Day 20 – Post-prostate Pause

or "living lazy"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

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 !

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Day 19 – Post-prostate Progress

or "living limp"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
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 😉

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Day 18 – Prostate Precision

or "how close did you cut?"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
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…

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Day 17 – Prostate Profiling

or "what's 4 cm in inches"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

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…

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Day 16 – Prostate Post-Op II

or "I told you so!"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
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…

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Day 15 – Prostate Post-OP

or "redefining terms"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
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).

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Day 14 – Prostate Privation

or "the real deal"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
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

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Day 13 – Prostate Privation Prep2

or "un-Great Expectations"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

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

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Day 12 – Prostate Privation Prep

or "adios priapism"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

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

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Day 11 – Prostate Pragmatism

or "what's the rush?"  [expand title=”Show this Post” swaptitle=”Hide this Post” rel=”prostate-highlander” findme=”auto” trigclass=”noarrow prostate_text colomat-trigpos”]

 
prag·ma·tism – an 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………..

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