away.  And that is hard.  But no more than anyone else has experienced.  It is, as Robinson Jeffers said, "...exactly conterminous with human existence".

For my part, the PSA count being down to a negligible number is a good thing, but I'm not done yet. The research data indicated that being on hormone treatments for a year was necessary, and I won't reach that point until the end of September.  So, I find myself being impatient, now that there is an end to the hormone deprivation in sight.  But that doesn't mean a return to my old self the next day. The doctor indicated it could be about 6 months before a new state of "normal" returns, and like it or not, I have not out-performed a single time estimate throughout this treatment regimen.  So, let's see... that means it could be March of 2011 before I feel something different physically and mentally.  Oh la!

The wearing thing about the hormone treatments is that I think I can still do things like I used to, but I can't.  For example, I think I can keep active (which I used to do, and which the doctors want me to do) but I need people to get me out to be active. While riding my bike, I think I feel fine and then I push a little and it takes me three days to recover.  I work in the backyard and I last an hour and need a rest. I feel like I have no initiative.  Sure I can get things done, but then I pay for it.  And there's more...

Monday, July 5, 2010

First PSA test since November, '09

Well, the post is late, but the results have not changed: PSA = less than 0.1 ...which was the target we were hoping for!  Woot!!! So, for now this is success!  (I think I started this blog with a PSA of at least 13.7 or something.)

So, at the same time I got those results I got my last hormone shot, which will last me until the end of September or so.  I asked my urologist (who was doing the injection) how long after that I could expect to begin to feel 'normal' again.  He said something like "You should bounce right back."  And I said, "Let's define 'bounce'."  He grinned and said that maybe bounce was not quite the right word.  Six months or so was what he meant.  I said that sounded more like a slow slide than a bounce, but ok... that's what I wanted to know.

And so the final injection was done (my right hip/cheek area hurt the rest of the day) and I got a lab slip to get my PSA tested in 3 months and a return visit.  He (the urologist) seemed surprised that my radiation oncologist hadn't given me a stack of lab slips for PSA tests, and I explained that there had been some confusion about what lab the urologist preferred.  Turns out he doesn't have a preferred lab.  So, I'll have to follow up on my return visit and make sure I have lab slips for (I think) every six months for the next few years.

All in all, I'm pleased.  But there has been no huge celebration yet.  I figure there's something to plan for at the end of September, and then maybe something to notice and pay attention to when my body starts (I hope) to level out into what will be the new "normal".  At any rate, it is good to have these results!