Over the seven plus years of my being afflicted with cancer, with prostate cancer and all that goes with it, I’ve vowed to remain somewhat private when it comes to my situation.  When it comes to my professional life, I’ve found a certain bias when it comes to male health issues.  While I would like to say it is limited to the workplace, and be clear, I refer to the overall environment, not those close to me, it seems the idea, the notion, that men don’t get sick that they don’t talk about their illnesses because men are not supposed to get sick, they are not supposed to be weak.  It is much like the idea set forth in the movie disclosure where Demi Moore played the more powerful executive and who forced herself on Michael Douglas.  When he brought forth the transgression, no one believed him, they all saw it the other way, because, after all, he is the man and why would he not want to have sex with Demi Moore.  The stereotype is pervasive throughout society and includes men who are sick.  Under this veil I’ve chosen to remain anonymous, in this blog and when it comes to my disease in general.

Since my diagnosis I’ve sought out and evaluated a number of treatment options.  With each I kept an eye on both the potential to enhance my longevity, but equally so, to contribute to the science, to allow a certain level of experimentation be done on me, to do some creative, but not too unrealistic approaches to suppressing my disease.  Some came with risks and I bear witness to those risks in terms of a shrinking bladder subject to interstitial cystitis and a damaged lower gastrointestinal tract which subjects me to things like constipation, a condition causing great pain with the ureteral stents.  However, that I remain alive, that we’ve held my disease at bay when others, similarly diagnosed but treated more conventionally, have passed, offers reasonable and insurable, alternatives to those approaches and possibly extending the lives of others for longer periods than otherwise thought.  I see these approaches, conceived of by leveraging my undergraduate education and by challenging two doctors from different institutions, to consider the alternatives, as my contribution to science, at least to this point in my life.

Earlier this year I offered to help one researcher who involved in my care raise funds for a project in which he has been working.  His research is two-fold, a treatment, which while he currently focuses on prostate and kidney cancers, should extend to all solid tumor cancers and an assay offering an infinitely more accurate means to measure the real activity and severity of prostate cancer.  The latter, as with the former, should extend to all solid tumor cancers.  Despite the promise, in the current austere and recessionary environment, funding is scarce and these projects were suspended for lack of funding.  With this in mind I made contact to one of my venture capitalist colleagues who agreed to see a presentation on the research with the idea of possibly extending the research to a company, or folding it into one of the his portfolio companies, as a means to continue its funding.  While the meeting went well, the research being very impressive, an investment would not be made because of the inability to develop a secure business model, one capable of securing a reasonable opportunity for a financial return.  What did come from the meeting was the idea of a foundation whose mission focused on the type of research under discussion that day.

Over the nearly 9 months since that meeting I’ve thought of many ways to fund research, ways to secure funding for not only the research of those with whom I’ve worked and are responsible for keeping me alive, but for others whose research is less mainstream, but equally realistic and promising.  One pet peeve I have, and this is not to undermine the seriousness of breast cancer, is how the world turns ‘pink’ in support of breast cancer research.  Ironically, the NFL, whose players are men and with the vast of its fan base being male, openly turns ‘pink, sometimes for the whole season, but certainly for breast cancer awareness month, refuses to openly acknowledge prostate cancer awareness month by wearing the color of prostate cancer during its month.  When openly asked why in a letter published The Huffington Post, a response directly to the author came from Anna Isaacson, Director of Community Relations responded in which she pointed out their “less visible”, and for the most part hardly known, ‘know your stats’ campaign, the link to which being buried somewhere under multiple links on their website.

When talking to researchers about the Prostate Cancer Organization, founded by Michael Milken, yes the same convicted of insider trading in the 1980’s, I learn of a highly politicized organization that seemingly only funds the mainstream approaches and those highly visible, most likely a result of very active public relations departments.  I’ve found a number of other organizations and foundations intended to  support prostate cancer research, prostate cancer education or both.  While well intended the common thread among all of these organizations is the lack of a personal approach.  Unlike the Susan B. Komen organization, there is no face to prostate cancer, no man to tell the story in the first person in such a broad-based public manner, no story to go with the cause.

As I noted in the opening of this post, I have retained anonymity, choosing to keep my disease to myself and those close to me.  I’ve done this purposefully for several reasons, the primary being I wanted to maintain my career, to continue to build an inheritance for my son.  Secondarily, perhaps equally importantly, I did not want to be thought of in terms of my cancer, I didn’t want my cancer to define me in the eyes of anyone.  However, as time moves on, as I encounter more unfunded research, as I continue to see the success of the Komen for the Cure Foundation, as I continue sensing the immense need, I become more convinced to do as others have done, organize a foundation, but with a twist, add a face, a personal story to the foundation, someone to tell the story, someone to establish a ‘brand’ for prostate cancer.

While the idea for a foundation is very nascent, it is developing with a number of ideas aimed at fund raising.  The first, perhaps most challenging for me, is the idea of a hike, a walk from my new state of residence to those of my providers, a trip of over 1,750 miles.  As part of the effort, perhaps joined by several college students, my nephew for one, a friend of my niece and perhaps my son.  Along the way I’ve envisioned many opportunities to raise additional funds, yet to be determined.  While many may see this as far-fetched, I am less daunted since I can, and have begun to, enlist colleagues involved in marketing and public relations.  I may also be able to leverage industry contacts for sponsorships.  Perhaps with a little help, some encouragement and the sale of my current home, all this can become reality.  Perhaps in time, the more than 217,000 men expected to be diagnosed with prostate cancer, more than the 207,00 women diagnosed with breast cancer, will have renewed hope.  Perhaps the 32,000 men who die from prostate cancer each year will diminish to zero.  Perhaps, on a grander scale, society will no longer view men diagnosed with any disease as weak, perhaps men diagnosed with cancer will gain the support of all in their lives and society as a whole.  Perhaps it is time, time for me to come from under the veil and fight for the cause, fight for all men so afflicted and all those who passed.

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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