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

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

13 Facts You Should Be Aware Of During Breast Cancer Awareness Month

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"While there is no cure for metastatic breast cancer, some individuals are able to live longer with the disease. However, metastatic breast cancer remains a clinical challenge in the oncology community. October 13 places emphasis on the disease stressing the need for new, targeted treatments that will help prolong life." - William Gradishar, MD, Northwestern University Feinberg School of Medicine

13 Facts Everyone Should Know about Metastatic Breast Cancer ~ reprinted from the Metastatic Breast Cancer Network. mbcn.org

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. [ILC (invasive lobular carcinoma) is atypical in where it will metastasize first, e.g., lymphatic system, peritoneum, uterus]

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

X-ray of a woman with metastatic breast cancer
 in her bones

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of

their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%. (Ahhh...this is where radiation onc got her figures when she played out for me her interpretation of the grim reaper. She gave me the cookie-cutter stats!)

13. October 13 is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www. mbcn.org.

Getting a Handle on the Abbreviations & Acronyms

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My Own Little "AA" Pocket Reference

ALND = axillary lymph node dissection
ANS = Autonomic Nervous System (ANS)
BILAT = bilateral
BHRT = bioidentical hormonal replacement therapy
BRCA = breast cancer type 1 susceptibility protein
CAM = complimentary alternative medicine
CNS = central nervous system
CT = computerized tomography
DCA = dichloroacetate
DCIS = ductal carcinoma in-situ
DFS = disease-free survival
EGFR = epidermal growth factor receptor
ER = estrogen receptor
IDC = infiltrating (invasive) ductal carcinoma
ILC = infiltrating (invasive) lobular carcinoma
LCIS = lobular carcinoma in-situ
METS - metastatic
MRI =  magnetic resonance imaging
OS = overall survival
PetScan [PET] = positron emission tomography
PgR = progesterone receptor
SNLB = sentinel node biopsy

I will be adding to this list as I learn more during this next stage. This is just the basic primer for now.

Think...think...think

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This round of research is more daunting than when deja vu first came calling. I am trying to educate myself on the pros & cons of the two scenarios that have been thus far presented:

Select removal of the impacted axillary lymph nodes followed up by radiation of the chest wall

or

Full axillary nodal dissection

So far nothing that gives me an understandable comparison. Most of the journal articles that I have found all conclude their findings with the impact on early stage breast cancer. I am advanced stage, metastatic (now).  And, although I "remembered", I am hit anew with the short-term objective of all studies, i.e., 5-year disease free survival.

Ah...WWPD????