Famous germaphobes

by Brian on June 10, 2018

in Cancer,Science

I recently joined some dubious celebrity company. Among my companions are Michael Jackson, Howard Hughes, Cameron Diaz and Donald Trump.

What do we have in common? We all suffer from mysophobia. That’s an irrational fear of germs.

Donald Trump, for example, is so germophobic that Newsweek reported last year that he “needs to drink through a straw because he wants to avoid contamination” and that he washes his hands “as much as possible.”

Michael Jackson famously wore surgical masks and gloves in public. Howard Hughes would lock himself in his “germ-free” hotel room for months at a time.

My mysophobia is less obsessive, more practical and hopefully quite temporary. Blame it on the cancer.

When I started chemotherapy a few months ago, I asked my doctor whether I could go out in public. The concern is that chemo wrecks your immune system. So if you catch a common cold or a stomach bug, rather than simply stay in bed to recuperate, you could wind up in the emergency room getting pumped full of antibiotics.

“Try to avoid enclosed places with a lot of people,” my doctor advised. “And don’t shake hands. That’s the most common way to pick up a bacteria or virus.”

“Sure, I can do that,” I replied confidently. But the reality was a lot easier said than done.

In particular, I now had to figure out a whole new way to greet people, along with a litany of clever excuses when someone extends a hand.

I could have just blurted out, “I’m not shaking hands because I have cancer.” But that’s not always a discussion I’m ready to have, especially with strangers.

My more discreet response: “I’m not feeling well, so I’m not shaking hands right now.” First of all, it’s true. And it makes me seem like I’m more concerned about the health of the other person.

To wit: a few weeks ago, my wife Jody and I were invited to a Shabbat dinner at the home of some new friends. We didn’t know any of the other people there, which meant I’d have plenty of opportunity to practice my new line.

“That’s very considerate of you,” said Mark, one of the guests, as I kept my hands firmly at my side.

But when it turned out we were seated next to each other at the dinner table, Mark started to squirm. He moved his chair slightly away from me. “Just how, you know, contagious are you?” he asked hesitantly.

“Oh, I’m not contagious,” I admitted. “I’m worried about getting sick from you!” I then explained about the chemotherapy and I saw his expression morph from apprehension about his own health to compassion for the cancer guy.

With friends who know what I’m going through, I’ve developed a special kind of greeting: the “elbow-bump.” Rather than extend a palm, I jut out my right elbow. We do a little dance and have a laugh, which gives me the chance to explain what it means to have a neutrophil count of only 1.4.

“If you do shake someone’s hand, just avoid touching your face afterward,” my doctor said.

I’d have to be a pretty flexible yogi to bring my elbow all the way to my mouth.

There have been a few times where I had no choice but to shake hands. Once, I was interviewed by a Swedish journalist who covers electric cars about my book. We were at an Aroma cafe. I decided up front that cancer didn’t need to be part of that conversation.

“Excuse me for a moment, I need to use the toilet before we start our chat,” I said. I then quickly washed my hands. I figured his Scandinavian politeness wouldn’t begrudge me that favor.

Not that restrooms are the cleanest places. The website TravelMath tested the surfaces in an average hotel room to find out which were the “germiest.” The bathroom counter topped the list with 1,288,817 CFUs (that’s “colony-forming units”) per square inch.

Running a close second: the TV remote control. Interestingly, 3-star hotels came in considerably less germy than 5-star properties.

Being a germaphobe can be crazy-making. Once, I had an appointment in downtown Jerusalem. Normally, I’d drive, but Jody needed the car that day. I planned to take a taxi. Just as I got to the main street, though, an Egged bus that would take me right where I needed to go arrived.

It wouldn’t take much longer on the bus, I thought to myself. And it would cost so much less than a cab. I hopped on.

Immediately I realized I’d made a mistake. As I scanned the vehicle packed with people, windows closed, I imagined myself aboard a rolling petri dish of bacteria all gunning for my white blood cell-deficient system. If I could just get to a seat and keep my hands to myself…

The bus lurched forward and I had no choice but to grab one of the bug-infested poles. I sat down, defeated and anticipating my coming hospital stay.

When it was time to press the button for my stop, I tried valiantly to use my elbow. A teenager who was standing nearby regarded me quizzically, made what I imagine were some cursory conclusions before kindly using her gloriously non-immuno-compromised finger to do what had so terrified this unintended mysophobe.

I washed my hands like Donald Trump when I got home. The ER, thankfully, hasn’t seen me yet.

I first revealed my mysophobia at The Jerusalem Post.

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I was in the shower when it happened: a boom louder and stronger than any I’ve heard since the suicide bomb at Café Hillel on Emek Refaim Street in 2003. I shut off the water immediately and got dressed as quickly as I could. I raced up to the terrace of our top floor apartment and surveyed the drama unfolding below.

There was a full-size firetruck parked in front of our building in Jerusalem’s Baka neighborhood. Next to it were several ambulances. Even more unnerving, there were men and women running down the main street pushing empty stretchers. Aid workers were speaking heatedly, loud enough to be heard from my observation perch four floors above.

At this point, I had no idea what was going on, but I could use my imagination. It had to be a bomb – but why would an attacker target my building in a quiet suburb at 1:15 in the afternoon when most everyone was at work?

Perhaps it was a knife attack – that had happened in Baka 28 years ago. Three people were killed by an assailant running wild through the neighborhood’s narrow streets.

I pulled out my phone and began searching for news. Eventually the story became clear. It turned out not to be terror at all but a gas explosion in one of the four other buildings of our apartment complex.

By now, the media had picked up the story. Journalists, video crews, neighbors and random rubberneckers were crowding around the hollowed out shell of the units directly above the blast that had rippled through our shared underground parking lot.

Speculation ran wild, online and off. Search teams had been dispatched to rescue those “trapped under the rubble and to evacuate civilians,” Kol HaIr reported breathlessly. Some residents had been rushed to the emergency room. The building might be in danger of imminent collapse.

Over the next days, the entire structure was cordoned off by fences and police tape. Guards were stationed to prevent curious onlookers from getting too close and to keep looters away.

The police conducted their investigation and referred the case to the state prosecutor’s office, which is where it’s stayed, shrouded in mystery until today when, some four months later, none of the residents – not those directly affected nor their neighbors – knows the whole story, only that a worker involved in a renovation had used a blow torch to connect a gas line that was supposed to be turned off, but wasn’t. The worker died in the explosion.

When calamity strikes, an understandable response is: could that have happened to us? And if so, what do we need to do to be fully prepared?

One of the most talked about conclusions has not been how to legislate better safety standards (that’s important of course but mostly out of the hands of us homeowners). Rather, it’s something far more prosaic.

Insurance.

Residents of the eight apartments that have been evacuated now need to rebuild. But how are they going to pay for that? Barring a judgment identifying a negligent party and, assuming said party has enough coverage for the NIS 12 million estimated cost, it’s each homeowner’s structural insurance that will need to kick in.

It turns out that many of the residents don’t have anywhere near enough.

That’s because when you take out a mortgage in Israel, you’re not required to purchase a specific amount of structural insurance. So most people take the minimum. After all, you’ve just bought a new apartment – what could possibly happen?

We checked our policy and we were in the same boat: Our insurance was sufficient to fix significant damage – say if a major water pipe burst or a fire broke out – but if the entire apartment needed to be rebuilt, there’d be no way.

The smartest solution is to up your coverage before disaster hits. If you can afford it, though, there’s an even more intriguing option: “walk-away insurance.” That’s where, if rebuilding isn’t in the cards after a predetermined number of months, the insurance company will pay out the market value in cash and take ownership of your mangled apartment so you can buy a new place of similar size in a comparable location.

Insurance may not sound like a hot topic, but it’s far from irrelevant. Yes, gas explosions are relatively rare. There was a big one in Gilo in 2014 that killed three and injured 11, and another blast in Netanya in 2011 that left four dead and 90 wounded.

Rather, it’s a different type of disaster we need to be prepared for these days: the very real threat of war, with the increasingly imminent possibility that a missile from Syria, Lebanon, Iran or Gaza could hit our apartment.

My wife Jody and I poured through policies with our insurance agent. In the end, we expanded our structural insurance to cover every contingency – at least until the end of the year, at which time we’ll reevaluate.

Was it fear driving us? Sure. But that doesn’t make it illogical. We felt we were making a proactive choice given the neighborhood we live in (and by that I don’t just mean Baka).

The gas leak was a tragedy for the worker who died and an ongoing nightmare for the residents affected. The best response for the rest of us is to transform anxiety into a learning opportunity and to take practical action – even if (hopefully) all it does is enrich the insurance companies and we’ll never need to walk away.

I first made the connection between the Baka boom and insurance at The Jerusalem Post.

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I’m looking out at the sprawling Peace Wood stage, a generous grassy lawn, dotted by august Eucalyptus trees, that slopes down towards a well-equipped performance platform. Much of the plot is covered by large cloth tarps that provide shade from the mid-May sun and can swing wildly when the wind kicks in.

The stage itself is flanked by a towering speaker system with enough intensity to get a crowd of 3,000 on its feet dancing while still respecting the aural sensitivities of the older generation.

It’s Jacob’s Ladder 2018 and, as you read this, the merriment at Kibbutz Nof Ginosar on the Sea of Galilee is well underway. The annual indie, folk, country, blues and bluegrass festival has been a home away from home for many of the tens of thousands of Anglos (and an increasing number of Israelis) who have pitched a tent here over the past 42 years.

My family and I are relatively newbies, coming to Jacob’s Ladder only for the last decade or so. While our kids still sleep under the stars, my wife and I gave up camping for the luxuries of a simple rented room on the kibbutz with a spartan bed, a shower with passable water pressure and a functional air conditioner.

When we arrive, we have our Jacob’s Ladder rituals. First, we find a spot at the Peace Wood space to lay out our mat and plant our low rise folding chairs. It’s not a simple decision. Are we fully under the tarp? Which way is the sun moving? Would it be better to be further back with a clear view or close up but with that tree in the way?

Fortunately, once everything’s in place, Jacob’s Ladder’s reputation as Israel’s “friendliest music festival” is confirmed with this unwritten but critical rule: You can leave your stuff out all day and all night and no one will steal or move it. If someone does sit in your seat, you can nicely ask and they’ll vacate without a fight.

Next, it’s off to get our Jacob’s Ladder t-shirts, exchange cash for “scrip” (the Jacob’s Ladder funny money with which we pay for schnitzel from the food court and vegan chai from the tea shop) and a quick visit to the Kinneret to check how far the shore has receded.

The Peace Wood stage is just one of four set up to accommodate all the acts at Jacob’s Ladder (there are 37 this year). The eponymously-named Lawn Stage is the most laid back. The Hermon Hall inside the kibbutz hotel building is the most chill (in that it’s usually frigid from the powerful a/c). And the Balcony Stage is where overseas guests, Italy’s “Ukus in Fabula,” will be leading a ukulele workshop.

For much of the past decade, the festival’s main act has been the Abrams, a country-pop Canadian boy band that exudes evangelical love for the Holy Land. This year, the Abrams are elsewhere, replaced by home-grown Tarante Groove Machine who promise an hour of energetic world music – a very different vibe that will undoubtedly go down well with the legions of dancing teens who have created their own Jacob’s Ladder “mosh pit.”

I asked Yehudit Vinegrad, who produces Jacob’s Ladder with her husband Menachem, if choosing Tarante to headline this year was a nod to the next generation of festival goers. “Definitely,” she said. “Though we want the 71-year-olds to dance, too. Our aim is to cater to all ages.”

And to an ever widening demographic.

“The festival originally attracted mainly the English-speaking immigrants who came in the 1960s and 1970s,” Vinegrad told me. “In order to carry on the festival, we need to sell enough tickets, so we do our best to attract Hebrew speakers too.”

Another change: a special Thursday through Friday afternoon-only ticket for the growing number of religious attendees.

My musical tastes tend more to indie than Irish fiddling. As a result, I’m most looking forward to two young bands. One is the six-piece Forest, who mix up psychedelic klezmer, progressive rock, chanting, shamanism, storytelling and prayer.

The other is Kim in the Sun, a new configuration for Mika Sade who I praised as one of the breakout artists from Jacob Ladder 2017. Vinegrad was impressed enough with Sade and her Minnie Riperton-esque trills to move her to the Peace Wood stage this year. “Mika Sade is unique, original and overflowing with talent and surprises,” Vinegrad said.

Vinegrad also suggested I don’t miss the Ukrainian band, Spiritual Seasons, who focus on North European folk music; Itamar Haluts, with his infectious power pop originals; English folk music devotees The Fine Marten; and Richie and Bel, who came to Vinegrad’s attention after the lead singer “bought a ticket last year and stood on one of the main pathways and played. Lots of people stopped to listen to her.”

When the last band winds up the final notes of the traditional Jacob’s Ladder closer “Good Night Irene” Saturday afternoon, a group of stragglers who can’t get enough will head down to the Sea of Galilee where, gingerly anchoring the legs of our white plastic chairs in the rocks and gently lapping waves, we’ll hold one last jam, piloting the virtual Chevy to the levee along the City of New Orleans and already dreaming of 2019.

I “previewed” this year’s Jacob’s Ladder originally at The Jerusalem Post.

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“What’s your Hebrew name?”

That was all the text message said. No empathetic opening like “I heard about what’s going on” or acknowledgment of “that must be really tough.”

I knew exactly what the sender was getting at – he wanted to pray for me and needed the mystical equivalent of my teudat zehut (my Israeli ID number).

This brief WhatsApp exchange was just the first in a series of awkward moments I’ve encountered since telling people I have cancer. As much as the diagnosis was a shock to me, it’s been an even bigger one to friends and family who were not privy to the repeated pokes and scans and blood tests that preceded the final verdict.

One thing I’ve learned in the relatively short time I’ve been living with follicular lymphoma is that people don’t know how to respond when they first hear about someone who’s sick.

I understand that much better now. You really have to have been through a life threatening condition – either personally or by caring for a loved one – to truly “get it.” And even then, every individual responds differently to his or her illness, so the compassionate thing to say to one person might come off as uncaring to another.

I decided to write down a list of the most appropriate words I’d want to hear. Then I found that Letty Cottin Pogrebin had already done the same thing.

Pogrebin was a founding editor of Ms. Magazine. Her most recent book of non-fiction, “How to be Friend to a Friend Who’s Sick,” was written after the author was diagnosed with breast cancer several years ago.

Pogrebin’s book is filled with valuable insight. Asking “How are you?” for example, is a loaded question for someone who’s ill, she writes. In normal discussion, it’s meant as a breezy placeholder for a longer conversation to be held later, where the questioner is expecting just a quick “Fine, how are you?” in response.

But for a sick person, that simple salutation triggers a fairly complex decision-making process, where one has to “decide on the spot, questioner by questioner, friend by friend, situation by situation, how candidly to respond,” Pogrebin explains.

Here are a few tips I’ve picked up during my own bout with cancer.

Wishing a sick person refuah shlemah – a “complete recovery” in Hebrew – is a standard formulation in Jewish circles that does the job succinctly without descending into platitudes or clichés. It’s much better than faux encouraging lines like “Everything happens for a reason,” “You’re so brave” or “We’re all going to die someday. You could be hit by a car tomorrow.”

Similarly, while it’s true that my cancer may very well “change me for the better,” that sentiment is better off coming from me, not from someone else, however well intentioned.

“Let me know if you need anything” sounds comforting but it actually puts the onus on the sick person to proactively reach out for assistance. In her book, Pogrebin suggests that a more helpful response might be “How can I help?” or “What can I do?”

Another from Pogrebin: Do your best to suss out where the sick person is at before engaging in conversation. A chipper “Tell me all about it!” might not be received as supportive by someone in pain. Sometimes it’s appropriate to change the subject; other times, the best thing to say is just “cancer sucks” and leave it at that.

When it comes to giving advice, it’s fine if the sick person initiates. “Hey you’re a nutritionist, what do you know about sugar and tumors?” But otherwise, that YouTube video you saw about how your favorite holistic therapy can cure cancer may come across as pushing an agenda I might not be ready to hear.

“But you’re so healthy. You work out, you’re always hiking, you don’t smoke. And your wife’s a vegan. How could this have happened?” But it did. And science doesn’t know what causes lymphoma. It could be genetics. It could be overuse of antibiotics. It could be the environment. Or all of the above.

These last two points underlie what I think is behind many of the comments people make: fear. It’s terrifying when someone gets cancer because it forces you to confront not only your friend’s mortality but your own.

Siddhartha Mukherjee writes in his best-selling book The Emperor of all Maladies that, in the United States, one out of every two men and one out of every three women will develop cancer during their lifetime.

So, if you can create “categories of exclusion” – “Yes, he exercised, but he also ate meat” or “I had that same ultrasound and it was clear” – then you can feel “safe” (at least for the time being) that you won’t get it too.

That, I propose, is what’s behind the “Can I pray for you?” question. It’s not so much that you’re helping me, but rather that you’re calming your own dread by doing something – anything – in the face of the alarming possibility that the universe is, in fact, random.

I understand that concern – I feel it too. But, as regular readers know, I’m not a big believer in the efficacy of prayer. So I’ve begun to suggest an alternative action when someone asks for my Hebrew name.

“Instead of praying, the next time you’re walking down the street, smile at someone you don’t know or just say hello to a stranger,” I explain. “And when you do, please think of me.”

I first suggested smiling at a stranger at The Jerusalem Post.

Man in prayer image from Ori Lubin [CC BY-SA 4.0 from Wikimedia Commons]

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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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