Saturday, June 23, 2012

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

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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

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."

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