Ain’t no going back

Rebeca, a blogger friend of mine, pens The Small C, about her experience since her cancer diagnosis at age 32.  Her most recent post raises an excellent question: if she had the ability to erase the memory and experience of being diagnosed with cancer, would she want to?

I know my answer: a resounding NO!

Understandably and without question, cancer has changed my life and the lives of those closest to me.  I make decisions differently these days, as do my closest friends and family.  Some people have pleasantly surprised me and others have done nothing other than disappoint.

Sure, my life revolves daily around having cancer, which acts as the foil against which every thing I do every day is reflected.  But, in so many ways, my quality of life has never been better.

Let me say that again: my quality of life has never been better.

I like to think that cancer has made me a better husband, father and friend.  And, quite frankly, I like the guy I am today.

Without a doubt, I’d prefer not to have had cancer at all, but that’s not the question.  While cancer is never a good thing, like anything else, how one deals with it is the key.  Perhaps once or twice over the past few years I have actually become momentarily distraught but, overall, I’ve taken it in stride and, as much as possible, made the best of it.  My approach to treatment and my general outlook have been resolutely realistic and neither rosy nor bleak.  This is the only approach that makes any sense to me.

This is the hand I’ve been dealt and, thankfully, I’ve been given the resources to handle it well.

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Feeling pretty good…

I’m halfway through the second week of this month’s cycle of TAS-102 and I’m feeling pretty good.  My sleep seems to be regulated, with only occasional pharmaceutical help.  My pain is much more under control, albeit with continued use of painkillers, but at a much lower frequency.  I’ll find out in two weeks if the TAS 102 is doing anything.

This is particularly fortuitous because we are able to enjoy a week’s visit from Tammy’s parents.  Yesterday, we spent some time in Jerusalem at the new Friends of Zion museum, dedicated to stories of non-Jews who were instrumental in the establishment of the modern State of Israel. It was amazing to hear some of the stories, told through innovative, interactive exhibits.

After that, we had the opportunity to do that which I’ve written about before: drive right into the plaza of the Western Wall and park our car. Believe me, this is a big deal.  The last time we did this, I did not yet have a permanent handicap parking tag, so special permission was required. This time, we simply drove up to the gate and asked to be let in. Luckily, it wasn’t too crowded.  Very cool.  I’ve got to remember to take advantage of that cancer perk some more!

Today, we visited the Rishon LeZion museum, which tells the story of the settlement founded in 1882 (today a major city), and the founders’ struggle to find water and work the land, even though none of the 17 founding families knew a lick about farming. The well that finally produced water was approximately 17 stories deep, and dug by hand.

Talk about being positive in the face of adversity…

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OK, so this is a “process post.”

So, my last post was about how my writing has shifted from dealing with “process” to increasingly philosophical issues.  And, lo, this post is about…process!

Why?  (There; a little philosophy for you.)

I figured it would be helpful to share an update about what’s going on, since there’s been a noticeable increase is inquiries about how I’m doing.

Thursday last I went to see the oncologist and we reviewed my blood work and most recent CT.  The bottom line is that I will be continuing with the Japanese drug (TAS-102) for at least one more cycle starting today (two weeks on and then two weeks off), after which I will go back to the oncologist.  In the meantime, the name of the game is to control as best we can my pain and sleeplessness.

While my tumor markers are up and the last CT scan I had (late May) indicated disease progression, particularly in my liver and pancreas, I should point out that it is not all good or bad in terms of pain and sleep.  For example, the past couple of nights were good nights for sleep.  Only one bathroom break each night and NO need for additional pain meds.  That’s a big deal.

Also, I’m feeling as though things are a bit more in control.  So much so, that Tammy and I are considering a trip to NY the last week in July and first few days of August.  The oncologist agreed and even wrote me a note to present to the insurance company so I can get travel medical coverage.

All in all this is good news, in that my oncologist didn’t seem all that perturbed about my test results.  She is of the opinion that we have to give the TAS some time to kick in.

That said, we continue to closely monitor how I’m feeling and, I’m pleased to say, things seem to be trending positive.

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How’re you doing?

In thinking yesterday about my writing, I came to realize how it’s changed over the recent months.  Whereas onceuponatime the blog was simply a means to keep people up to date about my goings-on (actually, it was first simply an email list), it’s morphed into something somewhat weightier.

A couple of reasons come to mind.

First, older posts seem to have focused on the process of what was happening.  What did I do? What was the experience like? What funny anecdotes resulted from the hijinks?  Given that things have been somewhat de rigueur since my last surgery a couple of summers ago, simply posting entries about what happened at chemo seems kind of boring.  It’s hardly the stuff of which ongoing good (or useful?) reading is made.

The other reason is borne of the recognition that having something to say, even if to a small group such as you who regularly read what I post, is somewhat of a responsibility.  I have no illusions that thousands of people read what I write.  I know that not to be true.  Rather, if you are going to invite me into your email inbox or Facebook feed, should I not at least try to have “something” to say?

In our age of constant and instant communication, where everyone is a journalist, pundit and expert on everything, anyone can publish anything he wants.  Is there anything more annoying and offensive than someone mouthing off just because he can?

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 People often ask how they can help.  I recognize that sometimes it’s difficult to “instinctively” know what to do, so here are some suggestions:

Read this blog.  Granted, it’s not as newsy as it once was, but it will give you insight into how I’m feeling, or what I’m thinking.  It’s safe to say that I think about cancer every moment of every day.  But I mean, in addition to that.  There are so many facets and angles.  So, if you’ve bothered to subscribe, take the five minutes to read.

Think about what you want to say or ask.  Understand there is no real discussion about cure or remission.  Rather, we talk about managing pain, discomfort and sleeplessness on a daily (and nightly) basis.  Most days can’t even be summed up as being “good” or “bad.”  Rather, the morning may have been fine, but the late afternoon and evening may have required more pain meds than usual.  By all means, ask me how I’m doing, but understand that the answer is more complicated than a single word.

That said, don’t be afraid to ask! If I don’t want to tell you, I’ll let you know.  Usually, though, I absolutely LOVE talking with people who are genuinely interested in what’s going on and how I’m doing. It helps me process.  Last week I had lunch with a friend who expressed surprise at how forthcoming and honest I was about my cancer and how we are working at managing it.  Why not? It doesn’t make me uncomfortable and, if you’re asking, I assume you want to know.

By the way, none of this is meant to chastise anyone.  It’s simply what I’m thinking about right now,  and I thought that might be useful.

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Hillary Clinton, Keyser Soze and Menachem Begin

I like when things come full circle. Whether it’s a nail-biter like the 1995 movie The Usual Suspects or a historical tome such as the more recent The Prime Ministers, there’s a The Usual Suspectscertain feeling of satisfaction when a well-told story comes together in the end.

Way back in 1996, then-First Lady Hillary Rodham Clinton “penned” a book, It Takes a Village.  In it she posits that society bears a collective burden to raise its children well.

From my experience, I agree. Having been robbed of my mother at the young age of 14, my community at the time stepped up.  I distinctly remember people reaching out to proactively help us in a variety of ways. In the eyes of a 14 year old such attention could be seen as an intrusion.

Today, of course, I understand differently.

A few weeks ago, the house phone rang (an unusual occurrence in and of itself) and on the other end of the line was one of the former community members who had helped out in a selfless way. This woman would call on occasion to say she was going grocery shopping and what can she get? Or, to inform us that she had cooked some dinners for her family’s freezer and had a few extras she’d like to share. Or, sometimes, just to say, “hello and I’m thinking of you.”

Her call a few weeks ago, after not having spoken to her in years, got me thinking how, in so many ways, I am reliving my experience as a teenager. I realized that, once again, I am the beneficiary of so many acts of kindness.  I am, once again, surrounded by a village of people all looking out for me, who genuinely care about how I am.  Whether it’s those who are paid to do so, or even those who are seeking out just a bit of drama, and especially those whose motives are 100% genuine, I appreciate all inquiries.  It feels good to know others are thinking of me.

So, while this story isn’t as thrilling as The Usual Suspects or as surprising as the conclusion of The Prime Ministers, for me it represents a full circle.

And that’s quite satisfying.

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Gratitude for the Mundane

I’ve often written that any doctor’s appointment after which I am allowed to go home is a good one.  This past Sunday I got a call from my oncologist’s office to come in that morning (a regular work day here) to pick up my TAS-102.  My blood test results had come back and with my tumor markers continuing their relentless climb, it was apparent the treatment I had been receiving wasn’t quite doing the trick.  Time to change horses and try the newly approved Japanese medicine about which I have written before.

As it happens, I hadn’t been feeling great over the previous week and, as we were leaving the hospital, I remarked that yet again I felt under the weather.  Tammy suggested that, “Since we’re here, why don’t we pop in to the oncology day care unit to check your temperature, as I’d hate to go all the way home only to have to come back again.”

Well, she was right.  It turns out I had a low grade fever, but it was enough to give me some serious shakes and to suggest to the nurses that I may have an infection.  That’s not something one wants when undergoing chemotherapy.  And, my oncologist had just pointed out during our meeting, she is always concerned about the bile duct stent that was put in a couple months ago becoming infected.

So, once again, I found myself the guest of Hadassah Hospital.  Unfortunately, there was no room in the Oncology Ward, so I was punted to Internal Medicine which is housed in what can best be described as an old Soviet-style environment with not much personal space and nurses who are harried.  That’s not to say they aren’t (for the most part) really caring, attentive and great at what they do.  But based on my experience, they ain’t no Oncology Ward and they certainly ain’t no Surgical Ward.

And all that isn’t to say there weren’t a couple of moments of levity.  When speaking to the infectious disease specialist, he admitted he wasn’t sure what the cause of my fever was, as he couldn’t pinpoint where it was.  My liver functions all came back just great (i.e. the stent was perfectly fine), and he was at a loss.  He explained that he thought he had it figured out: my gallbladder.  Great, except upon close inspection of my chart, one would see I no longer have a gallbladder.

On day two, one of the nurses came in with what looked like a very long Q-tip to take some sort of culture.  She explained she needed to test for staph infection, and I assumed that long proboscis was to go down my throat (something I don’t handle well).  Then she looked at me apologetically and said, “You need to stick this in your tusik.”  (Side note: even the most senior of medical professionals here resort to “tusik, pee pee and kaki.”  It just tickles me.)  Anyway, I thought for a minute and reminded the nurse that I have an ileostomy and my tusik is no longer connected to my intestines.  She looked flummoxed, so I suggested we just stick the stick into my bag and get a sample that way.  Reason #37 that I love my ileostomy!

Yesterday, I was discharged in the morning and home by noon.  At about 2pm, Tammy gets a call on her cell phone from a nurse (with whom we had not yet had any interaction), asking us where we were.  When Tammy explained that we were discharged, the nurse started yelling, as if we simply walked out.  Turns out that the oncologist who discharged me never informed the nurses in Internal Medicine that he had done so.  Like it’s our job to make sure everyone else does their jobs?

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Laying in bed yesterday after coming home (and while Tammy was being yelled at), I had time to reflect on how, once again, I am incredibly lucky.  There are so many reasons why and any list I make starts with my family and close friends who always, without fail, take care of me.

But yesterday I was moved to tears thinking about what a blessing it is to be able to leave the hospital upright and under my own power.  Even more so after having been admitted.  Granted, I’d have preferred to have left on Sunday but, even so, my stay was relatively brief, relatively without incident, and absolutely not as bad as it could have been.  While it’s no fun to have massive amounts of antibiotics coursing through my veins, it all could have been a whole lot worse.

So now the plan is to finish up my antibiotics this week and on Sunday start the TAS-102.  It’s a course of pills taken morning and night for five consecutive days then two days off.  Then repeat the process once, followed by two weeks off, during which there will be more test, etc. and so on.

It’s good to have a plan.

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In Search of a Hero

I’ve never been one to succumb to hero-worship.  Sure, as a child, and even as an impressionable young adult, I’ve had crushes on some people to whom I’ve looked up.  But, until yesterday, I don’t think I’ve ever observed someone – or something they’ve accomplished – and said, “My God, I wish I could be like that.”

Until yesterday.

A couple of posts ago I referenced the book, When Breath Becomes Air.  Yesterday, I finished reading that book.  Now, I haven’t read a lot on cancer or, more specifically, cancer and death.  In fact, most of my reading on the subject is limited to other cancer-related blogs.  This book, by Paul Kalanithi, took my breath away.

First, the man clearly was a genius.  He made it through what is, I assume, one of the most rigorous medical training programs in the world: becoming a neurosurgeon.  His education

Paul K

A real hero.

was not simply “limited” to his area of expertise.  It is immediately obvious that Kalanithi is a big thinker, the kind of person who gets to ask – and then answer – some of life’s biggest questions.  His education isn’t only medical, and he finds a way, in just a few short years, to bring together tremendously deep philosophical thinking, pairing it with the most intricate, hands-on medical treatment.

Second, although Kalanithi and I are worlds apart and his ability with the pen far surpasses mine (There were whole passages I simply did not understand, either due to his use of language or literary references that were beyond me.), his experiences mirror mine in so many ways.  He writes elegantly about terminal illness and, although it’s completely expected, his death took me by surprise.  (His wife completed the manuscript.)

Third, his drive to complete his oeuvre is clearly a large part of what sustains him, and he allows nothing to stand in his way.  He purportedly used silver-lined gloves when his fingers hurt too much from treatment (I used the eraser ends of pencils.).  This is a man with drive, something we can all admire and appreciate.

I urge you to read When Breath Becomes Air.  It will be hard, especially at the end.  But I think it will do much to help provide you with a perspective on what I – and all terminally ill cancer patients? – think about on a daily basis.

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That’s not the way WE do it.

With just a few hours to go before we sit down to our traditional Passover Seder, I ponder that Jewish holidays – with all their traditions (read: “favorite foods”) – can prove to be exercises in negotiation, accommodation and capitulation. Perhaps none more so than Passover.

Assuming both halves of a couple come from traditional backgrounds, each will have his or her “own” way of doing things. And, truth be told, deviating from that with which one grew up is, understandably, uncomfortable.

But, this year, I had an epiphany.

Saying something like: “That’s not the way we do it” is a backward-looking statement. As a parent, I recognize my job isn’t to recreate what I grew up with – albeit wonderful, warm and delicious – for my children, but rather to make sure THEY create their own lifetime memories, around the sights, smells and tastes they are now experiencing.

In a few minutes we will pack up the car and drive to a house my in-laws rented for their three children and all their families. My kids will get to hang with all of their “mommy-side” cousins and my in-laws will get to have their Seder this year with all of their grandchildren. There are no grandiose plans set for the first few days, other than eat, sleep, walk, talk and loll around in the pool.

Before you know it, the kids will be parents and hopefully they will one day sit with their kids, sharing stories of what it was like “before you were born,” while creating new lifetime memories for a new generation.

Wishing all a (if you observe) a wonderful Passover holiday, full of everything you know and love, and some new things, too.

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Hey, it’s a living.

Yesterday was a good day.  In a couple of ways.  First, I actually got out and did something.  Second, it took several hours.  Third, I didn’t keel over from exhaustion.  Fourth, I got to meet some interesting people.

But, before we get to that, I guess I “owe” an update, if not an explanation, of my two-month absence.  Simply said, I’ve been busy with other stuff.  Or, I didn’t know what to say.  Or, I didn’t know how to say it.  Yesterday offered the proverbial kick-in-the-pants to get back in front of my keyboard.

But, before we got to that…

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When we last left our hero, he had made a new friend, Herb.  The excitement, as there often is with new relationships, was palpable. Herb was going to help me feel better. Less pain, more sleep, better appetite.

It didn’t turn out that way. For some reason, thrice-daily get-togethers with Herb seemed to require more painkillers. Less sleep followed, and hunger just didn’t seem to come around.

Long story short, I had a blocked bile duct in my liver which required a stent (same sort of thing that is used in and around the heart) to keep it open.  Without it, bilirubin levels would continue to rise and I’d become increasingly yellow, leading to more bad things.  So, as my oncologist so eloquently described, a gastroenterologist performed this endoscopic procedure, which required her to “go down my throat, into my stomach, make a right turn at my duodenum, and open the blocked duct.”  Easy as pie.

My oncologist subsequently changed my chemo regimen and, I’m happy to report, I’m having much less pain these days.  I’m still dealing with it, as well as sleepless and sleepiness at all the wrong times, as well as appetite loss, but at least the pain isn’t excruciating.

Which brings us to last night.  My wife suggested that maybe it’s time to break out the Herb again, in the hopes that I’ll sleep better and maybe eat a bit more.

Sleep didn’t really come, but at about 1:30 am, I was furiously foraging for something “good” to eat.  I settled on some cold calzone, chocolate and cottage cheese.  So, yeah, there is some good from the weed.

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I was invited to participate in a workshop yesterday, that was meant to deal with the concept of hope and, specifically, how to possibly raise levels of hope, for people with life-threatening illnesses.  Arranged by an organization called Life’s Door, approximately 15 cancer patients and former patients were taken through a variety of exercises and discussion topics, all meant to explore various aspects of hope.

It was helpful and interesting. But, most of all, being together in a room with a dozen or so people who can more directly empathize with me, was refreshing.  By my estimation, I was one of the four youngest participants in the room, and appreciated the insight from peers as well as those who have traveled this path before me.

Where this will lead, I don’t know, but it was good not to be “the” guy with cancer.

Part of what we discussed was goal-setting as a driver of hope.  Specifically, we discussed a The New York Times best seller, When Breath Becomes Air, by Paul Kalanithi, the true story of a budding neurosurgeon who, at the very end of his training is diagnosed with stage 4 lung cancer.  His goals shift from wanting to become a neurosurgeon, to becoming a writer, to simply having the goal “to write.”

For me, the penny dropped when we were presented with an exercise to write down four elements or aspects of our persona.  I struggled with how I would describe myself professionally.  In the past, it may have been any of: PR pro, communications consultant, oil salesman, photocopier salesman, general manager.  Today?  I think it’s “writer.”  While I don’t get paid, in the traditional sense, to write, I think it’s what best describes my metier. And I realized, damn it, I should really put a bit more into it.

So, here I am.

 

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Meet my new friend, Herb.

A whole new world.

A whole new world.

Yeah. More on that in a minute.

Two weeks ago I went to the oncologist to review my CT and recent blood work, following three months on Stivarga.  While the drug was helpful in terms of mitigating much of the discomfort I was experiencing, almost immediately upon stopping the drug, the discomfort spiked.

So, not much of a surprise when the oncologist told me that both the CT and blood work clearly indicated significant tumor activity and progression.

As an aside, I am pleased to report that any recent hair loss was clearly the result of chemotherapy and NOT old age.  My hair is back with a vengeance.  So much so that no fewer than three people (my oncologist, her nurse and one of the chemo ward nurses) all exclaimed, “You look like a lamb!” Each proceeded to run her fingers through my luxurious locks.

What’s next? I’m now on Mitomycin, which is administered once every four weeks via infusion.  Thus far, I am pleased to report that it seems to be helping in terms of reducing the frequency of my discomfort.  Granted, the days immediately following administration were fraught with nausea and genuflecting before the porcelain god, but three days of hell once a month seems reasonable to me.

My bedroom dresser is starting to look like that of an old man, with no fewer than six prescription meds, including Percocet and Abstral (plus two for nausea, one for sleep and one for cholesterol).

But, the best part of my recent visit to the oncologist, went like this:

“So, I’ll give you these two pain meds. Do you want to try cannabis, as well?”

“OK.”

“Great. Take this form to the secretary and she will set you up.”

We did, and three days later we were back at the hospital for an appointment with another oncologist who signs off on the licenses.  As it turns out, there was no need to see him, we simply showed up and one of the nurses gave me my license (a photocopied piece of paper) and told me to call a number in Tel Aviv.

This morning was our appointment at a wonderful organization called Tikun Olam, Israel’s first and largest supplier of medical cannabis.  As standard practice, we met first with a nurse –  a lovely young man named Oded.  (“You’re a nurse?” “Yes.” “Really?” “Yes; I worked in a hematology unit for five years!”)

Oded taught us about the history of medical marijuana in Israel and after some back and forth, we decided to go with a vaporizer, versus rolled joints, pills or oil.

“Take three deep breaths through the vaporizer,” he instructed.  “And now write notes on this clipboard summarizing what I am saying.”  I was following closely and diligently taking notes, but at one point I just got lost.  I knew the words he was saying, and I understood them all. But I was lost.

“Oded,” said the neophyte, “You’re going to need to repeat that.”

My new friends: Oded and Herb.

My new friends: Oded and Herb.

He smiled and indulged me, and explained that’s just part of the magic of the cannabis.

So now my bedroom smells…interesting. I have a new vaporizer and grinder with which I need to sit down and play.  I’m hoping that, with the new chemo, the meds and the cannabis, discomfort will subside, regular sleep will return, and a whole slew of friends will come out of the woodwork.

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