Occasionally we are lent to think of where we were and what we were doing when we consider outlooks for a new year.  For me, this is a bit of a paradox, perhaps less a time for reflection and more a time to forget.  I live with a disease that will likely kill me, but through diligence I attempt to prevent it from controlling me, from allowing it to become central in my thinking and life.  However, with each new year since my cancer diagnosis comes the whole process of deciding what, and if, any treatments or tests would be effected in response to a rising PSA.  In short, it seems that every year my PSA rises which in turn compels me to make some decision set before me by the doctors involved in my care.  This was typically “provoked” by a quarterly PSA taken the first Thursday in December.

This year I’m faced with a decision of a different sort.  Since I’ve undergone three treatment cycles, which have slowed progression, but not stopped the cancer, my options are diminishing.  So, rather than diligently ensuring my PSA was measured in December as usual, I chose to forgo the test.  In my view, perhaps interpreted as negative, I saw no need to have a disappointing number interfere with what would already be a challenging holiday season (see my “Christmas” blog).   So now I’m faced with the decision of whether it is time to talk to the guys (as I refer those doctors who follow me).

When deciding to measure my PSA there are several considerations.  First, and foremost, is whether there is any scientific value in knowing the number.  The other is that this time last year I was at 19.7 and rising rather rapidly – on target to double in 3-4 months.  The number triggered the path of investigating additional treatment options, principally whether a radiation/chemo combination could be effected.  The whole of the latter presents numerous decisions, my investigation into options and different treatment approaches, all of which ultimately ends in an evaluation of the circumstance and deciding on a course of action.  It is the latter which I hope to avoid, to keep the cancer compartmentalized and “out of mind”.

I’ve long held that while my cancer may ultimately win the war, I would endeavor to add as much as possible to the dearth of science on this disease.  The idea that while I may go away, I will leave a legacy of sorts in the science, that others may benefit from the path I traveled.  Since the spring 2009 treatments my number has been on the decline – 7.3 as of the September 2009.  While most speculate a continued reduction, the reality is not known and I may be reaching an inflection point – i.e., bottomed and starting back up.  The determination of whether I am heading up or remain depressed could be useful, if not to me, for those following me and who are trying new approaches.

The second consideration is of a more personal nature.  Since few if any real options are open to me – even if I’m rising, do I really care if what the number is right now?  I think this is more of an emotional thing, kind of like when I go in for treatments which make this whole thing very real, put it “in my face” so to speak.  As for options, I’ve not identified many, cyberknife if some localized nodes are identified, Lupron (androgen deprivation), immunocryotherapy proposed by the doctor at Johns Hopkins and, if FDA approval comes about soon, the new drug “Provenge from Dendreon.  The reality of all these is that unless the number is remarkably high, none will be invoked, so again, why get the number?

In assessing the approaches, the least attractive is Lupron.  This is not because of side effects or similar issues, but two other important reasons.  First, Lupron is currently a treatment standard and therefore does not fulfill my mission to contribute to the science.  Second, of all the doctors have told me, the one thing they say pretty definitively, is that once Lupron is the last treatment option and it stops working, I have about 18 months left.  While there is no set length of time stated for Lupron efficacy, it varies by case, the statistical norm is 2 years.  In my case, since I’ve already been on Lupron for 2 years during my first treatment cycle, the “norm” may be shorter.  Whatever the length may be for me, at this point I see Lupron as the last arrow in the quiver and should be held until all else has failed.

As for the cyberknife, a radiation procedure which targets very specific nodes, which, if I understand correctly, can be in a prior radiation field.  In some cases this hold some promise in that if sites are identified, they may be radiated and the disease held at bay for perhaps another year or two, without the need for other treatment protocols (e.g., Lupron).   This is another option “the boys” (another term for my doctors) are considering given there were some questionable sites identified prior to last year’s treatments which were untreated given their proximity to the prior fields.

As for the immunocryotherapy, I remain intrigued and tend to lean toward that approach.  The reality is I need to have multiple nodes to treat and it is quite the invasive procedure.  Additionally, it offers mixed, albeit promising results.  Most importantly, the procedure supports my goal of contributing to the science – something I  do not underestimate.

I continue to struggle with what to do, if anything, at this point.  The options seem clear, at least as they have been researched to this point, but in no case is there any indication of a sense of urgency.  I suppose an email to the boys is in order, just to get a measure of their ideas, maybe they harbor an unanticipated viewpoint.

The really strange thing I found with this installment is that I had started it a few days ago and left it to ponder a couple of things.  Then, this morning, something strange occurred.  One of my FaceBook friends, I’ll call her Fran, a former high school classmate who has MS posted she would be heading to the neurologist this morning, ” a bit scared”.  Apparently she will be undergoing a bank of tests which, from her post, she is not sure of the value.  I sometimes wonder if I underneath all of it I get scared, if all my logic and rationalization is simply a mask for that which is truly being processed.  Perhaps my avoidance of getting the number is more about avoiding the possibility of actually having to deal with this thing, this thing which for the most part I’ve been successful at compartmentalizing.  Truthfully I really don’t know, but I do know that when I go get treatments I can’t ignore my situation and the reality of it’s course is apparent.

Thinking of my Fran and her comment of being scared, I wonder about myself.  To this point and I guess through my entire life, I’ve never really felt scared about dying.  I do things that many consider quite risky, down right insane in the minds of some (I like to skydive), but at the same time my risks are very calculated.  For example, when I played hockey I was a goalie and used to challenge players to try and bend the bars in my mask (I wore a helmet with a wire cage on the face).  When I tell this to some they think it totally insane, especially when many of the players so challenged could shoot over 100 mph.  Few consider that I already knew, that given my stature any shots at my face would go over the net and in order to “bend my bars”, they would have to miss the net – counter-intuitive for shooters.  Anyhow, I guess you get the picture – I’m not afraid of risks and take them often.  That said though, I also recognize that until we are actually faced with something we really don’t know how we will react.  Until I first stepped out of the airplane, I really didn’t know if I would turn tail before going out.  I think the same holds for death, until it is very material, right there at my doorstep, I’ll never really know.  I emphasize with Fran though, while the fear may not be derived from the notion we will die, the idea of knowing when and how can be daunting, sobering and very scary.

So, back to the whole idea of the value of a number – should I or shouldn’t I?  Seems Hamlet was presented with a similar question, not sure either of us really had, or will have, the right answer.  I’ll let you know what and when I decide to take action.

As always, feel free to comment or you can email me at lifeabstractions@gmail.com

ciao

lifesabstractions

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