"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.