The site

Light falls, rocks loom, we seek shelter and companions under the light

Sailing alone ... light falls, rocks loom ... we seek shelter and companionship under the light

My Philosophy

I am over nine years out from my diagnosis of a disease (t-cell prolymphocytic leukemia or T-PLL) which has a median survival of 7.5 months.  I am over six years out from any sign of active disease and over six years from an allogeneic peripheral blood stem cell transplant.  I still experience fatigue, am still on prednisone, and remain blind in my left eye due to a herpes zoster (shingles) infection.

So my intention in setting up this site may be different than others with cancer still in the midst of their battle.  I recognized that, despite our best intentions, we come to identify very intimately with out cancer.  As I explained it in my very first post “Transplant Birthday

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.

So my intention then for Being Cancer Network was to create a community of people whose lives have been transformed by cancer.  The focus for my writing is to stimulate emotion and thought, and to promote sharing of experiences and of what those experiences meant to our gifted and measured lives.  Some of this will be history, some stories, other times themes around which we can share our thoughts and feeling. It will become a resource center for a community of cancer bloggers and answer seekers.

In any case this site is not so much for me as it is for what I want it to be for you.  I come at it from two perspectives.  As a cancer survivor, I want to continue to look for ways to turn this experience into something positive.  As a cancer nurse no longer able to practice active, I am still striving to “make a difference.”  I hope that this site will offer something of value to a broad spectrum of people.  So please don’t be shy about sharing your comments.  Else how will I know if I am succeeding at all.

Take care, Dennis

The lighthouse logo is being incorporated into the structure of the website.  Echoing the photo theme in the header and the “About This Site” page, this logo is actually of the Tybee Island lighthouse, in the shadow of which I began my recovery after my first remission.  I think the image reflects the sheltering qualities of an on-line cancer community – a safe harbor, a refuge from battling the elements, a place to launch from and return to.

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Comments

The site — 4 Comments

  1. Dennis, I was so happy to find this site. I have been following you through caringbridge. I contacted you back in 2005 when my husband was diagnosed with T-PLL. I have never written as we have been focused on his struggle with being cancer. He had a unrelated donor in 2005 after having campath and pentostatin. He had a stroke in 2006, relapsed in 2007. They gave him nelarabine which gave him neuropathy.Last summer he developed a life threatening infection and was in the hospital for two weeks. He relapsed again in 2008 and is presently doing campath and pentostatin again. He has developed some kind of rash that no one can figure out. He has awful red sploches on his legs and it is progressing up his arms and onto his trunk. We think it could be the penotstatin so they are holding at this time. This has been quite a journey. It is good to read your journal and blogs to know we are not in this alone. We do what we have to and keep up the good fight.

  2. Hi Dennis,

    I have to admit that I don’t consider myself as “being cancer”. I was diagnosed 1995, I had treatment 1995, I had long term after affects, I had bone strengthening surgery 2001, and now 14 years after the original diagnosis am awaiting further surgery. But, I have never let cancer take over me or my life. I have a blog (which you have visited) with links to cancer sites, and I am the UK co-moderator of The Chondrosarcoma Support Group (an online group that offers support and information for people suffering CS, or their family and friends) – but I still do not allow cancer to fill my waking hours, nor do I think I am “being cancer”.

    I know it is different for everyone and many of your readers will certainly identify with that phrase – so I do not mean in any way to undermine that point of view. It is very valid. It’s just not me.

    If I used any phrase about myself linked with cancer, it would be ” I am a cancer survivor”. Notice it on the header of my blog, and on the ribbon in the side panel.

    Best wishes, and Namaste,

    Author.

  3. Dear Dennis,

    I have added the link to your site on my blogroll. I think you have a terrific site and I would like to write a post about you & your site on my blog, if that’s ok with you.

    All the best!

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