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or "opening remarks"  Show this Post

you won't find media sharing icons on this site – I don't want to be followed.  I don't want my face to be booked on dozens of sites belonging to who knows who… and I really don't want to be liked
I don't tweet…  I don't "get" it… maybe it's my age, but I really suspect it more to be a matter of intelligence (he says modestly) or at least common sense – not wanting to spend hour after hour of my precious time each day, following the ramblings of a multitude of fools who feel their every waking thought, feeling or bowel movement is somehow worth sharing with the universe!
and don't be jumping up and down with your hand in the air like some poor home-schooled pre-teen ready to shout "hypocrite – hypocrite".  I'm writing this for myself…  if you have anything and I do mean anything that's more important in your life to be occupied with at the moment – then please – go do it!  Don't waste your time reading my self-indulgent sludge (damn – I'm starting to sound like Chuck Lorre's Vanity cards – you know that blurb at the end of The Big Bang Theory that you need to be watching on a platform that you can pause to read the half-second display, where he… oh crap – now the Google bots will be cross-referencing my silliness with his name and my bloody ranking will start to rise – and we definitely DON'T want that).
Anyway, my intention is simply to document my own experiences with prostate cancer – rather than posting pictures of my moustache which is only there to cover my lip and has been since the day I was born… (the moustache, not the lip – I have no idea when the lip grew in – I've never seen it!).  I don't wish to disparage the concept of Movember (hell, I picked up this domain – by random chance – when the folks who originally had it – let it lapse for some strange reason and now have to piggyback on the .com site as a "ca." sub), but I do think the pomp and pageantry surrounding the "Mo" revolution has become the "cause célèbre" almost totally obliterating the original purpose to raise awareness of prostate cancer.
I just figured the site deserved something more meaningful than the "comical" home page I put up when I first registered it… considering the tens of thousands of hits the page takes every day in November each year!  And no… there will never be affiliate links of any kind on the site to try and take advantage of it's momentary popularity.
So – stay tuned…  no promises, but if I can find the time and make the effort and don't run out of material before the 30 days are up – I'll try to throw something up here each day this month (recognizing I'm starting 2 days behind… but, I'll make it up).
not sure yet whether I'll allow comments – but if I do, you can be sure they'll be moderated before being sanctioned, which unfortunately can't be said for my own posts  😉

or "wacky words"  Show this Post

before getting down to any meaningful sharing of my own experience with prostate cancer, we need to settle on some terminology – most, if not all of it related to cancer in general.
analogies are rarely perfect and in many cases, they're downright misleading or silly, BUT in this "game" everyone is entitled to their own opinions – so, I'll share mine – just as long as you understand that that doesn't make them any more valid than someone else's – although I certainly think they are!
to begin with – I detest the term "cancer survivor" and find the phrase "lost his/her battle with cancer" revolting as well as ludicrous.  In my ever so humble opinion – cancer is not a battle to lose or survive any more than any other disease… ever hear a diabetic using "war" analogies to describe their disease… how about folks with pneumonia or the flu or even the common cold (although people do die from all of them)?    
survivor?  really?   "surviving" is something that species do (or more often, something they don't do) and it's said to be something that the "fittest" do – but that's a load of crap… 19 yr. old kid, linebacker for his college football team, drug-free, teetotaler, muscles ripped to the max, ran 10K every other day – definitely meeting the criteria of the "fittest", crossing with the light on his way home from the library to meet his 22:00 curfew, hit and killed by a seriously obese, 72-year-old drunk driver with a liver the size of a basketball, blowing thru the intersection against the red.  Is that "survival of the fittest"??  or just as believable and more germane to our topic, the kid is diagnosed with stage IV testicular cancer, totally unnoticed and symptom free until it had metastasized to most of his organs including the liver and there is nothing to be done… Again is that "survival of the fittest".  Many cancers are very much equal-opportunistic in nature – they don't care about fitness, age, race, gender, world-view or anything else.  There are obvious exceptions, brought on by purposeful, accidental or unknown exposure to specific carcinogens, and gender-specific cancers as well as those that tend to be found in younger or older folk… but "fitness" as a factor – not so much!
We don't "survive" cancer or even worse "thrive" cancer – from the latest catch-phrase "to be a cancer thriver".  Oh please!  We LIVE WITH cancer and/or we DIE FROM cancer, but we don't survive it or thrive it or battle it or conquer it.  You can argue that your medical team and the tools at their disposal actually do "battle" your cancer and you might almost sell me on that analogy… I mean the surgeries attempt to excise/defeat the entire base camp, the radiation "kills" or at least "maims" every cell in its path and the chemo cocktails certainly could be categorized as true "killing machines" even if most of the damage is collateral – but… YOU are not doing the battling or waging the war, except in some very passive way – by allowing or giving your consent to the procedures and treatments being used by your doctors.  And don't even start mumbling about "positive attitudes" and all the metaphysical garbage being touted by hacks, quacks and everybody with a twisted view of the universe, because they somehow took it personally when someone close to them died after being treated by the mainstream medical profession… believe me (or not) you can't "treat", "beat" or "defeat" a physical disease with psychic mumbo-jumbo.  "And which of you by taking thought (or being anxious) can add a single hour to his span of life?" Matt. 6:27
And "thrive" – to borrow a valley girl phrase from the 80's – gag me with a spoon!  Really now… we don't thrive on cancer – just the opposite – it thrives on us!  If an individual with cancer is able to maintain a positive demeanour and seemingly be unaffected by their disease – it's not because of the cancer, but in spite of it and is almost always due to one or more external influences – their faith, their support system of family and friends, or even the effectiveness of their treatment regime (I'm sure I'd put out a much more positive vibe, if my treatment incorporated copious quantities of medical marijuana 😉
all this ranting to say – if and when I need to refer to this "journey" (another hackneyed term that I dislike), I'll use the simple concept of "living with" cancer and hopefully avoid the common analogies. If I misstep… I trust you'll all immediately call me on it!

or "what's in a name"  Show this Post

this may not be a popular post – but, then I have no desire to be "politically correct".  My intention is not to offend anyone – especially friends and family (not mine) that may by some bizarre chance read this, but…
why is it necessary to rename things from what's familiar, renowned, explanative and therefore most appropriate to someone's name that means nothing to 99.99% of the population and does nothing but cause confusion, annoyance and incredible expense in lost time, and conversion of tons and tons of preprinted documents, pamphlets, letterhead, and literally millions of online references?
it should be no surprise that the answer is always the same – MONEY!
I have nothing against philanthropy… and I'm all for individual charitable giving (to legitimate causes) and whether wittingly or not, I've been the recipient of the improvements to services accruing from such beneficence in a number of institutions… but, I've never come to terms with self-serving charity – which to me is not charity at all.   What comes to mind is   Mat 6:2-3  "So when you give to the poor, do not sound a trumpet before you, as the hypocrites do in the synagogues and in the streets, so that they may be honored by men. Truly I say to you, they have their reward in full.  But when you give to the poor, do not let your left hand know what your right hand is doing,".
Interpretation… if needed… charity done "publicly" is not charity – and if the reason or even just the result is having your name plastered all over the target of your donation then it's only to do just that… draw attention to yourself – publicly pat yourself on the back for being rich enough to "live large", but still donate enough to buy a legacy in the form of a building or an enterprise.  It's one thing to have a small plaque naming donors who wish to be engraved for posterity (not charity), but quite another to have an existing and globally recognized institution renamed for you.
And don't think the donor is the ONLY culprit in this… the institution itself plays a key role, whether by actively soliciting "a fistful of dollars" in return for the exposure or passively accepting that it's ok to sell your name for "a few dollars more".
it must be obvious by now – given the topic of this blog, and the top-level domain name it's being hosted on – that I'm referring to the "Toronto Bayview Regional Cancer Centre" and that's what I will always refer to it as, despite the name bought for it in 2007.   It's original name is completely appropriate – it's in Toronto – it's on Bayview Avenue – and it is the cancer centre for the surrounding Region!  Why call it by someone's name?  It means absolutely nothing to anyone – but the philanthropist and their immediate family…
I could carry on about the "Skydome" renamed 9 yrs ago for a communication conglomerate with the worst customer service in the business sector (and that's saying something when you consider some of the competition).  It will always be the "Skydome" to me – and to most Torontonians.  Or the O'Keefe Centre – yes, named for the financier/builder of it – which is totally appropriate – but then renamed twice since then for companies that made minor contributions that allowed some upgrades/refurbishing along the way.  However, these are not of concern to those of us who over the past 32 years have been patrons, patients, clients or staff of the one and always "Toronto Bayview Regional Cancer Centre".

or "is THAT really necessary?"   Show this Post

alright, enough ranting and airing of pet peeves… let's get down to the story…
It all began on a rainy day – an early April shower – my galoshes sticking in the mud as I trudged through the thick woods on my way to grandmother's place… Oh, oh… ok – that's a story for another time!
but, it was in early April – and it might have been raining, I don't remember – and I had what I thought was to be a normal appointment with my GP to refill some prescriptions or some such, but "out of the blue" I was asked when I last had a complete physical.  I couldn't remember and although I'd been seeing this doctor for about 10 years, I may not have had one in that entire time.  There were enough other visits where bits and pieces of my physical condition were examined and discussed, that we'd probably covered everything anyway during that time – well… almost everything.
So, I was scheduled for another slot in the very near future – one needs sufficient time apparently to do a "full" physical – and on the so-appointed day, at the requested time, I once again could be found sitting patiently (you do understand why the source word is the same – right?) staring at the waiting room walls, trying to ignore all the wailing infants and working hard at holding my breath so as not to inhale any of the virulent strains of the hantavirus being coughed into the air by my closest fellow "waiters" – totally oblivious to the fact that there were more life-changing things to worry about.
finally escaping the germ-pit, I was ushered into the largest of the many exam rooms – after having my weight and height checked and recorded.  btw, what possible interest could the height of a 49-year-old be to the medical community?  I certainly wasn't still growing – well, not up anyway… and I'm quite sure I hadn't started to shrink either.
anyway, my doctor arrived in short order and to quote Arlo Guthrie1 "they was inspecting, injecting every single part of me, and they was leaving no part untouched"... and again, even this was an understatement – as I was not prepared for the final "inspection" – for two very good reasons!  First of all, I have suffered from severe IBS ever since I was in my late teens – and unless I was in the O.R. under anesthetic and I had been through a complete and agonizing 24-hour purge, there was no way anyone was going THERE – and even then, only with a scope!  And more importantly – what I haven't mentioned – my GP was a woman!   And I know you're thinking – "but you must have had a hernia check (turn your head and cough)" – and I did, but even that was done very modestly (don't think I even had to remove my briefs).  But THIS was something altogether different – "stand, drop-em, bend-over and relax"… oh sure – the result of the first 3 was just plain embarrassing, but "relax" – that was never going to be.
however, what had to happen, happened… and it was very comforting to be able to quickly return to a fully-dressed, normal posture – until I heard the words "I didn't like the feel of that – I want you to go for a PSA blood test".  Up until then, I honestly don't think I even knew exactly what or where a "prostate" was or what part it played in the male condition… remember the age thing… we weren't introduced to the detailed inner workings of male and female anatomies in Grade 4, or Grade 8 or even Grade 13 (you see!  we still had a Grade 13 when I went to school – and sex education was something you were only exposed to hanging out in the smoking section behind the school – oh yeah – we were allowed to join our teachers for a smoke way back then, before anyone but the tobacco companies knew it wasn't good for you 😉
and so, it began…  I just didn't know what "it" was yet!
1 if you're too young to remember Alice's Restaurant, then there are probably going to be a lot of references you'll need to Google over the course of my ramblings this month.

or "what's an antigen?"   Show this Post

so, we pick up our story the next morning or maybe it was two days later  – off to the local lab for a PSA test…  I brought a cheat sheet with all the answers and was pretty sure I would ace the test – until they stuck the needle in my arm.
unlike today in Ontario – all PSA tests were still free then, but even now the test is covered if it's as a result of a suspicious DRE or a follow-up after treatment for formally diagnosed prostate cancer.  The casual "I wonder what my PSA level is today" sort of test can cost anywhere from $30-$50 depending on the lab – but only in 2 provinces (Ontario being one of them)… in all the rest any PSA testing is still covered under the provincial medicare programs.
another change – from then (more than 12 years ago) to now, is the speed to turn around lab results.  Today, I can expect the results to be faxed or emailed to my oncologist within 24-36 hours of having my blood drawn – sometimes even faster.  Back then… well, it took about 2 weeks until I got the call from my GP to let me know that my levels were "high" and she had already booked me an appointment with a urologist within the next couple of weeks.
When that call came, my anchor wasn't home at the time, being away for the day and not reachable.  And I guess it would be a good time to share the fact that that anchor – my dear wife – is an oncology nurse with more than 30 years of experience in the field covering every aspect of cancer nursing, from visiting to bedside, from corporate to self-employed, patient education to nursing education including advanced practice program development while employed by the most recognized cancer centres in the GTA as well as by numerous reps from big pharma – especially when self-employed.
So… you would think – with that sort of extremely educated, experienced, knowledgeable and caring support system right at home – that I'd be more than ready for anything like this – what was still only a possible cancer diagnosis – with nothing yet confirmed.  So you would think – and you'd be so very wrong.  
That call was quite literally like a kick in the groin – it took the wind right out of me.  I was a basket case!


or "is it or isn't it"   Show this Post

the general consensus has always been that waiting for a result/not knowing is the hardest thing to deal with… and although I may not agree totally – it is indeed a frustrating experience.  There's all the "what if"s that occupy your thoughts and they are never in my experience "what if everything is OK".  So, in many ways not knowing is very much like having received the "bad" news – except, there's always that bit of hope that maybe it won't be.
just let me say that I don't buy into Kübler-Ross's "five stages of grief" which seems to have become gospel for every psychological care worker since it was first espoused in 1969.  Of course her "theory" was based on "dying" – with input from terminally-ill patients… but it's scope has been erroneously expanded to include all sorts of grief from the loss of a loved-one, a job, a pair of ear-rings, the dissolution of a marriage or even the dropping of an ice-cream cone!  It's basically a steaming pile…  while some or all of those "things" may present themselves in folks going through a cancer diagnosis or even in those awaiting what they believe will be…  in actuality there may be dozens of "stages" of feeling over a period of time or simultaneously or even alternating back and forth – or maybe none of them at all.  Some folks just shut down, numbed by the thought of impending "doom" and don't go through any stages of grief – some, become deliriously happy at the prospect of becoming "one of the gang", because all their dearest friends have experienced cancer – except themselves – and they until now were just someone "who couldn't understand" what they'd all been through or were going thru – but now… aha… I've got it too!
my first reaction, alluded to at the end of my last post, was simply a mind-bending "fear"… and not based on what you might expect. I have no fear of death… dying – especially painfully – would be another story, but my real fear was – if this was what all the indicators to-date seemed to be pointing to, then was I going to be leaving my wife without a husband (she might see that as a plus) and 2 young boys without a father?   I think that's the one that really bothered me – and not only for their sakes, but as much for mine – the thought of missing seeing them growing up, finding a direction for their lives, meeting their life partners, starting families of their own… all of that without me!
and how does one deal with that?   5 stages of grief?   kick your cat (don't worry I don't have one)?  open a bottomless bottle of scotch?
…the answer tomorrow!

or "who's in control"   Show this Post

so… we left off with the question of how do I cope with all this – the fear, the frustration, the waiting for further testing
what was so desperately needed was peacepeace that regardless of the final diagnosis, all would be well… peace for me while I waited for that diagnosis… peace for my wife as we waited for the diagnosis…  
fortunately, the solution to that need was right at hand…
Rom 8:28  And we know that God causes all things to work together for good to those who love God…
that "all things" means just that… everything – whether I think of it as bad or good, pleasant or painful, gain or loss – "all things" – the questions being – Do I believe it?  Is it really true?  Am I someone who meets that criteria – it does have one – "to those who love God"?
well, I do… it is… I am…   yes folks, I'm one of those!  a dyed in the wool, born-again, cover-to-cover Bible-believing Christian – saved by God's grace and the incredible sacrifice of my Lord and Saviour on that cross some 2,000 years ago.  It had nothing to do with me – there was nothing that I could have done to have made myself lovable to the Creator of the universe.  I had come to that realization at an early age – confronted with my own complete depravity – and accepting the fact that it was only through Christ's suffering (in my place, for my sin) that I could have a personal relationship with God – a God who loved me and had a purpose for my life.  
One of my favorite passages is Ephesians 2 and I would highly recommend reading the whole chapter here, but I'll just pull a few of the verses directly into this post…
Ephesians 2
v1  And you were dead in your trespasses and sins,
v4  But God, being rich in mercy, because of His great love with which He loved us,
v5  even when we were dead in our transgressions, made us alive together with Christ (by grace you have been saved),
v8  For by grace you have been saved through faith; and that not of yourselves, it is the gift of God;
v9  not as a result of works, so that no one may boast.
v10  For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.
so… here's my true position (alive together with Christ, saved by grace, through faith) – and I can rest in that – but do I… did I?

or "peace cont'd."  Show this Post

then the questions of myself… you've held to your faith in so many lesser things – how about now – facing the big one!  Does it hold – is it sure – are you really experiencing the peace that should be yours – in everything?
I confess… the initial hours after that first call with my PSA result… I was not at peace… and without anyone else in the family home to share it with – I did what came naturally – I immediately reached out by email to a half-dozen or so folk,  asking for prayer… and being able to dig up that archived email from more than twelve and a half years ago, I see what I asked for – was not a negative diagnosis, or healing (if I it turned out to be cancer), but rather I asked them all to pray that I might have "peace" while waiting for whatever lay ahead.
It wasn't immediate and it wasn't without anxious moments, but in the coming days and weeks, the Lord graciously answered those prayers and even though the appointment for my biopsy ended up stretching out to an even month from my PSA result… overall, I spent that month at rest, with a quiet heart, and confidence that the Lord would be with me through it all… whatever it was going to be.
Ephesians           2:14   For He Himself is our peace,
2 Thessalonians 3:16   Now may the Lord of peace Himself continually grant you peace in every circumstance.


So I could be at peace and accepting of the promise in the verse from yesterday's post:
Romans              8:28  And we know that God causes all things to work together for good…
The ongoing challenge however is found in 1 Thessalonians 5:16-18
1Thessalonians 5:16  Rejoice always;
                            :17  pray without ceasing;
                            :18  in everything give thanks; for this is God's will for you in Christ Jesus.

really!  in everything?  there's where the rubber meets the road…  oh, I could and would give thanks, if the final results turned out to be a clean bill-of-health – but, what if that wasn't the case – how thankful would I be then?


or "is that gunpowder I smell?"  Show this Post


although it was a month between diagnostic tests… it appears, from searching thru my old email archives, that during that month I also had my first appointment with a urologist (I am completely at a loss as to what sort of incentive – other than money — would drive anyone into this field of medicine, but thankfully some choose it).
that appointment also involved a repeat DRE, which resulted in the exact same comment as my GP made… "I don't like the feel of that"!   and this naturally led to the confirmation of the already scheduled appointment for the biopsy.
I probably don't need to point out that technology and therefore procedures evolve very rapidly and that what was common practice more than 12 years ago is far different from what is normally done today.
Today, there are at least 3 possible ways of performing a prostate biopsy… transrectal, transurethral, or transperineal, the details of which you can easily Google for yourselves.  Whether all three were common 12 years ago, I don't know (you can probably Google that too), but I was only given one option – that being the transrectal –  which I was scheduled to have and the only one of the three that I am going to discuss.
Preparation involved some fasting, a purge and/or an enema to ensure things were "clean" and I assume that took place at home – as I don't remember any of that occurring at the urologist's office – where the biopsy was done.  The biopsy procedure as described in recent literature, can also take place in a variety of ways – in an O.R. under anesthetic or in a urologist's office lying on your side using local anesthetic in the areas the biopsies will be extracted.  I don't seem to be able to find a description of how mine went down – it would probably be considered barbaric by today's standards.
currently, it appears that all biopsy guns are spring loaded – some allow cocking with one hand, even just by pushing a button and many models are "disposable" which given the usage, kinda makes a lot of sense.  How one "cleans" the reusable types is a mystery, but I assume it involves long periods of autoclaving and other chemical baths (but hey… what's a bit of E coli between friends!).
Back then, I was told the instrument being used was powered by .22 shells – and although I can find no reference online as to the "historical" timeline of the technological changes to the biopsy gun – the comment wasn't made in jest and the sound, smell and use of the "gun" – no re-cocking (that I could hear) between rounds (as required by the spring loaded types) – would seem to indicate that was indeed the case.
So… my experience began much like a DRE – I was simply standing, bent over resting my torso on a raised exam bed.  There was NO preliminary local anesthetic applied either topically or by injection – simply the insertion of said "gun" which compared to the "digit" in DRE, felt like a tree trunk and in reality wasn't much smaller. 
I was given advance warning of the first biopsy taken – more to prepare me for the sound, I think… rather than the incredible jarring pain that accompanied it.  I was told the the succeeding ones would get easier as I got used to them.
I'm sorry, but whether powered by gunpowder or springs, I don't think anyone gets "used to" having an elephant's trunk shoved up their rectum and then having anywhere from six to twelve 18 gauge biopsy needles blasted thru the wall of their rectum into the prostate… the rectum has little in the way of nerve fibres, but the prostate is fraught with them and that's where the pain is felt (thus the reason most procedures today are done using anesthetic injected into both sides of the gland).
Rather than getting used to them, by the time the last one blasted off, I was just about ready to pass out.  I can understand why the "normal" way of doing this is lying down – because my knees were literally ready to fold up before the last "shot" echoed thru the room.  Fortunately, I had my wife to drive me home, while I curled up in a ball in the passenger seat.
now we could "hurry up and wait" for the biopsy results… expected in 2 weeks…

or " lackadaisical labs"  Show this Post

you've got to ask yourself one thing… why isn't speed a priority when it comes to the determination of the presence of cancer in biopsies of potentially afflicted individuals?  I mean there are literally lives on the line, not to mention the psychological stability of those waiting for the results.  
unlike the other tests… biopsy analysis and reporting isn't a process where false positives are common in fact large studies have shown the occurrence to be less than 0.5% (ie. less than 1 in 200) – so basically – if it says you got it – then you got it – and remember, we're not dealing with a single core sample, but anywhere from 6 to 12 and up, and that false positive becomes increasingly infinitesimal when multiple samples are showing the same thing.
so, this is the big one… the result you're waiting for… the one that determines your future – and they make you stew for 2 weeks???  
It always amazes me, that with particular cancers – my only personal experience being with breast (not my own ;-), they are able to make gross, but accurate determinations of the presence of cancer in frozen sections of tissue in a 10-20 minute window – DURING the operation – so the doctors can be sure they've got clean margins or that the tumour in question is indeed cancerous (I guess if previous biopsies weren't possible or practical). 
So, why leave the rest of us on needles and pins for 2 weeks, when you could potentially give the patient the news while they're still at the hospital or clinic recovering from the biopsy procedure itself?  If labs can send back results in 20 minutes to doctors in an O.R. that are using those results to determine if a mass even needs to be removed or not – or if further shaving of the margins is necessary – then certainly those results, whether considered "gross" or "rough" are definitely of an adequate confidence level that can be conveyed to patients simply waiting for the results to determine the course of their life.  
but… I waited the 2 weeks (or 12 days if you wish to get picky) and then had to meet again with the urologist…  I imagine today a text would do, or you could follow your urologist's tweets with a hashtag of #my_put_your_name_here's_biopsy_results!  But, ours was in person – and of course the news wasn't good – or I wouldn't have any purpose in recounting this story.  Mine was found in both sides of the prostate and the Gleason score (used to measure aggressiveness and differentiation) was 7 (not sure if that was a 4+3 or a 3+4 – you'll have to Google the definition to get the details) – which was enough to warrant immediate attention.
In my case – I was given the grand total of 24 hours to determine my course of action…   (cause for another rant, tomorrow)


or "what's the rush?"  Show this Post

prag·ma·tisman approach that assesses the truth of meaning of theories or beliefs in terms of the success of their practical application.
24 hours…
damn – I'm reading these emails I sent to all my friends and family with the update on the results of my biopsies, and I mention in every one of them, that we've got 24 hours to make a decision with respect to "surgery".
And for the life of me, given the incredible knowledge base I have standing next to me and her vast web of resources in the oncology community including some of the very top physicians in their fields – from urology, and surgical oncology to physics, radiology and chemotherapy – why in the world would I, would we, have ever, ever, ever accepted a 24 hour deadline to make such a life-altering decision?
I've asked my wife and she has no recollection of it – but it's there in all my notes… and the only possible reason that makes any sense at all, is given the date was in mid-June, I suspect that in order to fit into my urologist's pre-vacation surgery scheduling – there was some deadline – otherwise I'd have had to possibly wait until the fall… a difference of maybe 3 months?  That's all I can come up with… and have no idea if that's the truth or not – and haven't had any contact with the surgeon in over 12 years – so, I'm sure he wouldn't remember either.
whatever the reason – it is one of those things that in retrospect, should NEVER have played a part in our decision-making.  There may be specific situations with specific cancers where urgent care may be critical to a positive treatment outcome – but, knowing what is well documented with respect to Prostate Cancer… there is NO possible reason that I can even remotely discern that would justify rushing a decision – even if it meant postponing treatment 3 months or even 3 years!!
there have been a number of studies in different countries with some fairly sizable subject pools where, over a considerable number of years, there was literally no discernable difference in longevity regardless of treatment modality or no treatment AT ALL!   Of course those are averages and there could be major differences for specific individuals depending on age and risk level at time of diagnosis.
In my case, I think given 24 hours or 24 weeks, knowing only what we knew then, I would have chosen the same way that I did.  With so much greater advancement in treatment, wider-based knowledge of outcomes and side-effects and personal experience… 12 years later – I believe I may have done something totally different!
But… given the deadline, the choices, the moderate aggressiveness of the cancer and the fact that I was only 49 and had 2 young boys still to raise…
we went for………..


or "adios priapism"  Show this Post

and "hola surgery" or more precisely "radical prostatectomy" – well… it's not really all that precise – it's just redundant, because there's no such thing as a "non-radical" prostatectomy!  I mean, really… how could the removal of an organ that basically defines you – as a male – not be considered radical.   Additionally, 13 years ago they didn't have the niceties of RAP (robotic assisted radical prostatectomy) which is done laparoscopically, rather than ripping a 10 inch gash down from your navel – in a totally "open" procedure.
here's where we can get back to the story of the trip to grandma's house in the rain and mud… or something similar, because although the decision had to be made and was – within a 24-hour window – following a concrete diagnosis, it was going to be another 6 weeks before the actual surgery… and that's a great period of time to provide ruminating filler for a whole boatload of posts should I be so inclined – although I will try to be brief – maybe – because I'm regretfully beginning to hold some gleam of respect for those folks who manage to make time to ramble off a blog entry every single day – even if it is complete tripe!
so… things to do:
– prepare your place of employment for the inevitable absence for a period of 3-6 weeks depending on how well your recovery goes – and accept the sad fact that they will survive just fine without you
– make sure you've prepared yourself, your finances and your immediate family for the possibility of your permanent absence should things not go well at all!  most of us have no clue how really unprepared we are for our own demise… agreed it's not something we want to think about – and true once we are gone, we're not going to give a fig anyway, but while we are here and if we have immediate family we care about – we need to have things in place to ensure that at least the financial end of things are well taken care of – whether that's an up-to-date will, proper identification of beneficiaries of pensions, etc. and well-documented instructions as to access to anything like safety-deposit boxes, offshore accounts ;-), or anything similar.  
– just as important is prep for the case that, you're still around – but temporarily or permanently considered incompetent to make decisions regarding your care!  Here in Ontario, there are two designations/forms for Power of Attorney – one for Personal care (includes health-care, nutrition, shelter, clothing, safety) and one for Property (meaning all aspects of Finance except that required for Personal care).  These powers can obviously be given to the same person, but in many cases that may not be ideal  –  eg. you're currently unmarried, but have a daughter whose a doctor and a son who's a stock-broker – perversely, but for good reason… you may well want your daughter to handle your finances and have your son in charge of your health-care decisions (so make sure this is documented in advance of your surgery).   
– let your entire universe of contacts and their contacts and their contact's contacts to the nth iteration know of your impending procedure with the sole intent of asking for prayer – but guaranteeing the unexpected result of receiving hundreds of emails, most well-intentioned, offering support, encouragement, contrarian views of your decision and some of the most lengthy, detailed and extremely personal descriptions of surgeries, similar or not from everyone else who ever experienced one… wow – just reading them was exhausting – and if you weren't apprehensive about the whole thing before – well, now you certainly have good reason to be!
– donate your blood in advance for use in your own surgery (autologous transfusion) – I think I was scheduled to donate at least 2 pints/litres/bottles/whatever, but after the first donation I was so wasted, that I slept for almost 3 days straight (according to my email accounts – I certainly didn't recall that little fact).  So, I didn't give more than that first donation – and had to trust that I could count on the kindness of strangers to supply anything more that I needed.  Even though I'm not allowed to donate now that I'm "one of those"1, that experience made me acutely appreciative of all those folks who regularly donate blood just as a matter of course, as often as they are allowed to – may not be as headline-grabbing as pulling babies from burning buildings – but the end result is just the same – they really are giving the "gift of life" as the Red Cross calls it in their ads.
– finally, do a lot of what you may never be able to do again following your surgery blush
which brings us to the phrase "nerve-sparing"… a great topic for another day
1 that's "someone who has been diagnosed with any cancer" in Canada – some countries have different policies

or "un-Great Expectations"  Show this Post

you know how they have books like "What to Expect when you're Expecting" that top the best seller lists… where are the "what to expect when you're going for surgery" books?  Oh, sure – they give you a 1-page poorly photo-copied black and white list of a couple of do's and don'ts – like not eating for 700 hours before and don't arrive drunk or stoned on the day of your surgery – but they certainly don't cover much, and especially not the really important parts – like:
– if you want a clean, even or complete shave/waxing (down there!) – do it yourself, prior to surgery
– draw in permanent marker a straight dotted line in the exact middle of your body – so the surgeon has something to follow and your scar – as ugly as it might be – is at least symmetrically centred on your abdomen, instead of looking like something an infant scribbled in red crayon
– have your wife smuggle in at least a 3-day supply of those "special" brownies, because not only won't you want to touch the hospital food – but, you are definitely going to need the analgesic effect of THC post-op
– have someone who's been there before, define PAIN in the most explicit manner possible, so you're not "surprised" when you first wake up following the surgery – and therefore avoid saying something most inappropriate to the nurses who are going to be responsible for your care for the next 3-5 days.  You DO NOT want to piss them off that early in the game!!  You're going to need them on your side…
– make sure your surgery hasn't been scheduled to occur just prior to a long holiday weekend – avoid this at all costs
– expect the worst, so you can't possibly be disappointed

or "the real deal"  Show this Post

so the big day arrives… and to be honest I don't recall anything about it until I came to following the surgery!  I can only share what my wife wrote in summary of the day "as she experienced it" – her words in blue:
At 10 am the anaesthetist met with Mo and I as he was going into the operating room and described the procedure for epidural (injected into the spine) morphine for pain control. Instead of the expected 3 day infusion, he said he would be giving him a single injection just before surgery that would provide pain relief for 24 hours. Mo is also receiving other pain medications through his IV postoperatively and seems quite comfortable.
Now what had I ever done to this poor anaesthetist, that made him decide to only provide me with a single injection expected to last 24 hours instead of a constant infusion for 3 days?  See what I mean about the "brownies"!  The truth is that the very first thing I remember from that day was waking in the recovery room (or maybe it was my own room) in the most incredible amount of pain I had ever experienced – by a huge margin.  The first nurse to notice that I was awake, asked something really silly like "well, how are you"?  My only response – thru a mouth full of cotton balls, was – "it hurts"!  I have no clue what it actually sounded like to her, but that's what I was trying to say – and I'm sure I repeated it until it was understood.
That single injection – expected to give me 24 hour pain relief had obviously run out of juice prior to me even awaking from the surgery.  And yes, they had to give me additional meds via IV… starting with Toradol, which I apparently turned out to be very allergic to!  I didn't have an anaphylactic reaction, but I did feel violently nauseated and broke out in hives as soon as it began to be administered.  Fortunately, it was caught almost immediately and switched to morphine – which as much as I can recall, must have helped, as things did settle down after that.
The surgery itself went without complications. The surgeon felt that the cancer was confined to the prostate and did not see evidence of local spread. This however will need to be confirmed when the pathology report is complete. Another positive note – there was very little blood loss (only 400 cc and so Mo did not require a transfusion, although he still has his unit banked if his hemoglobin should be down tomorrow.
Again, I don't remember any of it, but this was information that was at least shared with my wife and she was able to pass along to those following her on twitter  (oops, wasn't developed until 4 years later) – uhhmmm post on her facebook page (sorry that wasn't around yet either) – send out to our family and friends email distribution lists.  And it was a good thing there were some caveats mentioned…
One of the other "little" things that I should have mentioned in my "prep" list yesterday… someone really needs to go into a very detailed discussion about what it's going to be like having a catheter as a companion for the next few weeks – AND even more importantly, but directly related – why you need to have a catheter following a radical prostatectomy!  This is a discussion that deserves it's very own post, somewhere not too far down the road.
but right now, ask Nurse Rachette to bump that morphine drip just a bit and…. ahhhhh…. that's the ticket…. back to sleep… while my pee drips down a 40 foot tube into a clear bag hanging at the side of my bed blush

or "redefining terms"  Show this Post

this is all, no doubt, well known to those of you who have travelled this way before, but being my first surgery, I found that a number of terms get totally redefined during a hospital stay like this.
First of all PAIN… well-covered in yesterday's post, this word takes on a whole new meaning – you may have "thought" you knew what it was, but you quickly discover that post-op pain following major surgery – especially involving your abdomen – redefines the scale – what you always considered a 10 was really only about a 3.
Another word that gets redefined is MODESTY. This has no place in a hospital setting… the nearest thing I could relate it to, was deciding which half of me was least embarrassing at any given time and trying to ensure that the other half stayed covered – rarely successfully. surprise  You would really have thought that over the past 200 years they could have improved on the design of a hospital "gown".
Finally, FOOD!  My goodness… they had to be using a totally different dictionary!  Bad enough that on day 1 you were allowed nothing to eat or drink – ice chips to run over your lips – BUT DONT SWALLOW!  and on day 2 – clear fluids only (of very questionable origin). Then on day 3 something called a 'full adult diet'… believe me, if you're not already "full", you need to be very "adult" to stomach the lovely juxtaposition of colours and textures that assault your senses when this is lovingly slapped in front of you.  And what is this overriding pre-occupation with apple juice? One would think that the endless sight of little plastic cups half-filled with amber liquid, in a hospital setting, would cause any sensible dietary planning committee to choose some alternative to include with every meal tray.
but moving on… the nurses and staff involved in my care were certainly all competent but over a period of 4 days with 3 shifts a day, you are exposed to a fair number of "care-givers" and as in any profession – there are those who excel and really appear to enjoy their jobs and those that are simply going thru the motions in order to make it to the next weekend. 
My surgeon did drop by twice a day to see how I was coming along and was kind enough to let me go home a day early (much to my wife's dismay).  Quite logically, he figured there was no reason to keep me the extra day other than to have my staples removed and since I'm married to a nurse… hey, she must be able to handle that… so, home I went on the Thursday (my surgery having been on the Monday).

or "I told you so!"  Show this Post

despite the discomfort, the "fun" of babysitting a kilometre of catheter tubing and having to give up all that delightful hospital cuisine – it was still a wonderful experience to be home again and resting in my own bed…
however, my wife felt quite justified the following day when I spiked a fever close to 40C (104F), in saying "see, you had to come home a day early!". Fortunately, she was able to contact the surgeon and get an antibiotic prescription which brought things under control rather quickly and I'm so thankful I was already home and not still in hospital as I'm sure they would have then kept me through the weekend, which – as I mentioned in one of my prep posts as something to avoid – was a long holiday weekend and I'm sure another 4 days of that food…
on Saturday my wife removed my staples and I promptly made a mess of what was already a less than lovely scar, by splitting a one-inch stretch with a big cough. Then it was my turn for "I told you so". All week the nurses – including the one who just removed the staples – had been nagging me to practise deep breathing and coughing in order to clear the lungs following anesthetic and all week I'd been resisting since every little cough caused unparalleled pain and threatened to split my gut… which is precisely what it did! Fortunately, my swimwear collection no longer includes a thong… so the general public will never see the result 😉
the next major milestone was to be about 10 days later when I was scheduled to see the urologist/surgeon again to get my catheter removed and to review the pathology report from the surgery.  And speaking of catheters, the next post will be an opportune time to tackle the subject of catheters – their care and feeding…


or "what's 4 cm in inches"  Show this Post

ok… time to get down to serious issues – like catheters 😉    If you've never had a first-hand experience, you may want to pay close attention (or not!).   If, as in my case, you have a catheter inserted as part of a surgical procedure, the chances are very good, that you wake up to find everything already "in place", so you've missed the thrill of having one inserted while conscious – which is truly something to be thankful for.
now, depending on the reason, you may have one of these to play with for a very brief period… or for something like prostate surgery you may have one as a pet for 2 weeks or more – in which case (as we'll discuss further, later) you'll grow very attached to it – quite literally!  
the premise is quite simple – even if you're toes start to curl up, just at the thought – a tube ranging from 3 to 10 mm in diameter is inserted thru the end of your penis up the urethra into your bladder so urine can drain, hopefully unimpeded out and into an initially sterile bag, so that it's colour and volume can be closely monitored – as there seems to be an overwhelming occupation with such things following various surgeries – especially a radical prostatectomy.
the end of the tube is held in place in the bladder by a small water filled balloon – inflated AFTER the tubing is inserted… as the tube is essentially composed of 2 separate passages – one used to inflate and deflate (BEFORE removal) the balloon with water and the other to drain urine…
while in hospital, the entire process of monitoring output and emptying or changing bags is handled by your nursing team… if you leave with one in place, all that fun becomes your responsibility.  And once you leave the hospital, you have the added logistical nightmare of exactly what to do with that 30 ft. of tubing and the 2 litre bag of urine while you travel around.  The most common and I assume the most aesthetically pleasing method, is to wear the bag attached to your lower leg – hopefully hidden under your pant leg (not the time to wear shorts – regardless of the season or outdoor temp).  Now this would have been a most appropriate solution back in the 70's when my bell-bottoms could have hidden a 4 litre catheter bag, 2 cats, a quart of Southern Comfort and my younger brother.  Even 13 years ago, it was possible to almost disguise a 2 litre bag under a pant leg.  But, today – I have no idea how this would work, given the trend to ultra skinny pants – let alone the cropped or rolled styles that go with…  you can't even fit your legs in there without shaving them first, so there's no way to hide 2 litres of urine in there – although given today's fashion sense, I suspect wearing the bag on the outside of the pant leg would fit right in – at least under the umbrella of "business casual" 😉   
and I guess that's enough about the "joy of catheterization" except for the removal, which will indeed be held until the next post.
however, I still want to explain WHY catheterization is so necessary in the case of radical prostatectomy surgery.  As mentioned earlier this month, my comprehension of the male anatomy prior to being diagnosed with prostate cancer, was sadly lacking in this particular area.  The other major system employed for emptying things, I was unfortunately very familiar with – given my chronic IBS and the frequent scopes and other investigative procedures that this had necessitated ever since I was in my teens.  
but, now I had come to learn not only the role the prostate plays, but exactly where it is situated (when present) and what the impact of having it removed would be (physically, emotionally and psychologically) – only the first being considered here and now.   
the prostate sits just between the base of the penis and the bladder, with the urethra running thru it… typically a healthy prostate being about the size of a walnut and 3-4 cm in length and consequently the prostatic urethra (that portion running thru the prostate gland) being similarly 3-4 cm (or 1.2 – 1.5 inches) in length.  Now when removing the prostate, that portion of the urethra is naturally removed along with it shortening the total length by that amount – and the remaining end being reconnected (sewn) to the bladder.
now, the male urethra is very elastic (it's fairly obvious, if you give yourself a minute to think!) and being able to stretch it to the bladder to make up for the lost inch and a half, is no problem.  However, because this "resection of the urethra" needs time to heal, it is considered necessary to have a catheter in place to protect this newly stitched joint.  so, now you know WHY we need a catheter following a radical prostatectomy.
the impact of that missing 1.5 inches of very elastic urethra is a story for another day…

or "how close did you cut?"  Show this Post

as stated, the reason for the follow-up visit with the urologist/surgeon was two-fold – to have my catheter removed and to learn how successful the surgery was in eradicating all trace of prostate cancer from my body!
I don't recall the order, but let's cover the "extraction" first. In order to remove the catheter, that water-filled balloon anchoring the tubing in place first had to be deflated, by allowing the water to flow back out to the external reservoir. Then came the matter of carefully and cautiously pulling the tubing that had been in place for the past 16 days out of my urethra – remembering that during this rather extended period and given that the urethra had been resected… the outer wall of the tubing had become very attached to the inner wall of the urethra and wasn't likely to "want" to be removed very easily.
Forget that nonsense about "carefully and cautiously"! What the urologist did was ask me to take a deep breath and that on the count of 3 he would pull it out. Instead he ripped the catheter from my body on the count of 1 – and how my entire urethra didn't come out with it, I will never understand. I do know it "felt" like having 20 feet of duct tape torn off the most sensitive parts of your anatomy – except from the inside out. Given the amount of grunge that was adhering to the outside of the tubing, that sure looked an awful lot like bits of flesh, I am also amazed that the result was not an incredible amount of bleeding and infection in the days that followed. Instead, other than a very minor amount of blood in my urine over the next 24 hours – everything was fine!
Note that this is not always the case, as catheterization in general has a high incidence of infection associated with it, especially over longer periods. Basically, more than 15% of all infections reported in hospitals are UTIs (urinary tract infections) and virtually all health-care related UTIs are as a result of catheterization. Advancements are always being made to try and reduce these numbers including innovations in product design – with things like antimicrobial silicone and silver-alloy coatings to minimize biofilm formation (that's the gunk that builds up/grows on the outside of the tubing) that can cause infections. Also greater care in the insertion procedures to ensure completely closed systems can eliminate sources of contamination.
However, enough about catheters – let's move on to the "results" of the surgery. Here's where the news was not so great. Without getting too technical… the surrounding lymph nodes were clear, there was no spread beyond the shell of the prostate itself, there was no spread to the seminal vesicles, but the tumour did extend right up to the wall of the bladder (ie. biopsy of the removed organ showed that the margin with the bladder was not clean – meaning that cancer cells remained in my system – at least in the bladder tissue.) This basically guaranteed that follow up treatment would be necessary down the road.
Additionally, the surgery was considered to be nerve-sparing, although one side was lost, being fully involved, the other nerve bundle was "supposedly" saved. This ability to save one or preferably both of the nerve bundles in radical prostate surgery is critical to the possibility of maintaining any hope of unassisted (ie. natural) erections, but in no way guarantees it – which once again, makes a great topic for another post…

or "living limp"  Show this Post

yeah… I really should have changed the title a few days back, since from here on we are really talking about life without a prostate – and "Post-prostate" just rolls off your tongue better than "prostateless" – and the latter gives the spell-checker fits whereas the former doesn't.
of course, the alternative of "living limp" is so very appropriate, but since I started using the 'P' alliteration in the titles, I better try to remain consistent…
so, having the catheter removed two weeks after surgery, might be seen as a milestone – but it certainly doesn't denote the end of surgical recovery – not by a long shot!  remember, you've got a 9-10 inch zipper down your middle that's still got a long way to go to fully heal… that thin skin scarred into an unrecognizable mess may be growing together fine, but don't let that fool you into thinking all the underlying layers of skin, fat and muscle are now all magically melded back together as if nothing ever happened.  The simple effort of trying to sit up in bed, should be enough to convince you that it's going to be weeks or months, before you're benching 200 lbs and doing 6 sets of 50 full crunches again – assuming of course that you could ever do that before your surgery.
some of my key recollections during recovery:
the delightful bouquet of colours of the bruising surrounding my surgical slice – it was so impressive, that I actually took a "selfie" with a 5 lb. digital camera (yes, we had them already back then – just not on our phones)… and no, I didn't post it anywhere!
one of my most memorable moments came around week 3 or 4 post-surgery, when I awoke one morning to find that overnight my left testicle had grown to the size of a grapefruit.  I was rather panicked and began shopping online for a wheelbarrow to cart it around in – until I was reassured by my surgeon that this was a rather "common" occurrence following prostate surgery??   Literally, it reminded me of those National Geographic's I'd seen when I was very young with pictures of children from India carrying their genitals around in wheeled carts.  Scary, but short-lived in my situation and not caused by worms as is the case in true elephantiasis.
and the most traumatic was a rather permanent state of things – alluded to at the end of my post a couple of days ago…  remember the missing 1.5 inches of that very elastic urethra?  Well, I don't know if this happens with everyone whose gone thru a radical prostatectomy, but in my case – the fact that the urethra had been shortened overall by about 1.5 inches, meant that everything "around" it, got shortened by about the same length… and since the surgery had all but guaranteed that "limp" was probably a permanent condition – I actually almost "lost" the little guy on a number of occasions, as that new "shortage" pulled almost all of him right back into my peritoneal cavity.  That may be a bit of an exaggeration, but I did begin shaving on a regular basis, just so I could always find him 😉


or "living lazy"  Show this Post

ok… hit the wall… and since there is a real and logical pause in the story here – I'll take advantage of it and post nothing at all !


or "you want me to What?"  Show this Post

sorry for bailing yesterday – but sometimes life just becomes a lot more "interesting" than you expected and the day gets away from you…
getting back to my story of life now "after" prostate surgery – one of the expected results that occurs to one degree or another and for varying lengths of time, although rarely permanent is incontinence.  In my case it was definitely an issue for about 4 weeks, and a rather cute recollection was the amusement of my 3 yr-old to see that daddy was wearing pull-ups just like him – well… not really like his… I didn't have a multitude of options for colours and patterns, like he did (I couldn't find Sponge Bob decorated pull-ups in my size) and for some reason, mine cost about 10 times as much on a per/unit basis.
and of course, the other much more permanent and frustrating result was impotence.  As discussed, my surgeon was only able to save one of the two nerve-bundles – but even when both are successfully saved – it's very rare that things ever "perform" as they did before and in most cases only some, if any level of "unassisted" erection is possible.   And when they use the word "unassisted" they mean without the use of drugs or implants… because let's be honest – a lot of us haven't experienced truly unassisted erections since we were… well, a hell of a lot younger than we are now.
the initial concerns regarding the situation are usually addressed with your urologist during the normal follow-up appointments… which begin with "give it some time" and then progress to prescribing a variety of forms and doses of the "little blue pill" and its relatives – until you and your doctor arrive at the sad but undeniable conclusion that nothing in the realm of oral medications is going to help.  At this point there are some rather unappetizing options discussed involving surgical implants which may give a permanent erection that can be bent up or down as needed (yikes) or those that can be "pumped up" (inflated) when needed from a reservoir also completely implanted.  I recognize there are thousands of men out there that have these surgeries, but I'm obviously not in the minority of men who become extremely squeamish just at the thought of elective surgery to that part of our anatomy – no matter how important we may think the result will be to ourselves and/or our partners.  Additionally these surgeries can be extremely risky and even if willing to take the risk, you want a surgeon with a ton of experience with these and those are not easy to find.  In my case – I never gave such a procedure a first thought… let alone a second.
so, what to do… give up…  not if you can get referred to a Sunnybrook clinic that specializes in such things – but the answer may be almost as terrifying as the thought of implant surgery.
addressing this strictly to those of my own gender… besides getting kicked there or having surgery there – what can you think of that would be the most distasteful medical procedure or practice to be performed "there"!   well, I know lots of folk who find the thought of this occurring anywhere on their bodies – in fact to the point of avoiding it at all costs – or actually fainting, if confronted with the reality of it occurring.  If you haven't guessed by now, it involves "needles" and I'm not referring to acupuncture!
there are drugs – actually a cocktail of a number of drugs that when injected into the base of the penis, can make things happen that no oral drugs could ever hope to do – and in my case they had some level of success.  It wasn't 100%, and it didn't work every time (I think needle placement can be key), but it was certainly enough to be functional.  however… getting used to "self-injecting" with a needle into the very object that one normally associates with pleasure – in order to "get it to work" is very unnerving at first and never really becomes trivial.
and for what?  yeah… you can still experience pleasure and even have an orgasm – but, don't forget – the prostate's gone and along with it all those connections it made and things it was there for in the first place – so, it's a lot like having the "dry heaves".  There's no ejaculate (which means no cleaning up ;-), but in some cases the result following orgasm is a very pronounced "burning" sensation, which doesn't last long – but can certainly take the edge off the earlier pleasure.  Of course, the whole point has always been and will always be to satisfy your partner – not yourself, so no matter the cost…   right…?  right…?


or "watch the bouncing ball"  Show this Post

the one constant following a diagnosis of prostate cancer – regardless of treatment – or no treatment at all… is the mandatory PSA tests on a regular basis – usually every 3 months.  this becomes a watch and wait scenario or "watchful waiting" as they like to refer to it… or the now more politically correct "active surveillance" or the over-the-top "expectant management", because they sound more like you're actually doing something – instead of sitting on your hands and simply keeping track of the quarterly PSA numbers.
usually, there's a target (could be an absolute number or a doubling rate) – that either your medical team has chosen or that you and your oncologist may have settled on together, and when your PSA hits or surpasses that target is when the next treatment regime is implemented – whether that be surgery (in the case of having done nothing previously), or radiation or something else.
in my situation, the first target following surgery was not something I was consulted on – but from correspondence from that period it appears to have been related to a doubling time.  All I know, is that it wasn't very high at all (in relative terms), but when you've had a radical prostatectomy that ideally was supposed to eradicate the disease – any reappearance of the prostate-specific antigen in your system – means they didn't get it all.
over the two years following my surgery, my quarterly PSA levels fluctuated between minimal levels of 0.07 and undetectable (which is what they call anything that's < 0.02).  It's a bit odd to see "something" and then 3 months later have it disappear again – but this happened a couple of times in that period.
however, in September 2004, just over 2 years since my surgery, I had a PSA result of 0.15 which (as infinitesimal as it is) was almost double my previous result of 0.08 – and my urologist had me have it retested – and when it came back the same, I was immediately scheduled for a consult with a radiation oncologist at the Toronto Bayview Regional Cancer Centre (yes, if you read the first couple of posts – this is what I will always call it).   
and so – the next phase of my "living with prostate cancer" began…

or "lest we forget"  Show this Post


just a brief aside…  in case you hadn't noticed – the poppy in the header block, slowly withered away over the past 11 days – which was pretty much keeping pace with the dwindling number of folk wearing them on their coat lapels during that time – till now, I don't think you'll find one again until next year.
as with Remembrance Day, the periodic cancer "months" tend to bring some fleeting attention to specific cancers, but unless you are personally touched by the disease, it tends to fade from our memories pretty quickly.
and isn't that OK?  should we be constantly occupied with loss and illness – whether as a result of wars (past and present) or various diseases including cancers?  I don't think so… as an extremely wise man once penned at the beginning of the 3rd chapter of Ecclesiastes:
There is an appointed time for everything-
… A time to give birth and a time to die;
… A time to weep and a time to laugh;
    a time to mourn and a time to dance.
… A time for war and a time for peace.
so, let's return to our very "forgettable" story – tomorrow…  for now occupy yourself with something awesome – like your spouse, your children or the multitude of online early Black Friday sales surprise

or "my first tattoo(s)"  Show this Post

so… we proceeded to phase II of treatment.   this was the first time my care was really transferred into the hands of oncology specialists (not counting my wife, of course), since until now all treatment and follow-up was handled by my urologist/surgeon.  This is _not_ the path of care that I would recommend to anyone without the kind of contacts and ready access to oncology consulting that I had because of my wife.
Don't ever START your "journey" (still hate the word in this context) without being referred to a dedicated cancer centre with experts in every possible treatment sector.   To begin with only a urology surgeon's input, is something like starting every DIY project with only a hammer.   As they say… if all you have is a hammer – everything looks like a nail… and similarly, to a surgeon – well…
that is not to denigrate my surgeon or associated care team, through my initial years, in any way – I went into this with my eyes wide open and an incredible knowledge base at my disposal, but… even so, knowing what I know now and given the much wider range of treatment options and even the variety of surgical options currently available – I would definitely want to be referred to my Regional Cancer Centre for a full investigation prior to making any decisions.
anyway, I had been put "on notice" in September when my PSA had doubled – and been referred to TBRCC.  This is where the inside connections come into play, as my wife was able to ensure I was seen by the radiation oncologist that she wanted me to see.  Not that any of them are "better" than the others (although obviously that will always be the case when measuring by some standard like experience, patient interaction, education, whatever…), but this was someone that she knew well and felt would be a good fit for me.
I had my initial consultation with him in early November – and a few weeks later I had my first appointment with the radiation team for measuring and marking… and by marking I mean "permanent marking" – yes indeed, my first (and second) and to-date – my only – tattoos.  They're not very exciting, being tiny blue dots, but due to the amount of work that goes into aligning them for the following 6-7 weeks of treatments – they don't want any chance of losing those markings, so they have to be permanent.  And like my surgical scar, they will remain unseen by all, but a handful of folk at the naturist resort in Curacao (I plan to visit when I'm 80), since they are high up on either hip.
now, I was scheduled for 33 "daily" radiation treatments, which you have to translate into "business" days – so, you can't count weekends or extra holidays over Christmas and New Year's, meaning what sounds like a month of treatments is really almost 2 elapsed months – in my case beginning on November 30th, 2004 and ending on January 18th , 2005.
at that point in time, my wife was not working at TBRCC, so the daily trips into the clinic were not co-ordinated in any way with her work schedule – or mine, for that matter… since I was fortunately on disability leave at the time – but were scheduled by the clinic, using what I believe was a dart board and a very spatially-disoriented booking clerk.  The amusing thing, is that they actually ask you, up front, what your preferred times are and then proceed to book you into anything but those times. smiley   However, using a combination of my wife's contacts and my magnetic personality, we were usually able to change the worst of the time-slots, that would otherwise have left me and my transportation team fighting rush-hour traffic out of Toronto.
next up –  9 ½  7 ½ weeks

or "7 ½ weeks of bad-ass beams"  Show this Post


preparing for this exercise was intense, as it involved the coordination of numerous volunteers over a period of almost 7 ½ weeks.  we needed folks to babysit when I was at appointments and my wife was working, folks to pick up after school and daycare, drivers for myself (due to unrelated health issues) and it was amazing the way friends and family – even some very distant family – came together to freely give of themselves and their time to help.
for most of this period, I had to be chauffeured because I had been suffering from some severe pain from pinched nerves in my neck and had to be on heavy doses of morphine – causing numerous side-effects, many of them not conducive to "safe driving" and despite 80 km round trip and the waits at the clinic, there were always volunteers willing to fill the role.   
in order to ensure complete accuracy, I was assigned to the same radiation machine for all appointments as the one which was used to initially measure and tattoo me.  this is a bit of a crap-shoot, because there were 6 machines and not all of them are created equal and they all had varying levels of maintenance issues throughout the period I was there… some were frequently down and many of them ran consistently late in their scheduling.  You get to follow the status of each on lovely big screens like an airport arrivals/departures display – showing if the machine was up or down and how late/early it was running, so the patients in the waiting area could judge exactly how much longer they had to gripe or knit or read or play with the many picture puzzles lying around the area.
My machine was without question the best-behaved of all of them – it was rarely running late and it was only down once for one whole day, and I was fortunately notified of it before leaving home.
The other consistency, was the radiation teams who were responsible for each machine – they stuck with the same one and although there were occasional swap-outs due to vacations (especially over the Christmas period), it was really helpful to see the same familiar faces each day.  These radiation therapists not only had the responsibility to operate and care for these machines, but the most challenging part of their job was dealing with their patients.  You should know that while some of us were symptom-free and many were walk-in and fully ambulatory, there are also very sick patients receiving radiation simply as palliation and these could be partially ambulatory or rolled over on gurneys from the main hospital thru the connecting tunnel.
Managing the needs of each of these types of patients, while maintaining a positive and encouraging demeanour and handling the intricacies of positioning and aligning each of these folk for their treatments takes some special people skills in addition to their education and training for the technology.   I was always impressed with the care shown to me, the quick call-ins (usually with minutes with my arriving) and the care of the machine, which only had that single breakdown and only ran late on 3 occasions that I remember.  So… once again I want to shout out a very warm and sincere THANK-YOU to my PLA3 Team (made up for the most part by the regulars Thomas, Christine, Debra, and Rosanna).   It may be unlikely that they would ever run across this post, but at least I took the opportunity – back then – following my last appointment – to let them know how much I appreciated not only all they did for me, but especially how they did it.  The PLA3 team rocks!

or "focus on this"  Show this Post

my first PSA result, 3 months following my radiation treatments was 0.02 on the border of being non-existent… they use < 0.02 to denote undetectable. Even my oncologist was surprised at the sudden drop, as usually it takes about 6 months to see significant decreases in the PSA levels.  So, a very positive result – in terms of my disease.
however, unfortunately, it wasn't the only result…
to explain a couple of the issues, you sort of need to understand how standard external beam radiation works.  I'm not going into detail – you can use Google for that – but the principle in its simplest terms, is to focus a photon beam or a series of photon beams to a point in your body that is the target – typically a tumour or an area suspected of being cancerous.  The problem is that this radiation has to pass through all the exterior mass of skin, fat, muscle (including organs) and bone to finally pinpoint on the target and exit out the other side.  True the unfocused portion of the radiation isn't as intense, but it's still radiation and the closer it comes to the target the more focused and more potent it is.  In other words a lot of other stuff is getting zapped in the process!
In my case, the beam(s) were targeting the prostate bed (area surrounding where the prostate used to be) and the line of site apparently started on my right buttock and went through from there.  At the point it entered it was about 7 cm (2.8 in) in diameter – quite clearly identified by the lovely sunburned circle on my cheek, which after a few months darkened to a roasted walnut colour and eventually after a few years disappeared.  While this "target" on my butt was a source of great amusement to my family it didn't (to the best of my knowledge) create any lasting damage.
however… also standing directly in the path of the radiation, and a lot closer to the target, was my sigmoid colon and rectum and "toasting" such a sensitive and mucosal part of the anatomy with a much more concentrated beam did not make for a comfortable result.  Ten years later it's still a raw patch easily detected during my biennial colonoscopies, and frequently causing bleeding, which should normally be very alarming – unless you know for sure what's causing it – which I do.
I'm sure there was considerable additional collateral damage, none of which I have as yet become aware – although it may exact a price in the future.  But, the overriding result being keeping my PSA readings at levels that didn't worry my oncologist again – until… tomorrow… cheeky


or "more www"  Show this Post

trying to be too cute, I guess…  but, the period from January, 2005 until March, 2012 was simply more worried watchful waiting, getting my PSA tested every 3 months with checkup appointments every 6 months.  
actually, there was very little "worrying" during this period, with only a couple of blips, my PSA stayed below 1.00 for almost seven years following my radiation. Once again, we were keying on doubling times – but also had a rough target of 3.00 as the limit, before looking at other treatment options.
In December 2011, my PSA jumped to 1.28 and then by March to 2.34 – this last jump being re-checked only 9 days later at which point it was 2.68 – making the doubling time only 3 months, with our original target being a doubling period of 6 months.  So, it was time to act, and the most reasonable and typical option at this point was anti-androgen therapy.
Anti-androgen or anti-testosterone therapy is just a nice way of saying "chemical castration".  The treatments simply involve an injection every 3 months, so the process itself is painless (unless you don't like needles – and I think we've already established that once you get comfortable putting needles directly into certain sensitive parts of the male anatomy – a shot in the arm or butt is nothing).  The price on the other hand… is NOT painless.   Can you believe that a single injection costs a whopping $1,300.   That equates to more than $5,000/yr. in order to let you experience being genderless.
And having been "actively retired" in 2011, I no longer had an insurance plan to cover prescriptions and I don't even know if most plans would cover this sort of thing anyway – they really don't like paying for big ticket pharmaceuticals and if there's any way to wiggle out of it – they will!  In Ontario, however, there is a plan for low to middle income/retired/senior folk, that is not well advertised, nor easily navigated – called the Trillium Drug Program.
You can find it here:  Trillium Drug Program  and the basic premise is, your deductible is about 4% of your entire household's combined NET income.  This deductible is broken into 4 quarters with the Trillium "year" beginning in August.  So just as an example – let's say your family's net income was $50,000 – your deductible (what you have to pay) would be $2000 – but divided into 4 – so, $500/quarter.  Therefore once you've paid $500 in drug expenses in that 3 month period (ie. Aug-Oct, Nov-Jan, Feb-Apr or May-Jul) then everything after that would be paid for by the Trillium Drug Program.  
There's also a little trick to this, as you should be able to quickly figure out… taking my case as an example.  Let's assume the above numbers apply (they don't, but let’s use them).  My very first injection cost $1,300 – so, assume I had to pay a $500 deductible then the remaining $800 would be covered by Trillium… and so on every 3 months.  BUT, let's say I arranged with my oncologist to get my first injection (ie. prescription filled and used) on August 1st. And in preparation for my 2nd injection 3 months later – I get the prescription filled on October 28th.  Since both those dates fall in the 3 month Trillium quarter, not only would $800 from my first prescription be covered, but ALL $1,300 of my 2nd one.  You can see how doing this in "pairings" twice a year would save you an additional $1000 in drug costs – just for your injections… not even counting all the other prescriptions your family may have filled in that quarter!
this is just a little tip, for those without drug coverage or insufficient drug coverage under other insurance plans.  Not meant to be in any way "scamming" the plan – just making intelligent use of the plan's provisions for "quarterly" deductions.  Obviously if this was changed to be an annual deduction, you could only "bunch up" prescription filling once instead of four times a year.  Of course this is only for folks resident in Ontario and making something less than a zillion dollars a year in net income!


or "singing soprano"  Show this Post

at first glance, it may not seem germane… but look it up – throw "synonym" and "pasteurization" into your favorite search engine and check it out!  You'll find words/phrases like "made sterile", "neutered", "desexualized", "spayed"… and they're all appropriate!
as stated yesterday, they do call it "chemical castration" for a reason.  what I don't understand, is why they would spend over $5000 a year to keep a convicted repeat child molester "sedated", when they could chop his balls off for a matter of pennies and it would be permanent!   I sure don't want my tax dollars going to pay for the "chemical" option when a permanent and so much cheaper option is available.
anyway, leaving the political debate for now, let's get back to the efficacy of this option for prostate cancer patients.  There are basically two streams of philosophy on this treatment and now that there are studies showing no difference in longevity – I see no reason why the one is even considered any longer.  The two options are – permanent and intermittent use of anti-androgen therapy.  In the first – once you start on it – you stay on it until it no longer controls your cancer (ie. your PSA starts to steadily rise again).  The second option – the one recommended by my oncologist and accepted by yours truly, involves only 3 injections, 3 months apart and then we stop until the PSA once again reaches a predetermined level – in my case 3.00
is it effective – damn right! – in every respect…
on the day of my 2nd injection (3 months after my first injection) – my PSA had already dropped from 3.08 to 0.06 – and 3 months later on the day of my 3rd injection it had hit the "undetectable" mark of < 0.02 – where it remained for at least another 6 months – even though that 3rd injection was the last of the series.   So… in terms of knocking the crap out of my prostate cancer, by reducing my testosterone levels to almost zero – these injections did the trick.
Unfortunately they also do a lot of other really nasty things.  And, while I personally, couldn't care at all that they do these things to the folk receiving the injections as a preventative measure for repeat child-abuse offences… it is  certainly too bad that they also have the same effect on those receiving them to control their prostate cancer.
I'll just mention a few of the "unimportant" ones – like fatigue (sometimes extreme), hair loss, tender and/or enlarged breasts, weight gain, hot flashes, bone thinning and loss of muscle mass, memory loss and failing ability to concentrate. Not all of these will necessarily effect everyone undergoing anti-androgen therapy to the same degree, but all are traceable side-effects of the loss of testosterone.
Of course, the one missing from the list above is the only really "important" one and that – as this post was titled – is complete and absolute neutering!  You are a eunuch… and anyone who tells you different isn't getting the testosterone wiping result from the injections that they should be.  I don't know how else to convey some semblance of how absolutely crippling this is without using a lame example, that won't do it any justice… but…
(I'm strictly speaking to straight, red-blooded males here)
Imagine an unending parade of women of whatever flavour that normally "floats your boat" passing your front window totally unfettered by any clothing whatsoever and imagine the only thoughts crossing your mind being that they are blocking traffic and trampling your garden as they march by.  That's it!  Nothing else!  Not even the slightest recognition that it SHOULD cause some other sort of reaction – I mean NO typically "male" response whatsoever.
That's how it is… beginning within a month or two of your first injection and not ending until anywhere from six to twelve months following your last injection.  They'll tell you, each injection is only effective for 3-4 months, but after just a series of three, I bet you'll be very fortunate to even begin to feel anything again until at least 6 months following your last shot.
Remember the injectable drug cocktail that could work magic following the radical prostatectomy – well… it didn't do ANYTHING while on the anti-androgen therapy.  You truly become a eunuch in every sense of the word!
My only advice – to those men whose wives aren't as understanding as mine – is buy some toys and learn to fake as great an interest in frequent intimacy as your wives always have surprise

or "lather, rinse, repeat"  Show this Post


so, since my first round of anti-androgen therapy (ending with my 3rd injection at the end of October, 2012), we've been back in that "watchful waiting" state, simply monitoring my PSA every 3 months with a view to start another round once I hit/exceed that magic number of 3.00
It's been more than 2 ½ years since I started that first round, and my PSA stayed non-existent or very low for the first year.  It first broke above 1.00 in February of this year (2014), and after staying fairly stable for the next 6 months, the test I had just two weeks ago, showed a jump from 1.12 to 2.78! 
I talked my oncologist into waiting for my next test result (which will be in early February, 2015), before we decide to start another round of hormone therapy – because I don't want to be on it over the holiday season this year.  However, given the jump, I can be almost positive that my next result in February will be well over the target of 3.00 – in fact given the last increase, it may be close to 6.00, which would be my highest ever! 
Therefore, I can look forward to starting another 12 to 15 months of "pasteurization" in February and then again another year or so after that, until we reach the point where testosterone deprivation no longer can keep the cancer in check. 
Where we go from there – I don't know…  there are new ideas and new treatment modalities constantly being trialed.  There may be some form of chemo in my future – although, that is something I dread and will try to avoid at all costs, as long as there are other alternatives.  Once the cancer metastasizes to the bone, which is common in prostate cancer, then there may be more extensively targeted radiation in my future – yea… some new tattoos!!
But for now… I'll try to limit my view to the next 2 months, without treatment and without lingering side-effects – and just enjoy the holiday season with my family which includes 3 birthdays, Christmas and New Years – and I'll try as best I can to ignore the 'merkin thanksgiving nonsense (except for the continuing Black Friday sales online) – what historically-challenged lunatic came up with holding Thanksgiving at the end of November?  Oh… Wikipedia seems to think that lunatic was old Abe… so, maybe I'll just withdraw that remark, so as not to offend all those in my family, living south of the border cheeky

or "witty wrap-up"  Show this Post

not sure I have anything witty to add here… in fact, I've found the pressure to produce something on a daily basis has definitely affected my normal writing style – although perhaps the subject matter also had something to do with it.
but returning to the original premise of simply expressing my own experiences "living with prostate cancer" – I think I've accomplished that to some degree.  I've obviously glossed over a lot of the more mundane and minute bits, and so there may be room for a sequel some day (I hear the groans…!). But, it has forced me to do a lot of digging into my own recollections and sources of accounts in order to compose it and so the end result is definitely a better understanding and much clearer documentation of my experience than I've ever had before.
and I'll reiterate that "for me" and I believe for most folk with various cancers or any chronic disease – that it is indeed just something we "live with".  We're not survivors – surviving tends to denote the sense of having passed through something and come out the other side victorious (maybe damaged, but still victorious).  I don't see that as applicable to any cancer… regardless of how long one may supposedly be "cancer free" according to some test or set of criteria – there's absolutely NO guarantee that not a single mutated cell with malicious intent still remains in your body – even if dormant for a time – even a long time!  So, you don't ever get to a place where you can say "I've beaten cancer".
you live with it
How you live with it, is another story.  You can believe you've beaten it and live in that dream world until it rears its ugly head once again, to destroy your self-satisfied head-space, but I don't think the trade-off is worth it – that "coming down to earth" again can be an extremely unpleasant experience that can completely overshadow the months or years spent in never-never land.
I think it's far better to come to terms with the fact that you "have cancer" and despite the state of the disease – active, under control, in remission, or whatever… you still strive to live as fully and as normally as you are able, given the circumstances.
How you do that… well… I can only share how I have been able to deal with things.  I have found that despite any set-backs, any nasty treatment side-effects, I can always know with absolute assurance, that the Lord has a plan for me.  I may not have chosen this path, and I certainly wouldn't wish it on anyone else – but, through it all – as I live with cancer, I can know that HE is walking with me, and as long as I continue to trust him completely for all that lies ahead, there's nothing to fear!
truths I can lean on:
Psalms     23:4   Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me;
Hebrews  13:5  …be content with such things as ye have: for He hath said, I will never leave thee, nor forsake thee.
and so many, many more…  and although it certainly wasn't my "raison d'être" for writing this account, if you want to have the same peace, you can…  start by reading the Gospel of John in the KJV or NASB translations (readily available online) and you can find the answer in the person of Jesus Christ and his love for you.  You can always reach out to me at the email address in the header, if you have any questions.
I may write some follow-up posts from time to time… but until then – if walking a similar path, remember to do your research, find a well-respected clinic, demand 2nd or even 3rd opinions, never be pressured into anything, and accept that your choices may be different than mine or those of everyone else you know – but they are your choices to make!
finally – and this one is critical – marry an oncology nurse smiley