People Like Me

Oh, I’m tired of being home and afraid my immune system won’t fend off COVID19 or symptoms that can rob me of my metastatic terminally ill self. I decided after overthinking this post I’d relate an event that occurred about a year into my dirge towards death. A countdown -or would you call it a count up to the number of days I have left in this body that carry’s my soul from place to place, night to day, breath to death? Here’s a chapter in the last five years I call, “people like you.”

People like you…”

The nurse practitioner blew her raw red nose into a white, rough hospital-grade tissue. Clearly battling a bad flu, her mouth exposed over the face mask she’d moved beneath her chin, moved for her comfort. Defending a position sitting on a stool with both legs and arms crossed, she spoke at me while spewing her germs throughout the infusion center. The chemotherapy infusion center, where people’s ability to combat anything more than the cancers each one of us came to cure. People like us all prayed to our gods that we’d find a cure here. Some of us, people like me, could only hope to stave off death a little longer through enduring therapies that might also kill us. People like me.

Out of this contagious little Typhoid Mary of a nurse, came words I’d only heard once before, generally mumbled at people like me by men in mullet hair cuts, smelling of cigarettes and motor oil. Of course in the southern state where I’d lived the largest percentage of my life, a constant tug of war between cruel epithets and self deprecating jokes were cracked in reference to my religion – Jewish. Now, my long heritage would turn on me again, because “people like me,” in this case ashkenazic Jewish women, are genetically predisposed to breast cancer.

We have the honor of carrying the BRCA Genetic Mutation discovered in 1996 when the human genome was mapped out. There were eight original tribes who long ago set out to populate the earth with too few in the gene pool to wash us clean of this hideous mutation. Those who migrated to Eastern Europe were called Ashkenazi. Seems the diaspora spread us far and wide but not far enough .That and the environmental stressors on our bodies in the post industrial world created a perfect mix – just add hormones like estrogen and a first or second line relative with breast cancer…

Back again my mind wandering at the dull drone of our nurse practitioner – tuning her in as if a UHF channel on my little black and white TV in my bedroom at eight years old, alone in the dark up too late watching “Godzilla vs. Mechagodzilla.” I looked at her as she said, “we don’t operate on people like you.” Blink. Blink.

People like me? People married to a guy named Craig? 51 year old women? Jewish women? People who’ve traveled the world? Who know how to bead jewelry? Whose parents both died in the past three years? Who earned honors degrees in English? Who could talk by the time they were six months old? Who grew up in New York City? Who lived on Miami Beach? Who loved singing? Who swam and were lifeguards? Who have two stepsons but none of their own children? Who love deeply and give compassionately? Who cannot believe they cannot hold a full time job ever again? Who never imagined that a palliative oncologist would become the most important person next to their spouse? To whom do you refer?

“People with metastatic breast cancer, that’s who.”

“Oh, you think so? Well, you’re wrong. And let me tell you first to please put your face mask on properly so you don’t pass us your awful germs and secondly don’t dare come to work sick ever again. Next, understand that all patients are different, with different constitutions, different kinds of cancers and some of us were even diagnosed at stage IV. And not because we are negligent in getting our mammogram, but because we have such dense breast tissue. And if you’re not a doctor how dare you tell me what you believe my therapy should or should not contain in its proscriptive recipe. You have no right to be here sick or nor the credentials to know what will make me better. I know there’s no cure for me, but I dare say people like you keep people like me from getting the benefit of life and a larger slice of the cancer research pie. So get out of here and you will never speak with me again, because people like me do not need the pessimism of people like you.”

I looked into her now tearful eyes and found no pity in my heart. I found only my fierceness and my tenacity – the qualities of spirit that keep me going even through the bleakest times of my life – and as she silently stood to leave I apologized for upsetting her. But people like me don’t have the time we used to waste on ignorance and behavior that required our patience. My words, blunt, yet sharp like a surgeons scalpel, had filleted out a piece of that thoughtless, careless person who knew nothing about me or anyone even like me.

So people like me, with hormone receptor positive, metastatic breast cancer and some bone lesions to prove it, can get lumpectomies to improve their mortality. We can do things that defy the odds. And we will do everything we can to cling to this light we call life for as long as it will have us. Our beautiful, full and rich lives in which we seek only to live and find compassion in those around us as we rage at those who speak from a platform of ignorant generalizations.

I am the only me that has or ever will be.

Don’t forget me.

Artemis August 2017 — Johns Hopkins Breast Cancer Center

Genetic Predisposition to Breast Cancer Due to Non-BRCA Mutations in Ashkenazi Jewish Women

Johns Hopkins BRCA Cancer Study

Genetic mutations in BRCA1 and BRCA2 increase the risk of breast and ovarian cancer in Ashkenazi Jewish women. A new article published in the journal JAMA Oncology examines the likelihood of carrying another cancer-predisposing mutation in BRCA1, BRCA2 or another breast cancer gene among women of Ashkenazi Jewish ancestry with breast cancer who do not carry one of the founder mutations.

Mary-Claire King, Ph.D., of the University of Washington, Seattle, and coauthors sequenced genomic DNA of 1,007 women of Ashkenazi Jewish ancestry with breast cancer for known and candidate breast cancer genes.

Of the 1,007 patients in the study, 903 had none of the three founder mutations in BRCA1 or BRCA2. Of those 903 patients, seven (0.8 percent) carried a different mutation in BRCA1 or BRCA2 and 31 (3.4 percent) carried a damaging mutation in another breast cancer gene, according to the results.

The study notes two limitations, including that only genes known or suspected to harbor mutations increasing the risk of breast cancer were sequenced.

“Ashkenazi Jewish patients with breast cancer can benefit from genetic testing for all breast cancer genes,” the article concludes.

SOURCE:JAMA Oncology, July 20, 2017

Count and be counted.

 

We MBC patients count a great deal as we pertain to medical research. Welcome the guinea pigs. Long live the lab rats.

The MBC Project – Mbcproject.org – which asks us lifers to contribute our genetic material including a slice of biopsy material. Our genetic stuff will be shared with researchers “at the Broad Institute of MIT and Harvard, in collaboration with Dana-Farber Cancer Institute, Harvard Medical School, and a growing coalition of non-profit advocacy partners,” to dive deeper into our currently incurable form of cancer.

My litmus test, well, my opinion anyway, is why not share what I can to help anyone who comes after me not to suffer at the fate of the three current and only widely available treatment modalities for MBC. You know –  chemotherapy, surgery, radiation therapy. Good lord, barbarism. Very profitable barbarism.

While I used to worry about my online security and privacy if I engaged in such tests and surveys – especially of my own physicality, my future would change that point of view in a way anyone could not have predicted.  I suppose in some ways I gave up my privacy the day of my diagnosis. No longer could I remain anonymous. No longer some generic marketer hiding behind a vague business strategy career overview on LinkedIn and my own, as well as corporate, business focused blog posts.

I became part of a community of the dying few too many with stage IV cancer.

Post diagnosis, my online life exponentially grew from occasional blog posts about marketing with a pithy, humorous voice, to a robustly public online presence with a pithy, humorous voice. My individuality showed a little more than I thought prior to attempting to turn up the volume to reach outwardly to receive help from others and  to reach inwardly to hopefully assist others in need of my experiences to help guide them through theirs.

I recall the same day of my diagnosis, after we assessed the earthquake damage, I turned to Craig and told him I’d participate in as many clinical trials as possible since it was incumbent upon me. Having tried to find some to participate in wasn’t as easy as I’d hoped, and not all were appropriate for my health. There just aren’t many clinical trials for which I fit the bill.  However, there’s a few good ways to share information to help researchers to get a better handle on who has what and what we take and how it’s working and our lives and how psychosocial factors can effect our health.

Another such was run by Dr. Susan Love and looked at the collateral damage of MBC. Bravo as usual Dr. Love. She’s not only written the Bible, “Dr. Susan Love’s Breast Book,” available on Amazon, or chances are good in your local library has multiple copies available to check out for free, or in your local new or used bookstore, too. It’s with impatience that I await the results of that study, and I’ll let you know as soon as I know when the findings are made available.

You can delve into her information rich site and also take part in the HOW – health of women – study here: https://www.drsusanloveresearch.org/how-study/my-overview

In the mean time, do some diving around. Find some place so you  can reach out for support and participate in research specific to MBC:

Metastatic Breast Cancer Network – MBCN.org

MBC Alliance  – http://www.keepmeinthepicture.com/mbc-alliance/

Advanced Breast Cancer (full o’ great resources – http://www.advancedbc.org/

And a portal to give you a roundup of all sites cancer related  http://www.mbcinfocenter.com