Sunday, February 19, 2012

...and now completely RANDOM houskeeping trivia

Over 20,000 reads and 64 countries reached.   It's the little things...

Top 11 Audience / Countries (to-date [2.19.2012])
Pageviews by Countries
United States             12,078
Russia                            913
United Kingdom            721

Germany                        683
Canada                           663
Australia                        355
France                            311
India                              272
Netherlands                   265

Ukraine                         156
Iran                                 92
Really cool countries that haved popped up recently:

Saudi Arabia
Czech Republic
Sri Lanka
South Korea
Puerto Rico
Hong Kong
Myanmar [Burma]
Netherlands Antilles
Saint Vincent and the Grenadines
Costa Rica**

~ makes me wonder how my sometimes peculiar humor (aka sarcasm) translates.
I am misunderstood too often in my own native language!

Monday, February 13, 2012

Sitting "Shiva" for One, and All of the 41,000


There are inevitable realities that we must embrace as part of our membership in the human experience: birth, disease and death. It is within the intervening moments of these realities that we try to distinguish ourselves; define our lives; create some happiness; and for better or worse, beget a personal legacy.

In between birth and death, is "disease." Not all of us will be directly stricken. But disease will touch all of our lives in some way. Then there are those of us who find imposed upon our reality, the learning to live with chronic disease. That can be tricky. An inevitable component to learning to live with a chronic disease is the "looking over the shoulder" to see if the disease is catching up. For most of us living with metastatic  breast cancer, it is fairly inevitable that at some point our MBC will indeed catch up with us. But even the inevitable can leave you feeling like you have been kicked in the gut.

This past week has been a gut kicker.

Essentially, this week I have been sitting "blog-os-phere" shiva for a fellow metastatic breast cancer journeyer. A brilliant blogger/essayist. An accomplished individual in all her own rights - a woman who did distinguish herself; defined a life for her and her husband and family; who from all sources created happiness not only for herself but for those fortunate to be within her sphere; and who bestowed a legacy that is being cherished by so many that she touched. A beautiful soul that left this pedestrian journey to explore a new path on a different plane.

Shiva is a an integral stage in the mourning process. The first stage of mourning is aninut, or "[intense] mourning." An onen (a person in aninut) is considered to be in a state of total shock and disorientation. Initially, when I heard the news of Rachel's passing, I felt dizzy and frozen at the same time. The room was spinning, but my breathing was stifled by the emotional vertigo that gripped me. Then there was this eruption of emotion, punctuated by a deep growling sob. The sound was coming from me? How could this "force" that is ...  had been, Rachel been extinguished?

Rachel's last post on CancerCultureChronicles, on January 19, 2012,included her usual snarky, intelligent and challenging style: "...Given Komen's relentless pursuit of the almighty dollar, and its almost megalomaniacal status as the world's leading breast cancer organization, is it not time for Komen to be more transparent about where it's future priorities lie and how it evaluates it's success?
Don't we, as the donating public, deserve better?  Come on Komen, what's your plan for the next $2 billion, and if you are no longer for the cure, then what are you for?

Aninut is immediately followed by avelut ("mourning").  Avelut itself consists of three distinct periods.The first stage of avelut, and the most commonly known, is shiva (Hebrew: שבעה ; "seven"), a week-long period of grief and mourning. Observance of shiva is referred to, at least by western Jews, as "sitting shiva". It is considered a great mitzvah (commandment) of kindness and compassion to pay a home visit to the mourners.

Rachel Cheetham Moro passed away, left us, departed ... died on February 6, 2012. I am not in the mood for euphemisms. The reality of Rachel living with metastatic breast cancer, coupled with the life-sucking adjuvant treatment that she endured was that, more likely than not, the inevitable would catch up with her. It did. It sucks. The loss is palpable. I am angry.

So many have been writing about their memories and feelings for Rachel. Many and most are screaming their outrage of the needlessness of Rachel's death. Rachel had not been doing well. She shared that with us. Never in a whiny, poor-me fashion. No. Her frustration and fears were expressed with humor, challenging those who read her well-crafted essays, to dare to feel sorry for her. Rachel's strength and joyful audacity was evident even through the medium of blogging.

I never had the opportunity to sit and share face-to-face conversation, and wine, with Rachel. I will never get that opportunity, at least on this plane. It is my loss.

This past week, however, I have re-read her blog entries. I have re-read her comments over the last 14 months to my blog entries, as well as her Facebook postings. I have visited her posthumous blog, sharing in the pictures and chronicles (no bad pun intended) of her life, preserved in the memories of her husband, Anthony (whom she referred to as "Beloved") and her family.  I have spent this week of avelut sitting shiva and thinking about and remembering Rachel as I knew her. Contemplating how she touched my life, and what meaning she brought to our shared experiences.

Rachel was a light that I looked to each week. Especially when I was re-staged with MBC this past summer. We both had a propensity toward snarkiness and irreverence (and at times, downright hostility) toward the industrial machine that dominates breast cancer research - Komen-led, and vacuously marketed by pink banner-cutsie profit-seeking retailers. I could relate to her frustration and shared her call to change the scripted conversation that has stymied the "breast cancer conversation" these last 30 to 50 years.

My "virtual" connection with Rachel was bittersweet, however. Rachel had been living with MBC for several years when our blogging paths crossed. She had originally been diagnosed with breast cancer in 2004, and three (or so?) years later re-staged with MBC. For me, Rachel was living with "our" disease a few steps ahead of me. To witness the progression of her disease was like having the advantage of a cruel "crystal ball." Many times I wanted to through a hissy-blog-fit with Rachel and beg her to stop the chemo. Just stop! The ravages of the treatment are killing you! I could never disrespect her, or anyone else, with my opinionated prejudices. I kept my own counsel. But I am angry now. Not at Rachel and her choices. She chose the color of her journey, and bravely lived through its ruthless intentions with such enviable vitality.

No, I am angry that living with metastastic breast cancer, Rachel - and yes, me and others like us, have so few real choices. That is not to imply that all those living with non-stage IV breast cancer are enjoying a smorgasboard of options. They are most definitely not. The prevailing lack of attention given to advanced breast cancer - by the media, by the medical community-at-large, by the monolithic entities, and yes you Susan G. f-ing Komen Foundation, make you all complicitous in the death of Rachel - who has now joined her path as one of the 41,000.  

This inevitable reality, although well-known but equally well-ignored, is a real gut-kicker.

Here is to you Rachel. You are still a light, a force to be reckoned with. You nurtured a legacy that will keep you present with us. You, and the 41,000, give voice to the dire need for change both in the breast cancer conversation and in the current potentates in the breast cancer industry. We must find a way for not only the voices of the 41,000 to be heard, but to be the catalyst of live-saving change.

Hoo Roo and Cheers, Rachel! 

On October 10th, METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple: Since thirty percent of all breast cancer patients develop MBC -- a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.
"People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year. Survivors think they are safe because they are 5 years out ... or were diagnosed early ... or were told they are 'cured', but MBC plays by its own rules." says METAvivor President, CJ (Dian) Corneliussen-James. "People diagnosed at stage 0 as well as 30-year survivors can and do metastasize. You feel great one day and the next day learn you have MBC. Your life can change that fast."

Thursday, February 2, 2012

EXCLUSIVE to BooBeeTrap..."Ms. Brinker Bares All on the Latest Battle of Political Agendas: Profit vs Women's Health (...not again!)"


STOP the PRESS!!!!

With all the online flurry about Susan G. Komen, I felt I could not add anything original to the current virulent discourse. Then I was given the unique opportunity to interview Ms. Nancy Brinker, founder of Susan G. Komen. What a coup for an Anti-Pink Blogging Grumbler such as myself. Ms. Brinker would only allow seven (7) select questions in this exclusive interview. She wanted to to tap dance aroundjustify, put to rest all the speculation circling regarding Susan G. Komen's recent controversial decision to pull funding for breast cancer screening, medical referrals and mammograms for women who utilize the services of Planned Parenthood. A "set-the-record straight" tete-a-tete. Despite the sensitive nature of this topic, Ms. Brinker  PROMISEd ME that she would answer honestly on all accounts. A one-time only exclusive for all you Boo-Bee Trap fans!

All right it only took place in my head, and I didn't draft the questions - Nancy from Nancy's Point was the author of the insightful questions in bold, below. But wouldn't it have been refreshing - a candid discussion with Nancy G. Brinker!?

This is how it played out in my head:

1. Do you genuinely care about the health of all women? 

Old adage, "actions speak louder than words" - because of SGK's actions in this instance and in the way we have historically and consciously decided not to address issues, like metastatic breast cancer (you know...that loser cancer cause) I would think you already know the answer to this question....The answer is a resounding NO, not ALL women -- only the vocal right wing conservative non-minority women. You know, the ones that can actually afford to pay, or have comprehensive health care that pays, for breast cancer screening. And, of course those women that Rep. Stearn tell me are the "good women." He's been compling a list.

2. When did caving to political pressure from any source become acceptable for an organization like Komen, the self-proclaimed world leader in the fight against breast cancer?

It  all became acceptable when my little "nonprofit" greedily took money from companies that perpetuate cancer (by the wide spread commercial use of known carcinogens) -- it is a lucrative reciprocal business relationship after all. This discriminating myopia was reinforced when we got away with requisitioning a product, for profit and marketed to women, containing identified hormone disruptors. It was a brilliant business decision as it ensures our longevity as a necessary organization. BTW, I brought you a complimentary bottle of PROMISE ME, since I was informed prior to our interview that you are a stage IV cancer patient. Honestly honey, what harm can a little PROMISE ME behind the ears do to you in your situation? And make sure to share it with your daughters - if SGK is going to thrive through the 21st Century we need the next-generation.

3. Unfortunately, I have to ask, is this really about breast cancer, or is it more about pro-choice vs pro-life agendas and possible contributions Komen may or may not receive if they do not pull funds from Planned Parenthood?

It was an economy of scales decision: the extreme right-wing conservative political faction in this country hold more wealth than the minority/women population served by that sketchy organization, Planned Parenthood. SGK may well alienate the "liberal" financial base that is outraged by the burden and impact of our decision, but SGK will still be able to meet targeted fundraising goals through our now public support of these new BFFs. There is a great surge in the country to undermine efforts in making health care affordable and accessible to all, SGK does not want to be behind the curve on this surge.

4. Since many women rely on Planned Parenthood for all of their health care needs, do you really want to send the message you don’t care about them? What if they die from an undetected cancer? Don’t their lives matter?

They will be dead, duh! Our lawyers have advised us that since we are not obligated to provide this service. We are a nonprofit philanthropic organization so we don't need to do everything for everyone. Well, our lawyers advised that, because of our 501(C)(3)status, the surviving families of THOSE dead women will not have any legal causation for a wrongful death suit. So, in a nutshell, since there is no liability on our end...NO...they are not even a blip on our spreadsheets! Then there is the consideration of our new BFFs on the right. They showed SGK's board that statistically PP's target population have low voter turn outs, so they don't calculate on their spreadsheets either. Our messages is: this decision is a win-win for us and our well-heeled BFFs. Besides, I have truly exaggerated the impact that SGK has had in deterring breast cancer deaths over the last 30 years. Bottom-line (don't you just love that term!) my obligation is to our financial stake-holders...oops, maybe I shouldn't have said that, that may be in violation of SGK's by-laws as a 501(C)(3). You will delete that last statement, right?

5.  And why the sudden change of heart? Komen has been partnering with Planned Parenthood since 2005. That’s seven years. This “investigation” came to the forefront in 2011. Grants from Komen totaled around $680,000 last year and $580,000 the year before, allowing Planned Parenthood to provide breast cancer screenings and other breast-health guidance services to more women in need at 19 of its affiliates.

Ms. Handel - our new, very out-spoken, vociferously anti-choice crusader, was hired 18 months ago. Part of our employment contract with her was that we would indeed make strides to transition away from our prior 6 year support of screening, referrals, etc. to THAT population served, largely in-part by Planned Parenthood. This was a real stickler for Ms. Handel. Well, Ms. Handel is a real go-getter and rallied the dormant politicized myopic agendas of our other board members and took care of business faster than we could all imagine. Securing her for SGK has been a real feather in our philanthropic cap.

6. Shouldn’t this be something Komen is proud of, not halting?

Despite what I said to the prior question (#4) - because I really don't have any qualms being inconsistent or contradictory, SGK continues to be proud of the significant inroads we have made over the last 30 years in striking a significant blow to the prevention and cure of breast cancer...even if over 40,000 women die of MBC every year in this country. Interestingly, no matter how many 3-day walks we hold, that number really has not significantly changed in the 30 years we have been in existence! I need to talk to the board about stepping up production of  BPA filled plastic pink water bottles...but I digress. Well, I am proud to be fulfilling the promise I made to my sister on her only a SELECT group of women who align with my political & religious ideologies will be afforded access to potentially life-saving health care! Between you and me, it is a good thing Susan is not here, she would so rip me a new one right now!

7.  How do you justify eliminating funds to support Planned Parenthood while also proclaiming commitment to your mission?

I am proud to be fulfilling the promise I made to my sister on her only a select group of women who align with my political & religious ideologies will be afforded access to potentially life-saving health care! Oh cr*p...did I just say that out loud, twice? This interview is so over - when you have this much Botox in your face, it really is hard to pontificate for long periods. Don't forget your PROMISE ME!