Rachel Green, 28, ultra-orthodox teacher
Hmmm… am I frightened? Because I’m starting chemo next week? Yes, I am, but not for the reasons you think. I’m not afraid of the throwing up or being tired all the time. I dread those things — sure — but I’m not afraid of them.
My Abba was sick for a very long time. As the only daughter, I stayed home and took care of him while all my brothers studied at the yeshiva. I was the last one of my class to marry, not that I’m complaining, but for ten years I took care of Abba while my mother worked, and so I have seen plenty of sickness. I’ve been prepared for it — I know it. What I’m terrified of is not being able to have children. Last week Dr. Weis looked at a clipboard, not at me, as he read down a list of chemotherapy side effects. “Of course you can’t get pregnant during treatment,” he said, “and there is some risk of permanent infertility.” He kept going down the list. I couldn’t breathe.
My mother always told me that an Orthodox woman’s two happiest moments in life are the bar mitzvah of her eldest son and the wedding of her first daughter. I knew that because I married late, I’d probably only have six children rather than eight or nine, but I never imagined none. The total shame! The loneliness! The pitying looks at synagogue. The charity Shabbos invitations. I never imagined. No brit milah for our infant son, no little bodies to kiss goodnight or cook special foods for. No dirty fingerprints to wipe off doorposts. [Beat.] No one to say Kaddish for David and me.
God commands, “Be fruitful and multiply.” The rabbis say this means we should have at least two children. Sometimes I go to the mirror and look at my naked chest. I can’t see them, but I can imagine those cancerous cells growing, reproducing relentlessly beneath my flesh. Isn’t it funny, the irony of it, that I might be denied the blessing of children because these microscopic cells won’t stop reproducing?
Jeffrey Bloomberg, 43, patent attorney; son of breast cancer patient Sonia Bloomberg
So, you want to know about my mother. She was diagnosed in June, 2003. June 14th at a 2:15 appointment. Pretty classic — she’d felt the lump while in the shower. Lumpectomy didn’t work, wasn’t enough, they started her on chemo.
You see, there are these genes, BRCA1 and BRCA2 — normally they act as tumor suppressor genes, you know, they keep cells from growing out of control, but if they are mutated the woman has a higher risk of developing breast cancer. Or ovarian cancer. It makes sense, the names I mean — BR is “breast” and CA is for cancer. Less than 1% of the general population has a BRCA mutation, but 1 in 40 Ashkenazi Jewish women have it. 1 in 40!
That doesn’t mean that all those women with the mutation will get cancer of course, but it means they are more likely to get it. Generally women — without the BRCA mutation — have a 12% likelihood of getting breast cancer — now I’m not scoffing at that, that is no small beans. But a Jewish woman — or any other woman, for that matter — with the BRCA mutation has an 85% likelihood of getting the cancer in her life. Wait, I think that’s the stat, yeah, 85%. Those are some terrible odds!
Amy Bloomberg-Rich, 41, defense attorney; sister of Jeffrey, daughter of cancer patient Sonia Bloomberg
After our mom started chemo, they told me I should get tested. Tested for what? I asked. It’s not contagious! Her doctor told me to get genetically tested. He said I should find out if I had bad genes before I made “uninformed life decisions.” [Says the next three words slowly.] “Uninformed life decisions” — was that the new euphemism for “having children”? Or just for keeping my potentially cancerous breasts? I thought about getting tested. Seriously, I even wrote out two opposing opening statements: one arguing pro and the other con. [Laughing.] Oh yeah, I even delivered the opening statements to myself in front of my mirror just to see if one looked more convincing.
Jeffrey Bloomberg continues:
The numbers are crazy! We Jews make up only 2% of the US population, but one-quarter of this country’s BRCA mutation carriers are M.O.T.s — sorry, Members of the Tribe. Why? you ask. Why us? I was plagued — huh, “plagued,” interesting word choice — anyhow, was plagued with this question. Basically, they think the gene mutation just randomly came about 2000 years ago in Eastern Europe. Basically… because Jews in Eastern Europe were really isolated and kept in small pockets of communities, mechanisms of genetic drift and the “founder effect” came into play.
Ummm, how do I explain? [Beat.] In population genetics, there’s a very very small chance that any given mutation will occur. But in a small population, you know, like the Jews, a couple instances of bad luck have a much more pronounced effect. Oh, and this German guy defined the “founder effect” — which is when a small population, like Ashkenazi Jews, have less genetic differences than the population at large has, and so if they mostly inbreed, that group will have people more genetically similar. Not only will they look more alike as a result, but they’ll have more mutations in common than other people. Most of the Jews in the U.S. are Ashkenazi Jews, which is why this is really an issue here.
I’ve never really liked science. Biology was okay, but chemistry was a disaster. But now… . I hang on to the words of the articles I read like a drug. I need the words.
Amy Bloomberg-Rich continues:
Why not get tested? For hundreds of years, they’ve said we have “bad genes” before they tortured us, before they killed us. Genocide, like the Holocaust, was based on the claim that Jews are tainted with mutant genes. Skulls were measured by Nazis to prove this.
I know that all subsets of people have their own susceptibility to different genetic diseases. That everyone has mutations. But, this looks different to people who hate Jews. Yeah, they’re still out there. I know this is irrational, but I can’t let myself get genetically tested. I can’t stomach the idea that someone could theoretically use my test to justify a claim that Jews are born inferior.
Jeffrey Bloomberg ends:
I don’t know what else to say. Mom and I… we can’t really talk about it, I mean her feelings, and the lump, too, I guess. I go with her to the hospital and don’t know what to say, what to do. [Beat.] I hold her hand and, well, this scenario is so new to me. So I went to the library and learned everything I could about breast cancer, about Jewish women and breast cancer and that I can talk about when I go to the hospital with her. That’s how I say, “I’m with you, mom, I love you” — by talking clinical, intellectual, but also getting, feeling closer.
Noah Gordon, 63, conservative rabbi
It was five years ago, on a Sunday afternoon, that a congregant of mine first came to my office at Beth Israel synagogue and asked me about genetic testing. Should she get tested? She was the first to ask, but not the last. So, I started researching what the rabbis had to say about this testing and what halakhic precedent there is.
Of course, all over the Torah is the guiding principle of pikuah nefesh — preservation of life above all else. So I really need to tell female congregants that Judaism says they have to consider this test, because this test could protect their lives.
You won’t believe this, but more than 1500 years ago, Talmudic scholars described a genetic test performed by rabbis! If a baby boy bled heavily after circumcision, the rabbis excused any of the baby’s brothers born later from this ancient ritual! They also exempted any of the boy’s cousins from circumcision. But if the father of one of these children remarried, the rabbis restored the ceremony. [Smiling broadly.] Get it? Even 1500 years ago, they knew that hemophilia runs in families from mothers to sons. Now, of course, we call that pattern “x-linked recessive,” but they knew it then!
But with breast cancer the issue of testing is not just one of pikuah nefesh. It’s not so simple. Even if a woman tests positive for a mutation, it doesn’t neccessarily mean she’s going to get cancer, and if she tests negative it doesn’t mean she won’t get cancer. If a Jewish woman doesn’t have the gene, she can still get cancer. Even if she tests positive for the, what is it, the… mutation and has the risk of cancer, what can she do about it besides having her breasts removed? She can have her breasts reconstructed after surgery, but she can’t yet have the gene, or the mutation, replaced in her offspring’s embryos!
Halakha talks about teruf ha-daat, an unsettled mind, and says that peace of mind is very important. So if gaining knowledge won’t do anything but cause distress, some women feel it’s better not to find out the information at all! I sympathize with this! Basically, there is nothing a positive test can tell a Jewish woman except that she should stay vigilant. A Jewish woman does not need to be told to worry! Have you ever met a Jewish woman who didn’t worry enough? Trust me, she worries already.
Jess Hoffman, 29, graduate student
“Get over it!” My boyfriend told me. “Stop dwelling on something you have no control over.” That insensitive asshole! How dare he minimize the pain, the all-consuming fear that I’m experiencing. Has he ever gone through something like this? No! He has no right to judge.
I am a “previvor.” Yeah, I’ve renamed it. I tested positive for the BRCA1 mutation and the doctors told me I am an “unaffected carrier” because I don’t yet have breast cancer. Unaffected?! Unaffected my ass!! I’m a previvor, I have been surviving this predisposition to cancer for the past two years! Should I still have kids? Should I take Tamoxifen?! Should I have my breasts removed?! My ovaries?! Yeah, I’ve given us “unaffected carriers” a name. I want us to have a voice!
Susan Mayhan, 72, sculptor
Well, both of my sisters had breast cancer, so it occurred to me that I would probably be a candidate. My younger sister died of cancer and not a day goes by that I don’t see her face. And think of her. Like many women, I discovered a lump in my breast while in the shower. My left breast. I called my oncologist right away, and he was dumbfounded that I had called him at home. “You called me at home for that?!” he said. I kept him as my doctor — what can I say? He was my internist, too. I had a mastectomy at the beginning of ’98 and then chemo.
It’s amazing how much support I got from the community. People visited every day. I’m not talking about just close friends — other people. Even acquaintances, whom I’d known vaguely at the JCC, called and said, “I had breast cancer five years ago, fifteen years ago…” or visited my home. My friend Esther would bring a book each week and read to me, because she knew I loved to read, but was often too tired. That was wonderful. This Jewish tradition of bikur cholim — you know, that we’re prescribed to visit the sick — it’s so unique, so important. Cancer can be so isolating, but people were always stopping by. (She yells to her husband in the other room.) Jacob, do you remember that? All those people?
People afflicted with serious illnesses often ask, “Why me?” I never asked the stupid “Why me?” I think it’s stupid — there’s no one to answer this question. [Beat.] I’m not sure if cancer changed my life so much. [Yelling.] Did it dear? Jacob says yes. I’m not sure in what ways.
Rivka Berkowitz, 35, hasidic mother & wife
I always loved my hair. It was this long, thick mane of brown curls. Before marrying, my mother bought me two wigs. One for every day, which is this one I’m wearing now, and one for special occasions. After Avram and I first got married, there were times I longed to take off the wig and dance through the streets with my real hair flowing behind me! But most of the time, I loved that Avram was the only man who would ever see my hair. And whenever he did, he buried his face in it, smelling it, running his hands through it. Treasuring me and the intimacy we shared. He said it made me look like a queen. Sometimes I’d walk through the streets singing, happy like a child with the secret. I had a crown of hair, hidden, beneath my wig just waiting for my husband to set free! Every morning when I put on the wig and tucked every last wisp of hair into it, I thanked Hashem for demanding modesty of me. I thanked Hashem for the depth it gave to my marriage. I put on that wig like I would imagine men put on a tallis — with a sense of duty and joy and God’s presence all around me.
They tell you that chemotherapy makes you bald, but I just sort of imagined that I would wake up one day and my hair would be gone. I was not prepared to wake up to chunks of hair on my pillow, fallen out in the middle of the night. I was not ready to comb my hair and find many many clumps clinging to the teeth of the comb. To shower and see the dark strands cascading down the drain. Of course I still wear the same wig as before, but I don’t hide a crown, I hide a disease. The secret I carry with me as I walk through the streets is different. It’s no longer one of intimacy. It’s a secret of shame.
Julie Adler, 13, daughter of Debbie Adler (deceased)
Yeah. My mom was sick for a while. Like three years with cancer before she died. Umm… every week at shul I stood up and said her name out loud before the mi she’berakh was sung. You know, they ask people to stand up in temple and say the names of people that God should heal. Well, I didn’t know if God would actually hear her name or what, but I fell into this routine of standing up and saying it each week. One week at temple, I was in the bathroom and… I missed, I missed the prayer. I don’t know why, I, like, felt so bad about not having said the mi she’berakh for my mom.
Sometimes I wonder if that’s why it didn’t work. But, anyhow, it didn’t work, and she died. Now, before the mi she’berakh, I stand up. I mean, I don’t say anything; I just stand up and sing for her.
Nadia Maccabee can be reached at Nadia_Maccabee@brown.edu