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.