Thursday, December 31, 2009

Finding info

Last post for 2009!  Well, it's been a wild year, from start to finish... especially the finish. That's not to say it's been bad...just a different ride than I could imagine.  And it continues to be that way.

I was thinking about riding my bike because I'm not feeling so sore from the seed implants, but neither of my doctors had said anything specific about the subject (and I probably forgot to ask).  So the other day I started doing some searches on the topics of brachytherapy and bicycling, or seed implants and bicycling, and was having some difficulty finding relevant information.  Then I came across a pdf document that said something to the effect that I should stay away from motorcycle riding and bicycle riding for 4 to 6 months after having seed implants.  Short story: that info is incorrect.

It would have made me nuts... nevermind the people who live with me...to wait that long.  So I called both of my doctors. The urologist asked if I was having any bleeding still going on (no) and if not, they thought I could go ride. The radiation oncologist's office said, essentially, listen to your body...if it hurts, don't do it... but they didn't have any problem with me trying.  There's a catch with this last one, of course...

Tuesday, December 29, 2009

Post Christmas post (for lack of a better title)

In the past week or so I've been to the urologist for a post procedure chat, had some changes in the side-effect picture, and today had my 2nd (of 4, I think) Trelstar injections.

The chat with my urologist went well.  I was prepared for his usual doctor-macabre sense of humor, but there was none of that. Instead, he said the procedure had gone very well, there was no evidence of any infection (they take a urine sample almost every time you walk through the door) ...which was good, and if I hadn't asked a couple of questions, that would have been the end of it.  

I had some bleeding going on (from hemorroids) and asked if the FloMax I'm taking might be causing that... and he said it was more likely due to the ultrasound probe being in there for over an hour.  I said I thought the bleeding was getting less frequent, and he said that if it kept going that direction it was nothing to worry about.

Sunday, December 20, 2009

Radioactive Man - 1 Week Down

Well, it's really a week plus a couple of days since I became Radioactive Man... and this will be a mercifully short post because there just isn't much to report.  OK...that's a lie.  There is a lot to report, but it's not all that interesting.

How am I doing on the 9th day since the implants?  Well, it's not bad, really. I'm doing most of the activities I was doing before (except bicycling... I haven't gotten back on the bike yet). I'm a bit fatigued, which has led to getting up later in the morning, and a tendency to feel nappy in the afternoon.  I noticed a bit of a melancholy mood the other day, which I immediately ascribed to the hormones ... but who knows, really?
And other than that, the frequency with which I visit the bathroom has increased considerably.  I've also noticed that some sitting postures are awkward, or uncomfortable, and that I'm better off standing, for the most part.

I suspect the sitting problems are due to the prostate getting swollen as a result of the seeds, or the procedure, or both and wonder when it will abate.  I also wonder, looking at the picture of all those little titanium bits in me, if riding a bicycle will ever be the same again.  I hope so, because I have a lot of places I still want to ride to!

That's it for now.  It's late... time to make another bathroom run and then to sleep!

Tuesday, December 15, 2009

Numbers

Reading over the list of effects after the brachytherapy (seed implants) I think the initial flurry of changes - more getting up at night, some pain associated with elimination, and some mild discomfort - are more likely due to the procedure and catheter than from the seeds.  Most of the discomfort is waning, or gone, which is fine with me.  I'm basically a wimp when it comes to pain.  However, according to some reports, it will come back.  Well, thank you, Voice of Doom.

That's kind of the way of this. Add to that the power of suggestion: a friend mentions that they thought of the seeds in me as "pins and needles" and half an hour later I could swear I feel little pin/needle pricks in a relevant area.  Gee... thanks!  So, anyone got one of those pain (placebo) pills?  I'll take it.

But that's not really what I wanted to talk about. 

Sunday, December 13, 2009

On my birthday...

It's my birthday and so it seems as if I should post something to mark the passing of another year. It was just over 4 months ago that the diagnosis of prostate cancer surfaced. I was reflecting on that last night, and thinking about the changes in my life over the past year.  Significant changes on several levels occurred and certainly this is one of the greatest of those. 

At the same time the change in direction seems so serious it also has hidden benefits. I'm not quite sure how to talk about this, mainly because doing so seems to border on trivializing the situation, or at least it seems filled with the potential for platitude madness.

And I don't want to offer either trivial reflections or platitudes. But as I mentioned in the last post, I begin to see that this cancer, which seems to be something completely different (and less serious) than the cancers some of my friends have, has provided some focus, a sense of direction and a sequence of next steps that I needed.  And that is good. But it seems like there is more...

Is it that the situation demanded so much research and learning? Is it because someone else is dictating a significant portion of my schedule? Or is it that there is something else, some meaning layered under the medical issues and procedures, some glimpse of something beyond words?  Or (more likely), is it that I'm trying to find meaning where there is only the event, and no hidden meaning? A kind of "it is what it is"... and nothing more?  Or maybe some combination of the above?

Ah, wandering thoughts on a cloudy day in December... and this will no doubt come up again... but it's enough for now.

Saturday, December 12, 2009

Side effects (round trois)

Warning: I intend to touch on effects that might not be discussed in polite company. If you're at all squeamish, I advise bailing on this one now. (Of course that will make almost anyone just have to continue!)

But first, the expected effects of the radioactive seeds is making itself known already. Last night I was up about twice as often to use the bathroom. And eliminating is hard, it hurts (what extent of that is due to having had a catheter is not clear, but it hurts), the stream is weak and stops several times before I think I'm done. All of this is what I was told will happen. So, I guess it's working, because it would be an incredibly silly thing if it didn't work. Especially at these prices. And I'm a bit tender in what I assume is the area the needles went in.

OK... more to the point, this treatment regimen I'm doing has some attractive things about it - given my pathology
  • It's less invasive than doing a full-blown radical prostatectomy.
  • Recent data indicates somewhat better survival rates 10 years out, and lower reoccurrence rates
But it carries some of the same potential side effects as surgery. Incontinence and impotence at two that are on the list, along with erectile dysfunction. 
But there's another thing that I haven't found discussed anywhere, which is not to say that it isn't out there.

Friday, December 11, 2009

The day after seed implants...

   

The Further Adventures of RadioActive Man


Return with us now to the time of yesterday when the lights were turned off
and I glowed in the dark... sorta


Man... it is hard to keep a straight face after a lead-in like that. But maybe I'm too close to the subject.   I'll try and relate the story, or what I can remember of it, because a great deal of it is just a blank.  Really.  Scary how blank it is, but that's a general anesthetic for ya. One minute you're chatting away, and the next... well... you're waking up somewhere else. So, for the next couple of weeks I'm told I can set off radiation detectors at the airport. But it won't last. Cesium, the radioactive part of the titanium seeds they implanted, has a 9.5 day half-life, so the amount of radiation is going to go down fairly soon.

We arrived at the hospital where the procedure was being done just before 10am and were directed to a bay in the surgical prep area and as soon as one of the nurses came over I was directed to undress and get in a hospital gown.  So.. I did that and got on the bed/gurney and the nurse came back and hooked me up to a warming device.  Turned out the gown had a kind of lining that they pumped warm air into.  Very nice.  I played with seeing how big I could make my chest and stuff... while Ginny cringed and (I'm making this up) said she was just a close friend. 

And then, surprise surprise surprise... they began asking me all the questions they'd asked the day before.  And talk about cumbersome user interfaces.  This one looked like it had been a direct port from some old mainframe panel-driven interface into a web-based form model. Anyway, we filled out the form and joked around with the nurse... and then we were visited by the OR nurse, and then the Anesthesiologist dropped by to chat for a few minutes.  Each of them confirmed that I knew my name and birthday (and that those matched who they thought they were going to work on).  They split and yet another nurse came to wheel me in to the OR. 

Wednesday, December 9, 2009

T'was the night before...

... brachytherapy... and all through the house...

Oh forget it.  I couldn't begin to keep that up.  :-)

In a flurry of activity last night I re-read some instructions from one of the doctor's offices and discovered that in the midst of appointment fu (aka, one of the doctors' offices moving appointments) I had missed the instruction to go to the surgical admitting guys at the hospital and get blood taken, an EKG done, and a chest x-ray... and I panicked.  Called that office this morning and they were all 'no big deal... just get them done today" so instead of being at work this afternoon I was over doing those things at the hospital.

Hospitals are amazing things in so many ways. So much paper!  So much repetitive data collected. But hey! They were having a sale! No kidding.  They'd worked out all the financial details with the insurance company already, and If I paid my co-pay early, I got almost a $400 discount!  I went for it. Duh!

Nifty fact:  During the chest x-ray I found out that I have lungs that won't fit on one slide of an x-ray.  The technician was all about it... and kept calling different people in and marveling over it.  He asked if i was a swimmer (I have been... but not for the last few years)... because he's evidently seen some correlation there.  You may wonder, as I have, what a chest x-ray has to do with prostate stuff... and I have no idea.

Anyway, the next big step is tomorrow: the radioactive seeds get implanted and I become Radioactive Man!  Woot!  I realize, looking back on the day, that I've gone through some unexplainable anger, then some feeling sorry for myself, a bit of being fearful about the procedure and my reaction to it (the last one being a typical pre-surgery thing for me) and then (finally) back to where I started, which is that this is just another step along the way.

Most of all I am really thankful for family and friends. The support and love is incredible.

Monday, December 7, 2009

Post pre-op indications and experience

Brief warning... some of this is me being silly.  And it may get somewhat graphic... but it's hard to predict at the outset where I'm going with these things..

Late last week I did the doctor dance in preparation for the seed implants.  I saw my urologist and my radiation oncologist in one mondo doctor fun day full of information, probing, probing questions, and scans.  It even yielded a new and different CT scan methodology!  I keep finding new procedural things to laugh about.  Or at least things that make me do my best impression of my German Shepherd cocking her head with that "wtf?" look (actually, my German Shepherd is more polite).

Summary version for the ones who want to skip all the wordz:
  • The hormone treatment has done what they wanted it to.
  • The prostate volume is perfect.
  • We're a "go" for the seed implants (on Dec. 10th)
Moving right along, I went to my urologist's office to get the volume of my prostate measured (an ultrasound deal that was fairly quick... but again with the dimmed lighting in the exam room, which still seems funny to me).  Then a brief consult with the doctor, who said that Betsy (not her real name) reported the volume was 21 cc's.  According to him that was perfect.  So, there's a trivia fact for you... and maybe you know a bar where knowing that could get you a free beer.  Have one for me!  :-)

I asked why that was such a great volume.  Well, he said, too small and the seed placement gets difficult, and too large and (weird simile coming up) we get into what he likes to call the 'imploding star' problem.  (Imagine me giving him a blank look here.)  "You know," he said, "the star goes red giant and then collapses into a white dwarf... so a prostate that's too big... gets the seeds implanted but then shrinks and some things don't work as well... "  I nodded my head to shake the metaphor loose.  It was beginning to hurt.

Wednesday, December 2, 2009

Preparing for the next big step

Late post... no big deal really, just thinking about tomorrow, which is the prep phase before they turn me into Radioactive Man.  Because of the scheduling shifts that my urologist had to do, I get ALL of the prep steps on the same day.  Oh la!

So... we start with another ultrasound bit at the urologist, which is the same as the beginning of the biopsy procedure. This means another round with the wonderful anal probe, or as I named it last time, the Alien Probe (AP). Then a consult with the urologist. About the time I get done with that I need to head over to the radiation oncologist's office, where they'll do a CT scan to check placement of things and (I think) decide on what pattern of seeds to implant.  Of course I am projecting all of this and tomorrow will tell how close my projections are.  Oooh... I can hardly wait to find out how close I am.  Or was.  Whatever.

Am I worried about tomorrow? Not really. But the seed implant procedure still has me a bit stressed. I'm hoping to learn enough tomorrow to help ease that somewhat.  That procedure is a week away.

Tuesday, December 1, 2009

Wading through the information everglades

Key question posed by my radiation oncologist: "What is your biggest frustration?"  Answer: "Finding information specific to my situation and correlating it."

This post, is an attempt to provide a map for anyone with the same frustration.  I'm not sure it will work as a list... we'll see. I'll put most of these on the extended page because this might get long.

Monday, November 30, 2009

Musings, appointments, and ....

An email from a relative today made me think again about the complexity of the problem of this cancer (and I expect this is true of many kinds of cancer... this is just the one I have to pay attention to right now).  And I'm not satisfied with how accessible my story is to people who might be able to use the information. So, I'm thinking about how that might be done within the confines of this blog. If anyone following this has suggestions, please email me - neale.barret@gmail.com.

But back to where I started... which is on the complexity of correlating the data to help new patients make a decision.  I think it's an amazing thing to say, as one of my doctors did, that deciding on a course of direction is like buying a car: you want a red one or a blue one?  He meant that as far as he was concerned, the data supporting surgery was about the same as the data supporting some of the other approaches.  At least that's what I think he meant.

But is that the issue, really?  I don't think so. 

Tuesday, November 24, 2009

Side effects (round deux)

Hot flashes or hot flushes?

Well, to tell the truth, I don't really care (but for some reason "flush" seems more appropriate and in-line with the feeling... but one web site uses both...the flash comes first, and then the flush.  Seems like there's a bad pun in there somewhere.  Nevermind that, the point is that  I'm having them more often.  I'm not particularly thrilled with the development, but I haven't talked to my doctor about them yet, and really, I don't want to get into taking yet another pill.  But these are interrupting my sleep all the time now, so... something more to mull over.

The headaches along with the bicalutamide pill seem to have gone.  I'm no longer taking an extra strength Tylenol along with that in the evenings.

I have added a calcium chew to the mix.  It's candy, really... it tastes like caramel.  Why did I add it?  Because the lack of testosterone can cause bone loss.

Gad... this is an incredibly boring post!  Fortunately, it's short!

Sunday, November 15, 2009

Corporate concerns

This isn't specifically about prostate cancer, but it's related... or at least it seems to be.  And lest anyone mis-read this post, let me say right up front, this is not a complaint about anyone. It's just how I felt.

There was a concern expressed about how I was dealing with this whole experience, and what effects it might be having on my performance at work.  And so I was encouraged to work with my doctors and fill out a "medical treatment report" form... which I thought was a kind of corporate intervention.  After some research, though, I am glad I work for the company I do, because there are structures in place to help protect people from the considerable pressure of the workplace while they are going through some other form of pressure (in my case, this cancer treatment fun). So, I got over the hurt pride, and am working on getting the form sent in.  We'll see if it helps or not.

But it made me think... what if I hadn't been working for this company? What if instead of a caring discussion about what was best for me, I worked for a place where they had just come to me and just said, "hey... things aren't working out so we have to let you go"? I have worked for places where that would have happened.  Thankfully it wasn't the case here. But there's more than that...

Monday, November 2, 2009

Antagonists and Agonists.. or "I coulda been a contendah!"

OK... this is silly, I'll say it right up front.  There.

I've been mucking about reading about hormones, agonists, antagonists, and trying to make some sense of what it is I signed up for (willingly, I should emphasize... I just didn't appreciate the complexity of the interactions going on here).  And I was casting about for a visual image for an agonist, because I felt like I was leaving the poor agonist out of the picture.  So ...brace yourself.  It's Marlon Brando in "On the Waterfront" asserting that he coulda been a contendah.

Where did that come from?  Good question! The Greek background of the word "agonist", which is this
"The word "agonist" comes from the Late Latin agnista, contender, from the Greek agnists, contestant, from agn, contest. An agonist is a chemical contestant or contender."

OK... that wasn't as funny as I thought.  Interesting words, these... and a bit confusing as well.  I mean, an antagonist is the bad guy in a story, right? And he or she plays against the protagonist.  Except not here.  It's another example of medical (terminology) humor. HA!  It is to laugh!  Only it would help for the medical terminology to be somewhat less opaque to the patient side of the equation.

Sunday, November 1, 2009

Side effects. The horror!

The posted side effects possible for the drugs I'm taking are a scream. They cover just about every possible problem someone might have while taking the drug. For example, diarreah and constipation. How does that happen?  Well, let's move on.

Almost as soon as I started taking the bicalutamide I had horrible headaches.  But because I have a lot of headaches on my own, it was hard to discern if it was me, or the drug. I finally decided it was the drug because the headaches were in the same place (felt like they were in my eye muscles, so it hurt to move my eyes) all the time, the same intensity, and the same general feel. Then, I found out that extra strength Tylenol cut them... which was another clue that they weren't mine: Tylenol doesn't normally come close to relieving my regular headaches.

Wednesday, October 28, 2009

A plan of attack

So... we're getting close to coming up to date... finally!

I returned from my bike trip on September 20th with my mind made up.  I called my radiation oncologist the morning of the 21st and he had a cancellation that afternoon, so I nabbed it.  I wanted to see what he had to say about Dr. Stone's comments, and also wanted to set things in motion.

It turned out that my RO had been trained by Dr. Stone on the seed implantation methods, so that was good. We made a small change in approach that seemed good to me (we didn't go for a biopsy of the seminal vesicles because my doctor planned to place some seeds in those areas as well).

The plan of attack I decided to go with is three-pronged:
  • Hormone therapy
  • Radioactive seed implants (in the prostate and seminal vesicles)
  • External beam radiation therapy

Monday, October 26, 2009

Step away from that analysis... oh sure.

So... where was I now?  I was in a fog, to tell the truth. And at the same time I had more information than ever.  My pathology numbers looked like this:
  • PSA = 13.7 ("normal" range is 0-4)
  • Clinical stage = T2b (meaning at least half the prostate is involved)
  • Biopsy results = 7 out of 12 samples showed significant cancer
  • Gleason score = 7 (at least 2 samples were 4+3, the rest were 3+4)
  • No PSA rate indicated (due to lack of data points)
  • Bone scan and CT scan were both negative
I went off for a week of bicycling around the Willamette Valley in Oregon, a wonderful Pinot Noir region.  But as I said, I took my laptop to be able to continue some research in the evenings.

Friday, October 23, 2009

The second opinion

We (my sister Ellin, Ginny, and I) went to see the radiation oncologist on September 9th.  And after a very thorough discussion and examination we all went into his office to talk.  And he was much more specific about where I was right then, clinically, and he provided a boatload of information and data.

But his first question to me was this: "What is your biggest frustration right now?"  Amazing question, right?  At least I thought so.  My response...
"There's too much general information on the web and not enough specific to my case. I can't correlate all of the pieces clearly enough to make a decision."  And he understood.  And he began to provide real data.  But first, he listed what he called my pathology.  Here it is:

Monday, October 19, 2009

Frustration... and initial leanings on treatment options

At first, I was so new to the whole prostate cancer issue that I soaked up almost all the information I could find.  And I thought I might be missing some critical information, but wasn't quite sure.

But I used all the web sites I could find.  And there are a lot of websites.  And a lot of opinions.  And a lot of treatment options.  I began getting frustrated with almost all of them, because while I could find out about surgical techniques, for example, I couldn't find a lot of data to help choose surgery over radiation.  I hope that makes sense.  Neither could I find information to help choose radiation over surgery. Or seed implants over the other two. Or even if choosing one meant being locked out of the other.

The Diagnosis and more tests...

August 6th, 2009: My urologist called me at work to tell me that the biopsy showed "fairly aggressive" cancer in a significant number of samples taken (7 of 12). He set up a time that afternoon for me to come in to discuss the next steps.  At that point, I learned some new words, "Gleason score" being one.  I recall being numb... and somehow not surprised, but I don't know why I felt unsurprised. The doctor said we'd need to run a couple of other scans before going any further, and we didn't need to take any more steps until we did those - a CT scan of the pelvic area, and a full-body bone scan.  Once we had the results of those, we'd set up a consult appointment and talk about next steps.

On the way out I talked to someone who helped get the scan appointments set up.  We got a slot the following day for the CT scan (amazing!) and on August 15th for the bone scan.

The wonderful prostate biopsy experience

The biopsy procedure happened on August 4th, and the diagnosis of cancer came back on August 6th.
This post was my attempt at some humor about the whole procedure, and I wrote it about 2 weeks after the procedure.  Warning... this is a long post.  Most of it (but not all) is true... so, keep that in mind.
__________________________________________________

Last week I had to go in to get a biopsy done on a part of the male anatomy we don't tend to discuss in public.  No, not that part. The prostate gland. Anyway, it was an interesting experience from all sorts of directions.  Let me see if I can describe it...

Thursday, October 15, 2009

The first indications...

I'm a total waste when it comes to doctors and doing check-ups and all the preventative maintenance things I'm supposed to do. And I had some weird idea that because my father hadn't been diagnosed with prostate cancer until relatively late in his life, I somehow was working with the same time line.

WRONG!

So, what got me on the path of prostate cancer? My shoulder. 


An Introduction: The Prostate Chronicles

I intend to chronicle my experiences and thoughts as a prostate cancer patient... from discovery to where I am now, and throughout the course of treatment I chose to follow.

Some of this will be lighthearted... because that's one of the ways I deal with hard information. Please forgive me if they offend. I don't mean any harm to anyone. Cancer, any kind of cancer, may not be a thing to joke about. But some things that surround it are funny, or at least they seem easier for me to handle if I can laugh at them one way or another.  Some humor, after all, comes from pain.

For example, several of the medical procedures have some bizarre aspects to them that make sense and have a purpose to the medical professional, I'm sure, but to the patient they might seem, well, funny. Or at least odd, which ended up making me laugh a bit.

Other aspects are incredibly serious or frustrating, or both, and I'll try to come up with a method of identifying the humorous ones from the serious stuff. My hope is that this will be useful to someone else, besides just being a random ramble on the web, adding to the noise. And hopefully it won't be the proverbial tale told by an idiot. <grin>

So... with that introduction, let's begin...