"Last time I checked, a couple only able to have one or two children is still a family"

BRCA Support in Israel [Choose Life / Issue 792]

My journey of knowing that I am a carrier of the BRCA1 mutation began in New York 16 years ago as I was preparing to move to Israel. My mother asked that I get tested before moving so far from home because of our strong family history. After discovering that I was a carrier, I committed to doing the biannual screening that was recommended to me at the time.

A few years later, after a series of abnormalities had been detected, requiring multiple biopsies, the process of tracking and testing had become too difficult for me to manage emotionally and practically. I made the decision to have a risk-reducing double mastectomy with reconstruction. I was a young mother, wanting to focus on having my children and not worry about the gap in testing while pregnant. The fear of “if” or “when” they might find something became a constant in my daily life.

I had a wonderful support system in my family, the organization Sharsheret, and my doctors. Baruch Hashem, the process, although long, went well, and over time I healed, both physically and emotionally, and I was released from the fear I’d been living with. I knew, however, that at some later date, I would need to revisit things, as I would then need to make decisions about having my reproductive organs removed.

Ten years later, it was time for me to figure out how to proceed. I knew I needed to understand what the most up-to-date research was, schedule multiple appointments, and make a plan. What became clear relatively quickly was every road I went down led me to the same destination: Dr. Pnina Mor and the NOGA clinic in Jerusalem.

I reached out to the clinic overwhelmed by a rush of questions, fears, and nerves. I was met with someone at the other end of the line, offering to coordinate all the services I needed to take care of. They continued to help me navigate having an MRI, ultrasound, consultation with a surgeon and blood work, all with the least stress possible. The first time we went to the clinic, we were met with a smiling face, sensitivity, and a plan. As time moved on, I had the surgery and continued to do whatever follow-up was needed. I always had the name and number of someone there at the clinic to help me.

The clinic’s purpose is to help reduce the ongoing stress associated with the constant threat of illness, as well as provide the screening strategies recommended to ensure these women’s medical well-being. NOGA combines the work of physicians, nurses, psychologists and genetic counselors to produce a holistic health promotion model allowing women to complete a number of appointments within a day.

Pnina understood the need to encourage carriers to join specialized multidisciplinary high-risk screening clinics, offering a biannual “one-stop shop” where all screening tests are performed on the same visit. Such clinics are important not only for early diagnosis and increasing compliance — surveillance and early diagnosis of breast and ovarian cancers in BRCA mutation carriers has been shown to decrease morbidity and mortality from related breast and ovarian cancers — but are also instrumental in providing psychosocial support, appropriate screening, and conveying knowledgeable information regarding fertility, risk reduction surgeries, treatment, use of contraceptives and hormone replacement, and referral to other disciplines as needed.

It’s amazing to note that today, the clinic serves 1,600 BRCA mutation carriers from all over Israel. While being a carrier is not something that defines me, it is forever a part of me. Despite the challenges that come with it, it has also given me the opportunity to meet and connect with so many inspiring people, and has planted the motivation within me to see where I can be of help to this community and advocate for our health, both physical and emotional.

Liora Tannenbaum, Jerusalem

We’ve Tried It All [Inbox / Issue 792]

I’ve been dismayed and rather shocked over your coverage of HG. Publishing an article and inbox letter that suggest a simplistic solution to a serious and very often life-threatening pregnancy condition is surprising.

Those of us who suffer with HG and have gone through the horrors multiple times, and have tried everything, from changing our diet and health regimen in the years leading up to the pregnancy, to consulting with every specialist, trying any and every healing modality from medical to hypnotic and everything in between; those of us who’ve tried every medication and IV and inserted PICC lines into our bodies; those of us who fall down just trying to get from the bed to the restroom and who give up our jobs and don’t speak to our children for months, and can’t even keep anything down, which lands us in the ER week after week; those of us for whom just listening to someone speak can make us sick and nauseous for days… to us, it’s really quite insulting to say that a plant-based diet and incorporating certain meds will help. It’s like telling us to eat ginger. We can’t eat. And we’ve tried it all.

To those of us who know what we’re getting into when we get pregnant and have to muster up the courage to face death willingly for the privilege of bringing down another soul; to those of us who are willingly lying in bed for three or six or nine months feeling completely depressed and alone while our muscles shrink and atrophy but we can’t get up even if we try; to those of us who get excited and hopeful by the sight of the next dose of our pills that didn’t help two hours ago, but maybe this time they will; to those of us for whom the sight of the home health care nurse coming with our banana bags of IV fluid means we won’t die today, but boy, will we feel every second and wish we could just crawl out of our bodies, because nothing in the world can help pass the endless, nauseous time that refuses to budge… we all wait and hope and pray for a solution and a cure.

But the one offered here — while it might help a regular pregnancy — is really insulting to those of us who are now getting messages and forwards from friends and family saying “See? There is a cure! Here!” As if we haven’t tried it all.

Tremendous sensitivity and extreme medical expertise by professionals are necessary when offering solutions to dangerous, traumatic, and extremely difficult and painful conditions.

Hoping for a solution soon,

Name Withheld

Still a Family [Emerging from the Whirlpool / Issue 791]

In issue 791, your article about HG was informative and eye-opening, especially to women who have relatively normal pregnancies. However, there were a couple of lines that made me pause: “I’m going to find a way out of the clutches of this monster. Because I want to have a family.”

Hmmm. The author was expecting her second child at the time. While it’s not the typical frum family size, last time I checked, a couple only able to have one or two children is still a family. There is no need to stigmatize and marginalize those who don’t fit the typical frum profile.

A Reader with Two Kids in NJ

(Originally featured in Family First, Issue 794)