Wednesday, 25 December 2013

A C-Word(s) Update (Cancer, Child, Christmas)

Wow, has it really been two years since I've written anything of importance on this blog?  (I don't think using a post as a placeholder to sell games counts as "important".)  Time can zip by when you're living life, I guess.

Anyway, it seemed like a good time to check in and give a status report on some of the bigger things in my life:


December 8, 2013 was the two-year anniversary of the removal of my prostate (and thus the cancer that existed inside it).  That date also brought to an end my scheduled participation (that is, periodic follow-up surveys) in the clinical study I participated in that allowed me to have the surgery and the resulting hospital stay for free.  (Yay for academic research!  Yay for socialism!)

I have had several PSA (prostate-specific antigen) tests done on my blood over the past two years.  They have all come back as 0.01 or 0.02; which is about as close to zero as one can get, since apparently no one gets a zero, even when there's no prostate around to create the PSA!  All of this effectively means I have NO CANCER!

(It's possible that a cancerous cell still exists and is very slowly replicating; but my understanding is that the probability of that is very small.  In any event, I will continue to have periodic PSA tests done for the rest of my life.)

So, I seem to have survived the disease; what about the cure?  In my earlier post (two years ago!), I wrote about the problematic effects of having one's prostate removed - incontinence and impotence (inability to get or hold an erection).  I'm pleased to report that neither of these are a problem for me now.  I'm certainly more aware and attentive to when I have to urinate; but I am able to live without the use of pads and lead a close-enough-to-normal existence with no problematic "accidents".  To maintain this, I need to do daily exercises of my pelvic floor muscles; and, again, I will be doing those for the rest of my life.  Fortunately, that only takes about 15 minutes each day.  (Hey, guys!  Even if you don't have your prostate removed, pelvic floor muscle exercises are good to do, as they can improve your sexual performance and satisfaction!)

The same is basically true with my erections, in that I'm able to live a close-enough-to-normal existence.  It takes a little more time/work than it used to in order to get there, but I'm able to do so and "perform" appropriately without the use of drugs (though those make the process a little easier).  It feels a little different - not as intense - and I kind of miss ejaculation upon orgasm (the operation blocks the path used for the emission of semen); but I accept that as a "cost" of the possibly-life-saving surgery.  It's good to be a "working" sexual human being.

I see my situation with these side effects of the surgery as being the same as that of many older men.  The surgery just brought me to this point 10 (or 20) years earlier than I possibly would have made it without the surgery.  Again, I see this as a "cost" of the procedure; but I also consider it a trade for perhaps 10 (or 20) more years of life.

Overall, I see my cancer story as "complete".  It was something that happened, steps were taken, and now I'm back to going forth in life as a slightly changed person.  I also consider myself a very lucky/fortunate individual to have reached this position with no seriously problematic "cost".  Many others are not so lucky.  (This could lead to a whole "Why me?" exploration, but I'll leave that philosophical mess for another time and another blog entry.)


On the two-year anniversary of my prostate surgery, my son, Zuperfliegen Baadasssss O'Brien (aka Zupe, aka James Steven Victor O'Brien) turned 32 months old (two years, 8 months).  When my distant friends get a chance to catch up with me, they invariably ask how he is doing.  Here is what I say:

It's pretty much the same as it has been for the past year (or two).  That is, he's developmentally delayed and he's still not walking or talking; but he continues to move forward and make progress - just much slower than other children his age.  He's pretty consistently walking on his knees these days, and he's more willing and able to stand up when motivated.  So we're pretty sure he's going to eventually walk.  It's just that his low muscle tone makes it hard for him to maintain the tension required to consistently stand and walk; so it's all about exercising and strengthening the necessary muscles.

He also seems to be making more sounds, although not words (that we would understand/recognize).  He is able to communicate his desires to us and he seems to understand many of the things that we say to him.  So we're hopeful that he will eventually talk; but we're not certain.  I think part of the issue is that speech requires use of a lot of mouth muscles; and, again, his low muscle tone makes that problematic.

But the really big issue/question, which also affects the above two areas, is what will his thinking become?  Again, we see him making connections and watching things and he seems to learn, but it's so much slower than the other children his age.  (Partly, reduced physical capability makes it harder to learn and express; so our observations are muddled.)  It seems likely that we won't really have any firm data on his abilities until he is five or six years old.  So, in the meantime, we deal with each new day and do our best for him and hope and worry.

Fortunately, the other part of Zupe's story that has remained the same is that he is a friendly, smiling, laughing, social, and aware child who is (generally) a delight to be around.  Which is good, because providing care and support for a young child - especially one which is developmentally delayed - is a more-than-full-time occupation!

Ann and I cannot help but worry about Zupe's future.  At the same time, that was kind of bringing me down, so I've focused on - with more or less success, depending on the day - just enjoying Zupe for what he is each day.  However, I have the huge benefit of not really interacting much with other children his age, and thus the differences are not highlighted for me.  I believe this process is more difficult for Ann, as she interacts with the children of her mothers' group, as well as seeing the children at daycare and elsewhere.  Also, Zupe has not entered into the social institutions (namely, school) where conformity to certain standards are a bigger deal.

So, as you can see, the general direction of Zuperfliegen's story stays pretty much the same.  However, the distances change.  Certainly, the road goes ever on.

I'll take a moment here and talk about me and fatherhood.  Overall, I like it all right, though it's a situation filled with ambivalence.  I am helped tremendously by the fact that Ann does the lioness' share of the childcare.  It's difficult for me to interact with other humans for a long time when they have such low cognitive pursuits.  (In that sense, Zupe's developmental delay adds to my difficulty, in that it extends this period where he is less able to do things for himself.)  But I really like watching this small human continue to develop into who he's going to be, and I'm committed to helping him in the ways that I can!


Since I'm writing this early Christmas morning - and since it starts with a "C" - I thought I'd write a little about where I stand with this holiday.

I liked it a lot when I was young - so, much of the first half of my life.  But, over the past 20+ years, things have become a bit more curmudgeon-y.  A lot of that comes from the required gift-giving.  When I was young, I felt I had the time to really think about gifts and it was easier to come up with something that was meaningful to the recipient - and, optimally, also to me and my relationship with the person.  But, as I got older, and my network of friends and family increased in both size and diffusion (both emotionally and geographically), and I became much busier dealing with the responsibilities of adulthood, and I - and my friends - became more economically able to buy the things we wanted, well, the whole gift-giving thing became a lot harder to do well.  And that meant it was often just a matter of getting something to meet the social obligation of giving a gift - which often turned the exchange into a weird sort of trade that was not always equitable - and that would encourage me to feel insincere, incompetent, or both.

I pretty much opted out of most gift-giving many years ago.  Fortunately, Ann still believes in the power of the custom and does most of the work for the gifts that "we" give.  (You're seeing the theme here, right?  Where would I be without Ann in my life?)  But I'm still not entirely comfortable with the situation and it's sometimes weird when I get gifts.  Fortunately, there all sorts of things I find weird or uncomfortable and I've got a boatload of ways to deal with them...

Having written all that, I should say that I participated in the gift exchange with Ann's family last night and it was kind of OK.  I could see it as a community bonding exercise where good thoughts/intentions are shared and promoted.  I'm hardly putting myself back in the fold of the social custom; but it's nice to know that my coping mechanisms can lead to a situation that's kind of pleasant.

Hmm, I feel like this section is a little unfocused.  Well, anyway, despite my difficulty with Christmas - both because of the gift-giving issues and also because I don't readily identify myself as a Christian - I do like the idea of the world thinking about and working toward peace, joy and a working community.  So I am sincere when I wish people a Merry/Happy/Joyous/Peaceful Christmas.  And let me just take a moment here to wish that for YOU, Dear Reader!

I'm more interested during this season in the New Year.  That's a holiday I can get behind.  On a simple level, I'm OCD enough to find it interesting when the odometer clicks another number.  But, from a higher perspective, I like thinking about endings and beginnings and analysing what happened in the past year and thinking about possibilities for the next.


OK, there's an update on where I am at this point in time.  I hope I have something worth writing about - and that is able to overcome my resistance to writing - before another two years has passed.  In the meantime, did you know that I'm selling some games...?

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