Well, and as promised with yesterday’s post, I’m writing again today.  This time about a recent learning which was something of a shock and if not, totally unexpected.  What was that you may ask, it was the death of a person whom I’ve known casually for about 7 years now.  I say casually because I only saw her and her family at gatherings this time of year.  What was so unexpected, she died of ovarian cancer about one month ago.

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

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