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

© Life’s Abstractions, 2009-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.

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There are few with whom I’ve shared several things, several very personal things.  Two of those being that I have a biological sister and whom I had never met.  I’ll not get into the specifics here, but circumstance, but both were born in a separate time of my mother’s life, under different circumstances, under much different paradigms.  It was those circumstances, those paradigms which led to the decisions made, perhaps the paths taken with respect to each of these siblings.  For my brother number two, yet located, I was fairly young, perhaps not much into my teens, when my mother told me of him.  For my sister it was a much different circumstance, a much different paradigm that brought sister number two to light.  However learned, providence offered the privelage to converse with sister number 2 for over 4 hours yesterday.

The odyssey of sister number two began in 1965, a year of turmoil for my family and one which left a number of marks, memories, experiences, both good and not so good.  I had just started the fourth grade that year and sister number 2, as I’ve referred to her, was born in the summer of 1966.  We, my known siblings and I, knew of our mother’s pregnancy, hard to miss, but for the most part we were young and, in some ways, at least myself, were recovering from the turmoil.  We were, at least, I was, kind of excited at the prospect of another sibling, especially since I was ‘the baby’ of the family, which, as many of a similar ilk know, comes with certain ‘stigmas’.  For me, it was a chance to ’pass the torch’, to now become an ‘older’ sibling, the one who could know more, who could offer advice and who, as much as kids do, take some level of ‘command’.  When the time came, we, I, waited in anticipation for when our parents would return home with the addition to the family.  We were instead brought disappointment and told the ‘new addition’ died during child-birth.  I remember being sad, sad for a variety of reasons hard to articulate now.

Fast forward about 20 years, I was in my late twenties or early thirties, there came a revelation.  It was an interesting revelation and something which, in many ways touched me, perhaps created a hole of sorts, perhaps a curiosity.  The revelation, I learned the baby born the summer of 1966 did not die, but was, instead, put up for adoption, for reasons, at the time and even as an adult, I did not fully comprehend.  Yes, the ‘facts’ about the circumstance were laid out and clear, but in many ways, they did not add up for a number of reasons, reasons counterintuitive to me based on what I understood of my parents.  It was, in many ways, a paradox, the answer to which I could not derive.

Over the years I’ve often thought about sister number 2, wondered about who she was, what she was like and what it would have been like to have a second sister.  But conversations about her, particularly with my parents was taboo, something not discussed and  certainlynever mentioned.  Interestingly, this imposed silence around her also seemed to cast a veil upon conversations about her with my siblings.  I didn’t know if they knew and I didn’t know if they knew I knew, it was, in many ways, a catch 22.  I often thought about talking to my siblings about those adopted, but held back for a long time.  It then came, later in life, exactly when I am not sure, but after my divorce and diagnosis, that I asked my sister about the idea of looking up sister number two.  It was something of an interesting conversation because I always though she wanted a sister growing up.  Perhaps my read was wrong, but I sensed she felt more strongly about leaving ‘sleeping dogs lie’, to not open the can of worms, not to look.  I dropped the subject, but not the thought.

I believe, in past writing I’ve noted how unusual it is for me to have contracted this disease, particularly with this level of severity.  In researching things, one thing became abundantly apparent, my son was particularly susceptible to getting this, with the same severity and, to a lesser degree, so were my nephews.  It is also clear it is not a fun path to follow, certainly not convenient.  I had done, and remain committed to doing, my utmost to contribute to the science.  A science which, in comparison to other cancers is quite nascent, and which needs to develop a new paradigm, to break the existing ‘standard of care’ molds.  It made me think more often of sister number two and question whether I was, and am, remiss in not providing her with information of my disease.  I think, while I always harbored some strong desire to seek her out, my cancer was the last straw, the thing that pushed me over the edge.

Fast forward to last October.  I was talking to my brother, brother number 1, and in some way, I’m not sure how, the conversation turned to our ‘missing siblings’.  We began the conversation we never had in the past, those conversations taught to be taboo.  We shared a number of things, most importantly, I learned he knew of sister number two and that he also knew of brother number two.  We discussed a mutual desire to know them, neither able to articulate the exact why, other than to say we always ‘wondered’.

The conversation turned to the should we and if so, how do we, find our missing siblings.  We shared the relevant information we harbored, the seeds to discovery.  We decided I would begin the research, to converse with sister number one , revisit her feelings and to gain as much information as could be had.  We also agreed to proceed with our search, with or without sister number one, since our sense of mission was that strong.  My first step was to speak with sister number one and, somewhat surprisingly to me, while reticent, she was supportive.  The next step was to broach the subject with one of the people closest to the adoption, our father.

I called our father and began with our usual catching up on the news of the day, the weather and other such topics.  In short order I offered my knowledge of sister number two and how I learned of her.  I explained how we, my siblings and I, discussed the idea of trying to find our missing siblings.  We explored our memories, resurrecting the past, searching for clues which would assist us in opening the door.  Once having completed the exchange of information,my father said he may have something, for which he’d have to look, that would be helpful in finding sister number two.  We ended the call with his telling me he would get back to me when he knew something.  To my surprise, his return call came about five minutes later at which time he provided the names and address of the adoptive parents.

I began a search using that lead and within several hours I identified the person I believed to be sister number two.  I shared the discovery with my siblings and father and we crafted a strategy to approach her.  I would take the lead, using an alias email address and reach out to her under the guise of an interested party helping the family locate her.  The email, sent on November 17th 2011, remained unanswered until Friday, January 13, 2012 and it was encouraging.  I responded, answering the several questions she posed and ending by revealing that I was more than an interested party, I am, her biological brother.  I closed the email by offering her my telephone number with the expectation it would be at least a month until we heard from her, if at all.  Remarkably, it took one day and it was by a phone call which lasted over four hours.  We shared a numerous things, commonalities and just things about our lives.  I shared my cancer, my prognosis and probabilities, explaining I really didn’t know why I originally wanted to make contact, but that perhaps the disease prompted me to move forward, that it was, perhaps that which I beguile, that provided the last impetus to move forward.

We ended the conversation by acknowledging we would like to remain in contact, that we would like to continue our discoveries.  I offered the contact information for ‘our siblings’, but she instead offered hers, saying they are free to call her, that she would welcome their calls.  When explaining my gratitude for her responses, she acknowledged some reticence with responding, but concluded things happen for a reason, that this was, inexplicably, dropped in her ‘lap’ at a particularly opportune time.  She explained that whatever the power, God, a Supreme Being or simply providence, she felt my inquiries were something to which she should respond.  In the end, it leaves me with something of a feeling of finding that which was lost, a missing part.  In the end, I feel I must say, thank you to whatever power brought us together and, as odd as it may seem, thank you to my cancer.

Happy reading, happy thoughts and happy trails.

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

ciao

Lifesabstractions

© Life’s Abstractions, 2009-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.

In this thing called life we tend to cycle through phases, through different seasons, which, metaphorically speaking, align with those we see in nature.  The lines often grey, but typically we align childhood with spring, young adulthood as summer, fall as our midlife and winter our rise to being a ‘senior’.  But how does this paradigm fit with someone like me, someone like Marilyn, who, in the case of the latter never became a senior and in my case, will, statistically speaking, be gone before I reach 60?  Did Marilyn ever reach winter, will I? 

I think when it comes to seasons it is all relative and perhaps not so simplistic.  Think of the Mayfly and the giant tortoise, isn’t it all relative?  Perhaps in the end there really are no seasons, but rather cycles of learning similar to those biological functions inherent to our being, the flow of blood through our veins or the passing of ait through our lungs or of food through our digestive tract. Perhaps it is an amalgam of experiences, exposures to that which the world brings and our reactions thereto.  Or maybe, there are simply chapters in the book we call life, the length of which can vary between a short story and an epic novel.  I wonder if the death of a child is, perhaps, the short story, that of Marilyn a novel with mine yet undetermined.  In the end, the duration question seems most intertwined with the disease.  Do I plan for one more chapter, for several or for many?  Do I plan my life around dying in September, or continue upon a December trajectory?  Interesting questions when it is likely you carry your killer, but truly have no idea of when it will decide to perform its execution.

A number of people asked, and others continue to question, my thoughts on my future.  Most find it peculiar how I can do things like offer people a chance to participate in a pool which attempts to predict my PSA.  Some see me as a bit of an anomaly in that I rarely express any suggestion of a problem.  They laugh with me when I joke about things like taking substantial risks, risks which could afford my demise, by saying “What’s the worst that will happen, I’ll die?”.  Some, not most, find solace in my view that I live life as I would, without regard for the disease and under the premise that if I focus on the disease, in the end, it wins twice.  For those who understand this paradigm, who can accept that I’ve acknowledged little direct control over my ultimate outcome, know I will live as if there is no end and if life writes the last chapter tomorrow, I’m good.

Then there are those who see this knowledge, this idea of knowing I likely harbor my ultimate demise, as an opportunity to live like the song says, “like I was dying”.  They suggest I create my bucket list, that I execute on all the things I’ve ever wanted to do in life, to live, in some ways, with reckless abandon.  The interesting thing about this approach is, if taken, the disease once again wins.  If I had no idea of a disease lurking within me, if there were no doctors suggesting that based on the rates of progression and current ’state of the art’, I may live 2, perhaps 3 more years, would I live as these people suggest?  My sense is not, that I’d plan as if I’d reach December, if my calendar would continue turning the pages of the months, of the successive years.

So then, back to the original question, where do I see myself, in what season, if that is the paradigm, do I currently reside.  I guess in the end there is no one answer because I’d like to think I’ve not conformed to that paradigm.  My view is that in many ways I remain child-like, in others chronologically nearing the end.  I’d think, regardless of the disease, that I’m just alive, moving progressively through the day-to-day experiences presented me with an eye out for those things offered to learn.  In my view, there are no seasons in life, no cycles or chapters, there is just life and it is there for each to consume as fits their appetite.

Happy reading, happy thoughts and happy trails.

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

ciao

Lifesabstractions

© Life’s Abstractions, 2009-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.

Every year, for about 7 years now, a group of families with children affected with Autism or Aspergers, get together for the birthday of one boy who was born on New Years Day.  In time the birthday party turned into a potluck and as much a social event for the parents as a birthday celebration.  It consisted of a relatively small group, 4 families, bound by the disorder, but whose children, and by association, their parents, have become friends.  It is in this context that I met Marilyn, her husband Walter and their two boys.

I’ve found that in most situations involving my son and others afflicted with Aspergers or Autism, I’ve been challenged to relate to their parents.  While we share the commonality of an affected child, many tend to make it their life, something I avoid.  It is much like my cancer, which could, if I let it, take away my ‘life’ on its way to consume my physical being.  My view is if I let it do so, it wins twice, or perhaps better put, I lose twice.  I see my son’s disorder in the same light and the unique character of this group seemed to see things in the same light.  It is refreshing and something I looked forward to each year.

This year, unlike others, the what now has become known as the ‘potluck dinner’, came early because the host family would be travelling over the holiday.  As usual I received a call asking if the date was good which was then followed with a confirmation email.  What was different this year was the recognition that this year only Walter and the boys would attend since Marilyn had died of cancer.  My first reaction was that she didn’t even appear sick when I last saw her, that she seemed perfectly healthy.  My next reaction was to speculate what it was that consumed her.  My third was about how well they concealed her illness, how they kept it private.  Lastly, I reflected on my own mortality and this disease which endeavors to consume me.

At the party things went on as usual.  The boys ate together at one table, sharing experiences and thoughts about various subjects while the parents, in typical fashion, sat at a separate table, in a separate room, and talked about what parents talk about.  During dinner few comments included anything of Marilyn, other than Walter once telling their son his mother would be so proud of him.  It was after dinner, nearing the end of the evening, when Walter, in a somewhat separate conversation with another couple, began disclosing the journey he and Marilyn travelled.

Upon hearing the discussion I began to listen in, taking in much of what was said but saying nothing.  It was an interesting exchange as Walter described Marilyn’s last months, weeks and days.  How he, as her primary caregiver for quite some time, became exhausted with the task but endeavored to continue.  He went on to explain how, with Marilyn’s encouragement, they decided to accept the help of hospice and how she spent her last days in the hospice.  He then went on to describe his last words to her, how he told her that “her work was done here” and that “it was ok for her to leave”.  It was sad really, sad because it was wrought with the love of someone who felt a great loss, one who I might say, had lost that which Zeus most feared, his better half, his soul mate.

Many of the comments from the others, all of whom had joined in the conversation with me, turned to consoling Walter, to offering him solace in knowing that she knew he had done his best and that she knew how he cared for her.  Walter seemed to accept that which was being said, but continued upon the path of how he really tried, about the enormity of the task to which he had finally succumbed.  In many the conversation and comments reflected as much of a sadness for Walter as for the loss of Marilyn.  In the end, all acknowledged Walter’s sense that when he told Marilyn her work was done here on earth, that she let go, she gave up the fight and yielded to her calling.

In the ensuing silence I had asked Walter of what type of cancer Marilyn had died.  His response, white cell ovarian cancer.  I asked him when she was diagnosed and he said in February of this year, I then understood why no one suspected anytime earlier.  Marilyn had died in less than 9 months from her initial diagnosis.  Walter then went on to describe the various treatments they pursued, beginning with, as he phrased it, “naturally started with debulking”.  This comment aroused my curiosity for several reasons, but principally in my own journey debulking was discussed and dismissed.  In Walter’s eyes, debulking was the natural thing to do, get rid of as much of the cancer as possible, perhaps all of it, before trying anything else.  This, in general, is a common view because most deduce that if you remove the majority of the cancer, there is less to treat and possibly spread.  In my case we summarily dismissed it because it is also recognized that in many cases debulking delays other, more systemic therapies and can also contribute to spread.  It was something I decided to explore with Walter.

In most cases I’ve been rather open about my disease and condition and I believed the group was fully aware of my situation, I was wrong.  So in my posing of the question, which referenced my decision not to debulk, I turned th conversation away from Marilyn and to myself.  I went on to explain my condition, the severity thereof and then fielded questions about prostate cancer in general.  Not remarkably, one question was that they thought prostate cancer is one of the more ‘curable’ cancers.  This question summarizes why the NFL wears pink for Breast Cancer Awareness month and ignores prostate cancer.  It was however, in that context I began explaining the different types of prostate cancer, of the critical metrics and my views on its treatment.  It was an interesting conversation which seemed to enlighten all and which Walter seemed particularly interested I think on some level he could relate.  It was this conversation that ended the evening and which provoked a number of thoughts, and dilemmas, of my own.

Happy reading, happy thoughts and happy trails.

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

ciao

Lifesabstractions

© Life’s Abstractions, 2009-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.

The months of March and April brought on much to consider.  In a prior post I mentioned that with the rise in my PSA it was becoming more urgent to decide upon my next course of treatment.  Contributing to this urgency was, with the bone and CT scans, the discovery of additional nodes in the pelvic lymph glands, a small bone metastases in my spine and some suspicious areas in the plural sacks of my left lung.  With a bit of investigation, some thought and reflection on my resolve to contribute to the science, I concluded chemotherapy, without hormone ablation, was the best path.  I began that course with an initial response exceeding expectations.  My PSA had risen to 130, doubling every 2-3 months, but in response to the first treatment dropped to 116.  More remarkable was the test done at Hopkins where it was discovered the ratio of dead to live cells was much higher than would be presumed with a PSA as high as mine.  All were encouraged.

Enter the blood work showing a rising creatinine level, a sure sign of kidney issues.  As always I passed the lab results to Ron, my doctor at Hopkins.  His immediate response, you need a renogram to explore the reason for the rise.  On up to Hopkins I went and the results of the renogram suggested the cancer had infiltrated my ureters, causing them to constrict, which in turn reduced the flow from my kidneys.  Ron’s response was immediate and decisive, I needed stents placed in my ureters ASAP.  No argument here, given I could see the issues when looking at the test results with the technician who performed the test.  This was in May and one thing I learned very quickly is that stents are not fun and with them, Percacet is a person’s best friend.  Unfortunately, coinciding with stent insertion, I became allergic to the chemotherapy.

The next dilemma now presented itself.  The cancer was now growing rapidly, more so than the previous norm.  We attempted loading me up with antihistamines and steroids, but those failed as well.  So, with a PSA now having risen to 271, my only choice was to move to Lupron, the last arrow in the quiver, to try and arrest the spread.  It was clear that without it my days were, literally speaking, numbered.  This was in August and to everyone’s surprise, with the checkup 3 months following the first injection, my PSA had fallen to 0.6, yes, you are reading correctly, for all intensive purposes my PSA had fallen 270 points in 3 months.

INterestingly, other things have changed with the drop in PSA, the stents, which initially had to be changed in 2 months, were still functioning reasonably well in 3 months later.  When I did go in to get them changed it was nearly 4 months between changes.  Concurrently, prior to Lupron, Ron was unable to get his laser into the ureters to ‘clean them up a bit’, but now could and did so.  I must also concede that while the discomfort remains, it is not as intense as it had been, that is after the 2 weeks post insertion and prior to the 2 weeks pre-change.

So then, here we are, all caught up, more or less, on my health.  I will say there is a bit more, but it was really uneventful and so I did leave it out.  I will also say the whole of this summer’s experience, and recent news, provokes new thoughts, thoughts I will share in my next post, which I assure you I will post within the week.

Happy reading, happy thoughts and happy trails.

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

ciao

Lifesabstractions

© Life’s Abstractions, 2009-2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Life’s Abstractions with appropriate and specific direction to the original content.