Day 17: Gary Averbach at Sicamous, a resort town about halfway between Calgary and Vancouver.
At press time, Gary Averbach had reached Kamloops, completing 23 days of his walk to raise money for cancer research, which started in Calgary on June 25. Averbach is doing the fundraising walk in memory of Robert (Bob) Golden, Ronnie Onkin, Darlene Spevakow and Angelita Tica.
In a June email, he wrote, “’Some years ago, as part of my ‘bucket list,’ I decided that, in my 80th year, I was going to walk from Calgary to Vancouver. But, early in 2021, my dear cousin, business partner and lifelong friend, Robert (Bob) Golden, was diagnosed with a rare and almost always fatal bone cancer, chondrosarcoma. On the eve of his passing, on Aug. 26,, 2021, Bob asked that I do my walk in his memory, to raise funds for cancer research, especially the insidious one that was killing him.
“Of course, I couldn’t refuse. And so I changed the focus from just being a personal bucket list item to cross off my list and instead started planning Bob’s Walk for Cancer Research.
“Then, sadly <\a> in the span of a little under seven weeks <\a> starting early in April, I lost two more cousins, Ronnie Onkin and Darlene Spevakow, and a treasured housekeeper, Angelita Tica, to lung, liver and pancreatic cancer, respectively.
“Because of those tragedies, I have since decided to do this walk in memory not just of Bob, but also in memory of Ronnie, Angelita and Darlene.”
At the end of Day 23, Averbach blogged, “So the challenge facing us today and the weeks ahead is not the ‘walk’ but making sure that we achieve our goal of $500,000, hopefully before I end the walk in August but most definitely by my 80th birthday on Oct. 10. My current projections – depending on the size of the outstanding gifts – has me as high as $425,000 to as low as $385,000.”
Today’s ancestry services, like 23andMe, have made us more aware than ever of our genes and just how important they are, for both our own health and the health of our children. Celebrities like Angelina Jolie and Matthew Knowles (Beyoncé’s father) have highlighted the importance of two genes specifically – the BRCA genes – and their role in the development of hereditary breast and ovarian cancers. Even so, with the risk of carrying these genes in the general population only estimated between 1/400 and 1/1,000, for most of us, these genes seem like someone else’s problem. But, a few years ago, I learned that people of certain backgrounds, specifically those with Ashkenazi Jewish heritage, are actually at 10 times the risk of the general population (one in 40) for carrying these BRCA genes. I then learned that I was BRCA1 positive. I am an Ashkenazi Jewish woman.
In the 1970s, my paternal grandmother, then a young woman, was treated for breast cancer and made a full recovery. She passed away in 2014. When she died, I requested to be tested for BRCA through the B.C. Cancer Agency’s Hereditary Cancer Program. At the time, I was not prioritized for the test because no one in my immediate family had had a cancer that would directly link me to the gene. I was not seen at the time as being “high enough” risk.
But, in December 2017, I received a phone call that changed everything. It was from my older sister. She had recently volunteered to join something called the Screen Project study at Women’s College Hospital in Toronto, which included testing for the BRCA gene mutations. She had received her results and had tested positive for the BRCA1 gene mutation. I immediately registered for my own test. The test eventually came in the mail, I spit in the cup and sent it back. A month later, I received my own call from the study.
I was told that I was also positive for the BRCA1 gene mutation and that my chances of getting breast cancer and/or ovarian cancer were extremely high – about 70% lifetime risk. I was told that I would need to make some urgent decisions about having more children because regular screenings and preventable surgeries were now available to me. It was recommended that I take action immediately because of my age. The study connected me back to the B.C. Cancer Agency’s Hereditary Cancer Program, which would connect me with my medical care team.
The next year would prove to be a whirlwind for our family. Within a month, I was pregnant with my third child. I planned to have a surgery to remove my ovaries and fallopian tubes (a salpingo-oophorectomy) the following year. While all of this was taking place, my sister had gone for her first mammogram. It initially was clear, but more intensive screening (available in priority to BRCA carriers) revealed cancer. I then had to witness my beautiful older sister battle breast cancer and go through a full double mastectomy. She luckily made a full recovery. We then celebrated the end of her battle with the birth of my own child, followed soon after by my own salpingo-oophorectomy, the day before my sister’s reconstructive surgery.
As devastating as those phone calls were, one thing is clear to me – that my sister is now cancer-free and alive because she learned she was BRCA1 positive. I also know that my own BRCA status has afforded me the ability to make life decisions, have preventive surgeries and avoid cancer now and in the future. Although scary to consider, the knowledge of the BRCA1 gene in our family has been invaluable and saved lives.
I now volunteer for a committee in British Columbia called BRCAinBC, which is working to improve awareness of and access to testing for the BRCA genes in people of Ashkenazi Jewish heritage in the province. It is our message that all people with Jewish heritage should consider getting tested for BRCA genes, as new studies show that only half of all Ashkenazi Jewish carriers have the requisite history of cancer in the family that would indicate risk for carrying a BRCA gene.
We also let people know that the best time to get tested is when they are young and healthy – before cancer strikes! Testing for BRCA in your 20s and 30s provides people with many more options to prevent and manage their risk of cancer. Testing is quick, simple, easy and cheap (or free in many cases).
It is just as important for men to get tested as it is for women – BRCA genes are better known for their role in breast and ovarian cancers, but they also significantly increase the risk of many other cancers that affect men, including aggressive prostate cancers, pancreatic cancers and melanoma.
Learning your BRCA status can, of course, be overwhelming, but it also can provide you and your family with the tools to stop cancer before it starts. That’s what it did for me.
Tovah Carr is a member of the BRCAinBC committee in British Columbia. BRCAinBC is an initiative to increase awareness and understanding of genetic cancer risk in the Jewish community and provide support for those who want to get tested and for people found to carry the BRCA genes. For more information, visit brcainbc.ca. For more information on the Screen Project, go to thescreenproject.ca.
Most everyone on the planet has now heard of mRNA, thanks to the vaccines against COVID-19 from Pfizer and Moderna, which are based on messenger RNA. But, before mRNA was used to address COVID, research was conducted into how it could fight cancer. Now, researchers at Ben-Gurion University of the Negev have discovered a key connection between mRNA, peptide proteins and tumour progression.
Messenger RNA codes for different proteins, each with a unique function. There are both “long” and “short” peptides. Until now, scientists were not sure if short peptides had any biological function.
Prof. Etta Livneh of BGU’s Shraga Segal Department of Immunology, Microbiology and Genetics has shown that single short peptides in fact have a very important role – as a kinase inhibitor that can slow tumour growth and invasion, cancer cell survival and metastasis.
Proteins (and protein kinases in particular) propagate signals that carry instructions to the cells and dictate cell fate. There are more than 500 different kinases in the human body.
With cancer, a kinase erroneously tells the cells to divide and reproduce in a rapid and uncontrollable manner. But the flipside is also true: if a kinase can be inhibited, it should block the proliferation of cancer cells.
And that’s “just the tip of the iceberg,” said Livneh, whose discovery has been a decade in the making. “Now that we know that at least some peptides have a biological function, we can begin to discover the roles of many more.”
Kinase inhibitors are already one of the hottest areas of cancer research, in some cases replacing chemotherapy. Livneh’s research will allow scientists to better understand how to control this cancer-fighting technology.
The research was supported by a grant from the Israel Science Foundation and published in PNAS (Proceedings of the National Academy of Sciences of the United States of America).
Israel21cis a nonprofit educational foundation with a mission to focus media and public attention on the 21st-century Israel that exists beyond the conflict. For more, or to donate, visit israel21c.org.
Rick Tash is the primary caregiver of his wife, Bambi Fass, who is dying of cancer. (still)
A new short film by Dr. Jessica Zitter and Kevin Gordon gives an intimate look at the toll involved in caring for a loved one at the end stages of their life.
Zitter happened upon palliative care, she said, before “anyone even knew how to spell the word ‘palliative,’” after she had “finally realized I’d been feeling a lot of burning walls of stress in the way that I had been practising medicine.”
A physician in Northern California, Zitter said, “I’d been treating patients like objects on a conveyor belt, instead of as people, and then began to practise, for the next two decades, palliative care and critical care at the same time, providing me with a strange vantage point within the world of medicine.
“I was inspired to write and share stories about what’s going on in hospitals, and about how we’re treating the seriously ill among us … and I also continue practising medicine.”
Zitter at first opted to educate the public via books, but then she encountered the power of film. “I realized, all these messages I’m trying to get across to people – about medical culture and about what we want to think about differently – they’d lend themselves so well to film, to show the experience of the patient. If a picture is worth 1,000 words, I realized that a movie is worth much more than 1,000 pictures.”
In the 24-minute Caregiver: A Love Story, the audience meets a woman Zitter met at synagogue, Bambi Fass, and Fass’s husband, Rick Tash. Fass was dying of cancer and Zitter offered palliative care, but was refused, until Fass’s condition became dire.
“She called me and she was extremely sick and had deteriorated,” Zitter told the Independent. “She said she needed help and, that day, we got her into hospice care. She was so, so sick and in so much pain and suffering. That day, her life turned around for the better. All of a sudden, she was living again.”
That is when Zitter asked Fass if she would be willing to be filmed. “She replied, ‘I want to help someone else … if you want to write about me or anything.’ She knew about my book. That’s when we got a film crew. I thought the film would be about her, an amazing woman. What I didn’t realize then is that it would actually end up being about her husband as the main focus. I thought he was just going to be the guy who opens the door for the hospital, but he ended up being a central character.”
Fass had sat a few rows in front of Zitter at their synagogue. “She had a long braid of hair,” recalled Zitter. “I’d always see it from behind. I didn’t know her really, but I did wonder…. She was very, very sick…. I knew she was, because she had brain metastasis. She was vivacious and funny. She was staring her death in the face and she still had a sense of humour. She was a hero, a really fascinating character.”
It took almost two years to put the movie together and to fully grasp the importance of sharing it with the world.
“I never realized – the invisible public health crisis, family caregiver burden – how much this story needed to be told,” said Zitter. “The original intention I had for this film was to show how, once you make the right decision, everything will be OK…. I then realized how naïve that message was. It’s not that easy. You can make decisions that feel like they’re going to be the right choice for the patients, but will it be the right choice for the family as a whole? We have to be much more holistic when we think about our patients. It really needs to include our families as well.
“Even in a loving, caring and organized community like ours, we aren’t necessarily focusing on and supporting the family caregivers among us,” said Zitter. “And there are a lot of family caregivers – rising numbers – with very little support. An organized community has been unable to attend to this man [Tash] who is deteriorating in front of our eyes, because they don’t know what to do with him. We’re not primed to think about caregiver burden as an urgent task.”
Zitter found that her synagogue had no committee to assist family caregivers, and her hospital community was also not paying attention to caregivers.
“They’re an invisible workforce that we don’t pay attention to,” said Zitter. “We don’t attend to them, we don’t think about them, we don’t identify them, we don’t include them in the conversation. But they’re a huge part of our workforce … and we’re just ignoring them.”
Zitter’s hope is that people from various communities, including synagogues, churches and mosques, will watch this movie and then establish a workshop for family caregivers and identify ways to support caregivers. To that end, she has created a keynote message and an hour-long program to raise awareness of this crisis and do something about it.
“The best place to start is at caregiveralovestory.com,” she said. “You can go on the website and see public screenings that are coming up and other ways to watch the film yourself, whether bringing it to your organization or watching it privately.”
Currently, Zitter is working on a film about deathbed spirituality and prayer, as well as on a movie about Ethan Sisser, a Jewish Buddhist.
“Ethan was an amazing, amazing guy,” said Zitter. “He died about two or three months ago. He has a community following on social media. A lot of young people were just so moved by the way he viewed his death and the bravery and beauty of his final days…. We’re making a film about him, which will be beautiful and, hopefully, you’ll see that soon.”
Loolwa Khazzoom in Iraqis in Pajamas’ video for their song “Cancer Is My Engine,” to be released on Chanukah. (photo by Ailisa Newhall)
With shared themes of finding light in the darkness, Seattle-area band Iraqis in Pajamas is releasing the video for their song “Cancer Is My Engine” on Chanukah.
Amid the global pandemic, volunteer cast and crew drove in from across Washington state, donning masks and practising social distancing, to film the music video against the backdrop of the Olympic Peninsula forest.
The video tells the story of front woman Loolwa Khazzoom’s choice to reject the conventional thyroidectomy treatment for thyroid cancer, despite medical and financial pressure. Khazzoom instead chose to approach the diagnosis as an opportunity for radically transforming her life, such as by going vegan and practising numerous forms of mind-body medicine. (See jewishindependent.ca/healing-powers-of-song.)
After cold-stopping the growth of the nodules for years, through these measures, Khazzoom moved to Washington state from California, returned to her lost love of music, and launched her band, which combines ancient Iraqi Jewish prayers with original alternative rock. Immediately following, the thyroid nodules began shrinking. Through magical realism and metaphor, the music video reveals how, by listening to her inner voice, Khazzoom self-healed through her actual voice, by singing – the ability to do which may have been destroyed by a thyroidectomy, given the proximity of the thyroid gland and vocal chords.
The video begins with Khazzoom standing at the edge of a cliff, singing the opening line of the song, “Cancer is my engine.” As she sings, a candle is lit by her voice. She is transported to a forest, where she is searching in the dark with the light of that candle. She comes across a stuffed bear – representing Khazzoom’s mother – and picks it up, then continues on her quest.
An insurance agent and doctor appear and begin chasing Khazzoom. As she runs from them, she comes to a fork in the road – with the doctor on one side and the insurance agent on the other. She pauses, then runs forward, where there is no path, heading toward the light. She keeps running until she comes to a cliff and jumps off it.
She lands in the middle of a drumming circle and starts dancing wildly. A few scenes later, she is drumming in the middle of the circle, and everyone else is dancing around her. Both circles represent the pivotal importance of music and dance in Khazzoom’s healing. The video then shifts from magical realism and metaphor to real-life shots, with the band playing music in a vegetable patch in Khazzoom’s garden, representing Khazzoom’s regimen of juicing daily and eating a whole-foods, plant-based diet. The video ends with Khazzoom standing on the edge of the cliff and singing the last words of the song, in the original a cappella Iraqi Jewish prayer that exalts the power of the Divine.
The video was sponsored by nonprofit Healing Journeys and funded by the Lloyd Symington Foundation, both of which offer programs for people living with and healing from cancer.
Studies on the healing possibilities of music are documented in books like The Power of Music by Elena Mannes and The Healing Power of Sound by oncologist Dr. Mitchell Gaynor, and the National Institutes of Health has launched a series of studies on the healing powers of music. Whether singing lullabies or sacred chants, mothers and religious leaders have known for millennia what scientists are only beginning to understand. Singing bypasses our mental process, both awakening and soothing us at the core. Among other benefits, we are able to access, release and heal from the experience of trauma, without having to recount and risk getting triggered by painful memories.
Khazzoom has had a career as an educator, activist, journalist, health coach, and more, all with the central organizing principle of individual and collective healing. Her work has been featured in media including the New York Times and Rolling Stone; she has presented at venues including Harvard University and the Simon Wiesenthal Centre; and she has published two books, which are taught at universities nationwide.
Iraqis in Pajamas comprises Khazzoom on both vocals and bass, Sean Sebastian on guitar and Robbie Morsehead on drums. The trio opens up audiences to contemplation about trauma, healing and transformation, whether addressing domestic violence, cancer, racism, mental illness, street harassment, family caregiving or national exile.
With the growth of ancestry services like 23andMe, we are more aware than ever of our genes and how important they are. What we may not know is how our Jewish ancestry puts us and our children at greater risk for health issues.
Join BRCAinBC for a virtual event Oct. 1, at 7 p.m., to learn about your Jewish genes and the tenfold increased risk for Jewish people for certain cancers, including breast, ovarian, aggressive prostate cancer, pancreatic cancer and melanoma. Not only will you learn more about your risk, but you will learn where and how you can get tested and what you can do to prevent cancer.
BRCAinBC is a group of individuals concerned about the effect of the BRCA genes on the Jewish community in British Columbia. The project was born out of the realization that many members of the Jewish community are not aware of the risks of carrying the BRCA genes and the risk of genetically linked cancers – BRCA 1 and 2 is the code for variant mutations of two genes known to increase the lifetime risk of several serious cancers in both women and men.
Your Jewish Genes: A Virtual Learning Event will feature speakers from across North America, including Amy Byer-Shainman, aka “the BRCA Responder,” and author of Resurrection Lily: The BRCA Gene, Hereditary Cancer and Lifesaving Whispers from the Grandmother I Never Knew; Matt Seaton, peer navigator with FORCE (Facing Our Risk of Cancer Empowered); as well as members of the B.C. Cancer Agency’s Hereditary Cancer Program and High Risk Clinic, including Dr. Rona Cheifetz, surgical oncologist, and Allison Mindlin, genetic counselor.
For more information about BRCA genes and BRCAinBC, visit brcainbc.ca. To register for the Your Jewish Genes event, go to yourjewishgeneswebinar.eventbrite.ca. Tickets are by $1, $18 or $36 donation towards the BRCAinBC bursary program, which supports access to genetic testing for Jewish people in British Columbia. No one will be turned away for lack of funds.
Seattle-based Iraqis in Pajamas, left to right: Sean Sebastian, Loolwa Khazzoom and Robbie Morsehead. (photo from Iraqis in Pajamas)
How do you take the wisdom of surviving and turn it into beautiful things?” asked Loolwa Khazzoom, front woman for Seattle-based punk rock group Iraqis in Pajamas, during an interview with the Independent recently.
One cannot easily classify Khazzoom, a cancer survivor, in a succinct journalistic fashion. Aside from being a musician, she is a writer, an activist, a polyglot and a journalist. Raised in California to an American mother and an Iraqi father, she was heavily involved in the Jewish feminist movement of the 1990s and the founder of the Jewish Multicultural Project, which provided resources about diversity to Jewish groups.
As with her stage presence, she transmits a raw, infectious energy in conversation, ever more so as Iraqis in Pajamas started this month by releasing a new single.
“Life brings with it an endless number of challenges. Negative experiences can be turned into art,” Khazzoom reflected.
“I was diagnosed with cancer in 2010,” she said. “I rejected the conventional option of surgery – despite a doctor proclaiming that I would die without it. ‘You can’t think your way out of cancer,’ he said, to which I replied, ‘You don’t know what I can do.’”
After the diagnosis, Khazzoom researched natural approaches to healing, and radically altered her diet – pulling everything out of her cupboards and moving to an all-organic and vegan diet. Through these and subsequent diet and lifestyle changes, she said she was able to stop the growth of the nodules, which remained stable for the next five years. The nodules began shrinking when she returned to music – her lost passion.
Formed in 2015, Iraqis in Pajamas combines ancient Iraqi Jewish prayers with its own original style of punk rock sung in English, Hebrew and Judeo-Arabic. The band’s songs examine a wide number of social issues – domestic violence, racism, mental illness, family caregiving, national exile – and cancer.
The band received a grant to produce the song “Cancer Is My Engine,” which was released March 1. “Cancer Is My Engine” combines an ancient Iraqi Jewish prayer with original punk rock, sung in Hebrew and English – challenging conventional medical approaches to cancer and putting forth the concept of music as medicine.
The song was produced by Bard Rock Studio, an independent Northwest music producer, and funded by the Lloyd Symington Foundation, which supports people living with and healing from cancer.
According to Khazzoom, singing has the ability not only to uplift but to heal. “This shift in consciousness is why, after hearing a particular song, our mood may change abruptly, or we suddenly may feel transported back in time. Singing bypasses our mental process, both awakening and soothing us at the core, without effort. Among other benefits, we are able to access, release and heal from the experience of trauma, without having to recount and risk getting triggered by painful memories,” she said.
Iraqis in Pajamas, which also includes drummer Robbie Morsehead and guitarist Sean Sebastian, got its name from a reputation Iraqi expatriates in the Israeli city of Ramat Gan had for putting on their pajamas when they had arrived home and the work of the day was completed.
The band is currently developing its next project: a debut double album. One CD will be an original a cappella version of 10 Iraqi Jewish prayers, which the band incorporates into its songs, along with a story about each prayer and why they chose it, while the second CD will be the 10 songs with those prayers woven through them. The project is sponsored by Allied Arts Foundation in Seattle and, in February, the band launched a fundraising campaign to develop, produce and promote the album: secure.givelively.org/donate/allied-arts-foundation-seattle/iraqis-in-pajamas.
Khazzoom’s first book, Consequence: Beyond Resisting Rape (2002), is a look at sexual harassment in everyday life. In 2003, she edited The Flying Camel: Essays on Identity by Women of North African and Middle Eastern Jewish Heritage, an anthology of the writings of Mizrahi Jewish women. Her writing has also appeared in the Forward, Tikkun and Lilith, as well as the Jewish Independent and other Jewish publications; she has written several times about Israeli hip-hop for Rolling Stone.
Iraqis in Pajamas hopes to find venues in Vancouver and on Vancouver Island in the coming year. For more information about Khazzoom and the band, and to listen to their music, visit loolwa.com. To purchase their music, go to iraqisinpajamas.bandcamp.com.
Sam Margolishas written for the Globe and Mail, the National Post, UPI and MSNBC.
Libby Znaimer was the keynote speaker of the inaugural BRCAinBC event One in 40: From Awareness to Empowerment. (photo from zoomerradio.ca)
An estimated 200 people gathered at Congregation Beth Israel last month for One in 40: From Awareness to Empowerment, the inaugural event of a project to increase knowledge of the cancer risks connected to the BRCA1 and BRCA2 gene mutations.
The Jan. 8 event title is based on the fact that, for people with Ashkenazi Jewish heritage, there is a one-in-40 risk of carrying the BRCA genes, which increase the risk of genetically linked cancers. This rate is 10 times that of the general population. Elizabeth Wurzel, author of the bestselling memoir Prozac Nation, who passed away in January from breast cancer and was found to carry the gene mutation, called BRCA “the curse of the Ashkenazi Jews.”
One in 40 was organized by BRCAinBC, a provincial group spearheaded by members of the family – wife Jane and daughter Catriona – of Geoff Remocker, who died of aggressive prostate cancer. BRCAinBC’s objectives are to increase awareness among community members and health professionals, educate community members about genetic testing options and reduce the fear and stigma that can surround genetic testing. (See jewishindependent.ca/brcainbcs-inaugural-event.)
Toronto-based broadcaster Libby Znaimer, the keynote speaker, led the audience through her story. In January 2009, after enduring a six-and-a-half hour operation, the only possible cure for pancreatic cancer, she didn’t consider the odds of survival that favourable. Pancreatic cancer is the only form of cancer for which the survival rate is in the single digits, said Znaimer in her talk.
She not only has survived pancreatic cancer, but breast cancer, which was also BRCA-related.
Znaimer has made a film about her experience, Cancer Saved My Life. “It’s more than just a catchy title to get eyeballs on my documentary. It’s true. And I am living proof that, when it comes to the BRCA mutations, there is good news, in addition to the bad news,” she said in her remarks to the audience, which she shared with the Independent.
When Znaimer found out she had breast cancer in 2006, she was not surprised. Because of her family history, she knew that she was at a greater risk. However, she said, she did not think breast cancer would kill her.
“I remember being at a boozy dinner just a few days after being told I had cancer. I was very lucky that a former neighbour of mine was visiting,” she said. “She was working in the States as the head of breast radiology at one of the famous Mayo clinics and, based only on what she knew about my family history, she pointed her finger at me and said, ‘Sweetheart, you have bad genes and, if I were you, I’d bite the bullet and have both my breasts and my ovaries removed … as quickly as possible.’”
Znaimer cited a study in Toronto in which Jewish women were tested for the mutation regardless of family history. Fifty percent of those who tested positive would not have qualified for testing because of their family history. Results from similar studies in the United Kingdom and Israel produced similar outcomes.
“And, having one of those mutations doesn’t just mean you’re at an exponentially higher risk of getting those cancers once,” she warned. “You are also more likely to contract a second cancer, not a recurrence – a completely new other cancer.
“It is especially gratifying for me that my case has helped others and to be here to talk about the importance of getting tested,” she said. “It is the dawn of a new decade. My second decade as a survivor since Cancer Saved My Life.”
The Jan. 8 educational evening also included panelists Dr. Rona Cheifetz, medical lead of the Hereditary High Risk Clinic, B.C. Cancer Agency; Dr. Intan Shrader, co-medical director, BCCA Hereditary Cancer Program; Len Gross, president of the Prostate Cancer Foundation of British Columbia; and Tovah Carr, a BRCA carrier.
BRCAinBC arose from the realization that many in the Jewish community are not aware of the risks of carrying the BRCA genes. They hope to support improvements in access to genetic testing throughout the province for members of the Jewish community, and to protect BRCA carriers from the potentially negative consequences of positive carrier status; in obtaining insurance, for example. For more information, visit BRCAinBC.ca.
Sam Margolishas written for the Globe and Mail, the National Post, UPI and MSNBC.
Jane Remocker and her daughter, Catriona, holding a photo of Geoff Remocker, who passed away in 2016 from pancreatic cancer. (photo from BRCAinBC Committee)
Education is a key goal of the upcoming One in 40: From Awareness to Empowerment event being held at Congregation Beth Israel on Jan. 8.
“BRCA 1 and 2 is the code for variant mutations of two genes known to increase the lifetime risk of several serious cancers, including breast and ovarian cancers and other cancers linked to reproduction in women and prostate cancers in men, as well as pancreatic cancers and melanoma in all genders,” explains the BRCAinBC Committee’s project primer. One in 40 is the probability of carrying the genes among Ashkenazi Jews – compared to a risk of 1/500 to 1/1000 in the general population.
The BRCAinBC Committee, organizer of the One in 40 event, describes itself as “a group of concerned members of the Jewish community in British Columbia, many of whom have been affected personally or in our families by the BRCA 1 or BRCA 2 genes and genetically linked cancers.”
The committee’s work is supported by Beth Israel, which is its home, as well as many other community members, organizations and institutions, including the B.C. Cancer Agency, the Centre for Israel and Jewish Affairs, the Jewish Federation of Greater Vancouver and the Diamond Family Philanthropic Fund.
“There are currently no efforts being made in British Columbia to create awareness or cover general genetic testing for people of Ashkenazi Jewish heritage – in the past, this was due to the prohibitive expense of testing,” notes the primer.
“There have been significant recent gains in the medical community around improving the affordability of testing for genetic mutations,” it continues, “however, awareness of risk is still low amongst members of the Jewish community and, currently, holding a risk profile of being of Ashkenazi Jewish descent is not sufficient to be covered for genetic testing under B.C.’s Medical Services Plan (MSP).”
The impetus for the committee and the One in 40 event was the death of Geoff Remocker of aggressive prostate cancer in 2016. After he died, his wife, Jane Remocker, and the family met with Beth Israel’s Rabbi Jonathan Infeld. She explained to the Jewish Independent in a phone interview that, as members of the congregation, there were donations being made to the synagogue in her husband’s honour, and the rabbi wanted to know where the family wanted to direct the funds. The couple’s youngest daughter, Catriona, who works in the healthcare field, suggested they do something with respect to BRCA genes. Since they weren’t quite sure what they wanted to do on the topic, the donations were held in a discretionary fund until Jane Remocker scheduled a meeting with the rabbi and her daughter two years later, in June 2018.
“By then, she and I had ideas and came up with our three basic goals,” Jane Remocker told the Independent. The three short-term goals of the committee were education and awareness within the Jewish community, and easier access to information about the BRCA genes; advocacy, which involves providing information about and access to screening options, both private and public; and fundraising to cover what has become the One in 40 community-wide education event and the BRCAinBC.ca website, which will be launched in January.
Since Geoff Remocker didn’t meet the criteria for B.C. Cancer Agency’s Hereditary Cancer Program, which offers genetic counseling and testing for “residents who may have inherited an increased risk for specific types of cancer,” he signed up for a B.C. Cancer study of drugs that treat prostate cancer, which included gene testing.
Remocker said he signed up for the study because, “as he said to me, ‘I don’t think the drugs will help me, I think it’s too late. But, if there’s a gene that’s driving this cancer to be aggressive and resistant to treatment needed, that knowledge will help other people.’” It was discovered that he was indeed a BRCA carrier.
Part of the issue, said Remocker about why her husband wasn’t eligible for the Hereditary Cancer Program, was that, while they knew some of her mother-in-law’s medical history, they knew nothing about her father-in-law’s side of the family, who came from Poland and Russia.
“And this is not uncommon,” she said. In addition to this generation not talking about health issues, in general, there wasn’t so much knowledge about health back then.
While a lack of family medical history can be one obstacle in getting genetic testing, she said, another is that many people don’t realize that men can be carriers of the BRCA mutant genes.
“They thought it was only a gene that affected women as breast cancer,” said Remocker. It is important, therefore, and a goal of the committee’s educational program, to make sure that Jewish men – especially if they have roots in Europe – know that they are possible carriers and, therefore, consider getting screening.
Confirmed panelists for the One in 40 event are Dr. Rona Cheifetz, medical lead of the Hereditary High Risk Clinic, B.C. Cancer Agency; and Dr. Intan Shrader, who, along with Dr. Sophie Sun, is co-medical director of the B.C. Cancer Hereditary Cancer Program. The panel will also feature medical oncologist Dr. Daniel Khalaf of the B.C. Cancer Agency and Jewish community member Tovah Carr, a BRCA carrier. There will be a chance for audience members to ask questions.
Keynote speaker Libby Znaimer of Zoom Media is national spokesperson for Pancreatic Cancer Canada; she is a cancer survivor and a BRCA gene carrier. Her personal fight against breast and pancreatic cancer is the subject of the 60-minute documentary Cancer Saved My Life, which discusses “the BRCA 1 and BRCA 2 gene mutations that predispose people to pancreatic cancer, and the connection between BRCA and breast and ovarian cancer,” as well as the “groundbreaking research going on in Canada and Israel, where there is a BRCA-rich population.”
The BRCAinBC.ca website will be “a one-stop place for people to go to get information about the genes and the mutations that indicate the cancer risk and where they can go for private screening if they don’t meet Hereditary Cancer’s criteria or they don’t want to wait,” said Remocker.
Hereditary Cancer has a long wait list, she said, so the website will have some options for private screening. “We’ve researched and found a number of accredited medical genetic labs that do specific inherited Jewish genes screening and we know that, [for] at least two of them, the results are accept[ed] by the Hereditary Cancer Program.”
Currently, the cost for private testing is about $250 US, said Remocker. This alternative means that, “instead of waiting six to 12 months to get your first interview with the Hereditary Cancer Program, you get a saliva test, you apply. They send the package to you, you send it back and you get your results anywhere from two to six weeks.”
A person can then take those results to their family doctor, she said, as a referral is needed for the HCP.
The website will also feature personal stories of those who have been affected by the BRCA 1 and BRCA 2 genes, as well as links to current research and resources.
Michelle Capobianco, the executive director of Pancreatic Cancer Canada, will be in attendance at One in 40, Catriona Remocker told the Independent. “[T]hey are considering working with us to roll out similar events to Jewish communities across Canada to improve awareness,” she said.
I used to wake up each morning wondering if I had Alzheimer’s yet. I dreaded the thought. Who wouldn’t? I used to imagine the torment of dealing with cancer; the diagnosis, the surgery, the chemotherapy, the radiation, losing my hair! I no longer think that way. I am no longer holding my breath waiting for the diagnosis that will lead me to my imminent death. What happened? I am now a cancer survivor; that is, after two years, my gynaecologist told me that I can now come in for a checkup once a year, rather than every six months.
Let me backtrack. I was diagnosed with endometrial cancer in October 2017. After denying the symptoms for three months, I finally went to my family doctor, then to the gynaecologist, then for an ultrasound examination, then a biopsy. The diagnosis: endometrial cancer, stage 2. I asked the medical students who board with me while doing their electives at Vancouver General Hospital about the cancer, the treatment and the prognosis. The most encouraging of their comments was, “Well, if you have to have cancer, that is the best kind to have.” Really?
My son came from Ontario to be with me for the surgery, a hysterectomy. My gynaecologist was excellent. I experienced one bad night in the hospital. I wanted to get out of the hospital so badly that my blood pressure went sky high (white-coat syndrome). I had to sign several waivers in order to march out of the hospital – against their advice. I never looked back.
That was on a Wednesday. On Thursday morning, a friend picked me up and we attended the advanced Hebrew class at the Jewish Community Centre of Greater Vancouver, as usual. On Saturday, I drove to the supermarket. On the way to the cashier, I bumped into my gynaecologist, Nancy Mitenko. She had a surprised look on her face, so I said, “Hi, it’s Dolores, your patient.” “Oh,” she said, “I know who you are, what are you doing here?” We both laughed. I felt great.
My physical trainers and my family knew of my situation but I did not tell my friends and associates about the diagnosis, the surgery or the radiation until it was almost over. I discovered that the reactions of most people to the situation is fear, for themselves, as they empathize with me. I read the look on their faces as panic and dread. It made me want to comfort them. At that point, I did not have the patience to tend to their anxiety. I knew exactly what they were feeling because I used to experience that dread when I thought about cancer.
Several months later, February 2018, I began radiation therapy at the cancer centre at VGH – 25 sessions, convenient parking in the building, pleasant technicians who, generally, were on time with their appointments; the hardest part was drinking the four glasses of water before the procedure. The treatments were painless, but, they did cause some side-effects, which were manageable. This month, at my two-year checkup, Dr. Mitenko told me that I am clear. “See you next year,” she said.
I have been on an intense learning curve, researching cancer treatments, analyzing my feelings about what had happened, dissecting my behaviours and my capacity to proceed under duress and, especially, I have given much thought to dying and death. The idea of dying does not frighten me anymore. We all will die, it is just a matter of when and how we will approach the process. I now assume that cancer may eventually reappear in my body, why not? The denial I experienced has been banished. I accept my death as inevitable – but I have taken control of the process.
I have given instructions to my sons to donate my body to the University of British Columbia Medical School’s body donation program, having completed all the forms necessary for that to happen. I have joined the organization Death With Dignity, which has a chapter here in Vancouver. I attended a meeting of DWD and was informed of the MAiD program, Medical Assistance in Dying. I have read about the requirements of the MAiD program and now know of several doctors who participate in it. I made an appointment with my lawyer in order to update my will and the various documents related to my requests for treatment and care if I should become incapacitated. My four sons have been advised of all these procedures and have the most up-to-date documents.
I am not in the least bit sad, or anxious or depressed. Rather, I am proceeding to do exactly what I wish to do with my life. I have a plan. I feel that I now have some control of my life and my dying and my ultimate death. This is empowering.
I recently celebrated my 80th birthday with a large, extended-weekend celebration including dinners, a party and a brunch. Three of my four sons were there, as well as my daughters-in-law, and five of my nine grandchildren. The most important element of that weekend for me was to watch the relationships between them deepen and become more meaningful. I am grateful to have lived this long. Anything more will be a bonus. I have accepted my mortality, I do not feel greedy, I do not ask for more. I am happy to welcome each day, to contribute to my family, to volunteer for the causes that I feel are important, to make a difference wherever and whenever I can. Death is my friend, and accepting the inevitable has freed me to be the most that I can be.
Dolores Luber, a retired psychotherapist and psychology teacher, is editor of Jewish Seniors Alliance’s Senior Line magazine and website (jsalliance.org). She blogs for yossilinks.com and writes movie reviews for the Isaac Waldman Jewish Public Library website.