'Nearly Departed': Gila Pfeffer's tips on dealing with breast cancer

I’ve known Gila Pfeffer for a while now. She’s married to a childhood friend of mine, and when I’m in London or she’s in Israel we get together for drinks and commiseration. However, I didn’t know her whole story until I sat down with her to do this interview.

Now I realize that the person I considered to be one of the funniest and most down to earth is also one of the bravest. Not just because she worked hard to save her own life, eventually facing the cancer she thought she’d prevented, but also because she decided to write a book about it and is now saving lives with her story.

Nearly Departed is the memoir of a woman who, at 30, was the oldest living member of her family and determined to change her family’s fate.

Long before Angelina Jolie made news with her double mastectomy, Pfeffer rid herself of her “ticking time bombs” to prevent the cancer that killed her mother and her grandmother.

Plot twist – she got the cancer anyway.

A nice Jewish girl from Staten Island, New York, Pfeffer saw her mother die of breast cancer at the age of 42. Ten years later, she lost her father to colon cancer.

But her memoir isn’t simply a tragic tale of loss – it’s like a modern Disney movie where the heroine doesn’t seek a savior; rather, she gets the hell up and saves herself.

Her story, in short, is this: With a mother and grandmother dead from cancer before age 50, Pfeffer, the oldest of five, four of whom are girls, was determined to stop the “dying young” family pattern. She became extremely proactive in her health care, testing herself for BRCA (breast cancer gene, one of two that have been found to impact a person’s chances of developing breast cancer – she was positive) and having her four children within six years and planning to have a double mastectomy in plenty of time, way before the age of 40 when her mother was diagnosed.

“In my mind, if I stopped pregnancies by 35, I would have the surgery and beat the cancer timeline, since my mom was diagnosed at 40,” she says.

Except that the post-mastectomy pathology showed that the cancer was already there. A node dissection showed that although the tumors were small and newish, there was indeed micro mastitis – cancer growth – in the lymph nodes.

Shocked, angry, and terrified, Pfeffer prepared herself to do the thing she’d set out to avoid in the first place: eight rounds of chemo.

DETERMINED TO shield her children from the fact that their mother had cancer and to protect them from the terror she had experienced with both of her parents, Pfeffer says, “I didn’t tell my kids about the cancer until a decade later – they were age one, three, five, and seven when I had my double mastectomy. I told them I was having surgery to stay healthy and prepared them for the fact that I would need to recover for a while. Instead of using the emotional energy to tell them something that I would have to help them through, I used my energy to get through it myself and be there with them the best I could.”

Though she lost her hair due to chemo, she took to wearing a hat and wig. It took a lot of acting and creativity, but “God blessed me with non-inquisitive kids. As long as I was around for bed, bath, and dinners, which I usually was – and when I couldn’t, my friends took them for sleepovers – they didn’t ask many questions,” Pfeffer says.

“My way of coping was to keep it from them. I slept in a beret, and had answers ready. I think it was easier that they were so young. I shouldered the pain, anger, and frustration myself and did not then have to spend my strength on the kids.”

On a time schedule due to her husband, Phil’s, work relocation to the UK, Pfeffer’s doctors advised her to have her ovaries removed to prevent ovarian cancer. “In the span of 10 months at 34, I had a double mastectomy, node dissection, eight rounds of chemo, ovaries out, moved to London, and my kids were two, four, six and eight,” she reveals.

Pfeffer says she wrote her tale because she wants women to be inspired to take action for their health and feel permission to find humor in the darkest, most painful situations.

Laugh at cancer? Definitely. The cancer survivor’s wit and ability to find the humor in any situation surely helped her through the multiple surgeries, chemo, and grueling recoveries to save her own life. It also enables us to read her story with laughter, joy, and inspiration instead of as a terrifying cautionary tale to scare women straight.

It is also, for you romantics out there, a love story.

HUSBAND PHIL plays a large part in Pfeffer’s ability to emotionally survive her quest for physical survival, and the support he provides is a guide to any spouse who is watching a loved one in pain. It is also a love story of parent to child and sister to siblings, a desperate crusade to protect them from pain, suffering, and even the hands of fate.

Pfeffer says she is “reluctantly inspirational” because she would rather be inspiring in other ways. “I don’t like the words ‘fight’ or ‘warrior’ – they don’t sit well with me personally. I don’t look at it as a fight because it’s not a fair fight. It’s more of survival and doing what you have to do. I don’t want women to feel they have to be ‘tough,’ ‘warriors,’ or ‘bad asses.’ It’s okay to have breakdowns. I definitely did. The injustice of it all! I did all the right things. I put a moat around my castle with guards and sentries and alarms, and the enemy came tunneling into my living room.

“Humans have a strong instinct of self-preservation,” she explains. “I am the granddaughter of four survivors. I’m here because at 19 my grandfather stepped off a death march and hid in a barn. But everyone gets through it in their way, and I want women to control how they are being helped and what help they want.

“People will often do what they want to do for you, not what you need necessarily,” Pfeffer points out. “For example, if they offer dinner but you’re feeling good that day and want to be normal and cook, yet they insist on bringing you food – that’s for them, not for you.”

Husband Phil provided “outstanding” support. “He is a fixer and problem solver. It wasn’t easy to be a full-time lawyer at a big firm, with four little kids and a wife who was going through treatment that made her sick. He really stepped up. He took a lot of the brunt of my emotional pain – and picked up pieces. Like the time I needed the floor washed RIGHT NOW! Which leads me to this: Don’t forget to check in on the spouses; take them out for a beer, ask how they are, and be there for them.”

Genetics

The gene mutations BRCA 1 & BRCA 2 were discovered, ironically, in 1994, the year Pfeffer’s mother succumbed to breast cancer.

The rate of breast cancer in American women is one in eight (source breastcancer.org), meaning about 13%. A BRCA mutation gives carriers a 72% chance of developing breast cancer in their lifetimes. More importantly for this readership, according to the Centers for Disease Control, 1 in 40 Ashkenazi Jewish women has a BRCA gene mutation.

Men too? Yes. Men with BRCA2 variants, and to a lesser extent BRCA1 variants, are also at increased risk of breast cancer and prostate cancer. Both men and women with either of the two mutations are also at increased risk of pancreatic cancer, although the risk increase is low.

It was in 2005, some 11 years after Pfeffer’s mother died, that she learned about a blood test that could confirm what she already knew in her heart: that she was a carrier of a gene mutation that made her risk of breast cancer very high.

At 31, pregnant with her third child, she got herself tested for the gene. She had already planned to be finished having children by 35, since pregnancy exposes women to high levels of estrogen, which is another risk factor for breast cancer.

As the matriarch of the family, she felt a heavy obligation to save her siblings who were younger than she was when their mother died. Her baby sister was three years old at her mother’s funeral.

“Double mastectomy wasn’t my only option, but I asked for the highest octane solution and went with that,” she says.

Although her siblings supported her decision to prophylactically remove her breasts, they [themselves] wouldn’t consider such a drastic path. “Their response was, ‘We have your back, but we aren’t doing this ourselves.’” However, when her diagnosis came back as positive for cancer, the others sprang into action to get themselves tested for the gene.

Pfeffer says that had she had the surgery earlier and not found the cancer, things might have been very different – that the misery of the cancer, treatment, and the consequences of chemo, as horrible as they were to endure, undoubtedly saved her sisters.

Asked when, among all of this intense life-saving activity, she had a nervous breakdown, Pfeffer says the breakdown was avoided thanks to friends at Sharsheret, an American organization that supports Jewish women in the fight against breast and ovarian cancer.

Prevention

Different countries and health insurance plans cover various aspects of cancer prevention. In the UK, a newly rolled out program makes it easy to get tested for BRCA and get free preventative treatment if you’re positive. Jscreen in the US offers free testing, and in Israel you can get the blood test via your health care clinic.

“Assess your risk profile and speak to your doctor to see how at risk you are so you can see if gene testing is appropriate for you,” says Pfeffer.

In Israel, it is a simple blood test that is now covered by the health basket.

“Knowledge is power. When you know something, you can decide what to do about it. It’s much scarier not to know. I want women to feel a bit less afraid – to be bold enough to investigate what’s going on with your bodies.” Men can be carriers too! Don’t be afraid to test – you may save your life or that of your loved ones.

“We have to guard ourselves and save our lives. Every woman should be doing a self-administered breast exam every month. Follow breast radiologist @theboobiedocs and Dr. Eleanora Teplinsky (@drteplinsky) a gynecological oncologist – on Instagram,” she advises.

Feel It on the First is a campaign that encourages women to do a self-exam. Pfeffer brings attention to this by using humor and posing monthly for photographs with two spherical objects held up to her chest to raise awareness.

Early detection is still key to survival. Self-exams are there to look for something different – a change – which is why doing them monthly is important.

“Knowing your body means you’ll be more aware when something isn’t right. It will make us more empowered to advocate for ourselves. Don’t worry about being difficult, loud or annoying – say something – advocate for yourself!” Pfeffer stresses.

“Speak to your doctor. Schedule screening. Set reminders to make breast health part of your regular routine. I want people to see boobs everywhere because that means it’s on top of the mind. We have saved women’s lives with this top-of-mind mentality.”

Pfeffer hopes that reading her book Nearly Departed will give the reader a sense of permission to feel however they feel dealing with crisis and adversity. It should empower readers to take control of their health and get ahead of it while enjoying funny and endearing stories. “My brain works in strange and mysterious ways. I distracted myself to get through my crises; hopefully, it will entertain you.”

Whether you learn it by reading her book or through her social media, the breast cancer survivor and activist wants you to know:

1. Empowerment, vigilance, and prevention are key. Not being preventative is the more terrifying approach.
2. Never doubt the importance of humor in dark times.
3. You need to control the narrative of your own health. You get to decide what is helpful to you, whether that means being fawned over or if it’s being left alone. Be honest with yourself about what will make you feel good. Trust the ring theory – the person going through the crisis is at the center; husband and kids are in the next ring; then other family members; then friends, etc. You can dump into an outer ring, to others who are more removed, but not into an inner one of people who are closer.
4. Surround yourself with a supportive community that will honor your choices of what kind of help best suits you. 

For information about Sharsheret, including the Israel Initiative, see www.sharsheret.org/.

The writer is co-founder of Chochmat Nashim (Women’s Wisdom), which promotes women’s voices and a healthier Judaism through podcasts, articles, and communal projects. www.chochmatnashim.org/