What do You Say to a Guy With Cancer?

Last weekend was the first really tough moment in the early phase of my encounter with cancer.  A last minute call from a scheduler at the interventional radiology clinic suggesting that I was having a lung biopsy (I wasn’t) and that I would require 4 days of bed rest to recover (I didn’t) really freaked me out!  Even my daily efforts at light sedation (see my previous post, Lightly Sedated) were of little use.   Fortunately my biopsy went as planned (perhaps better) and I am back to balancing mere uneasy calm with your run of the mill gut wrenching anxiety—as opposed to, say, gut wrenching anxiety with existential, paralyzing fear.

Having said that, Friday’s call has really got me thinking about the dos and don’ts of talking to someone with cancer, or at least what to say to “this guy” with cancer.  Below is a brief primer on the topic.  I hope that you will take it in the spirit in which it is intended:

Dos

Please do almost everything you’re all already doing.  I appreciate your expressions of sympathy, concern, you cheers, your good wishes, the jokes about hair and weight loss, your anecdotes about your friends and relatives who survived cancer, your suggestions of alternative therapies (which I may or may not take advantage of), your tips on how you made it through chemo, etc., etc., etc.  In truth, my family, friends, and co-workers have been wonderfully supportive and I am truly blessed with an unbelievable network of kind, caring, and decent people.  Thank you.

Don’ts

There are really only two entries in this category.  First, don’t tear up and tell me about the aunt, uncle, mother, father, etc., who succumbed to cancer.  That really doesn’t help me.  In fact it makes my balancing act quite difficult and I can soon tilt over into the gut wrenching anxiety side of things.  Second, don’t try and assign blame. In other words, don’t try and figure out if my diet, my weight, my environment, etc. caused my lymphoma.  There are simply too many what ifs, there, and frankly I am not in the mood to be blamed for having cancer.  Indeed, if I had smoked since birth, slept in a tanning bed, driven to work in an asbestos laden car, and worked in in a nuclear reactor core I still would not want to hear anyone’s assessment of how I got cancer.  Now is a time to for fighting cancer, beating cancer, and healing.  I am surely interested in health tips that will help with that work, but please, PLEASE, keep your assessments of how I got into this mess to yourself.   Truth is, sometimes people just get cancer.

Let me just close by recognizing there is no really good way to talk to someone about their cancer.  Hallmark has yet to create the perfect card.  Frank Sinatra and The Nelson Riddle Orchestra never recorded a cancer classic, and I don’t recall Shakespeare really addressing the  topic either.  That must tell us something, yes?  And yet, most of the time my family, friends, and colleagues have found extraordinary ways to address the subject, lift my spirits, and make me feel surrounded by love.   I am extremely grateful for that.  Perhaps you guys should work on a greeting card, a classic cancer tune, or the ideal cancer sonnet.  You’ve surely got what it takes.

Thanks Again,

E

 

 

Lightly Sedated

Earlier this week, I scheduled my upcoming needle biopsy. I was somewhat relieved to know that the radiologist believes he can get a sample this way, since the other way involves knocking me out and intubating me.  While reviewing the preparations for the procedure (fasting after midnight, stop taking aspirin and ibuprofen five days out, show up an hour early, etc.) I was informed by the scheduler that I would be lightly sedated during the procedure.  Hmmmmmmm, lightly sedated?  What does that mean, exactly?  My favorite form of light sedation is likely a margarita or two, fresh fruit (no mix), on the rocks, no salt.  Is that what they have in mind at the interventional radiology clinic?  Somehow I doubt it.

If you want to know the truth, I’ve spent the better part of this month “lightly sedated.” It may come as no surprise that being tested for cancer, and not having any definitive answers, yet, induces a lot of fear and anxiety.  I am able to work some of that our here in my blog, but the truth is that for the past few weeks I have been taking an Ativan a day.  One pill around the cocktail hour seems to keep me from freaking out for about 24 hours, so that’s good.  Some of my other efforts at light sedation include twice daily meditation, which I like a lot more than I thought I would, an occasional glass of wine, playing a video game that allows me to blast cancer cells away with an animated immune system, and work.  Yes, work.

This is a very busy time of year at the museum, always seems to be.  The school year is fully underway, we have a whole slate of important and popular public programs, we are preparing for next year’s exhibitions, and I am involved in a host of other short and long term projects. Being that busy is great!  It leaves very little time to ponder my future, which is still uncertain.  Equally important much of our work is advance planning, preparations for the future, and let’s face it, I am somewhat concerned about how much of a future I’ve got (though I am pretty hopeful).  And so in some way, all of this preparation for future exhibitions, programs, and other projects, is a kind of light sedation, a comforting agreement between me and myself that ignores any negative possibilities and fully assumes that I will be around to see these projects to fruition.

When I began writing this piece I thought I would conclude with a paragraph on how the whole experience of learning you may have cancer results in a kind of light sedation, a numbness that helps you accept your circumstance, but that’s bullshit.  I am frequently scared out of my mind!  They’re gonna stick a needle in my back on Monday, and since it’s in my chest, they’re not sure whether I’ll need one or four days to recover!  After that I have to wait over a week to find out what the biopsy says and where all this is headed, and then I am almost certainly going to have to take a cocktail of various poisons to whip this thing into submission.  The knowledge of having cancer doesn’t lightly sedate you, it compels you to find ways to lightly sedate yourself, to find a balance between an uneasy calm and gut-wrenching anxiety.  So I am thankful that they’re going to lightly sedate me for my biopsy.  Afterwards, I will continue with my own forms of light sedation until I have some sense of closure or completion.  I have no idea when that moment will arrive.  Stay tuned.

 

 

A Joke

Since I let spill with the whole cancer, thing, a lot of people have been hugging me at work.  This morning one of my colleagues, a young woman with an incredibly wry sense of humor, comes up to me and asks, “Why is everyone hugging you?”

“Oh yeah, uhmmm I likely have cancer,” I replied.

“Oh I’m so sorry,” she said.  

“Yeah,” I lamented. “I’m not happy about it, but it’s likely lymphoma, which has a pretty good cure and survival rate.  So if you gotta have cancer, this is probably one of the cancers you wanna get.”

After thinking about it for a minute she flashed this indescribable smile, at once happy and devilish.  “Well good for you!” she cheered, as if to say to me good job picking the right cancer, Erik.

I laughed then and I’ve laughed quite a bit since thinking about her reply.

Good for me, indeed!

Post 5: Answering Your Questions

I am fairly new to this blogging thing, but the folks at WordPress tend to like it when you hit numerical milestones.  And I guess a fifth post is sort of a big deal.  So the truth is I likely would have held off on this post for a bit and thought a little more about what I wanted to say, but for my fifth post I’ll go ahead and answer a few questions that have come my way this week.  After that, I’ll hold off on post 6 until start freaking out about my biopsy (scheduled for Monday the 28^th).  So here we go, your questions:

Q. What kind of lymphoma do you have?

A. I don’t really know.  Can’t even be 100% sure it’s lymphoma.  The truth is that they have not completely diagnosed my disease.  The biopsy should answer those questions.  My Drs. are basically going on the “if it walks like a duck” theory.  My scans look like lymphoma, my petscan looks like lymphoma, my oncologist has seen a lot of lymphoma, and this is generally what it looks like.

Q.  Wait, if you haven’t had the biopsy, couldn’t this be benign, like an infection or something?

A.   Yes, sure, but again it walks like a duck, and so a whole mess of medical professionals would have to be wrong—including a few that I trust.  So we’ll see.  Maybe this becomes a blog about miracles and making a colossal fool of yourself in the blogosphere.

Q. When will you know for sure?

A.  My post-biopsy appointment is November 7^th. Stay tuned.

Q. How do you feel?

A.  Fine.  I have no symptoms.  NO SYMPTOMS.  This is both comforting and frustrating, comforting because no symptoms may mean early stages, frustrating because at times I can’t believe that any of this is true.

Q. How are Amy and Emma doing?

A.  Best I can tell, good.  Sadly, they’ve been around a lot of cancer in their lives.  (I refer you to my previous post: “So Much Friggin’ Cancer”).  We are all taking this day by day.

Q. How is it possible that you predicted the Giants’ potential after the first game of the season?  Are you psychic or something?

A. I know my team.  Also, I can read injury reports.  I have never had much faith in David Wilson, and when Stevie Brown got knocked out for the season….well that was that.  No running game, no defensive secondary, and, oh yes, no special teams play.  You don’t have to be a clairvoyant to figure this one out.

So that’s it.  Post 5.  Questions answered.  I will try and hold off on the next post for a few days.  Thanks to so many of you for reading, responding, and caring.

So Much Friggin’ Cancer!

 

Years ago, when my parents wanted to try and scare me into losing weight, they would tell me that our fat relatives died of heart disease.  My paternal grandfather, a few cousins, etc.  Over time, though, I’ve come to see that cancer, not heart disease, is the most common ailment in my family, and frankly my world.  As Jerry Lee Lewis might say, there’s a “whole lot of cancer going on” in my family.  My mom has had cancer, her sister, her mother, an uncle, and at least two cousins.  That’s a whole mess of cancer, and that’s just off the top of my head!  On my dad’s side….well we lost him and his mother to cancer. His sister impressively survived leukemia.  And once again, I haven’t really dug deep into the family tree to see how far down the cancer root burrows.

In my work world, I am surrounded by cancer patients and cancer survivors, wonderful women and men who have drawn on incredible strength either to defeat the disease or keep it at bay (no, I do not work in health care). In truth, I had no idea just how many cancer survivors I worked with until I came out of the lymphoma closet, so to speak.  Soon people whom I have always known as perfectly healthy, fit individuals who faced nary a bump in the road had shared their stories of cancer combat and victory.  They have quickly become my inspiration, and I assume I will pester them with all kinds of questions as I continue down this path.

I am not sure what to make of all this cancer.  Certainly I feel a little less afraid about heart disease.  And thanks to all of these wonderful survivors in my life I do have this comfortable sense that cancer is something you can treat and defeat.  Still, I wonder what it is about the world we live in that results in so much cancer. I mean, we are not talking about identical types of people here.  Cancer seems to have indiscriminately attacked a range of people in my life—men, women, fit people, couch potatoes, smokers, health nuts, New Yorkers, Angelenos, Jews, Italians, Native Americans, Wasps, old people, young people, I even have a friend whose son was born with cancer.  Born with cancer?  WTF?

Naturally I want to make sense of all of this, to construct a narrative that explains the preponderance of cancer in my world and clarifies my own experience with the disease.  Surely there is a message here, yes?  We eat too much meat, watch too much TV, it’s pasteurized milk, or wine, or non-organic vegetables, or pre-marital sex, or my wasted years in show business, or some such thing.  Or maybe it’s God trying to speak to me.  I realize, though, that this is all self-indulgent nonsense.  There is a randomness to reality that defies reason and narrative and above all has nothing to do with me. I know that this sentiment is anathema to historians, whose raison d’etre is to impose a narrative explanation on all things, and as an historian, I want it all to make sense, but it simply doesn’t. 

And that, I think is the scariest thing about all this damn cancer.  It seems to come out of nowhere, and affects people for practically no reason at all.  It lurks in the dark like a mugger or a murderer, waiting to catch us unawares and take our money, sanity, and possibly our lives.  So we try our best to defend against it.  We eat better, exercise, maybe learn Karate or Krav Maga to kick cancer’s ass.  Too often though, cancer doesn’t give a shit.  As Joe Jackson reminds us, “Everything gives you cancer.”  Sadly, though, a very limited number of things cure it.  Let’s hope I find at least one for me and every other person I know with cancer finds one too.   Because I am really over all this friggin’ cancer.

Empathy, Sympathy, and Decency in the New Millennium

In many ways, my dad’s funeral was awe inspiring, 200 plus people crowded into a small funeral home chapel to pay their respects to a man who, let’s face it, could be a bit of a pain in the ass.  I mean, don’t get me wrong, he was brilliant and had a great heart, but he was surely a massive and dominating presence in people’s lives.  I have often wondered if I could pull a similar crowd.  After all, my friends are spread across the globe.  I’m not the best at staying in touch—better than others, but far worse than many.  I live in Los Angeles and most of my family lives in NY.  Who would possibly come and pay their respects to me?  Now, though, I suspect that I could equal if not exceed my father’s send-off, at least virtually.  The outpouring of care and kindness that has emerged in response to first posting was, at once, gratifying, humbling, overwhelming, heartbreaking, and reassuring.

This isn’t a post about funerals, though, at least I don’t want it to be.  It is really a post about a new world.  Imagine if, some 20 years ago, I had announced that I was fighting cancer.  The news would have spread through the, then, usual channels—phone calls, friends in bars, the occasional letter.  It would have taken weeks or months for people across the globe to learn about my new challenge, more time still to get back to me with their incredibly lovely good wishes. In this world, our new world, within 24 hours of my first post I had received so many wishes of love, kindness, and good wishes that I was practically in tears. Thanks to Facebook, people I hadn’t stood in the same room with for years were wishing me well.  Others whom I thought I knew quite well were telling me their own stories of cancer survival.  It’s all quite extraordinary.  It feels as big, warm, and caring as my dad’s funeral, and I didn’t even have to die to experience it.

As many of you know I am a brutal critic of our hyper-communicative world.   I am suspect of 24 hour cable news, Twitter, and I even refuse to repost those chain postings on Facebook.  You know the ones, “if you post this thing about God, or brothers, or sisters, or mothers you’re a good egg and something good will happen to you.” I think that these kinds of developments have cheapened society, stripped our world of depth, and turn almost all efforts at sincerity into mere bumper sticker slogans.  But the overwhelming kindness and decency I experienced in response to my first post, has got me thinking that social network may be more social than I think, more empathetic, capable of greater depth and of conveying true connection.

Perhaps I have conflated the media with the message.  The problem may not be Facebook or Twitter (though I’m still not sure about that one) but the empty and meaningless things we choose to talk about.  We’re often in a race to see who can say the snarkiest thing about the crappiest politician, or tumblr post, to post some ironic statement on a YouTube video of kittens, to say something funny about bacon, or, as I often do, to ironically comment on our failing football teams.  Don’t get me wrong, that stuff is fun, but let’s face it, it hardly suggests that Facebook or even the blogosphere is the best means of in-depth communication.  But the response to my first post suggests to me that people (or at least my Facebook friends) will rise to the level of discourse in front of them, and flood a needy soul with love, support, and kindness.  Thanks to all of you, and an unexpected finding of lymphoma, I am a little less cynical than I used to be.  Wow!

My New Stuff

In a consumer society like ours, one’s state of being is often defined by the things they purchase, services and objects that they soon come to call their own. If I am on a health kick, I buy my athletic shoes, my yoga mat, my spinning classes, my new clothes for my new body, etc.  When my wife was pregnant we bought all kinds of books, clothes, and classes.  Despite the contrarian claims of my friends who’ve dipped their toes into the so-called makers’ movement, one can really learn a great deal about us by what we buy.   I am amazed at how quickly this process sets in with cancer.  First there was my CT scan, not a CT scan of me, but MY CT scan.  Then there was my spiral CT scan, then my Petscan, and, of course my oncologist.

My oncologist is a lovely kind young woman who has patiently sat with me and explained why, despite the fact that I feel just fine, all of my tests point to cancer.  She will help me fight cancer and hopefully, over time, beat it.  She is no longer merely a Dr. or even an oncologist.  She is my oncologist.  I don’t own her, but I purchase her services regularly, just like I might a trainer, life coach or masseuse.   And despite the fact that I know full well she is not a possession, I cannot stop referring to her as mine.  The original results of my Petscan (see how I did that?) were reported to me by another oncologist.  He was not particularly kind or caring, and I just didn’t feel comfortable with him.  Not until my oncologist called the next day did I truly understand the direction of this process and the likely diagnosis, which I will learn for sure over the next week or so.  Once I spoke to her I called my wife and mother and told them I had finally spoken to my oncologist and I felt a little more comfortable for having done so.  I know that there is a kind of magical thinking in all of this…. MY oncologist! No doubt she is the oncologist to hundreds of patients, there is nothing particularly unique or special in our relationship, but she is part of my new set of stuff, one of the services and things that I now spend my money on in an effort to keep from dying young and somehow that elevates the relationship in my mind.  Selfish? Reductionist? Shallow?  Yes, perhaps, but also inescapably true.

Soon other stuff will follow.  No doubt my biopsy will be next week, followed by my diagnosis, then my course of treatment, my chemo, maybe my radiation, my medicines, possibly my pot if I find that my chemo makes me nauseous, then more scans, my next Petscan, my next prognosis, and ultimately my health, which to a large extent will be determined by all of my new stuff.   It’s weird, I know, reducing one’s battle with cancer to a consumer exchange, but in many ways, that’s exactly how we handle it.  We pay money to people and companies to determine a course of action and then to give us poisons and medicines.  We pay others to take pictures of our insides to understand whether we’re winning or losing, and then, God willing, we pay some hotel on the Central Coast of California to host our first cancer free celebration—at least that’s what I’m aiming for.  It’s all part of my new collection of stuff…the stuff that comes with cancer.

Slower Than a Speeding Bullet

Slower Than a Speeding Bullet

 

In the summer of 2000 we were certain that my wife (Amy) had cancer.  Her red blood cells were odd, misshapen, enlarged.  Prior to a visit to a hematologist, we googled her symptoms and discovered that the only possible explanation for this anomaly was multiple myeloma, a deadly and disabling cancer of the bone marrow.  We cried, travelled to the Central Coast of California and drank wine to excess, and then went to our appointment with the hematologist.  Immediately he explained to us that Amy could not possibly have cancer, her platelet levels were fine, and platelets take a nose dive when you have multiple myeloma.  There was one more thing he wanted to test for, but it wasn’t cancer.  On our second appointment he told us that my wife was a carrier of a potentially dangerous genetic defect that caused misshapen blood cells, but that she did not, in fact, have the condition herself, nor, thankfully does our daughter.  “You dodged a bullet,” he said.  And happily we left his office never to return.  Years later, a bizarre reading of a mammogram led to another cancer scare.  Again, certain of her diagnosis, we reasoned that this was likely beatable and treatable and we were ready for whatever might follow.  On closer inspection, all turned out to be fine.  Again, another bullet dodged.

 And so there’s a certain unsettling irony in my recent cancer diagnosis.  This time we were certain that I did not have cancer. I have no symptoms, no night sweats, no fatigue or weight loss (I weigh a lusty 220 pounds on a 5’8’’ frame)….no nothing!  But one night this past September I found myself in the emergency room in excruciating pain.  It turns out I was suffering from a kidney stone (my first), but the emergency room Dr. saw something in the CT scan used to locate my stone….something big and in my chest.  Subsequent scans identified the growth as a cyst, problem solved, no cancer!  But the CT revealed enlarged nodes and an enlarged spleen, and so more tests.   Then, Wednesday afternoon a young Dr. called and told me the previously diagnosed cyst was likely not a cyst at all, but rather cancer, likely lymphoma, and I would require a biopsy.  The bullets just keep flying, and while my wife has the skill and dexterity to dodge them, I am slower moving, less agile, and seem to have caught one right in the lymph node.  Bastards!

I am not sure what the purpose of the blog will be.  I have tried to blog in the past and have lacked the stick-to-it-tiveness required to fashion a consistent and meaningful blog presence.  Also, I am not sure I want to bore the world with the well-known tales of hair loss, nausea, fear, and, God willing, triumph, that form so many popular cancer blogs.  Perhaps I am just talking to myself, here, to be comforted by my continued ability to communicate clearly in the written form, and to use that as some kind of gauge for my health and happiness.  I simply don’t know.  I just know that right now I want to write and to do so publicly.  To share my stories and see if they resonate and what they generate.