The best-laid plans

by Brian on November 11, 2018

in Cancer,Health

“Let’s plan a party,” my wife Jody said as we left the hospital following my sixth and final round of chemotherapy. “To celebrate. And to thank all the people who helped along the way.”

I nodded tentatively. I was still weary from a long day with an IV in my arm and the thousand or so milliliters of chemicals which were now conducting a protracted argument with the white cells in my bloodstream. But I was buoyed by thinking about the day-after-tomorrow.

“And then how about planning some trips away?” Jody continued. “Where would you like to go?”

I didn’t want to be the proverbial party pooper but I felt compelled to remind Jody that I’m not out of the woods yet; that this is a chronic cancer and, even though I’m thankfully now in remission, to ensure the best outcome, I still have a full two years of every-other-month immunotherapy treatments.

Besides which, where could we go? Are exotic destinations off limits while I’m still immuno-compromised? What about the cost of travel insurance – will it be prohibitive?

“We don’t have to go overseas,” Jody persisted, keeping up the festive mood. “Didn’t you always want to go to that boutique hotel near Safed? Or the one in Mitzpe Ramon, with the private pools and the unobstructed view over the crater?”

My eyes brightened as I felt myself starting to get into this planning thing.

“And maybe by next year you’ll be ready for a trip abroad. We could do one with the whole family, like we used to,” Jody continued. “Didn’t you want to go trekking in Slovenia?”

As I prepared for sleep that night, my head overflowed with adventures; visions of hiking up waterfalls, overlooking majestic peaks – a well-deserved reward for trudging through this grueling year with as much grace as I have mustered.

Over the course of the following weeks, I had the usual post-chemo blues; the standard aches and pains and brain fog. But as with the previous rounds, it started to abate as I passed week three.

And then, bam, midway through week four, it all came crashing down.

A deep fatigue descended around me, one unlike any I’d experienced during the chemo itself. Climbing the stairs to our third-floor apartment, I found myself out of breath, grasping for air. My bones burned like I’d plugged my L-5 lumbar vertebrae into an electrical outlet.

I WhatsApp’d my doctor immediately.

“Is this normal?” I typed, hoping my fingers wouldn’t tire out before I was done.

My doctor responded that she’s had other patients who, like me, got hit by stronger symptoms a month after chemo was done. It’s unusual, but will most probably resolve on its own, she said confidently.

But the subsequent days got worse, not better. Not bottom-of-the-barrel awful, but enough to make a mockery of all that planning.

We had gotten overly optimistic when I needed to be more go-with-the-flow.

“Chemo is cumulative,” one of my follicular lymphoma buddies on Facebook comforted me. “Your body has taken a beating. It needs time to heal.”

But I wasn’t doing a very good job of accepting the situation. My post-chemo eyes coveted all the cake, not just a piece of fleeting chocolate normalcy.

“Oof, I just want this to be over,” I complained to my therapist in our weekly session. “I’m ready to be better already.”

“Let’s review the last six months,” my therapist said. “Has it been so bad?”

“What are you getting at?” I snapped, my defenses cackling.

“I mean, did your cancer keep you from spending time with your family?”

“Well…no.”

“Did you blow off any social events? Not see friends? Have to skip a lecture or class?”

“Just a few.”

“Did you miss any deadlines at work?”

“Nope.”

“Were you able to continue exercising?”

“Mostly.”

“Did you get to Tel Aviv to see your son in that Big Band concert over the summer?”

“Uh-huh.”

“The point is that, yes, cancer sucks. You don’t feel good a lot of the time – that’s natural. There are unexpected ups and downs – also par for the course. But listening to what you’ve just told me, I’d say that your experience has pretty much been a net positive. Not everyone with cancer can keep up such a busy schedule!”

Indeed, if I take the 10,000-foot perspective, my forest is looking healthy overall – even if some of the trees need extra care. It was more the excitement around planning, the presumption that I’d feel better immediately, that had been clouding my view.

“Maybe don’t think about what you’ll be doing a year in advance,” my therapist suggested. “Take it more day-by-day.”

Which is what Jody and I did when we were invited to a wedding. It was for the daughter of good friends and we really wanted to attend. We initially RSVP’d yes.

But the week before the celebration, I was still in my down phase. “I don’t think I have the energy,” I said and Jody called to inform our friends that we regretfully wouldn’t be able to make it.

The day of the wedding, though, I was feeling a little better. We monitored my health to make sure this was no morning fluke until finally, at 5 pm – the very last possible moment – we decided to go.

We arrived just in time for the chupah, to the delight of the bride and her parents.

Spontaneity, it seems, can sometimes be the best plan of all.

I first made spontaneous plans in The Jerusalem Post.

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“You look good”

by Brian on October 28, 2018

in Cancer,Just For Fun

“You look good,” our friend Ronit said when the three of us – my wife Jody included – went out to dinner the week before last.

I shrugged my shoulders before mouthing a mostly unconvincing “thank you.”

I should be more appreciative, I know. It’s just that I’ve heard this line so many times in the months since I’ve been coping with the realities of having chronic cancer.

Yes, I may look good on the surface level – my skin tone is decent, my hair hasn’t fallen out and I’ve gained back the weight I lost at the beginning of the process – but inside, I don’t always feel so fabulous.

Every day I still have pain and discomfort. It’s not from the cancer itself – that’s gone for now. It’s more likely a byproduct of months of intensive chemo that’s resulted in fatigue, joint pains, bone aches and lightheadedness.

But you don’t see any of that. From the outside, I look like my old healthy self and for the most part, I keep quiet. It’s a fine line when you suffer from chronic cancer.

To tell you how I really feel risks turning me into one of those eternal kvetchers, the kind you listen to empathetically at first but then take conscious steps to avoid the next time you meet at a party or event. But if I smile and say “It’s all good, man,” and I feel like I’m not being real.

“You have such a great attitude,” Ronit continues as we’re served our first course.

I do? Why? I wonder. Is it because I’ve confounded her expectations of what someone with cancer looks and acts like? Did she have a perception – taken from personal experience or from the media – of what “sick” means and so anything less than that is perceived as a triumph?

“How are you doing?” a friend asks on the phone when I’m out with the dog the next day.

“I’m walking,” I say, simply.

“Kol Hakavod,” comes the enthusiastic response – “good job” in Hebrew – as if the very act of being able to self-ambulate post-cancer is remarkable.

The thing is, I really want to believe Ronit that I do in fact look good. Maybe if my self-perception were more positive, I think to myself, my body would feel better too.

I’m not saying having a constructive attitude will cure my cancer. Follicular lymphoma never really goes away – it slips into remission for a while, comes back, gets treated and stays quiet for another period. But it might make it easier to get through each day.

“There is this very dangerous mindset running through our society that people with a visible condition or disability are the only ones who actually have a ‘real’ disability and anyone else can be shoved to the side,” writes Catherine Pugsley, who suffers from osteomyelitis, fibromyalgia, and Ehlers-Danos syndrome.

Pugsley doesn’t have cancer but her experience of the visible vs. the invisible when it comes to persistent pain is something people with chronic cancer know all too well.

“Oh, but you don’t look sick,” Pugsley says she hears all the time.

“Are you sure, because you look normal to me.”

It can’t be true, because “you’re too young to have anything like that!”

When you look fine on the outside, it can be hard to ask for or accept help when needed.

I have a disabled parking card, for example, but I hardly ever use it. What if someone saw me get out of my car and head down the street seemingly fully abled? But if I had to park a half dozen blocks away, that might be hard for me, too, even if you couldn’t tell from the way I look.

“We can’t be strong and stay invisible forever,” writes Pugsley. “Sometimes we have to drop the mask and be human.”

She’s right but I’m not sure I’m ready just yet. Too much of my identity is tied up in being stoic: the cancer guy with the terrific temperament.

The visible/invisible debate is not a new one in my life. My father had polio when he was a teenager. He was in the hospital for a year but survived and for many decades later looked entirely normal except for a slight limp. It wasn’t easy for him, but he was so proud of (mostly) being able to ignore his limitations.

I never imagined I’d be like him in that way. But here I am.

“You will get better,” Ronit reassures me over dinner, “I’m sure of it.”

I’m less sure but I just nod, determined to play my role.

Then Ronit says something surprising.

“You look handsome too.”

I turn to Jody to gauge her reaction. I’m pretty sure Ronit’s not coming on to me – not in front of her good friend, my wife. But she’s playing to my vanity and the compliment works.

For the first time, I’m left speechless with no curmudgeonly comeback arising in my internal monologue. Maybe I just needed someone to ramp up the acclamation before I could truly internalize it.

I blush but when I utter a meek “thank you,” this time I mean it.

We say our goodnights and Jody and I walk home together. I feel a surprising spring in my step. I look good, I have a great attitude, I’m going to get better and I’m handsome.

For a moment, I actually believe it all.

I first felt handsome at The Jerusalem Post.

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I’ve been looking at religion all wrong.

I’ve often been critical in this column of the role religion plays in our lives. No surprise there. My tendency is to analyze religious beliefs and practices by whether they stand up to the test of rationality.

Can a religion’s backstory be proved or is it more a collection of powerful myths? Does religious law make logical sense? Is there tangible evidence for a supernatural presence in the universe?

All that misses the point, says Columbia College philosophy professor Stephen Asma. He lays out his argument in a recent New York Times article and in a new book, “Why We Need Religion.”

Religion will always fail the proof test, Asma says, because fact-based evidence simply doesn’t exist for religion, at least not in ways that science can measure.

But that’s not what religion’s all about, argues Asma, a once Catholic altar boy who grew up to become a devout atheist and religion-skewering writer for publications such as Skeptic magazine.

Asma still scoffs at the absolutism of religion. “I do not intend to try to rescue religion as reasonable. It isn’t terribly reasonable,” he writes in his Times piece. “But I do want to argue that its irrationality does not render it unacceptable, valueless or cowardly. Its irrationality may even be the source of its power.

The human brain, he explains, is a “kluge of different operating systems.” There’s the ancient reptilian brain, which governs our motor functions and our fight-or-flight instincts; the mammalian brain, which is where we find our emotions; and the more recently-evolved neocortex, which is where we derive our rationality.

“Religion irritates the rational brain,” Asma writes, “because it trades in magical thinking.” Religion’s sweet spot, rather, is the emotional brain. That’s where it “calms fears, answers to yearnings and strengthens feelings of loyalty.”

Our emotions – be they fear, rage, lust, love or grief – if managed properly, are part of how we survive. They helped early mammals flourish and for humans are every bit as evolutionarily imperative as our ability to walk upright or use language. “In many cases, emotions offer quicker ways to solve problems than deliberative cognition,” Asma says.

Moreover, religion – especially in times of crisis or bereavement, with its time-honored rituals and an emphasis on community – serves as a kind of palliative pain management. Just think about the healing role played by the Jewish custom of shiva, the seven days of mourning.

“What’s so bad about pain relief, anyway?” Asma the atheist asks. Indeed, who among us would take away a proven therapeutic tool like religion, only to leave the bereaved with – what – OxyContin, aspirin and alcohol?

“We need a more clear-eyed appreciation of the role of [such] cultural analgesics,” Asma states.

Karl Marx famously derided religion as “the opium of the people.” Asma’s counter: “Bill Nye the Science Guy and Neil deGrasse Tyson will not be much help, should they decide to drop over and explain the physiology of suffering and the sociology of crime” following a terrorist attack.

Asma hasn’t become a believer and his book is not a treatise on return to religion. He steadfastly agrees with fellow atheists like Richard Dawkins and Sam Harris that religion fails miserably at the bar of rational validity. “But we’re at the wrong bar,” he says.

Nor is Asma blind to religion’s darker side. Its pervasive black-and-white, good-vs-evil narratives still lead to far too much narrow mindedness, hatred and violence. But is that enough to support American sociobiologist E.O. Wilson’s claim that “the best thing we could possibly do” for the sake of human progress “would be to diminish, to the point of eliminating, religious faiths?”

I’ve never taken my own response to religious fundamentalism all the way to proposing we toss the baby out with the baptismal bathwater. Asma offers a new – and for me, refreshingly novel – way out: a bifurcation of the basis for religious belief into a requirement for definitive proof on one hand (not going to happen) and a non-toxic tool for releasing curative endorphins especially (although not only) in times of trouble.

Religion in this sense acts as a form of complementary medicine – a great big cultural placebo, if you will.

Compare religion with homeopathy, for example. There’s no scientific validation that homeopathy works. A 2016 British meta-study covering 176 trials looking at 68 different health conditions found “no evidence homeopathy was more effective than placebo.” And yet, many people steadfastly take their ultra-highly diluted little white pills and rub their arnica cream on zealously.

How is this any different than the emotional support religion provides?

My take: it’s not, and maybe that’s fine (as long as it’s not harmful). Same goes for other types of healing that have eluded science so far.

Does that mean I’m ready to re-embrace religious observance? Probably not. Nor will I let up on my criticism when I encounter religious hypocrisy or political overreaching. (Sorry, Rabbinate, you’re not off the hook here.) But perhaps I can accept that strict scientific scrutiny is not the only way to understand the persistence of religious faith and action.

In his Times article, Asma brings an example of a mother grieving after her son was murdered. Religion saved her from a mental breakdown, Asma says. It was only her belief that she would “see her slain son again, to be reunited with him in the afterlife, where she was certain his body would be made whole [that] gave her the strength to continue raising her other two children.”

How could I not say “amen” to that?

I first compared religion and placebos in The Jerusalem Post.

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Rules for rumination

by Brian on September 30, 2018

in Cancer,Travel

The results from my latest PET CT were good. Excellent in fact. My hematologist sent me a two-line update by WhatsApp.

“No uptake in no lymph nodes! Well done!” she wrote (exclamation points included).

“Uptake” in medical language refers to whether the radioactive material injected into my veins prior to the PET CT had found its way into any of my lymph nodes. That would have indicated that I still had cancerous tumors in my body. It didn’t and I don’t.

My doctor followed her message with a pair of clapping hands. (You’ve got to love a doctor who communicates using emojis.)

I was less ebullient, however. Yes, I was officially now in remission. But as good as the news was, it was still “expected.” Most people with my kind of cancer respond very quickly to treatment. Moreover, my positive PET changed absolutely nothing. I still had another three chemo treatments to go and then 12 immunotherapy “maintenance” sessions over the next two years.

That’s because, with a chronic recurring cancer like follicular lymphoma, there are two battles: knocking out the cancer and then doing everything you can to ensure as long a remission as possible before the disease returns.

That put me in a bit of a Catch-22: I wanted to keep friends and family up-to-date, but if I said I was “cancer free” without a caveat, I’d be deluged with “congratulations” and “way to go” responses.

Even worse, my mind had already gone in a different direction. If I was now cancer free, did I still need all the remaining treatments? Maybe I could just stop. And the two-year treatment plan I’d settled on – was it even the “right” one? Could I have achieved the same positive result with less chemicals?

I was ruminating.

Rumination is when you essentially re-play in your mind a decision you’re not sure about, maybe even one you regret, to the point where you’re not able to be fully present in the current moment.

Rumination is not the same as reflection. That’s where you return to a decision but, rather than get lost in it, you evaluate it objectively in order to learn something new. For example, let’s say you sold your car for a certain price without doing a lot of research and later found out you could have gotten substantially more. Next time you’ll know better what to charge.

My worst case of rumination happened in 2011, when our family set out on a two-week trek in Nepal for my 50th birthday. One of the highlights of the hike was a pre-dawn 350-meter climb to a place called Poon Hill from which you could see all of the spectacularly snowy Annapurna range at first light.

But I was worried about being too tired to handle the long trek we had planned for the rest of the day. So I passed on Poon Hill.

As we hiked towards Tatopani, though, I couldn’t get what I imagined I would have seen atop Poon Hill out of my mind. With each of the hundreds of steps to the hot springs awaiting us at our destination, I beat myself up, over and over, missing out on the breathtaking real-time scenery unfolding all around me.

I needed some rules for rumination.

The key is separating what goes into making a decision with what comes after.

I’m a naturally analytical guy – that’s perfectly fine. If I’m going to buy a new smart phone, I’ll look at every possible model, listing all the pros and cons, prices, features and functionality.

But once I’ve bought it, assuming it works, looking back will only cause unnecessary pain. I can reflect (“next time, I’ll buy more storage” or “I’ll get the one with the better screen”), but rumination and reproach (“I should have bought the model with the bigger screen,” and “I’m such an idiot”) are off-limits.

That doesn’t mean you have to stick with a decision when new data becomes available. Let’s say you choose to go to a concert or a movie. Half way in, you realize you’re not enjoying it. Do you have to wait it out just because you paid for the tickets?

I had a clean PET scan – did that qualify as new data such that I should reevaluate? How about my physical response? After several months of treatment, I could see how my body was handling the chemo. Did that suggest a change of direction? Had the neuropathy – a common chemo side effect – been too intense?

Those kinds of discussions are entirely legitimate. What’s not OK: obsessively second-guessing whether the original decision was a mistake.

Another way of looking at the difference: reflection is looking back at a situation. Rumination is more like taking an actual step backward.

When I was debating whether to climb Poon Hill, I was worried I wouldn’t sleep that night. Guess what? I didn’t anyway – I was too busy “pre-ruminating.”

Years later, when my wife Jody and I took a similarly adventurous trip to Sri Lanka, one of the top recommended outings required a 4 am wake up.

I reflected on Poon Hill, deflected any rumination and we did it.

It was glorious.

I hope I can make a similarly glorious, non-ruminative decision on the coming months of my cancer treatment.

I first created my rules against rumination in The Jerusalem Post.

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“You look like you need a l’chaim,” the yeshiva bocher said to me, extending a plastic cup in one hand and elevating a bottle of vodka in the other.

“No, I can’t, it’s OK,” I replied, but he was insistent.

“I know a little about people and I can tell that you, my friend, are really in need of a shot,” he continued. He started to pour.

“You’re being very kind,” I demurred, although at this point I was starting to get annoyed. “But I’m just not allowed.”

He looked at me puzzled and I could tell he’d had a few drinks of his own already.

“But … it’s Shabbos!” he sputtered, then slumped onto the couch dejected before being distracted by the eye-popping scenery all around the two of us. We were at the 12th floor rooftop pool of the Ritz-Carlton Hotel in Herzliya. His black and white Shabbat garb was no match for the ever-changing color parade of half-naked men and women in their swimsuit finest.

I could have told my interlocutor why I was turning down his offer – that alcohol and chemotherapy don’t mix so well for me – but that would have gone against the aim of this weekend. My wife Jody and I had slipped into the Ritz-Carlton “cancer incognito.” We did it with the help of the wonderful Refanah organization.

Refanah is an Israeli non-profit that provides much needed “healing holidays” to people suffering from cancer. Refanah founder and executive director Robyn Shames has convinced dozens of hotel, B&B and guesthouse owners around Israel to donate sleeping accommodations based on the property’s availability.

Refanah’s pitch to proprietors is that they already don’t run at full occupancy year-round, especially during the week. So donating a room for a night only really costs them the cleaning afterward.

According to the Israel Central Bureau of Statistics, there are 6,500 B&B rooms in Israel with an average occupancy rate of 50 percent on weekends and just 25-30 percent during the week. There are another 50,000 hotel rooms with an average occupancy of 55 percent.

Shames came up with the idea for Refanah in 2014 after a relative, who had survived cancer, told Shames about Cottage Dreams, a similar program in Ontario, Canada.

Shames had already been doing important work as the executive director of ICAR, the International Coalition for Agunah Rights, fighting to “unchain” women whose recalcitrant husbands were refusing to provide them with a get, a divorce decree according to Jewish Law. After 11 years at ICAR, she was looking for a change. But it had to be one where she could continue doing good in the world.

The name Refanah comes from the Bible. Moses asks God to cure his sister Miriam of leprosy by praying “El na refana la.” It means, quite literally, “God please heal her.”

Shames started her Refanah by randomly contacting some 100 Israeli B&B owners to gauge interest. She figured maybe 10 percent would say yes; almost half agreed immediately.

“People are very excited about having this opportunity to do something nice,” Shames says.

In our case, the room at the exclusive Ritz-Carlton Hotel, overlooking the picturesque Herzilya Marina with its hundreds of yachts and sailboats, was owned by an individual who vacations in Israel the summers. The hotel generously added breakfast to round out the weekend.

People with cancer can browse the Refanah website to view properties and read details about availability. Refanah collects a modest NIS 100 fee when you make the reservation, “thus enabling every cancer patient to help others by participating in their circle of giving,” Shames says.

Both people undergoing cancer treatment and those who have finished treatment in the past year are eligible.

There are Refanah properties all over the country – on kibbutzim; smack dab on the beach; in the centers of Jerusalem, Tel Aviv and Eilat; in a stark caravan overlooking the Sea of Galilee; and even on an alpaca farm outside of Mitzpeh Ramon.

Refanah is great for people with cancer, but it’s good for property owners, too: a free night generates positive publicity that can lead to referrals and future business.

Despite the number of properties working with Refanah, the demand is constantly growing: about 28,000 people are diagnosed with cancer each year in Israel.

Refanah has now provided free vacations for nearly 2,000 cancer patients and their families.

For Jody and me, it was not just the break from routine in a pampering seaside hotel that was so invigorating. It was also the anonymity: no one knew how we got there or why. Maybe there was something small written on our reservation form, but to everyone else, we were just two ordinary guests.

For someone like me who’s been so public about his cancer experience, going incognito was as refreshing as that rooftop pool (which my doctor told me I was not allowed into because, you know, germs).

It’s not so surprising, then, that I chose not to tell my new yeshiva buddy the reason I was so resistant to his vodka volunteerism. Nor could he have surmised on his own my status – my hair hasn’t fallen out from the chemo (although my hairdresser says it’s thinned a little) and I’ve actually gained weight (treatment makes me crave carbs).

But someday – hopefully soon – I might just take him up on his Shabbos shots offer. L’chaim right back at ya.

I first got healed by Refanah at The Jerusalem Post.

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Under fire: a student in Sderot

September 3, 2018

My daughter Merav is a proud Zionist. But even Zionists get scared sometimes. And living in Sderot, there’s been a lot to be frightened of.

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Cancer as a chronic illness

August 19, 2018

Cancer isn’t what it used to be. Increasingly, researchers are no longer searching for a cure but for ways to manage it over a lifetime.

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Can Startup Nation save Israel from itself?

August 5, 2018

The Nation-State Bill. The Surrogacy Law. The detention of Rabbi Dubi Haiyun. Where did the words of Israel’s Declaration of Independence go?

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Playing the cancer card

July 23, 2018

All I wanted was a “free pass” – the ability to say to a client, “I’m going to need an extension on the deadline because, you know, cancer.”

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Pay mindfulness forward

July 9, 2018

“I’m afraid,” I told my doctor, “that I’ll get to remission from the cancer but still be suffering from chronic pain. How do I cope with that?”

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