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.

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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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.

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.

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...

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!

Thinking, or not...

Stopping off to see my radiation oncologist the other day (who was kind enough to talk to me about a question of the moment regarding DHEA (a hormone I was thinking of taking)), I was surprised to discover in the course of our conversation that anemia is an effect of the course of treatment I've pursued. Probably someone told me about it before and I've just forgotten. Anyway, I've started taking a multi-vitamin to address the anemia a bit until I hear from the lab about it.  And DHEA is not something to pursue right now.

And then I've been working on some decisions I have to make about my status with my employer and how to handle all that. I think I've made some decisions which will allow me to get into some recovery zone before coming off disability.

But doing all that made me think about the level of time-consuming work and thought that goes into just living day-to-day with cancer and the effects of treatment. So often we hear it referred to as "fighting cancer" and that phrase sounds so active and brave. But I have come to agree with a news article my cousin sent me that questions the "fight" language. It feels more like living - with the cancer, with the treatment, with the odd, annoying, depressing effects of the treatment - than it feels like fighting.  It's more of a walk, too, than a fight, mainly because one wakes up and tries to go through the day (and night) with another thing tagging along. And maybe that thing was there all the time but the events that nudged the thing into outline have caused it to morph suddenly into a thing (if that makes sense).

Nutrition... or not

I've been thinking about the effects of the radiation and how those effects have been altering my body.  That's no big surprise.  But thinking (and talking to friends about my thoughts) has led me to decide to start taking some pro-biotic vitamins and supplements.  So I went out today and bought some things to start taking.  And all of that got me wondering why it took so long to get me to this place.

It seems to me that the people who took me through this process to defeat the cancer (which I am hoping we have done) are the same ones who should advise me (somewhat) on recovering from the wildly unnatural treatment I've been through.  Or am almost through.

When I started external beam radiation, the radiation technicians (or the nurses associated with them) gave me some information about diet during radiation treatments.  (They also gave me an introductory set of materials about prostate cancer that seemed a bit funny to me at the time.  After all, I'd been in treatment for about 6 months by the time they handed me those materials.)  Anyway, I questioned the diet advice they gave me because it just didn't make sense (and the materials didn't help convince me).  But even though I questioned the information, I was aware of it and was therefore more conscious of how my body was handling food during the treatments.   

But no one said boo! about recovering from radiation treatments.  Well, that isn't quite accurate. They seemed to say that time will tell.  Wait and see.  Or something along those lines.  But wait a second.  The radiation oncologist has maps of where the most intense radiation hits, and where the next most intense stuff hits, and so on.  And the colon is one of the areas that gets hit fairly hard because of its location relative to the prostate gland.  (Or I think it gets hit fairly hard. I haven't seen my radiation map, so I don't know for sure.)  So, having those maps might lead someone to say, "Hmm... wonder what happens to all the flora in the bowel when we pump radiation into the area? I bet it kills it off better than being on antibiotics. I wonder how long that stuff takes to regenerate?"  Or maybe they don't think like that.  But I do.  Now.

Anyway, shouldn't there be a set of general guidelines of things you can do to get the flora of the colon back to some semblance of normal balance following treatments like this?  It would be a good thing to have is all I'm saying.  Instead, because I'm generally a bonehead about diet, my tendency would be to jump back into my diet of old and think things should be just hunky-dory (not!).  And if I have questions, floundering around on the web seems to require that I know the answer I'm looking for already.  So what am I supposed to do?
 
What I want is a kind of "Nutrition for Dummies - The Nuclear Medicine Version" (don't sue me, Dummies people!).  Or "Nutrition after Radiation."  Or how about a referral to a nutritionist at the end of radiation treatments?  Or even an online reference to someone you can pose questions to?  Would that be so hard?  I don't think so.  And it would leave me thinking that the wise doctors had considered more than a specialty-oriented view of the situation.  And that would make me feel so... so... special.  Really.

More discoveries and thoughts on changes

In a short discussion with a friend about the effects that radiation treatments had on both of his parents I heard some disturbing news: in his experience, the effects of the treatments never went away completely. Of course, I am not conversant with the details of the treatments (length, area, dosage, etc) his parents went through, but his father's treatments were related to prostate cancer, so there is some similarity. Hopefully I will recover, but I know that my digestion and elimination is not close to being back to what I would have called "normal" yet, and it's now 9 weeks after the last radiation treatments were done.

But 9 weeks isn't too long, I suppose.  It's only that I wanted it all to be better in the shortest amount of time, and that, I guess I was way too optimistic. 

And I haven't found any decent information about how the body processes the radioactive *stuff* (for lack of a more erudite term) out.  So, I go along hoping some hint of normality will begin to return.

At the same time, the effects of the hormone treatments continue to increase.  Hot flashes are more frequent, and longer, than before. My joints are sore, and it hurts to stand on my feet in the morning (this all dissipates as I move around) and my energy levels are pretty low.  Add to this a brief stint with a cold this week and there were some days when next to nothing was accomplished.

Normality is far from being restored is the bottom line.  And (warning!  graphic details ahead!) the radiation and hormones are having other effects as well...

Continuing to wade through the information mess

A good friend who happens to be a doctor just sent me a link to a study about bone density loss (and resulting life-long risks of bone fracture) for men like me who are undergoing androgen deprivation therapy (what I call 'hormone therapy'). While I haven't read the entire text of the paper (yet) it is something to talk to my doctors about and see what their advice is.  (I put the link to the abstract in the "helpful links" section too, and can share the entire text with anyone who's interested.)

Speaking of talking to my doctors, I saw my radiation oncologist recently and he thought we should start running PSA tests again to see what the levels looked like.  Fine with me.  But then he noticed that the urologist had used a different lab than he had used.  So, he held off setting those up.  I must have misunderstood, because I thought he was going to contact the urologist and settle who should handle what (if that makes sense).  And so I waited to hear from one of them.

Silly me.  I didn't hear from either doctor... and finally called the radiation oncologist's office and talked to one of the nurses who essentially told me that when radiation was done, scheduling of tests belonged to the urologist.  And so now I need to call in to my urologist.  But some part of me thought this was a cooperative effort.  Turns out you need to manage this all the way.  And I think that also means managing the research efforts and follow-up with the doctors.

That might sound like a slam, but I don't mean it as one. It's a disappointment to think that there are such lines of demarcation, and seemingly no overall manager of the case except for me (and my network...bless them!).  I should have known, or at least expected this based on prior experience with managing medical treatment and information with my father. 

But wait, there's more...

Continuing research and ...

It's been awhile since the last post, and that, for some reason or another, seems odd.  After all, I am not cancer-free yet, even if the path I'm on is going according to plan.  I am still under the sway of the hormones, which make my mood swings a bit unpredictable (I'm easily pushed to a rather depressing state, if anyone wants to know... which I resist with varying levels of success), and I have no stamina or energy.

I talked to my radiation oncologist last week or so, and he verified that the lack of testosterone alone is enough to make me feel the way I am.  Add to that the residual radiation effects, and the experience I have makes perfect sense.  Which is not at all to say that I handle it well or am accepting of it. I want to be productive again, and working, and active, and I feel like I am none of those. 

I need to do some more research into follow-on steps, and keep up to date with current medical research... but I have no energy for that either.  Whatta case!  But there is the scheduling of the follow-on PSA tests that needs to be done.  And my doctors seem to be bouncing that back and forth between them (or if not, that's my perception).  We would have set them up when I last saw my radiation oncologist last but for the fact that it appeared that the urologist used a different lab.  So right now there are no PSA tests scheduled. 

But the research I will pursue is about the new drug Provenge, which I read about in a NY Times article from last week.  From what I read so far, I doubt that I'd be considered for using it, but it it worthwhile finding out more.  

Other effects from the hormones: hot flashes are increasing in intensity, frequency, and duration. And my bones seem sore... hurts to stand up in the morning and also hurts to sit for too long.  Strange effects.  I stopped taking the Flo-Max this week, and so far that seems ok. 

Geez... not a funny line in this entire post.  I blame the hormones.

Wondering when it's done...

The past few days I've had some reminders that I'm still working my way through this process still. Some intestinal reminders, a whole lotta sleeping going on, and still a fair amount of fatigue. I suppose some of what I'm feeling is residue from the radiation treatments, and another level of it may be more related to my reaction to the hormone treatments that are still ongoing.

There's another nagging question that comes up - from others as well as myself: How do you know it's been successful?  And really, from what I've been told, that's hard to tell. I can read the data charts on success of radiation treatments + seed implants along with hormone therapy, but how can I know that it all worked?

The radiation oncologist said we'd start monitoring PSA levels at some point (I don't recall exactly when) after the hormone treatments end.  And we'd be monitoring those for 5 years, with the expectation that the level should be somewhere between 0 and 2.  And he said they wouldn't run any additional tests unless the PSA level popped over 2.  So, OK... that tells me the plan... but it doesn't tell me that it's all good.  Until we've been through the next 5 years, I guess. I see the radiation oncologist soon (follow-up) so I'll get a better idea then.  I hope.

Somehow, that doesn't give me the solid yes (or no) I was looking for.  It gives me a "wait and see".  Get back Loretta!  It's not any different (really) than it would have been if I'd done surgery. It's just that I keep getting asked "was it successful?" and well, if we'd cut something out, I'd know - maybe - that the procedure was either a success or not.  But I have the sneaking suspicion that thinking is fallacious.

April is the cruelest month...

But let's not go too far with that.  Who knows, maybe ole TS Eliot was referring to tax time? It sure hurt here.
But hey... that's not what I meant to talk about.  In the wake of the events of last month (losing my job, going on short term disability, the end of radiation, and more) I realize I have been distracted from my habit of chronicling my experience here.  So, today...

I took my first bicycle ride in ages - since January, I think -  this evening and oh man am I out of shape!  11 miles and I was huffing.  Very disappointing, so I think I'll try to step up the activity, or at least maintain this (seemingly lousy) level for the next week or so, and hopefully I'll see some change. There is so much coming back that needs to happen, and even though I tried to keep active on the indoor trainer, I just wasn't able to maintain any consistent level during the last of the radiation treatments.  In the weeks since the radiation treatments ended (it's been about 3 now) I continued to see effects build.  For example, I needed to make some diet adjustments to slow things down a little.  Rice, and grilled cheese sandwiches seemed to do the trick.  At least for me.

I'm still sleeping a lot, and as I saw last night when my sister was visiting for Easter dinner, I reached a point in the evening where I could just tell I had to get to bed.  OK... it was late, but it was still before midnight!  Anyway, I felt myself shut down, and just said I was sorry, but I needed to go to bed.  Geez.

In closing, let me relate a short story that fits, I think, with the whole discussion of this being a fortunate occurrence (the cancer, I mean). I was talking to a friend about the shift that happened in my life, a shift that was completely outside of my control, yet happened as clearly as the dawn.  I couched this using a juggling metaphor (something I cannot do, yet do with great regularity anyway).  I suggested that all the tasks I was keeping up were like balls, being juggled by me.  When the shift happened, it seemed to me that I chose to drop all the balls, except for one very important one.  And in my thinking, initially I considered the one ball as being solely related to the cancer and the steps needed to address that. But I see now that the one ball contains properties of all the other balls I was striving to keep in the air.  So, the one ball, the important one, is being held and contemplated.  And in the sense that the one contains properties of all of them, what is important about the other balls is represented in the one, and therefore they remain. But the juggling is no longer important.  What is important is the one.  It is, in a very real sense, holding on to and letting go of everything, all at once.

End of radiation treatments!

Monday this week marked the last radiation treatment for me. To celebrate the occasion I bought a couple of boxes of See's candy for the staff at the radiation oncology office (and I included the doctor's office as well). I wondered if candy would be frowned on, but a couple of the nurses said that (I quote) "Sugar is goooooood!"  Who says it's not a drug?

At home, we opened a great bottle of champagne at dinner, and I also brought a box of candy home for celebration.  I'm glad that the treatments are over, but I already miss seeing the great staff at the radiation oncology department.  Wonderful people who manage to keep a tolerable face on some very serious business.

Of course, stopping treatment doesn't mean I'm off the hook.  I was reminded by my body that the effects of the radiation are still underway, and so I've made some adjustments to my diet, and am sleeping whenever I can.  However, ending radiation does mean that I'm off the bicalutamide (the testosterone blocker).  I think it's also a bit sad to say good bye to my visual - the Roller Derby grrl I envisioned as a "testosterone blocker" ... aptly named "Maura Lee Bankrupt".  But all things have their time.  So, I'll embed one last view of Maura Lee... give her a big wet one, and move on.  OK... maybe not a big wet one. Maybe just a Roller Derby high-five.

So, what next?  Well, there's another hormone still in play here - the Trelstar shot that I have been getting every three months.  I have the third one of those coming up the end of March, and another one sometime in June.  This is the hormone shot that essentially keeps the pituitary gland "out of gas" if you will... so my body has none of the stuff that triggers testosterone production.  It's a strange and wacky world!  So, I need to keep slamming calcium and vitamin D.

And try to get some exercise, even when I don't feel like it.  Hopefully being off the testosterone blocker will have some effect that helps in that regard.  We'll see.