The past week has brought forth some mixed news.  First, and as I’ve already written, was the normalization following the catheter removal.  The second was more disturbing, my uncle reported his bladder cancer is much worse than originally thought.  The latter was a bit more shocking since he had originally said his was a less aggressive form which meant it could be a “livable” condition, not unlike the majority of prostate cancers.  I share several bonds with this uncle, he is my father’s brother, my godfather, we are Masonic brothers and now it seems we share an aggressive form of cancer – it’s sad.

His situation began about a year ago with his initial diagnosis.  As mentioned, he had originally interpreted his doctors prognosis as it being a “mild” form, if there is such a thing.  He underwent what seemed to be the “standard of care”, I don’t like that term, irritates me, with a “minor surgery followed by the infusion of a radioactive liquid.  This may not be totally accurate, but what he communicated to us (the family) at the time.  Things seemed to look good following that with all of us under the impression the disease was, at least for the time, in check.

Fast forward about 6 months, sometime late last fall, when he went for a checkup.  The tests revealed the disease was “back”, perhaps never really having left, and it was now presented to him with greater clarity – he learned his previous understanding to be incorrect and that which afflicted him was very aggressive.  So then, on to phase two of the treatments which consisted of more of what he had previously underwent.  The outcome was equally unsuccessful.

Phase three of his treatment is the point where I actually internalized the depth of matter.  In my situation I found solace and utility in seeking multiple views, from different institutions, with the goal of sifting through it all to convince myself the plan of attack was indeed the most efficacious.  In my travels to multiple centers I learned something about practitioners in this field.  I learned that doctors possess something like “group think”, meaning that those associated with a particular hospital or university seem to think alike.  In my uncle’s case, there is but one major center which specializes in cancer and its treatment.  In my case there are two major universities and I was seen by doctors at both institutions.  I also chose to see a doctor at Johns Hopkins, which has been ranked first for male urogenital cancer and related diseases for some 20+ years.  It was this exposure that underscored my group think thesis.

Back to my uncle and his situation.  Given my experience and thesis, I offered assistance in evaluating his options as well as to “connect him” with the doctor I know at Hopkins.  Initially he seemed open, but in the end, he declined saying he was already on “borrowed time” and therefore not willing to consider a trip to be evaluated at Hopkins.  I found this to be a bit disappointing, but I also respect his decision because in the end, he’s the one who has to live with the path he follows.  That path, at least as things currently seem to be, is to have his bladder removed with the hope the cancer is contained within.  I see this as a bit unfortunate, that in making this decision he will sacrifice considerable quality of life.  I also note that in my case, surgery wasn’t indicated because the cancer was very likely outside my prostate and if surgery was attempted and confirmed the suspicion, they would simply close me up.  I asked the doctor at Hopkins about my uncle’s bladder removal and he said they typically don’t do that if the cancer is outside the bladder – it is, in my interpretation, akin to my situation.  When I asked my uncle about this and he is of the view the inconvenience is inconsequential relative to the value of life.  I’m hopeful the trade off he makes affords him the cost benefit he seeks.

This whole incident, for lack of a better term, causes me to reflect back on the idea of death and dying; of dying with dignity and sustaining the highest quality of life to the end.  It also causes reflection on the whole idea of letting go, not only by the afflicted person, but also those in that persons circle.  In my case, I have my son, siblings, parents and extended family.  In my uncle’s case, he has many of the same, but remove the aunts and uncles while adding in grandchildren from his only daughter.  To offer an idea of those in our circle, we had 26 in attendance at the last biannual family reunion with another 4-5 who were unable to attend.

In my case, my biggest concern is my son and being there for him.  We’ve had the discussion of my prognosis and he is aware I will likely be gone before he finishes college.  I think he accepts that and, if it is something one can accept, we only discuss it occasionally.  I think that for the most part I’ve also accepted my fate, not to the point of giving up hope, but yielding to the probabilities if for nothing more than trying to plan for the end.  My uncle, now in his early 70’s resides in a different place.  He has little time to digest all that has come to him and I sometimes wonder if he really understands everything the doctors he sees communicate to him – he tends to be a bit dogmatic when it comes to doctors.  I wonder if he is making decisions based on “shock” and less on logic.  I also sense he harbors considerable fear about his probabilities.

When I was diagnosed my initial reaction was a sarcastic “wonderful” and actually made a joke of the situation.  At the time I was in the throes of a somewhat nasty, but settling, divorce and this was just “one more thing” to pile on to that which I was already dealing.  The doctor commented on my reaction saying that in his experience mine was not unusual and that he saw reactions ranging from mine to the very somber.  Interestingly, at least in my case, while the doctor said this was highly life threatening, I really only saw it as another challenge, something to attack and defeat.  I really had no concern about dying per se, it was really that i was more mad than anything else.  I was angry about the divorce and angry about now having to deal with the cancer.  I thought life a bit unfair in dealing these two blows to me at once.  But since then another thought has come to mind.

As most people recognize, men tend to dive into work rather than facing emotional events or dilemmas.  For me, I think my work transcended that which provided income and extended to the whole divorce.  I had spoken to my son and he said he wanted to stay in the house and continue school where he had been attending.  With this “edict” as my mission, my thoughts were somewhat diverted from the cancer, which was relegated to being handled as a scientific challenge.  The whole of other life events allowed me to remove myself from the reality of the cancer and keep emotions around it in check.  One might say that while my initial reaction to the disease was anger toward life piling things on me, I now see things as providence offering me an outlet to diffuse the emotion of the disease.  This paradigm also enabled me to look at the disease and options presented me in a very removed sort of way, I was able to apply my training in the scientific method to the problem and left emotion on the sideline.

For my uncle, and I suspect many others, life did not offer him a diversion, nor did it offer him training in the scientific method or a background in human physiology or cellular function.  For him, there is but the threat and the dependence on those “experts” to which he is exposed.  He also falls within the paradigm of his generation, a generation which affords doctors a sort of unquestioned respect, a view that what they say is indeed the only way and fact.  I noticed similar views by those I met when I went for chemotherapy infusions.  I remember on man who was about my age, perhaps a little younger, and who was challenged in describing the etiology of his disease.  I could also sense he harbored a fear of the disease and its challenges.  In comparing him and my uncle, I wonder if my lack of fear is more related to the depth of my understanding of what is happening to me.

There is the saying that “ignorance is bliss” and I think in some cases that is indeed true, but for me and my disease, I find it to be totally the opposite.  I’m beginning to sense that the same may hold for all afflicted with a life threatening disease, my uncle and the man in the infusion room.  I’m now forming the thesis that ignorance in these situations begets fear and fear can drive decisions.  More importantly, I question whether choices made in a state of fear are optimal.  In my case I never really developed fear, or at least perceived fear, of my disease or its outcomes.  This very fact has afforded me the ability to challenge those who have treated me and resulted in some very novel approaches to my care.  While my outlook certainly s not “rosy”, the latest check with my oncologist reaffirmed the probability I will die within 3 years, by all accounts I’m doing remarkably well and an additional 3 years will exceed the initially “guesstimates”.  The concern I harbor with my uncle resides with whether he is acting emotionally, that his response more parallels a person who is asking to perform under the duress of a gun being held to their head.  I wonder if he is challenging his caregivers or simply yielding to them.  I sense this may be the case because in his last email distribution to the family the subject line read – “My choice is No Choice”.

So what does this all mean, what is my point?  For me, I think those of us facing life threatening disease react within our comfort zone.   We fall back to that which we know and that which makes sense to us.  For me, sense is to challenge the status quo, for my uncle it’s to do what the doctors say.  I think in each paradigm we find our own comfort and with that comfort we find peace with our choices, a peace that allows us to accept whatever fate may hold for us.

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

Ciao

LifesAbstractions

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