This past week has been a bit more than interesting, provoking in some respect, encouraging in others, but different. It starts with my need to evaluate my status, to gain some level of understanding of how to proceed with respect to my disease.  Which, will not something on which I dwell, it is now necessary because on Thursday I get my quarterly checkup and, more importantly, my quarterly blood draw which will include a PSA test.  While I would normally dismiss the day as simply another day in the life of my cancer, this day requires a decision, a decision on whether to continue with the one therapy keeping my disease at bay, but which could, at any time, be overcome by the cancer, the outcome of which would put me on a timeline to my end.

When embarking on my defense to the latest onslaught of this cancer, we began with chemotherapy, which, while working remarkably well at the outset, my body rejected.  The rejection was profound and sudden, a severe allergic reaction which doomed the use of any of the chemo drugs currently approved for my disease.  What we are left with is hormone ablation, the suppression of testosterone production, the withdrawal of something on which the cancer thrives and, under the current state of the art, the last known arrow in the quiver.  The vast unknown here being how long the therapy will last before the cancer once again accelerates its growth, morphing in a way that will allow it to thrive even in the absence of testosterone.  Typically the approach will last two years, sometimes longer, sometime much shorter.  I had, as part of prior treatment protocols, undergone hormone ablation for two years, but had been off for three years, something never researched and therefore unknown territory for all involved.

The really interesting challenge here is that once the disease becomes ‘refractory’ (grows without testosterone), it is pretty well established that, again under the current state of the art, that the patient dies within eighteen months.  So, with the next checkup will be the decision of whether to stop the hormone ablation therapy with the idea that it will be months, possibly years before my PSA rises and the disease expresses itself as it had early last year.  The other unknown being whether in withdrawing from the therapy, the disease will have had sufficient time to begin its metamorphosis into that which can thrive in the absence of testosterone, and, whether the cancer will retain its need for testosterone, failing to morph during the withdrawal period.  The challenge is there is no real data to which I can refer, no known, or at least reasonably publicized cases where attempting this, upon which I can draw insights.  The alternative is to simply remain on the therapy with the hope it will continue to work, fooling cancer for considerably longer, that it may take years before becoming refractory.  Overall, what I face is really no different from going to Las Vegas and putting all my chips on seventeen black.

While the upcoming decision weighs heavily, consuming some thought as to what I will do when the PSA is revealed, I’ve been, in parallel, trying to formulate longer term plan.  Early last year I had decided I would sell my house and move somewhere; the somewhere being the great unknown. Originally logic drove me toward the Washington DC area, my son is there going to school, I have relatives close by and have been receiving care at Johns Hopkins.  Further thought suggested, in the longer term, moving to my original hometown, a place where I still have many friends and a reasonably large core of family serves me best.  Challenged for a bit, for a number of reasons, it became clearer to me that I would be best served to move closer to family.  I had been moving toward that goal, but then another variable was introduced this week, something I had not expected.

With my disease I am alert to any new therapies which may come to the fore, clinical trials I feel hold merit and into which I may fit.  This past week revealed one such thing.  Interestingly, it is a trial patterned, or at least based in, the same science, as something in which my Hopkins doctor is working.  It would seem, with my active immune system, unusual for someone whose been exposed to all that I’ve been, I would be an ideal subject.  However, as I do with all such things, I look for guidance from those closest to my care, my primary oncology specialist.  What transpired from here was totally unexpected and that which took me by surprise.  My Hopkins doctor faces challenges, as never before, in his quest to secure research funding.  More importantly, in light of this, and in the interest of keeping his research alive, he is considering leaving Hopkins, a significant reason for my considering a move.

WHile I had already, for the most part, decided to move further north, a substantive part of the rationale centered on my proximity to Hopkins and ability to maintain my relationship with the doctor who treats me.  HIs possibly move created something of a tidal wave within me because while I would be more proximal to relatives and not far from Hopkins, in making that move I resign my proximity to a doctor with whom I have the best working relationship of any I’ve worked with in the past.  I would also yield a state of the art facility where that doctor practices and more so, a facility ranked in the top ten for its cancer care.  The events rattled my paradigm  and leaving me unsure of how to proceed.  It has, in many ways, complicated the upcoming decision and possibly many more to come.

Happy reading, happy thoughts and happy trails.

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

ciao

Lifesabstractions

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