It was the hiccups that scared me the most.

When my father was going through chemotherapy for lymphoma 9 years ago, he developed a terrible case of violent, virulent hiccups that persisted for days. In the story I told myself, it was the hiccups that ultimately killed him, making him too weak to battle both the cancer and the chemo.

So when I came home after my first chemotherapy treatment and started to hiccup, I immediately panicked. It wasn’t that I was afraid I would die – my lymphoma is a different, less aggressive kind. But would I hiccup for days, too? Would I bust or bruise my diaphragm through the relentless assault?

I called my doctor. She knew what the problem was immediately and prescribed a pill which paused the spasms and put my mind at ease. But it was the first sign that my treatment would be filled with surprises – not unlike my diagnosis just six weeks earlier for the cancer itself.

I’ve long harbored a grim curiosity about chemotherapy. While I hoped I’d never have to find out personally, I wondered: what’s it like to sit in an oncology or hematology daycare room with an IV in the arm? Does it hurt? Do you feel like vomiting the whole time? What happens when you get home?

I can’t speak for every patient’s chemo experience – there are so many different types of cancers and treatments and everyone responds differently – but I can tell you about mine.

Let’s start with the hospital. It’s actually kind of boring.

After needle finds vein, you pretty much sit around and wait while many milliliters of fluids in a procession of plastic bags hooked on a tall metal pole slowly make their way into your blood. There’s no feeling of pressure – the meds aren’t being propelled into your body by a pump. Indeed, the only time I really knew anything was happening was the shiver of cold that would hit me whenever the nurse changed the bag to blend up the perfect cocktail of cure.

Of course, it all starts with that prick. To paraphrase Harrison Ford as Indiana Jones, “Needles, why did it have to be needles!”

Even in normal circumstances, I’ve always hated getting my blood taken. While getting an IV inserted is not substantially different (it just stays in longer than for a blood test), I calculated I will need a whopping 21 IVs before my treatment is over.

Before you even get started, the nurse takes some blood. If your count is off, then it’s no soup for you today.

My particular treatment is nicknamed G-CVP. Each “letter” gets its own bag, plus there are a variety of “pre-meds” administered before the main course, mostly to prevent allergic reactions. Some of them make me drowsy. But I wake up when nature calls.

And it does – plenty during my usual 6-8 hour stay.

With all those fluids flowing into my arm, I need to pee a lot. No problem: there’s a bathroom nearby. But for my particular treatment, I also have an electric-powered box that regulates how fast the immunotherapy meds can drip.

The problem is, to walk to the toilet with my IV pole in tow, I need to disconnect the box from the power. But the electricity strip is located high above the bed. I can’t reach it comfortably with my IV arm.

One rule I learned quickly about getting chemo is: never come to the hospital alone. The accompanying person can quickly grab a doctor or nurse if there’s an issue or – most important – unplug you so you can go to the loo. If I had to wait for the nurse to disconnect me each time, I’d burst.

Other times, you need help maneuvering around all the activity going on in the room. One thing’s for sure: getting chemo in an Israeli hospital is rarely a solitary activity.

There’s the morning snack cart volunteer who brings the sandwich rolls with the super sweet strawberry jam, the chocolate Carlo puddings and a variety of drinks (“I’ve got tea and Pepsi, who wants?”); the afternoon lunch lady with the endless supply of potato chips and rubbery chicken schnitzel that makes a serving in El Al coach seem like a Michelin-starred meal; the Aldo gourmet ice cream truck (“I’ll take pistachio, please”); and the medical musician from the Haverut organization who is happy to strum a soothing song straight out of Psalms.

My wife Jody and I have developed a novel way of passing the time separately yet together. We call it our “in-flight movie trick.” When we fly on an aircraft with individual entertainment screens, we’ll pick out a movie we both want to watch, then press play at the same time.

We have two iPads at home, so for the hospital, I cue up the same TV shows. We tap play and go – no need to crane our necks towards a single shared screen.

When the last bag has drained, the nurse removes the IV with a gentle tug and we’re free to go. There’s no formal discharge, no waiting for papers to be signed – we all know the process will simply start over again soon.

As “uneventful” as the actual daycare experience has been for me, all those chemicals still wipe me out. Nor is that the end of the story. Once I get home, there will be a variety of side effects, both physical and emotional.

But I’ll have to save that for another column.

I first tried to demystify chemotherapy at The Jerusalem Post.

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There’s a dilemma among datlashim – the Hebrew acronym for formerly religious Jews – that Ellie Morris shared in a letter to the editor she wrote to The Jerusalem Post.

Morris was speaking with one of her children who told her that, “in a discussion he had with his datlash friends concerning how they wished to bring up their offspring, they all came to the same conclusion: They wanted their children to be like them – datlashim!”

The dilemma, of course, is that being formerly religious is, by definition, a one generation phenomenon. To be formerly, formerly religious would, in fact, involve becoming religious again.

But it’s a question that deserves to be taken seriously. If, as I cited in my column “Datlash 2.0 – The Elephant in the Room” (January 4, 2018), only 46 percent of those in the National Religious public who in 2002 defined themselves as religious still see themselves that way 10 years later – and yet those datlashim yearn for their children to be datlashim too – how then can the concept of datlashiot be sustained?

I decided to ask a datlash.

I met Eliraz a few weeks ago at a high-tech event where I’d been invited to speak. The 26-year-old Shalem College student was more than happy to describe what made her move away from the religious traditions she grew up with.

“My family kept Shabbat and kashrut at home,” Eliraz explained, “but my parents were very chill about everything. At school, though, there were all these rules. You had to have a shirt that covered your elbows. You couldn’t wear red. We always washed our hands before eating bread. At home, I could wear jeans and a tank top. While we washed before a meal, it was really just on Shabbat. So I developed this idea that there were two sets of rules – stricter school rules and more lenient home rules.”

Over time, Eliraz found this bifurcation suited her lifestyle. If it was too hot at her parent’s home on Shabbat and the air conditioner wasn’t on, she’d simply flip the switch. On Friday night, if she wanted to read, she’d turn on the light.

“I didn’t imagine anyone would get mad,” she continued, “since it was clear to me that there were two separate levels of laws.”

Eventually, Eliraz dropped both the school rules and the home rules entirely. Her parents were upset but not devastated. “My mother told me, ‘we raised our kids to ask questions and have critical views. So we can’t blame you for reaching your own conclusions.’”

Eliraz doesn’t want to throw it all away, though. When she has children, she said, “I want them to be able to go to my parents’ house for Shabbat and sing Shalom Aleichem. I want them to know what the traditions are.”

And yet, as a datlash, Eliraz isn’t planning to teach her kids about observance at home. So, how’s this going to work?

“It Takes a Village” is the title of Hillary Clinton’s 1996 book about raising children in America. It’s applicable for datlashim, too. Extended families can and must play a crucial part in the overall education of the “next generation” of datlashim – as long as everyone can remain open.

Eliraz’s parents live in the suburb of Efrat. After Eliraz moved to Jerusalem to attend university, she would want to visit on Shabbat – but not necessarily for the entire weekend. But how could she drive in and out? What would the observant community think?

Eliraz’s parents had a conversation with Efrat Chief Rabbi Shlomo Riskin. I contacted Rabbi Riskin to find out what he said.

“Do your kids know that you love them and nothing would make you happier if they stayed for all of Shabbat?” Riskin asked. “And do your children know that you have enough room and enough food for them to stay all of Shabbat? If so, even if they don’t wish to stay overnight, they should still come – however they come – so they can continue to experience the warmth, beauty and togetherness of Shabbat.”

Eliraz now regularly drives to her parents on Shabbat, as do many other datlashi children. There’s even a WhatsApp group specifically for rides into and out of Efrat on the Sabbath, Eliraz revealed.

It holds for holidays, too. Eliraz will be with family as always for Pesach Seder tonight. She’ll drive there and back, she told me. “I love being part of it. I just don’t want to observe all of it.”

Is this going to solve the dilemma of preserving datlash values to the next generation? Hardly. First we’d have to define what exactly datlash values are, something upon which datlashim themselves scarcely agree.

But it’s a start. And maintaining transparent and non-judgmental communication between parents, children and grandchildren is an important value of its own.

“When I ask kids who have rejected the lifestyle and religious approach of their parents what they want, they always tell me the same thing,” said Aryeh Ben David, who is the director of Ayeka, a Jerusalem-based Jewish education institute. “’I want to be seen and heard as myself. I don’t want to be loved with an agenda.”

“We all want our children to be like us to a certain extent, but also to be independent thinkers,” Ellie Morris wrote in her letter. “Yet we are not sure that as Jews, with Jewish continuity in mind, we are truly free to make that choice.”

Yes, we are, Ellie. A datlash loved and accepted at home is going to be a healthier, happier, more integrated individual, regardless of any particular religious outlook.

Maybe that’s the true datlash value system.

This latest in a series of articles on the datlash phenomenon first appeared in The Jerusalem Post.

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The TV club

by Brian on March 20, 2018

in Just For Fun,Reviews

What do the following have in common: A magical psychologist who can send his patients back in time, a 5-year-old with autism, a tawdry affair, and a dysfunctional Jewish family where the former patriarch is transgender?

Yes, they’re all quick descriptions for recent television shows. They’re also the programs we’ve watched as part of our weekly “TV club.”

Never heard of a TV club? Well, it’s like a book club in that group members all read (or in this case, watch) something together and then discuss it afterward. So the subject matter chosen needs to be on a topic that will generate lively debate, stimulate insights into human nature and in general keep participants on their intellectual toes.

Our TV club started nearly 5 years ago when we were watching the first of the programs on my list, Being Erica – a superb Canadian drama about a Jewish thirtysomething woman whose life is falling apart.

When we first meet her, Erica has been fired from her job, her boyfriend has dumped her and she lands in the hospital from a peanut allergy. While there, a mysterious “Dr. Tom” visits. He has the ability to help her deal with her traumatic childhood through time travel that allows Erica to revisit pivotal moments from her past.

My wife Jody and I watched the first few seasons alone. But then we thought it would be fun to invite some of our therapist friends (for some reason, a number of the people with whom we are close are in the helping professions) to join us and analyze each episode.

It was such a success that we didn’t want to stop. We expanded the group beyond psychologists. But Erica ended so we searched for another drama that would keep us talking. Amazon’s Transparent fit the bill.

Nominally about the transition of Mort to Maura, the award-winning series is more about the characters’ overall family dynamics.

Sometimes we get through an entire episode without stopping, but most of the time, we wind up pausing every few minutes so we can chat, fume, pontificate or learn. (It helps that one of our friends is a sex therapist; “Transparent” is so full of teachable moments.)

I haven’t heard of other TV clubs, but the idea makes a lot of sense in this era of “Peak TV,” when the best actors, writers and directors have moved from the big screen to the home entertainment center. And it’s more of a social activity than a book club, which is primarily a solitary affair punctuated by the occasional in-person meet-up.

Our TV club serves another critical function for the group, all of whom are immigrants to Israel: it’s a mini-family.

None of us have family in Israel beyond our own children. We have friends outside the TV club, of course, but getting together with the same people on a weekly basis (outside of, say, Shabbat) is a big deal and something we didn’t do before TV club.

We don’t just watch and discuss. Jody always makes popcorn and puts out tea. One friend brings cake, another a variety of multi-colored organic gluten-free vegan chips. And we share about our lives. What’s happening with work, kids and – lately – health.

When I was diagnosed with cancer a couple of months ago, the TV club was there for me – at first to listen as I juggled treatment options, then to offer help. I knew I could count on every member of the club. That goes way beyond TV.

At this point, we probably spend more time talking and less time watching TV when we get together.

There are some excellent shows that we won’t watch in the TV club. Anything with too much violence is out. I wanted to try Fauda with the group. We watched the first scene until I noticed at least half the group was shielding its eyes from too much tension.

TV has been my go-to screen for years, since I became too frustrated with the movie-going experience in Israel. I’d rather be at home with a few friends than with a bunch of strangers texting and talking throughout, even if the screen at the theater is bigger and I don’t have to worry about annoying our neighbors if we crank the sound system up too loud.

Plus, at home, I get to hold the remote control.

We’ve watched two other series over the years. The Affair (co-created by Israeli Hagai Levi who was behind HBO’s In Treatment) has given us lots of opportunities to yell at the screen. (“No, don’t go back to his house! What were you thinking!”)

Our most recent TV club show, The A-Word, also has Israeli roots – it’s a British remake of the Hebrew drama Yellow Peppers. Both revolve around an extended family coming to terms with the main couple’s son, who’s on the autism spectrum. (The 5-year-old boy in the British version also listens exclusively to late 70s punk and early 80s New Wave, which is an added bonus for this fan of that musical time period.)

Now we’re at a crossroads. The A-Word has ended its two-season run. The Affair doesn’t come back until the summer. And the future of Transparent is unclear now that actor Jeffrey Tambor has been ousted from the show for sexual harassment.

What should we watch next? You know our criteria. We are open to suggestions!

I first wrote about our TV club in The Jerusalem Post.

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Everything was worked out in the battle plan against my lymphoma. Or so I thought.

I was scheduled to start a combination of chemo and immunotherapy the coming Sunday morning. The chemo would zap the cancer cells that had grown mainly on the lymph nodes around the back of my abdomen, while the immunotherapy would recruit my body’s own defenses to target a specific B-cell protein gone rogue.

The remission rates were impressive with many people reporting up to 10 years of PFS – that’s “progression-free survival,” medical speak for the number of years without disease before the cancer returns.

My particular cancer is called “follicular lymphoma.” It’s not currently curable but is increasingly being seen as a chronic condition, like diabetes or high blood pressure. As long as you stick to your treatment and meds, you can live a relatively normal life.

“The chemo is not like you think from the movies,” a friend, who has the same kind of lymphoma as me, reassured me. “You don’t lose your hair. I barely had any side effects and they have these great pills that knock out the nausea in 10 minutes. That’s if you even get sick.”

All things considered, I was feeling pretty positive – raring to go and ready to beat the beast in my body.

Then I got a second opinion.

I met with one of the leading hematologists in the country, the kind of expert whose name, when you Google hematologists in Israel, is one of the first to pop up.

“You don’t need chemo,” he pronounced calmly in his Tel Aviv office, after reviewing my CT scans, blood tests and pathology results. “We can treat you with just immunotherapy.”

Now, despite everything I’d previously learned about how chemo’s not so terrible, it’s still, well, chemo, and if I could avoid taking on an unnecessary toxic burden, that seemed a better alternative.

“He says I don’t need chemo!” I excitedly told my main doctor back in Jerusalem.

“I’m not so sure,” she countered, and in her hesitation, my balloon burst into a thousand needles searching for a vein in vain. “Just doing immunotherapy usually results in a much shorter period of PFS. But it’s your decision.”

How do you decide something like that, with implications that go far beyond such pedestrian daily dilemmas as choosing a particular restaurant or deciding between buying an electric or gasoline-powered car?

My dilemma was one we all experience at times: How much risk and uncertainty can you handle?

In my case, was the toxicity of chemotherapy worth the likelihood (though without any kind of guarantee) of gaining more time until the lymphoma comes back?

Or was it smarter to buy just a few years today with the hope that one of the many newer immunotherapy treatments in clinical trial would be ready by the time I needed it?

Complicating the decision even further: There is no data that either direction makes a difference for overall life expectancy. And no one can say in advance how Brian’s body will react.

Back and forth I went, weighing this apple against that orange. I was suffering from Fear of Making a Decision – any decision, but particularly a wrong one.

Fear of Making a Decision (let’s call it FOMAD for short) is not exclusive to health, of course. It rears its indecisive head whenever any kind of really big choice is in play: choosing a partner, a school, a job, moving to a new country.

FOMAD is where its sister anxiety FOMO (the Fear of Missing Out) gets its Sliding Doors moment and nothing is the same after.

I felt paralyzed. How could I possibly decide?

“You’re so not paralyzed,” my therapist said to me. “You’re actively engaged in finding out as much as you can. You just haven’t come to a decision yet.”

My therapist was right (again). Since my diagnosis, I had met with some of the top experts in the field in Israel, including a third physician who’s been described as a “lymphomaniac.”

At the same time, I was doing my own intensive research, reading scientific papers and learning a litany of acronyms (GELF, PRIMA, FLIPI, R-CHOP, CAR-T and many more). I’d joined online support groups and talked at length with other follicular lymphoma patients about their experiences.

Investigating antibodies and treatment modalities had become a full-time job.

It was my wife Jody who helped me grapple with my decision-making fear.

“Given that neither option is going to kill you, can you be comfortable in whatever decision you come to, knowing that you’ll be making it with imperfect information?” she asked.

Jody, I realized, was essentially making a religious argument: Can you have faith, even where some things are as yet (and possibly will always be) unknowable?

The irony was not lost on me: I’ve spent much of the last decade moving away from religion thinking. And now the way to balance the risks ahead was to … have faith?

“Either choice is a risk,” my main doctor said after another one of our marathon “debating” sessions. “But it’s a calculated one. There really is no right or wrong answer.”

At this point, I know as much as I can about my disease and how to treat it. Whichever direction I opt for in the end, ultimately I’m choosing faith – in science and modern medicine and the wisdom of my caring physicians.

That’s a religion I can get behind.

I first wrote about decision-making with imperfect information at The Jerusalem Post.

Image from Bill Branson (Photographer) via Wikimedia Commons.

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Lessons from lymphoma

by Brian on February 25, 2018

in Cancer,Health

To her great credit, my doctor never used the word cancer. “You have a growth on your lymph nodes,” she said at the start of a 45-minute conversation. “It’s indolent” – linguistically idle or, in medical terms, slow growing.” “It’s the lowest grade of the least aggressive form of lymphoma.”

Yet, no matter how she sugarcoated it, my life still changed on that rainy afternoon in the hematology ward at Jerusalem’s Hadassah Medical Center. I am now a person with cancer and I will be for the rest of my life.

I’m lucky: My particular lymphoma was caught early and my treatment will be relatively mild. (How that actually plays out I can’t say yet as I don’t begin until next week.) The bad news: the cancer will almost certainly come back, although it could be another 10 years “by which time our medications should be that much better,” my doctor reassured me.

In that way, a cancer diagnosis like mine is like finding out you have an incurable, chronic but usually treatable illness. It’s similar to HIV in that way. In the 1980s, if you were diagnosed with the virus that causes AIDS, it was almost certainly a death sentence. Today, you can live a nearly unimpaired life with the right medical cocktail.

In the first few days after my diagnosis (which came after several months of stomach pain, 3 ultrasounds, 2 CT scans and finally a biopsy), my mood cycled through repeated rounds of depression and despair followed by cognitive resolve.

I would beat it, of course. I’d maintain a positive attitude throughout, no matter how sick I might feel. I’d embrace the toxic chemicals as they cleansed my blood of the tumors that had arrived unbidden in my abdomen. I’d transform this misfortune into meaning, a learning experience worthy of a TED Talk.

And then I would break down again and scream in the shower: “It’s not supposed to be this way. This shouldn’t be my life!”

“Who said so?” my therapist challenged me. “Who said life is ‘supposed’ to be easy, that you ‘should’ be healthy and that everything will just go great until you drop dead someday, painlessly from old age?”

She was right. I have a long history with “shoulds.” My often unrealistic expectations – of myself, of others, of how the world should work – are my personal anti-mindful bugaboo.

My therapist and I explored where this message might come from. Perhaps it’s from my own history with illness. This is, after all, not my first dance with a long-term, debilitating condition.

When I was 12-years-old, I was diagnosed with Crohn’s disease. In a tweenage flash, my dreams for the life I “expected” blew up – at least in my imagination. I would be in constant pain from the inflammation, I wouldn’t be able to travel, no one would ever love someone disabled like me.

It’s not supposed to be this way. This shouldn’t be my life.

For a while it was pretty tough. I was on a ton of medication, including one phase where I had to take a steroid enema every night. The picture in my mind: backpacking through Europe after finishing college lugging a suitcase full of enemas. Thankfully there was no TSA back then; I’m sure I would have been over the carry-on liquid limit.

I was fortunate then as I am now: my Crohn’s disease went into remission for nearly 30 years. Still I worried. I interpreted every upset stomach over the decades as a sign the Crohn’s was back, even as my doctor explained that everyone gets a tummy ache now and then. Sometimes I would whisper, “Is this cancer?”

Ironically, it was my vigilance and refusal to accept the pains that would eventually send me to the ER last year as my new normal that led to the ultrasound that first detected something amiss.

I “shouldn’t” have gotten Crohn’s disease then, and I “shouldn’t” have to live with lymphoma now. But I do and I will.

My life, post-Crohn’s diagnosis, turned out all right. I found someone who loves me and whom I love dearly. We raised three wonderful children – in Israel to boot. I have meaningful work, a well-received book and have traveled the world (and I never had to pack a suitcase full of enemas).

I debated whether to write about my lymphoma publicly – I wasn’t seeking any extra attention on a topic that was, until just a few weeks ago, far from my main area of interest and expertise. (I’m “supposed” to be the electric car guy.) But I figured I write about everything else – religion, relationships, cannabis and sex; how could I not share that which is most pressing in my life?

I’m not sure how I’ll feel in the coming months. But if there’s anything I’ve learned so far in the short time I’ve sat with this unexpected diagnosis, it’s that with cancer, as with life, there are no shoulds.

I “broke” the story on my cancer at The Jerusalem Post.

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Secrets of the Startup Nation

February 5, 2018

How did Israel become the Startup Nation? Here are five new reasons.

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“But she’s not Jewish”

January 22, 2018

“I heard Ben broke up with his girlfriend. I’m sorry.” “Don’t be.” “Why not?” “They weren’t good together. They were always fighting.” “Well, that’s a relief, I guess.” “Not really. He’s got a new girlfriend. She’s even worse.” “What’s wrong this time?” “She’s not Jewish.” “But do they get along?” “Oh yes, they are very […]

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Datlash 2.0 – the elephant in the room

January 9, 2018

What’s fueling the growing phenomenon in Israel of datlashim – Hebrew for formerly religious Jews? And how big is it in real numbers?

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Searching for cannabis in California

January 8, 2018

On my recent trip to California, I go in search of medical cannabis. Here’s what I discovered – from online “doctors” to medical dispensaries.

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A night in an Israeli hospital

December 7, 2017

I spent the night in the Emergency Room recently. I was expecting a nightmare. When it was all over, my verdict from my experience in the ER: surprisingly not bad.

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