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.

Changes, changes, changes...

And now I have that silly David Bowie song stuck in my head.  Yaaaaaa!  Oh well, my own fault.

I haven't posted since ... March 3rd... and looking back, I'm surprised I had it together to post on that day.  I had a bit of a curve thrown my way on the 1st, and it's taken me quite awhile to get some semblance of a handle on it.

Let's see... what are the positive words to use about the curve?  Here's one version: "My company is going through a major restructuring.  Many kinds of work were being affected and mine was one of them."   Or, here's another spin: "My company decided that since my work was to make things easy to use, and because all of our products are now so intuitive, essentially I had worked myself out of a job."  But let's just be direct:  I was laid-off. 

Anyway, I wanted to get through some of the emotions before writing about it in public. Reason? Well, I don't want anything I say appear to be something the company could construe to be negative press, because that could affect my severance package.  I am not making that up. Or at least I think it could, potentially, at the sole discretion of said company, come back to bite me somewhere that would most likely hurt a lot.  Like my wallet.  But really, to say that I was surprised, hurt, shocked, angry.. is all talk about me, and you know.. it is all about me.

The reason it (my job) even figures into this blog is because this came at a time when I feel particularly vulnerable.  And at a time when I know my energy level is pretty low.  And so, I felt as if the cosmos was just adding insult to injury by this happening at a time when my ability to be excited about a job hunt was maybe at its lowest ebb.  Perhaps not, but that was the initial feeling.

But the layoff led to some amazing interactions with the people I love.  Truly touching, loving, practical help was offered and given by family (thank you!), friends (thank you!), business colleagues (thank you!)... and I felt as if I was taking part of an enormous group hug.

One example: I was at radiation on Tuesday after getting the news.  Tuesdays are doctor day for me, and before I see the doctor, I get weighed (ugh!) and one of the nurses usually asks me how I'm doing before the doctor comes in.  So, Carolyn asked. And I told her. Poor Carolyn!  But she was great.  She said, "Oh you need a hug!" and gave me a great big hug.  Now you need to know that Carolyn is almost as tall as I am, so that hug just wrapped me up... it was exactly what I needed and I'll never know how she knew.

But really, it seems that everyone I've talked to about this event has done the same thing, sometimes in a different form, but in the same sense, and I have felt so loved, so cared for, so strengthened by it all. 

And today marks the last day of radiation!  I will miss seeing the team who has treated me with such kindness and patience (with my antics and this blog) every day.  I won't miss the dash to the doctor's office down highway 85 though. 

Next step?  More hormone shots, coming up.  Ouch!

March, 2010... How did it happen?

Well, hey, I thought I'd get in a last post for February, but the day turned into something completely unexpected. I mean, I slept in, puttered about for most of the morning, took Katie for a walk (she was completely thrilled) and then... found myself in a listless, pacing, weird state of mind. And dang it... I couldn't shake it.  There were plenty of things to get done, and I didn't do one of them. I hope that wasn't a glimpse of things to come.  Heck... I didn't even feel like drinking a glass of wine! That's how bad it was. 

I ended up taking a nap, hoping I could sleep it off kind of like the way I used to try to fall asleep on long car rides when I was a kid because of the nifty way sleep has of compressing time. If you can get to sleep, a day-long ride in the car seems more like a couple of hours.  And then I started this post on Monday, the first of March, and got derailed by some completely lousy news at work, and so now it's mid-week and I'm lagging behind.  In more ways than one.

Last week, I gave the radiation tech's my blog address and now I find myself wondering if I've made anyone feel bad in how I've reported on this journey. I sure hope not. But really, I'm not aware of having said *too* many rude things.  And it seems a bit presumptuous to think that there are a lot of people reading this. I know of a few, but most of them know me fairly well. In some respects, this is a bit like working as a disc jockey was for me (yes, I did that ...and worked as a radio engineer for a few years). There's something very unnerving about having a conversation with a microphone, which is a little like writing here. But that's not what I want to talk about.

"You don't know it yet, but we're the lucky ones... "

I've been mulling this one over for quite awhile. And I still don't think I have it quite handled, but I'm fairly sure I am not thinking about this the same way Lance thinks of it.  Well, natch... I'm not nearly as fast on a bicycle as he is and besides, I'm just a *few* years older. 

Originally, I read this remark that someone sent to Lance Armstrong when his cancer diagnosis became widely known. At that point, Lance was far from coming out the other side of the experience. And when I re-read the book - "It's Not About the Bike" - the remark struck me anew and has been with me ever since.  I'm not the only one to take note, because a brief search shows several people quoting these words. How are cancer patients the lucky ones?  Hmm?

Well, let me digress for a minute.  Or maybe a couple of minutes.  I have friends who have been fighting much more serious battles than I have with this cancer. People who have reached the point of saying they weren't sure anymore why they're doing it. People who woke up in the morning and wanted to just die because they were (and are) so tired of the whole process. Doctors appointments, needles, pills, bills (OMG the bills!) and worse than the bills, insurance fights... all that in the midst of that having to give up their whole self-concept.  All of it.  And then re-define themselves.  It is another example of letting go of what we hold dear, willingly or not.  I only know the barest edge of that... and while I'm thankful for that, it humbles me and makes me wonder why I write as if I know?  Really, I was more concerned about the changes to my life than I was about the cancer (which several people close to me thought was outlandish...and rightly so!).  But here I am, writing anyway... and I won't stop. :-)  But back to the point of the post...

So what about it? What makes someone who has a life-threatening disease consider themselves lucky? Or more broadly, what is it about going through an intense adversity that changes people into thinking - and perhaps more importantly - feeling that they are somehow chosen?  Parallels abound once the question is made a bit broader and I find it begins to make sense within that context. Some of the parallels that come to mind - military experience (which I don't have), intensive training (which I know very well) - and now that I think of it, it seems the common thread is a sense of surviving something.  Going through a difficult passage and finding the result of the struggle has produced a different perception, a different approach, a different person still moving into the future, but now (as Eliot said) no longer at ease in the old dispensation. No longer living the same... perhaps more conscious, more aware than ever before.
There are spiritual examples as well, and our myths are full of the struggle, the passage, and the changeling that results from it all.

It has been good to write about this. And I celebrate the struggle even while lacking understanding of it and the mechanics of it.

And I celebrate being on the downhill slope of the radiation treatments. #17 done today.  Eleven more to go!  Woot!

Session 13 down... and some effects coming into play

After the third run (and I mean run) to the restroom at work yesterday I decided to head home and work from home.  Shorter route to the bathroom, see?  And (as it turned out) a much easier place to take a bit of a nap during lunch, which I did.

The effect was mainly an increased urgency to sit on the toilet. I chalk it up to having a cup of coffee which had an immediate effect (I had stopped at Starbucks on the way to work at around 6am) when I finished the cup... and then things kept talking to me.  It was not an unexpected symptom of the radiation treatments (they're shooting right through my bowels for Pete's sake), but like the egotistical man I am, I thought that those symptoms were for the lesser people. Really.  Or if not, that I would somehow be different.  It was not to be.  Sigh.  But so far, it's not bad.

So, it appears that I need to give up coffee for Lent.  Not that I want to (and my head doesn't want to either... I've got a trace of a headache as I write this)... but I prefer not pushing that particular envelope... if you know what I mean.  On the other hand I have not significantly altered my diet yet, so that's good. I'm still eating vegetables and fruit and things with fiber.  And it appears that tea is still OK to drink.  Somehow the caffeine in tea doesn't affect me in nearly the same way as the caffeine in coffee.

Otherwise, the treatments are going well... or as well as I can tell. While telling some friends about it last night we stumbled upon the funny thing that the set of treatments is the same as a lunar cycle.  Oh, well, a lunar cycle with weekends and bank holidays off.  Snort.  So a lunar cycle but not.  Anyway, when this gets posted I will have completed treatment # 13 (of 28).  Maybe we'll open a bottle of champagne to celebrate the halfway point tomorrow night.  Yeah... that's the ticket.

Reflections on 10 days done... and moods...

Friday was the 10th day of radiation, and I was thinking that the increased Vitamin D + calcium I've been taking was having the effect of improving my mood and my energy level.  Then on Sunday I woke up in an unexplainable blue funk that just would not leave me.  So much for the vitamin boost, I guess.

But that only highlights, yet again, how hard it is to figure the side-effect picture out. At any rate, after a lot of positive energy from my youngest daughter, some good food and a bit of work in the yard, my mood improved considerably.  I suppose that's the key (for me) for the mood swings: keep moving and direct attention somewhere else than where the mood wants to take me.  As my youngest cousin (who called while I was pruning some roses) said, the capability to go to a dark place doesn't mean I have to go there. 

I agree... with some reservations. My cousin is right about not going into a dark place... but my feeling is there are times when I need to go into the dark because I have a need to know. I just need to know about the place.  (I'm sorry to keep using the word "place", because it seems so overused.) But there are times when I know doing that will only result in my thoughts wallowing in the dark.  I don't need that, and certainly I didn't need it on Sunday.  Maybe that makes sense. 

I got an extra day off from radiation because the doctor's office was closed on Presidents Day.  So by the time this is posted I will have had my 11th treatment.  And it's doctor day too!  So... I can ask the questions about the hormone pills... if we stop that when radiation is done or what. Cheap thrills!  Or not so cheap.

My weight continues to increase, which concerns me, but I'm trying to let it go.  I mean the worry.  I'd like to let the weight go as well, but maybe not until I finish the radiation. 

One last item I keep returning to in thought (and have yet to resolve or write about) is the remark "you don't know it yet, but we're the lucky ones" that someone writing to Lance Armstrong made. I assume it was another cancer patient but need to look it up again. It comes into my thoughts on a regular basis and because of that I think it needs exploring.  But other than this superficial noticing, I don't have more to write at this point.  Oh good grief... all that to say "gee... iDunno". 

Drugs, drugs, and more drugs

Oh, and did I mention drugs?  But first... the countdown continues: 7 of 28 sessions down.  Woot!

This week, due to some fun with my corporate drug dealer (ok, business partner) I had to turn a long term prescription into a mail-order thing.  That's fine, but the whole experience is weird.  And it just keeps getting better.  But the corporate connection came through in stellar fashion, complete with a computer voice call to put me at ease.  The woman who "talked" to me told me they had just shipped my prescription, so CLAM DOWN you silly human, you.  Ya Maroon!  I know I was ... uh... impressed.

The bag with the drug arrived and inside was a ton of paper telling me all about this drug - which is the generic form of FloMax.  Interesting list of possible side effects, one of which was kind of funny, in a twisted way: decreased semen.  I laughed.  Sorry... but I did.  And if you go looking for a list of side-effects of this drug, have fun.  Oh yeah, there is some mention of nasal congestion and coughing, which I have had.  And I think this one has lowered my blood pressure a bit.  Otherwise, no big deal.

The hormones continue to cause hot flashes... which are getting a bit more insistent as time passes.  I'm wondering what happens when I stop the testosterone blocker.  I was supposed to be on that for 6 months, which would have taken me out to March 21st I think, but today I found out that maybe I stop taking that when the radiation treatments end.  Need to confirm that next week.

And I did a little reading about bone mass loss in men due to no testosterone.  That, coupled with an article about the benefits of vitamin D has made me start pounding the little chewable calcium tablets... (they've got vitamin D in them as well) in the hopes of heading some of that off.  If it's not already too late.  Seems that recent data indicates that anti-seizure medications can cause bone loss too.  And I've been on those for AGES.

Re-reading this I think it's a bit scattered.  But it's time for a quick nap before dinner... and I'm not going to fuss over it. The post.  Not the nap.

In the wake of week 1 of radiation treatments

Last Friday, week one of radiation treatments ended quietly and uneventfully with me feeling more tired than I thought I should have felt, but everyone else thinking I was a bit off my gourd, so to speak.  OK... I think everyone else is right, and I'm wrong... and I freely admit it.  And the only lame explanation I can give for my thinking is that I had the idea I would somehow be able to tell the difference between this radiation tiredness and the tiredness from the radioactive seeds.  Or this tiredness and the tiredness associated with the hormone treatment (which is still a very present factor).  Or (weirdly) this radiation tiredness and the general tiredness brought on by general life stuff.

Mistaken?  Yep.  But, still, I want to know more than I have had time to discover.  Here's a short list of items I'm still curious about:

• Body absorption rates - what is the ramp-up curve of symptoms relative to the rate at which my body absorbs the radiation?
• Along with that, how does the body deal with the radiation? Meaning, what different processes are running in overdrive right now simply because of the radiation? (That one seems like a simple one to answer, but is it?)
• How is this program of radiation actually designed?  I ask that because I noticed over the last week that the rotation of the machine around me is not consistent. Nor is the duration of exposure equal in all locations.  So, how is this laid out?  And, following that, who checks to see if it's actually working?
• Is there anything written about the drugs I'm taking (bicalutamide and Flo-max now) having an effect on dreams?  I'm having some pretty interesting ones.
• I need to know more about Vitamin D and bone loss in men due to the lack of testosterone that this treatment regimen causes.  What are the long term effects? How much damage is being done? And what happens if my body doesn't begin producing testosterone on it's own after this treatment is over?

Still on my list of things to do: create a visual of the overlapping treatments I'm doing.  There's no real need for this, but having something like it would have helped me understand the treatment sequence and layout when I started. 

There's more... but it's late and sleep beckons.  Onward into week two!

What to do while under the beam

Radiation session 4 of 28 done! Woot!  I'm still having a bit of fun identifying the steps the machine takes and checking out the room.  Silly, maybe, but there ya go.  And besides, it's a good thing to be involved with this.  Or so I tell myself.

But first, I asked about how often they calibrate the machine (which, by the way, is a Varian Systems Clinac iX Linear Accelerator) and the answer was: Daily.  But OK... I didn't ask how that was done.  But according to the technician, a great many of the errors that were possible early on in the IMRT history have been fixed by updates to the machines and software.  The machine itself is huge... I'll post some pictures on the next page... and I would love to see it with the covers off.  Not likely to happen.

The doctor's office I go to has a special section for patients getting radiation treatments that has a set of small changing rooms, some semi-comfy chairs, a card table with a jigsaw puzzle on it, and a closed-circuit camera that someone down the hall monitors.  So, you just walk in, change into the uniform, and wait until someone comes to get you.  It's kind of nice... as long as you're OK with waiting a bit.  Machines, being what they are, have some glitches sometimes.  Personally, I'm just fine with waiting until they're working properly.  Like I'm fine with the pilot who wants ALL the engines to work before taking off.

The first thing that happens, after getting on the table and lying down (with the requisite paper drape) is they get me aligned using the tatoos on my hips.  Anthony usually says "lie heavy" which I take to mean "don't help me move you" rather than tell him some heavy-duty lie from my past.  He scoots me a bit, and once I'm in position, he leaves the room. Today I asked about the need to have clothing out of the way, and Anthony told me that some material causes the sensors to register a kind of false signal... like thick skin, so the machine compensates with more radiation.  They don't want that, hence the drawing back of the clothes and the paper drapes.

Next..

IMRT Radiation - 2 down, 26 to go

I had good intentions of posting following my first day in radiation, but that didn't happen obviously.  So, here goes ... day 2 treatment done and talked to the doctor afterwards.  Evidently, Tuesday is my day to see the doctor after my treatment and so I almost called the post "Tuesdays with Dr. P" but that just didn't sound right.

Anyway, my initial impressions... and I stress the word "initial" ... are that radiation treatments sound one heckuvalot worse than they are (assuming there are no horrifying complications). The short version is,
I arrive at the doctor's office and change, wait until they come and get me, hop on the table and get in position (with help) and dang near fall asleep while the machine does it's little loop around me.  That's about it.  Of course, I swear I can feel it, but I can't.  And I keep looking, in vain, for some indication like sunburn or something... but that's not there either.

Thing is, the effects of this treatment have a curve over time, just like the effects of the hormones and the seed implants.  So, I'll see a bump in effects, probably starting around week 3 or so and (they say) lasting up to 4 weeks after the treatment stops.  Well, OK then.  Psyche up!

Today I thought how funny it is that I've got this paper drape over me (once again with the drapes) and yet this is a huge linear accelerator doing radiation on me... and I haven't asked yet what gives?  Why can't I keep my sweats on?  Do these rays bounce off fabric?  Ah.. so much to know... so little time.

But all in all, the start of this stage is going very well.  Tomorrow I'll have more about the exposure sequence... because that is fascinating too.  OK... maybe only to me... but fascinating just the same.

Support & wisdom and STYLE

Standing on the edge of the next phase of treatment, and undoubtedly stressing a little about it, I'm struck with how subtle remarks from friends and family are (to quote my mother) "a boon and a blessing".  Examples abound, from comments on this blog, to supporting remarks left on Facebook, to my sister saying that the fatigue I'm feeling now is an indication of work taking place.  And it's easy to lose track of the fact that work is taking place.  All of this forms a web of thought, feeling, and support that amazes me.

And so this post is to acknowledge the wisdom of the group, the support that provides this intangible yet clearly present gift.  There is no way to be worthy of such a gift, but there are ways to be thankful.

I know this path has to be walked down, and that is no trite phrase. It literally has to be walked: 5 days a week, for the next few weeks, until the radiation is done.  Oh all right... I'm driving down part of it (the road to the doctor's office).  But as I used to say about some other stressful work... you just keep going and really, you can do almost anything for 5 weeks. It's not that long.

And maybe "edge" was the wrong word. This isn't so much like jumping off a cliff, which is sort of implied by that word.  It's more of another door, a word which I fear borders too closely on a hackneyed cliche (excuse me if it is!).  Or maybe just another step down the hall that leads from the radiation waiting room to the door that says "High Radiation!" (I am not making that up... I'll have to get a picture of that door) at the doctor's office.

I am, and will ever be, in debt to the gathered support and wisdom of the people in my life.

As for STYLE...

Feelings in the mist... and radiation set-ups

OK... this is about feelings mainly, and not about prostate cancer, specifically, or about the technology or about the treatment regimen... so feel free to bail now, and no hard feelings, see?  Because I want to vent a bit and I know that venting is sometimes just a pain.

So, I'm tired. I haven't been doing anything that would seem to make me tired, and yet I'm tired.  And (to be a bit silly) I'm tired of being tired.  It's a whine, I know... and I think if I'm like this now, when radiation hasn't started... what will I become halfway through?  A whining, sniveling, piece of cheese?  (Now there's a visual for you!)  I certainly hope not.  Even so... it could happen.

And coupled with being tired is a wonderful soreness in my trunk. Well, not so wonderful, really.  Again, if I had been doing something - yard work, swimming, lifting weights, for example - and got like this, well, it would almost be good!  But knowing I'm not doing any of those things and yet still being here... stinks.

Now I know I have it easy. I know that as far as pain goes, this is nothing.  And while I don't beat myself up over that, I know it.  Even so, this is part of the struggle, isn't it?  I mean the struggle that is not cancer, and is not tiredness, but the struggle to be, and to find meaning in that being.  The feeling is very much like some of the words Longfellow wrote in "The Day is Done"

...And a feeling of sadness comes o'er me   
  That my soul cannot resist:   
 
A feeling of sadness and longing,   
  That is not akin to pain,     
And resembles sorrow only   
  As the mist resembles the rain. ...

That about sizes it up.  I won't dwell on this long. Or often. But it helps to get it out.  And I lied when I said I wasn't going to talk about the treatment... because I am.  But only a little... on the next page...

More on Intensity modulated radiation therapy

I've been reading the NY Times articles about radiation treatments for cancer (as they're unfolding) and I must say the news is rather dire (the link goes to the latest one).  I'm going both ways on this now - wanting to be informed, but also knowing that I'm not likely to change directions on my treatment when I've come this far down the path.

Why not change?  Well, for one, all the data I could gather pointed to better results with this course than if I had chosen surgery.  And my tendency is to think I'm going to be one of the ones who has relatively few problems along the way.  But I don't think other people go into the treatment expecting problems, so that's not a new thing.

I'm not surprised at the problem being reported by the Times, I think because I see it every day. I work in a technology area, but I'm focused on the human side of technology.  The fact that technology outpaces understanding and training is not new. And it doesn't surprise me to find out that controls and regulations on these machines are inadequate or completely absent. And it's certainly not surprising to hear that companies might think of releasing a product just a bit ahead of when they should.

But I found something key about my approach...

Risks of IMRT - or - Never stop questioning

This post is based on an article in the NY Times that was recommended to me as something to read before my radiation treatments start.  It's a long read, but an important one for anyone considering radiation treatments.  It's titled "A lifesaving Tool Turned Deadly".  Check it out, but be prepared. It's pretty graphic.  Or if not, read on...

Because I'll talk about it a bit more.  Reading it caused me to call my doctor and ask for a consult before we initiate the IMRT plan that we've been working on.  Up until now I have been reading some of the information on the web about IMRT (intensity modulated radiation therapy) and have been fairly impressed with the ability to get some pretty precise margins around various tissues.  And it's all computer controlled.  So cool!  But at the same time not! 

As the NY Times article brought back to the front of my mind, one needs to maintain a level of detachment with regards to their treatment so that each stage can be assessed and questioned clearly and adequately. Instead, I allowed myself to be lulled into gear-headed awe with the technology... which is not to say I shouldn't have been impressed.  But I should not have let go of the questioning.  And really, the mistakes discussed in the Times article are part and parcel of my job from day to day.  Many of them boil down to human/machine interaction issues.

The Times article identified 621 radiation mistakes (in NY state) during 8 year period. Not a lot, when you consider how many radiation treatments were given over the same period (the number escapes me now) but given the severity of some of the mistakes, that doesn't matter.  In a sidebar on the article a small chart categorizes the errors and relevant factors found.  there were about two factors per mistake. Here are the top 7 factor categories:

1. Quality assurance flawed (355)
2. Data entry or calculation errors by personnel (252)
   
3. Misidentification of patient or treatment location (174)
4. Blocks, wedges or collimators misused (133)
5. Patient's physical setup wrong (96)
6. Treatment plan flawed (77)
7. Hardware malfunction (60)

(source: NY Times, 1/24/2010)

I promise, from now on, I will not give my CT technician a hard time about checking my identity and treatment every time (she gives me a test).  That ranked #3 in NY as a factor in the radiation mistakes.

I've been sitting on this post for a couple of days while digesting some of the NY Times article.  I have more on this, but it's time this was done.

The Continuing Adventures of Radioactive Man

If I was Radioactive Man a few weeks ago after the seed implants, today we would be seeing said superhero crawling along the ground as his life force got progressively lower and lower.  By my rough calculation, the Cesium-131 seeds are at about 5.5% of where their original strength.  And that's exactly where we should be about now.  So all is well, even if this means the death (or near death) of Radioactive Man. And I wanted to show the seeds here, and so I did some screen grabs of a video that one hospital site had about the brachytherapy (pronounced ... usually... like brake-e-therapy...).  So here they are, the first one on the left showing the seeds, the one on the right showing one of the needles used to put them in the prostate:

Of course, all this does is make way for a different version of the same story, only in this version the radiation will be coming from an external source, not one (or ones) I carry around inside me.  And getting prepared for that step was the reason for my latest visit to the radiation oncologist's office this week.
There was the usual preparatory sequence (aka enema) before a scan of the pelvic region.  It suddenly struck me as odd that the instructions (from the doctor's offices) have specifically stated that the enema should be done 2 hours before the appointment.  I have yet to find out *why* 2 hours (and not 3 or 1 ... or...)... All that meant that I had to get up at 5am to do the enema, because like a fool I had scheduled the appointment for 7am.  The big fun.  On all fronts.  Or backs.  Whatever.

I should stop and say something about where I am in the sequence of things.  I did the radioactive seed implants in December and they're winding down, so it'll be time to do the external beam therapy soon.  We're doing IMRT - intensity modulated radiation therapy - which is a form of external beam radiation.  The data from the scan today feeds directly into the planning stage.  Using the CT scan in concert with a computer program they build a map of where the beam should go and (equally important) what it should miss.  It's pretty cool, really... and after reading about it I'm pretty stoked about it. 

IMRT - Intensity Modulated Radiation Therapy or "Beam me up, Scotty"

Starting to do some research on the next phase, and finding some more new terms, new information, old information new to me, and more.  And in the midst of all that finding more information about steps that seem to be fading into the past.

But first, I finally found the specific Cesium isotope that is in the seeds I had implanted on Dec. 10th: Cesium-131, which I know, is just thrilling. I'm trying to contain myself.  Really.  But, as silly as it sounds, finding this specific information is a bit of a thrill.  It's relatively new, having been approved by the FDA in 2003, and the first implants were done using it in October 2004.  The link goes to the IsoRay site - the company who developed the process for using Cesium-131.

As for IMRT, I did some research on it over the weekend and am convinced that the theory I've read so far seems to make sense. There's a good, if a bit dated (2004), research paper on the Prostate Cancer Research Institute pages - a long read, but worth the time.

I think I mentioned that the next immediate step is to do some scans (scheduled for Wednesday) to map out exact location of the prostate.  You'd think they'd know by now, wouldn't you? I know I think that. And I must have had a look that said that when I talked to my doctor last week, so he explained that things move around a bit.  And this technique is extremely accurate so they want to make sure they're targeting all the right stuff, and not hitting much surrounding tissue.  The research paper above shows some fascinating data and maybe I can be forgiven for stealing one of their graphics for illustration purposes.  A bit tough to see maybe, but it's a map of the radiation to the prostate (in the center) that encroaches on the rectum only minimally, as well as other surrounding tissue.  The usability part of me finds it incredible that in the screen above "right" is on the left side, and "left" is on the right side. Hello?  It's a computer program...

And there's more...

"I got da blues..."

Years ago, a close friend of mine recorded one of his sons saying "I got the blues". I have a .wav file somewhere of a little child's voice, sounding rather peppy, saying "I got da boos".  And today started out there for me, oddly enough.

I've thought before how difficult it is to separate what feelings and thoughts are mine, if you will, and what ones are due to some mix of fatigue, radiation and hormones. To tell the truth, I was having enough trouble discerning my thoughts and feelings anyway, nevermind having the extra help from the rest of this experience. For the most part I've been able to be positive and up-beat about the treatment, the course of direction, and where I believe this path is taking me.  But I just want to acknowledge here that it isn't all that way.  I'm aware of feeling weak, not just physically weak, but emotionally as well. And someone saying, "Snap out of it!" serves to hammer home just how far off track I've strayed. Or seemingly so.

It's an odd thing to observe yourself going off the deep end... slipping quietly (or not) into a state of feeling unreasonably sorry for oneself. And frankly, Scarlet, there's a hint of wanting to wallow in this for awhile.  But thankfully, not for too long.  Trouble is, some of my tried and true methods for getting out of the that state of mind are shut off to me to a degree. I used to get on the bike and hammer that feeling out by just getting physically exhausted.  Now, I can't sit on the bike seat for that long.  So it goes.

But that's not what I want to think about right now.  I want - and need - to think about the next step, learn about that step and get into the frame of mind I need to be in for that step to proceed positively.  I don't have time to waste energy on feeling sorry for myself.  And that's not a list of "shoulds"... it is what it is... where I need to be, and where I will be.

I just wanted to get these feelings out of my head and out in the open, where, as Pooh said, the thing that seemed so thingish inside of you looks so different. 

Answers from the doctor visit

A bit delayed on this post, mainly... check that... entirely due to a migraine that took me out and stomped all over me. But things are better now, and the relief from the pain is SO goooooooood.

So... I posed a few questions to my radiation oncologist when I saw him this week. Some of them were rather obvious, from his point of view, but they helped clear things up for me.  At any rate here are the questions,

1. Q. What tells us we've succeeded in this venture to knock out the cancer?
   A. PSA tests. Ideally, PSA should be at a zero level (0.something) but we don't start running other tests and scans until the PSA level bumps over 1 or 2.  There are too many false positives and in the past we did other tests and biopsies which didn't lead to anything.  So, we wait until it bumps over 1 or 2 and then we start looking.
2. Q. What follow-up routine will we set up?
   A. We'll set up a series of PSA tests every 6 months for the next 5 years, and we'll be giving you a stack of test forms for the lab with dates on them... so we'll have all that at the end of the treatment.
3. Q. About the hormone therapy, why does the Trelstar LA continue so far beyond where I'll be taking the bicalutamide?
   A. Essentially, continuing the Trelstar LA (an LH-RH agonist) keeps the pituitary gland trying to signal the testicles and adrenal glands to product testosterone. But because we've already depleted that hormone no testosterone production happens.  So, we want to keep testosterone production at zero for a year. After that, we let it run... and testosterone production may take as long as a year to start up again (if it starts... sometimes it doesn't).

Those were the main questions I had.  There are some more that came to mind... but those I'll put on the next page.

Questions for the doctor visit this week

In a discussion with family over the weekend I was asked a couple of interesting questions:

1. How will you know if the treatment has been successful when you get to the end?
2. And a corollary: What kind of follow-up is planned to monitor your status?
3. And then, a question I've been wondering about relative to the hormone therapy:  I stop taking the testosterone blocker (bicalutamide) in March (after 6 months on that), but the luteinizing hormone-releasing hormone (LH-RH) shots continue until late June. Why?
   

I have my own ideas about #3, based on the little research (and understanding) I have of the hormone interactions. But I want to see if I'm even close to being on target with those thoughts before writing about them. I hate to be wrong.  No, really.

As for the other two, I have an idea (hope?) that monitoring will be done by checking for any PSA count, which seems like the easiest way to tell if all the cancer is gone.  Because, if there is any PSA count 3 months after the last Trelstar injection it would indicate the presence of some prostate cancer somewhere... and hence the PSA count.  But I don't know for sure if that's the case.  And I guess I just rambled on about an answer to number 1 & 2... without knowing for sure.  So much for consistency!

So, I'll wind down on this post and go have a glass of wine (one) and think about how easy I have it in comparison to some others who are gracefully and lovingly dealing with issues so far beyond this one.

Sleep ..or not...

I'm tired, after a week of work (and two weeks before that of essentially sleeping at will...which I knew at the time was too good to be true) I am really tired. I want to think I'm just being a wimp, or getting old, or something like that. I really don't ... and I mean don't - want to say it has a thing to do with having cancer, or having 50 (or so) little radioactive rice bits in me.

But what else is there? I sure haven't been doing anything physical to make me feel this way. And to go along with the tiredness I have a sense of sadness and longing... a phrase that gets dangerously close to some lines from Longfellow's "The Day is Done". Check it out... lovely poem... and it describes the feeling almost exactly.  Is this just me being maudlin, or is it somehow related to the hormones that are doing their version of a four-wheel drift through my body?  No way for me to tell.  I want to joke about it, but really, in my current mood, this is no joke, it's not funny and I wonder why I'm on this path, where it's taking me, and if I will ever regain the illusion that I have a bit of control.  Arrgh!

Prostate brachytherapy and bicycling - first experiences

Because of my inability to find useful information about bicycling after having brachytherapy (seed implants) I thought my first two experiences might be worthwhile reporting on.  At least maybe for any cyclists... and who knows, there might be one or two who'd just like to know.

So, I got clearance from both of my doctors first, and neither office asked me what kind of cycling I do, (which might be an indicator, but is perfectly understandable).  For the record, I mostly do road riding (as opposed to off-road or mountain biking), and I tend to like to ride as hard as I can.  At my age that statement means I can still ride fairly fast, but there are a lot of people out there who are a heckuvalot faster.  I'm not complaining. 

I had made plans to go out with some friends for a friendly (aka leisurely) ride on the 2nd, so I wanted to make sure I could even sit on the seat without something outrageous happening.  I didn't want to get out with a crowd in public and start screaming in pain or something.  Accordingly, I went out for a short ride - as quick as I could make it - a 10-mile flat loop from home on New Year's eve.