"The Harsh Reality" of Pink (?)

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I am a devotee of many of my breast cancer "colleagues" blogs. Fabulous, courageous, funny, warm, honest women whom I have never met personally. But who have provided me with a window to share my journey; as well as varying perspectives to color and inform my own path.

In viewing a link to another post  via "Desiderdata" http://desideratajourney.blogspot.com/ today, I came across a hauntingly beautiful and profound black and white retrospective, lovingly documented by a husband, of his wife's breast cancer journey.

It is a must-see: http://mywifesfightwithbreastcancer.com/. I set it to "slide-show" and was so captivated I found myself on the fourth loop before I could tear myself away. And then I found myself emotionally staggered. This is not Pink.This is the reality

It is not necessarily the battle with cancer that we (the collective "we") are fighting. Rather it is the battle with the treatment. If the cancer doesn't kill "us" the treatment most certainly will.

I knew this. But somehow the harsh reality of this obvious fact hit me in the chest today - literally. Treatment has been the most contentious battle-front, for me, since my BC-Day -- July 8, 2009.

It is not the dying of cancer that gives me night terrors. It is the living as a cancer patient that sends me physiologically reeling.

Institute of Medicine ... "Pinkwashed"?

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According to the IOM Report released on December 7, 2011 (see link below), "[m]ore than 230,000 new cases of breast cancer are expected to be diagnosed in the United States in 2011." As such, the following summary by BCAction is significant on a number of levels. For me personally, it amplifies the frustration that I contend with in not knowing / understanding the hows and whys I sit here today with metastatic breast cancer - as I, like so many women have no identifiable risk factors. No "life-style" risk factors what-so-ever; and at the initial stages of my diagnosis over 2 years ago, I went through genetic testing (I needed to know for my 3 children) just to confirm that my DNA was not predisposed. Nothing.

Generally, what is currently not going on at the SABCS, informs me that either the medical community is -- at best, still stymied (by the breast cancer industry, maybe?) or at worst, not genuinely interested, in making any real head way in proactively identifying and addressing the true environmental causes for the increase in incidences of breast cancer - especially in developed countries.

Feeding the personal and general concerns is that this Symposium is reportedly being funded, solely by...Susan G. Komen.

http://www.iom.edu/Reports/2011/Breast-Cancer-and-the-Environment-A-Life-Course-Approach.aspx

For immediate release
December 7th, 2011
Contact: Angela Wall, Communications Manager (415) 243-9301 x16 awall@bcaction.org

SAN FRANCISCO, CA–Breast Cancer Action (BCAction), the respected watchdog of the breast cancer movement, responded with disappointment to the Institute of Medicine (IOM) report on Breast Cancer and the Environment: A Life Course Approach released today at the San Antonio Breast Cancer Symposium (SABCS).

The IOM was asked to review the current evidence on breast cancer and the environment, consider gene-environment interactions, review challenges in investigating environmental contributions to breast cancer, explore evidence-based actions that women might take to reduce their risk and recommend research in all of these areas.

“The IOM Report fails to turn the tide on this epidemic because it misses some important opportunities to implement real changes” said Breast Cancer Action’s Executive Director Karuna Jaggar, commenting from SABCS. “They too broadly define the environment as all factors not directly inherited through DNA which includes anything from genetic changes to tissue, to stress, to lifestyle choices and changes in abdominal fat rather than the chemicals we are all exposed to in our everyday lives.”

Breast Cancer Action is deeply disappointed in the report which fails to advance research on breast cancer and the environment and shed light on the 70% of breast cancer diagnoses for which there are no known risk factors. “The report recommendations for women merely rehash the little bit we already know about lifestyle and breast cancer and miss an opportunity to focus on relatively unknown areas of the environment,” said Jaggar.

The report correctly identifies methodological challenges in data collection establishing links between environmental factors and breast cancer. “In medical science, the gold standard of evidence is random controlled experiments on humans; however, as the report rightly points out conducting random controlled experiments on the effect of toxins on women would be immoral and impermissible. We must find alternatives that enable us to take action.” Jaggar stated that “we need to adopt the gold standard of prevention and that’s the precautionary principle because waiting for absolute proof is killing us. Instead, the IOM shrugged the burden of prevention onto women’s lifestyle choices.”

IOM committee member Dr. Robert A. Hiatt stated at SABCS that if women follow the recommendations of the IOM report “we don’t even know whether they will actually reduce their risk.”Jaggar adamantly argued that “we don’t need reports that dink around with lifestyle choices—more exercise, less alcohol, avoiding excess weight, don’t smoke, etc.—which have at best an extremely small role in reducing breast cancer risk and which fail to acknowledge that not all women have equal access to healthy lifestyle choices. We need to apply precautionary principles that stop cancer before it starts.”

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Breast Cancer Action (www.bcaction.org)—a national non-profit education and advocacy organization refuses to accept funding from pharmaceutical companies or any other organizations that profit from or contribute to the breast cancer epidemic.

CancerCultrChronicle
Posted December 8, 2011 at 10:20 am | Permalink

The Unwilling "Patient"

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When I check in at the radiologist's office, I have to first register for the procedure with a "patient coordinator."

The tech prepping me for the IV contrast for my last bilateral MRI asked, if I had become more or less sensitive / afraid of being stuck, since being a "cancer patient."

On another occasion, I emailed my alternative health care provider, and noted that the contact person for their office had the appellation of "Patient Care Coordinator" too.

It got me to thinking: what does "patient" mean?

It got me to thinking: what am I afraid of?

Definition of PATIENT

A patient is any recipient of healthcare services. The patient is most often ill or injured and in need of treatment by a physician or other health care provider.

The word PATIENT originally meant 'one who suffers'. This English noun comes from the Latin word patiens, the present participle of the deponent verb, patior  meaning 'I am suffering,' and akin to the Greek verb πάσχειν (= paskhein, to suffer).

I have decided that what I am most afraid of is  LIVING AS A CANCER PATIENT.