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.

The Cancer Culture Chronicles: Rachel Cheetham Moro 1970-2012

cancerculturenow.blogspot.com
http://cancerculturenow.blogspot.com/2012/02/rachel-cheetham-moro-1970-2012.html

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?http://cancerculturenow.blogspot.com/2012/01/for-cure-or-not.html

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.



Rachel

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." http://www.metavivor.org/METjoin_30430.php

"Peaking" Behind the Pink Curtain

******

Today, October 13, I just recently found out, is METASTATIC BREAST CANCER AWARENESS DAY. Who knew? And, more importantly, why didn't we know?

The entire month of October is "Breast Cancer Awareness" month, and the killer form of breast cancer gets only one day out of 31. 1% of the attention. Unfortunately, that is the reality and history of breast cancer research and awareness.

No one wants to talk about the actual death rates behind the pink curtain.

It boggles my mind that as the runners race for the cure; walkers do their 3-day walk; drinkers down their Pink Hard Lemonade; fashionistas don their pink pins, bracelets, baseball caps, t-shirts; foodies eat their Kentucky Fried [pink packaged] Chicken; and Susan G. Komen markets their carcinogenic PROMISE ME perfume, that only a small percentage of concerned, well-meaning people ask the question: where does my contributing money really go, and how is it spent?

Susan G. Komen only spent approximately 20% of their raised funds on (early stage) research in 2010, despite raising over $310 million (although $22 million went to salaries).

And... Despite the platitudes to the contrary, it certainly does not go toward reducing...eliminating (?)... the deaths from metastatic breast cancer. Despite the moniker that, early detection saves lives...(the falacy of which is becoming more apparent)  the $$$ do not go toward solving the medical mystery of what causes breast cancer, and what then causes it to metastasize? And only 2% goes toward research on that form of breast cancer that causes the death of 40,000 women each year in the U.S.

Because of these life-impacting inequities, METAvivor, a non-profit organization devoted solely to raising funds for metastatic breast cancer research, as well as awareness of this deadly disease, was developed and conceived. Below is a repost of an OpEd written by the president of METAvivor, C.J. (Dian) M. Corneliussen-James, this past summer. I strongly encourage you to read this enlightening OpEd, and then go and check out METAvivor.org. 

~ TC

Opinion: 30 percent for 30 percent

Posted on 01 June 2011.

By C.J. (Dian) M. Corneliussen-James

The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body. It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

Clearly, ending death from metastatic breast cancer (MBC) is of critical importance not only to those living with it, but also to anyone who has had, or may at some point develop breast cancer.

Unfortunately, research for MBC is vastly underfunded. Indeed, research for all metastasized cancers is collectively funded at only 2 percent, and MBC is a subset of that group.(A recent quote of 5 percent in regard to metastatic cancer research came from averaging U.S., Canadian and European research portfolios. All statistics and information in this paper pertain solely to the U.S.)

So where does most of the money go? It goes predominantly into prevention and early detection. If one looks at the funding distribution pie charts of various organizations, these two categories are inevitably included. What is not immediately apparent is that much of the funding designated for other categories, such as biology and etiology, is also spent on issues pertaining to prevention and early detection. By comparison, MBC research is so poorly funded that it rarely even appears on a pie chart.

The preoccupation with prevention and early detection has continued since at least 1998 when the National Cancer Institute set these two issues as the national breast cancer focus. Reaffirmed in 2004, the policy has not changed — neither has the fact that each year roughly 195,000 Americans continue to be diagnosed with breast cancer, that 30 percent of these patients continue to metastasize, and that 41,000 continue to die each year.

While one cannot dispute that prevention and early detection are worthy causes, one can indeed question the inequity in the distribution of funds. Further, one can certainly ask how long we plan to direct the preponderance of research in this same direction, especially in light of what has, or better said has not been achieved.

Why are other organizations not funding stage IV research? Here are my thoughts:

1. Image and Turn-Around: Grant-givers prefer projects of short duration with a relative certainty of success. That is good for the image and encourages future donations. Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It. Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer. The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public. Even those who know the truth keep giving, including some of those dying of the disease. They are caught up by the glamour, the big names and the enticing events. There is no need to take the difficult road.

3. Money .. Money .. Money. Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.  [This block quote was copied from an earlier post by CJ and  inserted here by the blogger, TC...exploiting her creative license]

Quite a few scientists say privately that prevention in the foreseeable future is unrealistic because among other things, we do not even know what causes breast cancer and thus have nothing specific against which to target our efforts. Likewise, early detection has failed to effectively reduce death because some patients have metastatic cells prior to developing a detectable breast cancer. And thus even stage 0 patients can and do metastasize.

Research for other aspects of breast cancer is certainly being done, but on a diminishing scale. At the bottom of the scale is MBC — the only breast cancer that kills.

In response to a small but nevertheless persistent outcry that not nearly enough is being done, we have recently seen one or two promises to address the issue of MBC. Yet in reading the fine print we see that what is being discussed is research to prevent breast cancer from metastasizing — not research focused on interceding after the cancer has spread.

Is there a difference? You bet. Although any cancer research can at times yield new information relevant to another area of research, significant progress usually occurs only when research is directly focused on the problem at hand.

Metastatic cancer exists in a different realm than non-metastatic cancer. Thus MBC is far more apt to benefit from research undertaken for another metastatic cancer than it is from research involving non-metastatic breast cancer. Unfortunately, since the entire field of metastatic cancer is funded at only 2 percent, there is limited related research to draw upon.

So just what is the reluctance to sufficiently fund metastatic cancer research?

Historically, metastatic cancer has been considered too complex an issue to tackle with any reasonable expectation of success. Yet times, and the state of science have changed.

According to Danny R. Welch, Ph.D., renowned career metastasis researcher and past president of the Metastasis Research Society, “Within 10 years, suffering from and potentially death from metastatic breast cancer could be reduced significantly if the research were fully funded.” There are now many dedicated career metastasis researchers, who have the education, the experience, the skills. the ideas, the proposals and the scientific insights to make a difference. What they lack is the funding.

I could make the argument that MBC research, and not prevention and early detection, should be the premier focus for breast cancer research. Clearly those with MBC have the most urgent need for research because it is their lives, and only their lives, that are imminently at risk. Equally important is the fact that ending death from MBC is the only means to simultaneously bring peace of mind and the promise of longevity not only to all stages of breast cancer patients but also to a general public that worries about being diagnosed. By contrast, prevention and early detection are relevant only to the undiagnosed. Once a person becomes a patient, these issues are of no further value.

Yes, I could make my argument, but I am unlikely to win. Thus instead, I advocate for what I think is both fair and achievable – 30 percent for 30 percent. Thirty percent of all breast cancer patients metastasize and die. Thus 30 percent of all breast cancer research funds should be dedicated to MBC research — exclusive of research to prevent metastasis, which pertains to the non-metastatic patient and thus belongs in the domain of non-metastatic research.

If we could achieve 30 percent for 30 percent, we would save countless lives.