Faith & whatnot

A little while ago I read a book my sister gave me - Moonlight Sonata at the Mayo Clinic by Nora Gallagher, who I know because she and my sister went to college together.  Nora's memoir details her path pursuing information about a mysterious medical condition she has. Her story provides brief glimpses into the spiritual side of her experience, which is what attracts me most. Don't get me wrong. The medical piece is not to be trifled with and her story is frustratingly similar to anyone who has crossed into the world of medical situations. 

Back to the spiritual experience.  The glimpses Nora provides of her spiritual experience call to me because of my failed attempts (here and elsewhere) to wrap words around a similar change in a specific, defined, spiritual practice. (Nora's was clear, I think. Mine, not so much.) Instead,  I continue to struggle to find words to describe the changes taking place in me.  I'd really rather take an easier way out, claim "there are no words for this" even if it's true that some things are too deep for words, and that's all there is to it. But if I can't use words to at least point to that thing and say that thing, or draw a circle around the topic and point to whatever somewhere around the middle and say there... that! ..then how do I share what seems so important to pass on?  

Sidebar: 

     On Wednesday evenings for the past 10 years or so Ginny and I have met with a small group of people to practice lectio divina, an ancient form of meditation. I need silence. Really. I need silence. This gathering is a simple method to get me to be silent because I don't have the discipline to do it on my own. This group practice has become my only church right now. And that is significant because traditional church had been a significant part of my life up until a few years ago.

End Sidebar

I'm aware that my spiritual and cancer experiences are woven together so tightly that I can no longer separate them. And this seems only right.  Without having cancer stop me in my tracks, I doubt that I would have (on my own) stopped long enough to notice that I needed to stop and notice. And without having some sensitivity to the spiritual side, I don't know if I would have noticed the changes that cancer brought to that. Or, rather, what the treatment protocols did to that.  Taking away testosterone for a year did things to my thinking and emotions and strength - everything - because, as many of my women friends laughingly told me, hormones affect everything.  

And now, back on the male side of the fence I think "So what? Is that even significant?" It is, obviously, or I wouldn't be writing about it. But like my mother's slow, agonizingly beautiful slide into death prompted questions about things I'd never questioned before, the testosterone depredation and return did the same thing.  And I'm still struggling to frame it with words. 

Nora's adept expression has put words around some similar questions. My hat's off to her.

LiveStrong Challenge, Davis + more

Field of Sunflowers along the ride route

I rode the subject event again a few weeks ago.  This was my third time riding in the LiveStrong Challenge in Davis, CA since recovering from cancer treatments.  It was a great ride, as ever!

Tony, Kent, Jeff, and me at the finish

I rode with Kent Smith, Jeff Thompson and Tony Herz, who were training partners and we all completed the century ride (technically just over 96 miles, but we counted it as 100 due to some of the most amazing headwinds we’d ever experienced which hit us late in the ride). 

This year’s ride had lower attendance (about 800 riders) than we saw in 2012 and 2011. But I talked to more people this year - other survivors, other people riding for relatives and friends - and there were several great pace-lines we got in or led that were a lot of fun.  And we rode safe: no flats, no falls!  Yay!   My sister Ellin and husband Patrick surprised us by being at the halfway rest stop! Big fun! Then they drove into Davis to join Ginny at the finish line to cheer us in.  

The finish is a big deal. Your bike number gets relayed to an announcer who broadcasts your finish arrival to a throng of cheering people. Cancer survivors completing the event go off to the right side and are handed a wonderful yellow “Survivor’s” rose as you ride through the finish area.  This was a complete surprise in 2011, the first year Kent and I rode, and I nearly crashed because I was so ambushed by emotions!  Now, even though I know it’s coming, this symbol continues to make me tear up.  “Each tear, an honoring”, as a friend said.  I’m holding the rose in the pictures (amazingly framed in the 1st one).

Ginny: "EWW... you're all WET!"

What does this have to do with prostate cancer?  Well, it IS a cancer benefit ride, for Pete's sake.  But it also represents a return to strength following tonsil surgery, and more, what I'm seeing as a return to strength after the end of cancer treatments - which ended 2010.  Three years, almost, which would have seemed too much to take had I considered it going in.  And I am so fortunate to have survived.  This event is where I first used the word "survivor" about myself and was amazed that with it came an incredible wave of emotion - sadness, gratitude, pain, relief - a poignant, heartbreaking feeling too deep for words.  I used the word "ambushed" earlier about this, which is how I experience it. 

I talked to a guy at the gym the other day and he asked me about the trainer I use and why I'd chosen to use a trainer. It's easy: Paying her gets me into the gym. But I explained that I had gone through some treatments that were affecting muscle mass (removing it!) and that led to mentioning the big C.  And he said "congratulations" or something, to which I replied, "I don't know. A lot of the time I didn't think there was anything special or brave about it. It was just showing up so the techs could do their thing."  But he didn't accept that, and maybe I shouldn't either.

Onward and ...

...upward? Well, perhaps.  I was thinking this morning how many people helped me and my family along the way through the treatment regimen, and importantly, the recovery struggle  (because struggle it was).  Without help, I don't know how anyone manages this kind of experience.  The blanket "thanks everyone!" seems inadequate. Specific thanks would be unnecessarily lengthy, yet something remains.

Today I finally sent an email to Dr. Nelson Stone who, when asked for information, took the time to reply, request information, and provide unsolicited input. His unbiased view allowed me to make decisions based on data, not emotion.  (The emphasis on data started with my radiation oncologist, Dr. Peddada, and I credit Dr. Kraft with insisting that I consult with him.)  When I contacted Dr. Stone initially (still, I think) prostate cancer required a fair amount of decisions on the part of the patient, unlike some forms of cancer.  Dr. Stone helped me form a plan with my doctors.  My recent visit to my urologist, Dr.Kraft, indicates a continued PSA level of less than 0.1 (which is as close to zero as labs will say), and testosterone level is still in the normal-high envelope (it's a big envelope).  And those consistent numbers mean I can now switch to yearly visits.  Small victory, and I'll take it.

Somewhat related to moving on, I had my tonsils out 3 weeks ago. And how are tonsils related to prostate cancer? Good question. My tonsils have been large since childhood, but after having cancer, my PCP started a campaign to get me to a specialist because she thought my tonsils might be harboring something. I have seen no data to back this up, specifically, but prostate cancer, if it spreads, can show up in lymph nodes (usually in the pelvis) and to bones (top two). Tonsils are lymph nodes, but clearly not in the pelvis, but they're lymph nodes.  Do you see the circle forming?  (Mayo lists bones, lymph nodes, lungs, liver, brain as the top 5 common sites.)

But I went (finally) to the otolaryngolgist (what a word! ENT is easier) and he said they should come out ("let's pop those bad boys outta there").  I thought a second opinion was needed, not only because I didn't like his answer, but he had an OfficeNazi on his staff.  Yeesh.

Second ENT was very chatty. Ended up saying I had 2 out of 3 factors indicating they should come out. So, not a requirement, but if I didn't do it, I should be seen by a specialist every 6 months. I thought "oh right... that's not going to happen".  He also said, in the interest of full disclosure, that "of all the surgeries I do, this one is the most painful".  Thanks, doc.  Me = Drag feet for a few months.  Finally scheduled the surgery and did it.
  (Sidebar) Oh baby!  If you're an adult and still have your tonsils, make them say "you're going to die unless you do this" because you'll want to for a couple of weeks after the surgery.

At any rate, the pathology report was clear (yay!).  I wasn't overly concerned about that, but had no idea that Ginny was worried about it until she visibly relaxed when the doctor told us at the post-op appointment. Unfeeling, insensitive American male that I am.

Point is, once a cancer patient, always so labeled.  Fair or not, it's the case.

Much ado... or not... or maybe just "grace"

Last night I caught a few minutes of a "House" episode where one character had some weird thing going on that they couldn't figure out for (surprise!) an hour. Big deal, right? Same story, just how long will they go before they realize it's not Lupus. It's never lupus. But that's not what I came to talk about.  It was that the main bed-ridden character had low testosterone levels. (They didn't say how low, so one, well, ok, I was left to wonder, and get competitive, "Was it lower than mine?")
So, they gave him testosterone shots.  And he turned from this wonderfully sensitive man into a complete jerk, from, one thinks, the massive bump in testosterone.  Interesting, but schtupidt (do an Arte Johnson voice from Laugh-In and you'll get it).  I mean stupid in the sense of the jerkoid factor of the character being completely driven by the hormone.

It's not that easy. I'm not playing down the factor the hormones have because I've been through something of that picture myself. But I didn't like the implication that the shift in the TV character was all hormone-driven.

Of course, I'm arguing. And I'm still in the throes of trying to understand how I was changed by a lack of a hormone and identifying what that means for the future "me".  It's not that I haven't come back to some sense of what I was before the treatment regimen (so, sex drive *does* return, happily and, surprising as it seems, annoyingly).  But having been through that treatment I am not the same, no matter if my blood tests say I'm inside the envelope now.

Oh I don't know what I'm trying to say... but I'm still trying to say it.  Why is it that I try to put words to something that has no words?  A friend of mine recalled the words of the Greek playwright Aeschylus:

     Wisdom comes through suffering.
     Trouble, with its memories of pain,
     Drips in our hearts as we try to sleep,
     So men against their will
     Learn to practice moderation.
     Favours come to us from gods.     (fm. Agamemnon)

...which she quoted more along the lines of Robert Kennedy's variant...

     Even in our sleep, pain which cannot forget

     falls drop by drop upon the heart

     until, in our own despair, against our will,

     comes wisdom through the awful grace of God.

During that same discussion, somehow, the term "grace" came up.  My friend had heard the term defined by a caller on a radio show (I think) and it goes something like this:

"Grace is an event that happens, unbidden, against your will, in the midst of struggle, free to all. And after that, you're never the same."

Even if there isn't an original thought in my writing there is this: a shared experience across the ages. And so it goes.

Remembering Tom Jackson

I went to Tucson recently on one of those mixed blessing trips: a memorial gathering honoring the life of a dear friend and long-time colleague, Tom Jackson. The memorial occurred on what would have been his 60th birthday. He passed away in August, 2011 after being diagnosed in October 2010 with stage 4 glioblastoma multiforme, the same diagnosis that claimed the life of another close friend, Andreas (I wrote about losing Andreas here).

I don't remember when our paths crossed the first time, but it was certainly at work and I think we were both managers at the time. But our friendship came when we had both stepped out of management into technical positions. We shared a similar responsibilities, but it was (I think) the similarities in our sense of humor that became a true bond.  There were other things.  We both used our middle names. Our birthdays were close together. We shared a sense of irony and a sense of the absurd that just clicked and provided many laughs.  We shared an eclectic taste in music, and he introduced me to such edifying tunes as Mojo Nixon's "Don Henley Must Die" and Ten Wheel Drive's "Morning Much Better".  In a highly competitive environment we managed to maintain a friendly sense of competition.

I was on leave of absence from work when he called me and told me about his diagnosis.  He referred to the brain cancer as another step in our years of competition.  And I think I told him he had once again taken this competition too seriously.  And we cried on the phone.  Because of my experience with Andreas, I knew the statistics. Yet we had hope to beat them somehow.  And he differed wildly (from Andreas) in that his first surgery didn't take away a lot of who he was.  But I secretly worried that the tumor would return.  And it did.  I won't walk through the steps he took all the way, because it isn't that important now.

What matters is that we had a connection and let it grow into something fine.  I was fortunate to have shared some part of the last steps of the walk of this life with him and his family. We got to say what we needed to say and I treasure my memory of him. 

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.