Archive | November, 2013

Wish Dad Was Here

24 Nov

Me and Dad

 

On January 1st, 2008 I lost my dad to metastatic melanoma—four weeks to the day before his 66th birthday and a little more than a month before our beloved New York Giants took down the, then, undefeated New England Patriots in Super Bowl XLII.  With the help of his family, friends, and a revolving cast of prominent doctors, dad valiantly and aggressively fought cancer for many years.  He was stubborn, determined, pretty brave, and perhaps a little wilfully ignorant of the danger before him. As I said at his funeral, my dad was my hero.  He had fought for the civil rights of countless African-Americans.  In doing so he had battled a powerful and vindictive Nixon administration (and admittedly lost).  He was a loyal and trusted advisor to numerous friends and colleagues, and he bravely, almost stoically, took on one of the most aggressive cancers known to man and held it bay for several years.

These days, as I deal with the incredible uncertainty before me, I find that I miss my dad.  I miss my dad so much that I have literally said so, out loud, in my car, alone, several times.  Let’s be clear, I don’t think dad would have been particularly helpful in advising me on how to address my current condition.  He likely would have blamed my eating, gotten mad (out of fear for my health and safety, no doubt), and we probably would have argued a lot.  I didn’t say he was an easy man to get along with.  I said he was my hero.  There’s a difference.  But none of that has anything to do with the reasons for missing my dad at this moment.  I miss my dad because I believe that he is the only person in my social network who knows (or knew) what it feels like to live from scan to scan indefinitely.

Once it metastasizes, melanoma never leaves you.  It is systemic.  It seeks out places that take on blood.  It likes the spleen, the liver, the brain, the lymph nodes, and other places.  The only way to fight it is to elevate your own immune response to insane, sometimes excruciatingly painful, levels—something my dad experienced on numerous occasions.  But since melanoma is likely always with you, there is no moment at which doctors would pronounce you cured and send you on your way. You always live from scan to scan.

I am not sure what the future holds for me.  One person pointed out that perhaps I will have this thing in my chest removed, the nodes will shrink, and this whole thing will have been a bad dream.  On the other hand there is a reasonable enough chance that I could live the rest of my life from scan to scan.  And at times, that thought is profoundly unsettling.  I have tried to turn my new reality into a positive, and in truth I have had some success.  I eat better, exercise more; I try to experience life in the moment.  I’m ok…..so far.

Still, every now and again, I wish I could commiserate with my dad, to talk to him for just a few minutes as fellow travelers in the march of time. We could kvetch together. Maybe he could give me some tips on what worked for him. And I guess, above all, it would just be nice to sit and talk to my dad, again.  Anyone who knew my dad well probably knows how the conversation would go.

I would say something like, “Dad, this thing in my chest, the scans, the doctors, it’s making me nuts!”

And my dad would say, “Relax!”

Actually, he wouldn’t say it quite that way.  He would say, “Relaaaaax!” extending the “a” sound in this rather amusing way.  There was a certain cognitive dissonance in this expression.  After all, commanding someone to relax generally produces the opposite response. Still, for many who knew dad well, his call to relaxation is an indelible memory of him and his personality.  Indeed, on the day of my dad’s funeral, as we sat in my mother’s kitchen waiting to head out the door, my brother in law came in and, doing his best impression of dad, said, “It’s just my funeral, relaaaaax!”  We all laughed, relaxed a little, and went to the funeral.

I should probably close by recognizing that I know lots of people who have battled cancer, and so, for a time, they too have lived from scan to scan.  Were he alive today my father surely would not be the only person I know to feel this feeling of uncertainty and limbo.  Still, I think that missing my dad at this particular moment is quite natural, even if it is based on a misperception. Whatever the reason, I miss my dad.  My mother is here.  My wife, my daughter, sisters, cousins, aunts, friends….they’re all here, and dad is not.  Sure his advice would have been of limited utility (especially since my mom did most of the research that helped dad live as long as he did).  Sure, I would have cringed every time he told me to “relaaaaax.”  But he is family.  He is my heart.  He is a reminder of both the frailty of life and the individual’s ability to fight the good fight for as long as possible.  And sadly, he is gone.  I wish he was part of the unbelievably large support group that has made this time a lot easier.  I wish he could talk to me, and I wish he was reading this post right now, checking it for grammar and syntax, and then calling me up with his comments and critiques.  I miss him.

God’s Back: Prayer, Longing, Comfort and Consolation in the Digital Age

16 Nov

 Those of you who know me know that I am moderately religious.  Our family makes a good effort to have Shabbat dinner most Friday nights.  My synagogue attendance, ebbs and flows. And every now and again I read Jewish texts to try and understand the thorny relationship between the Jews and God, and vice versa.  One of my favorite Jewish texts concerns the encounter between Moses and the Almighty, and by connection all humanity and God.  In the Torah we are told that when Moses asks to see the face of God, the Almighty replies that, “No one may see me and live.” And so Moses is instructed to hide in a little cave or cleft.  God then covers Moses with His hand as He (She, It, etc.) passes.  Once He has passed by, He removes his hand and Moses sees God’s back.

The explanation I have heard most frequently for this biblical tale is that we are not able to see God directly.  We just can’t perceive the infinite in any meaningful way.  We cannot observe nor fully comprehend the mystery of time, or creation, or grace.  Instead, we can see the effects of God’s work, after the fact.  We can’t really glimpse the moment that the ineffable qualities of life infuse a zygote, but we can see the human being that zygote produced.   We can’t see the creation of the wind, but we feel its effect.   And we can’t really hear the most desperate prayers of others as they seek help and comfort, but we can certainly see the joy and relief in the face of someone whose prayers are answered.  God’s back.

Without trying to be too maudlin, I can honestly say that over the past month or so I have repeatedly seen God’s back.  I can’t see the way that human connection is formed, but I see the results.  My family has been unimaginably supportive and kind, as have the countless friends that have reached out to me.  They have offered sympathy, company, encouragement, health tips, shared their stories of triumph over illness.  They have provided tips for dealing with chemotherapy—which I may not need, but the information is still important and deeply appreciated.  One longtime colleague and friend has offered to drive me to chemo sessions (should I need them).  Another person whom I haven’t seen in years, not since my father’s funeral, is contacting a well-known cancer specialist in NY to see if they can recommend a specialist in LA.   As I have said several times on this blog, I feel surrounded by love.

And the truth is, before I even knew I had a tumor, or an enlarged spleen, or any other misshapen structure inside my body, I had asked for God’s help. Our High Holiday celebrations were, atypical this year.  Since my mother was leaving our longtime family home, we decided to spend Rosh Hashanah in the family homestead in New York.  Also, we had become somewhat less passionate about our synagogue community in Los Angeles and so we decided not to rejoin this year.  This meant we really had no place to observe Yom Kippur.  Fortunately, the Jewish Journal offered a live link to the Nashuva community’s Kol Nidre service (the opening service for the Day of Atonement).  Amy, Emma, and I watched from the comfort of our living room.  As I listened to the service in our small townhouse, separated from the thousands of Jews who would observe this rite in synagogues across the city, I began to feel quite lonely.  I cried a little, and I asked God to help me find a synagogue and a community to sustain me in the coming year.  Thirteen days later I woke up in incredible pain from the kidney stone that would initiate this whole odyssey of radiologic scans, oncological consultations, sharing my challenges on the web, and the remarkable support of a community of friends and family.

Naturally all of this is coincidence, too.  Does God literally answer prayers 13 days after the initial prayer?  I don’t know. Seems like an odd number more in keeping with postal delivery than answered prayers.  I know people who wait years to have their prayers answered and some who refuse to believe in God at all because of the personal suffering they’ve been forced to endure throughout their lives.  Also, I have yet to find a new synagogue, though the old one is starting to look good again.  And finally, is this God’s answer to my prayer?  An 8 cm mass in my chest?  Really?  Seems a little much, no?  Still I cannot escape the fact that in a moment of existential loneliness I reached out to God, and while I did not see Him, I did seem to see his back. Coincidence or not, I am grateful.

I Am a Big Ol’ Hypocrite: One Lesson Learned in a Painful Month of Lessons

12 Nov

Several years ago, one of my former students announced on Facebook that she was blogging and we should all check it out.  At the time I didn’t think much of blogging, especially personal blogging, that genre of internet exchange where one can either share the first thought that comes into their heads (“I like grilled cheese”) or pursue a more in depth treatise on one’s inner life (“I think the reason I like grilled cheese is that it was the first dish I learned how to cook…etc.).  I read my former student’s postings, a brief consideration of hook-up culture viewed through a kind of third-wave feminist lens, and got back to her with my thoughts.

“This is too personal.  You’re going public with things that should remain private.  The whole world has decided that the internet is a big confessional, and I for one am tired of it,” I arrogantly opined. 

Unfazed by my obnoxious ramblings my student made clear that her life was an open book.  She had nothing to be ashamed of and nothing to hide.

No shame? Nothing to hide?  I don’t know if the social conventions of the world, even the cyber-world, have really benefited from that kind of reckless abandon, but I do know that it was wrong of me to admonish my former student for her brave act of sharing.  I might have told her I didn’t particularly gravitate towards her topic, or perhaps corrected her grammar and spelling, but to give her a hard time for being brave enough to share her thoughts and feelings with the broader world….that was wrong.  I’m sorry.  You know who you are.  I told you I was writing this apology, and here it is.  Let’s face it, I’m a big ol’ hypocrite. Those of you who know me know my past disdain for the revelatory nature of personal blogging, and yet here I am working out my own personal concerns about health, fear, and happiness on the World Wide Web.  I am the poster child for self-righteous hypocrisy. 

There is nothing I can say in my defense except that, I was wrong, and, really, I should have known better.  In a 2010 essay, the UCLA historian Lynn Hunt reminded her peers that “writing leads to thinking (and not the other way around). “Thought…emerge[s] from writing,” Hunt asserts. “Something ineffable happens when you write down a thought.  You think something you did not know you could or would think and it leads you to another almost unbidden.”  This piece left a big impression on me when I was writing my dissertation, and it continues to influence me today. 

Writing leads to thinking.  That’s what I’ve been doing here for the past month or so, attempting to think through my physical and existential concerns by trying to articulate them in written prose.  Something ineffable has happened to me and my thinking while writing this blog and it helps, a lot.  Having an audience for this particular exercise is not, strictly speaking, necessary, but it does keep me on task.  It forces me to articulate as clearly as possible what is whirling around in my head at breakneck speed.  It also presents some sense of boundaries about the number of acceptable rants and the acceptable interval between each post.  Also, I like reading people’s responses to my thoughts.  Egotistical? Perhaps, but I prefer to think of it as a manifestation of my intellectual curiosity and of greater importance, a way to stay in touch with long lost friends.

So I am sorry that I am a big ol’ hypocrite.  I thank all of you that have the patience and interest to read my work, and I will continue to blog until it becomes physically or emotionally impossible, or until I get embarrassed by my new earnest streak—which I hope never happens.  Until then, thanks again.

A New Day! But Can I Feel Better?

8 Nov

Wellness

 

Last weekend a friend shared with me her story of cancer survival.  People have been doing that a lot, lately, and I really appreciate it.  What stands out about this particular story was not the traditional recitation of numbers—“cancer free for 19 years;” “I had X cancer in 1999,” etc.—but rather her sense of healing.  She told me that her doctor had explained that her tumor(s) had likely been growing for decades, and she simply couldn’t tell. “But when I completed my therapy,” she said, “I felt cured.  I felt better.”  Cured…better, how wonderful.  Faced with, what I was told to be, a large cancerous tumor in my chest, I wondered if I could ever be cured, feel better than I do.  I think that my new and uncertain diagnosis places a lot of the onus on me to work that one out.

As some of you may know, this whole experience began with a kidney stone, which may have come about because of poor hydration, which probably came to pass because I had just joined a gym and had gotten dehydrated after one of my workouts.   When I met with the salesperson at the gym he asked me what I had hoped to achieve by joining.  I told him that I wanted to avoid dying of a heart attack at a young age.  While my glib response was grounded in a certain surface truth, in all honesty my sarcasm masked a deeper, more troubling truth about me, my sense of aging, and my rocky relationship with my body and body image.  Over the past five years, or so, I have begun to feel a little achy, a little run down, far too sedentary, and just…old, or at least older than a 49 year old should feel.  I attributed much of this to my weight, my lifestyle, the passage of time.  All of that is surely true, and I know there are things I can do to improve my state.  Despite, or perhaps because of, my uncertain diagnosis, I continue to go to the gym.  It makes me feel younger, calmer, better.  Since taking up some of the food tips from Katz’s book, The Cancer Fighting Kitchen, my eating has gotten better and my energy is quite good.  Still there are the dull aches, the occasional twinges, the unexpected pain that lasts for less than a second—all things I have attributed to the pull of gravity and the ravages of time.  I wonder, though, have I, perhaps, been feeling the effects of a large, benign tumor, an enlarged spleen, or some oversized lymph nodes and was just too dense to know it? I really don’t know. 

The reality is that I have spent many, MANY years of my life feeling bad in and about my body.  These feelings have, for the most part, centered on my weight and body shape.  I have been scolded about my weight. I have been told that it will kill me.  I have gone on diets, gone to the gym, given up and overindulged, and then—eventually—gotten on the weight loss bandwagon again.   I have been frustrated, angry, and ashamed.  And lately, I have just felt bad—bad because I perceive myself as less vital, less fully engaged with life, and yes, less attractive, but frankly I just feel…diminished.  I have attributed this to my ongoing battle with weight and the passage of time, but now I wonder if some portion of my malaise has been an unbeknownst, ongoing battle with other unseen developments inside my body.  I don’t know the answer to that question, but I do know that to turn this recent experience into something transformative, to recognize that every day is an opportunity to change and actually feel better than I do now (both mentally and physically) would be an extraordinary thing, a wonder, really, an unimagined miracle!

 And in some sense, I believe in miracles.  In keeping with Jewish tradition, every morning I thank God for the miracle of putting my soul back in my body.  In my own spin on the prayer, I acknowledge the miracles of life and creation, of family and friends, of earth, water, and sky.  But the miracle of health has not been part of my worship agenda…until now, of course.  I think that, going forward, I will pray not only to not have cancer, but to feel better than I do, to not merely settle for not being sick, but instead to actively seek health and good feeling.  As my people often say, keyn ya hi ratzon (may it be so).

Amen.

The Answer is NOT Cancer: Joy, Concern, Confusion, and the New Direction of My Life

8 Nov

I swear to all of you that I did not rush blindly into this blog and its title.  Three weeks ago a young oncologist called with the results of a Petscan and told me that I definitively had some form of lymphoma.  A day later my oncologist told me that I surely must have the disease.  The interventional radiologist showed me the scans that confirmed the diagnosis, and swore that the mass in my chest was lymphoma.  I read the conclusions of every report and they all said either lymphoma or LIKELY lymphoma.  Point is, I am not trying to jerk anyone around here when I tell you, “I don’t have cancer!!!!”…….Probably.

The oncologist, not mine, she was out of town, came into the office, and announced that I have a benign spindle cell tumor.  “Why do I have an enlarged spleen and lymph nodes, I asked?”

“I don’t know,” he replied.  “They could be reacting to the tumor, or you could have lymphoma.”  We may be looking at two separate things, here.

And so the truth is that we begin what lymphoma patients call, “watchful waiting.”  I will have a petscan in two months.  If anything has grown, we get it and see if that’s cancer.  If my tumor grows, I consult a surgeon to see how we remove it–that will not be easy, I can assure you.  And so I live in limbo.  I suspect we all live in limbo, but my limbo has bi-monthly reality checks, for now.

I have found the writing of this blog to be cathartic and quite social, and so I will continue to do so and I hope you will continue to read and share in the new normal of my life.  I will change the title, though, if WordPress will allow me to do that.  Maybe “Cancer?  My New Adventure in Uncertainty.  Or “Limbo: Tumors, Cancer, Health, and Madness in the New Millennium.”  Thoughts?

Just Plain Ol’ Fear and Uncertainty

5 Nov

 

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I am afraid that I have nothing clever to say, here.  No insights that reveal something about me or an important lesson about dealing with cancer, today–not that I have ever really achieved those things in this blog.  This is just a reminder that Thursday afternoon I see the oncologist to learn the results of my biopsy.  I continue to pray that the phone does not ring between now and then with unexpected news, and that when I do see the Dr. the news is expected, likely unpleasant, and bearable, as opposed to completely unpleasant and unbearable.  It is truly amazing how low the bar is set for what I consider lucky,right now.  If you are praying, or hoping, or wishing people, please join me in this hope and prayer.  I need the support right now.  

Cancer Closer

2 Nov

Cancer Closer

I’ve noticed that a number of you have been taunting my cancer.

“That cancer doesn’t know who it’s dealing with!”

“Cancer picked the wrong man!”

Etc.

Your enthusiastic, and much appreciated, taunts suggest that I am the Joe Louis to cancer’s Max Schmeling , the Roadrunner to cancer’s Coyote, or my favorite, the New York Giants to cancer’s New England Patriots.  To read your numerous barbs at my cancer, one must believe that I am one badass, cancer kicking motherf…, well you know the rest. I will take cancer’s lunch money, slam it into a locker and tell it to back off, beat it up in the parking lot and steal its girlfriend.  I am the man, and cancer is the mouse!

I thank you for your well-meaning trash talk, and I hope that my cancer has been listening and is sufficiently scared.  The truth is though, that if you’ve known me for enough years, you know that really, I’m a bit of a wuss.  In 3rd grade I tried on the bully persona and picked on a timid, though admittedly large, kid in school only to get my ass kicked in front of the school while the kid’s mother cheered him on.  When we moved to Hollywood in the 90s, my friend and I tried to stop a guy from giving his girlfriend a hard time only to run away when he got out of his car and came after us, and back in the Blues Brothers Show, I got involved in a minor scuffle that witnesses described as more of a romantic slow dance than a vicious fight.  This is not to say that I don’t appreciate the encouragement, I do.  I’m just not sure you’ve picked the right persona for me.  Sadly, at least sad for this instance, I am not a badass.

What I am, what I have become over the past 14 or so years, is a closer.  I set my mind on a goal and I work relentlessly, tirelessly towards it.  In 2000 I was an out of work actor sliding along from gig to gig when Amy and I decided to change our lives.  I decided I would go back to school, finish my degree, and become a teacher.  About two years later the goal became much larger, to undertake a graduate degree and become a public historian AND teach in university. None of this made any sense.  I was in my mid-thirties, had already failed of college…TWICE, and simply didn’t seem to be the intellectual type.  But the truth is that around that time something had changed in me.  I came to understand that successes are created one small step at a time.  Though I may have occasionally whined about my plight, and I surely didn’t do it alone (virtually every person who reads this blog helped me at some point along the way),  I never stopped working towards my goal to close the deal and achieve the success I had envisioned.  Today, as many of you know and likely tire of hearing about, I hold a PhD in history and am the head of education at an important museum in Los Angeles, and yes, every now and again I teach history at university as well.  I closed the deal.

This is my plan for cancer, too.  My goal is to methodically, and with lots of help from everyone, make my way through the numerous treatments and challenges that will lead to a durable remission or, as is often the case with lymphoma, a chronic but entirely livable and long-lived version of the disease.  I have told my family that ten years from now I want us to look back on this period as a defining moment, a time when we learned more about ourselves and our strength, a time when, together, we defeated my cancer.

When that time comes I want your Facebook pages to ring out with taunts and cheers.  Cancer was no match for Erik.  He doesn’t seem like much, but he’s a closer.  Suck it, cancer….and other such jibes.  Till that time comes, you may feel free to describe me as the John Shaft, or Bruce Lee of cancer patients—or whatever other badass comes to mind.  Truth is, though, I’m not a badass.  I’m just a closer, a steady, methodical, and determined person who will keep moving forward until the deal is done.  Watch out, cancer.