Technical Difficulties

I didn’t mean to go this long between posts.  Whene everything is up and runing, I hope to post at least three times a week, more if we receive a lot of ‘comments’.  But I am still struggling with the technical side of getting this up.  I actually started renting server time in November.  The blog would move (or not move) in fits and starts.  I struggled with one ftp (file transfer protocol) then another.  Error messages.. Then finally, two weeks ago, it all seem to come together.  I actually saw my blog on my computer screen.  Then I was able to change from the default design theme to the present red and black one – “Alibi”.  Now I am working on plug-ins and other design to make it easier for you to respond, comment, subscribe, etc.  And make it possible for me to track, edit, promote, and otherwise manage the various aspects of running a blog site.  But the over-riding goal of all this technical mastery is to begin building a strong community of persons whose lives have been transformed by cancer.

Yesterday I attended a volunteer training meeting of my local chapter of the Leukemia & Lymphoma Society.  Sitting and talking with other survivors of blood cancers put me back in touch with what this blog can be about.  People coming together after having drifted off in different directions, seeking a way to share, to contribute, to make a difference.  To create something positive out of having had and been cancer.

In the next post, hopefully in a couple of days, I want to begin to outline what the goals, objectives, and activities of Being Cancer might look like.  It will also be my first call to all of you out there – what would you like to see in an online community?  what is missing out there?  what is important and what is not?  There are tons of resources for cancer patients out there?  But where is the niche?  the need not being adequately met?  In the meantime, if anyone is reading this, feel free to leave a little bit of yourself.

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Transplant Birthday

Last August I celebrated twin birthdays.  I want to honor those twin birthdays with the birth of this blog.  On the 16th of August I celebrated four years since my bone marrow transplant – the start of a new life, a new beginning.  My own bone marrow had been chemically wiped out the week before.  Now the stem cells growing in my bone marrow, maturing to course through my body, could trace their origin to cells donated by my brother, Mark.  These new cells would grow to provide oxygen and nutrients to my tissues, would form clots when necessary to stop bleeding, and perhaps most importantly would now stand vigilant against possible incursions by bacteria, viruses, fungi and other invaders.  But more crucially, our hope was that this new line of cells – the Mark army – would recognize and attack any resurgence of my own original failed immune system, the remnants of which were still hiding in some dark corner sanctuary of my body, silently waiting, my broken and traitorous t-cell lymphocytes.

My second August birthday occurred on the 28th.  It was one that I thought I would never see.  To live to be 62 years old was not even something I could dream about for the past six years.  In that cold December in 2001 I had been given a prognosis of a mere 7.5 months! Even with the promise of a new treatment with the monoclonal antibody, alemtuzumab (Campath) – a drug that had only been released and approved by the FDA (Federal Drug Administration) in the June before my December diagnosis – even then I was only hoping that, with the best of luck, providence and good fortune, I might live to see 59 years old.  Sixty months was the longest that anyone had survived with this terrible disease and this promising treatment.

Yet here I am in 2009 – 86 months later!  I have been through a bit these past four years and then some – multiple infections and hospitalizations, long periods of listlessness and fatigue, problems with blood pressure, with skin maladies and blood counts that hovered forever at basement levels.  I permanently lost vision in my left eye after a shingles infection decimated my retina.  This has been my most dramatic loss and the one that continues to haunt my day-to-day.  But here, in 2009, I am still alive.  And I rejoice in that.

Despite my grim prognosis, I was able to take a long-planned trip with my wife, Tish, to Sweden, the nordic home of her ancestors.  I have seen my youngest son, Aaron, graduate and find a job that he is quite successful at.  I have witnessed the marriages of my son, Ben, to his wife Dorothy, and of my oldest son, Nathan, to his beloved Copellia.  Perhaps most wondrously of all I was around to treasure the births of my granddaughters, Sophia (3 years old) and Isabel (10 months).  Many of my days have been lovingly taken up in caring these two as they progress through childhood while their mother studies nursing and their father radiation technology.

So in the balance I have been blessed, we have been blessed.  In fact much has been written about cancer as a blessing, about how the lives of persons with cancer have been enriched by their experience, about how one can come to intimately realize the people and qualities that are the real, enduring centers to their existence.  All of this can be true.  And yet here I sit, seven miraculous years out, wondering.  I sit and reflect on how the dark hand of cancer still transforms my life.

I have been unable to return to the work of nursing that I loved and found so meaningful.  This work that brought my normally introverted and shy nature into direct communion with some of the most intimate episodes in the lives of strangers. During my life as a nurse I was imbedded with life’s despair and sufferings, joys and hopes.  I have said many times that I was perhaps best as a human being during quiet, beautiful painful moments with persons in my care.  Now that is gone.  Cancer has been the culprit.

So why start this blog?  Despite my blessed and rewarding relationship with my family, in my relative isolation I find myself slipping further and further from the broader community.  And cancer, in many ways, has been the culprit.  It occurred to me some months ago, probably around the time of my birthdays, how much cancer has transformed my life – in ways both good and bad.  In the first years following my diagnosis, and whenever I was in active treatment, cancer became my primary identity.  Upon waking the first thought of each day was that “I have cancer”.  I felt compelled to confess to people I just met, even clerks in stores, that “I have cancer.”  For they must they already see it in my face – the weakness, the worry, a blank and gaunt expression that reflected my inner self?

Now before my diagnosis I thought of myself as a husband, a father, a nurse.  But since the profundity of my cancer diagnosis all that has become somehow secondary to the thought “I have cancer”   I am cancer.  So “being cancer” became the central preoccupation of my life.  It has pervaded everything, it has affected nearly every facet of my life – mentally, physically, socially, emotionally, spiritually.  It is a constant struggle, a tug-of-war between hope and desolation.  And now nearly five years from any sign of active disease this old theme – being cancer -still haunts.  I suspect that for many persons with cancer, and perhaps even for those caring for persons with cancer, this theme of “being cancer” resonates loudly.

And so begins this new blog.

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