Hope Everlasting

On the eve of my HIPEC surgery, I wanted to write about hope.  It’s a word that’s bandied about so frequently when you have cancer.  “You cannot give up hope,” Josh has told me many times.   “There’s always hope,” more than one cancer survivor has told me.  People have recommended to me the book (which I’ve read), the Anatomy of Hope, one oncologist’s account of how important it is to maintain a realistic hope, littered with the occasional tale of a patient’s improbable defeat of cancer against all odds.  The fuzzy concept of hope, this feeling like something desirable can be attained, is so prevalent in the world of cancer, that it seems to me like it takes on a holy quality that people embrace purely based on a religious-like faith, like if you have it, it will sustain you through your darkest hours and maybe even cure you.  Because the word is invoked so often, hope can also frequently feels like a cliché.  After all, how can you say there is always hope when clearly at some point death is imminent – where is the hope then?  If you know me, or even if you have read just one of my blog posts, you know that I’m not one to accept triteness and clichés.  I analyze everything in an effort to determine whether the cliché is some empty platitude or whether it actually contains a profound idea worth incorporating into my world view.  For example, I considered early on in Invictus the commonly-uttered statement (and variations thereof), “Everything happens for a reason”.  This post is of a similar vein, reflecting my months-long contemplations about this illusory sentiment of hope that people seem to love so much without really understanding why and which people seem so insistent that I should have.  Must I really have it?  Is there indeed always hope?  Is it truly a positive force?

One would expect that I would be the biggest champion of the virtues of hope.  In many respects my life – blind girl born in Communist Vietnam makes it to America and does good – is all about the realization of impossible hopes, particularly those of my mother, for it was she who dared to hope first.  Indeed, it is my mother’s stories of life in Vietnam and our escape that I’ve turned to often in the last eight months as I’ve examined the value of hope.  Her stories reveal the mercurial nature of hope; it is like a fire in our souls, sometimes flickering weakly like the flame of a single candle in the night and sometimes raging mightily casting a warm and brilliant light of limitless possibilities.

My mother – a truly gifted oral storyteller – has often recounted the scenes of the last days leading up to the Fall of Saigon.  The city was in chaos as the Americans fled having given up on their disastrous attempt to save the feeble democratic South Vietnamese regime.  My 30-year-old mother was one of the many who had lived through years of civil war and one of the many who watched with envy as the few Vietnamese who had either ties to the Americans, guts, luck, money or some combination of the above fled too.  Riding behind my father on his moped traversing the busy streets of the South Vietnamese capital in those final days, my mother witnessed firsthand how truly lucky some were.  She looked upon the scene of one American soldier pulling on the arm of a pretty Vietnamese girl, clearly urging her to come with him; an older woman who no doubt was the girl’s mother was pulling on her other arm, obviously begging the girl not to leave.  It was a tug-of-war that symbolized the opposing forces of American and Vietnamese, old and new, brightness and darkness, success and failure, even life and death.  Finally tired of the game of tug-of-war, the soldier with his easy strength picked up each woman in his arms, dumped them in his jeep and drove off into the setting sun.  My mother longed to go after them, to inhabit the glamorous and rich world of Marilyn Monroe and Jackie Kennedy that she’d glimpsed through the occasional American movie.  More importantly, she wanted to leave Vietnam in order to find better medical care for my sister who faced her own issues (although they were not by any means life-threatening).  How to do it exactly, she had no idea.  My mother was but one powerless woman in a large dynastic Chinese family, my father’s family, and for her to even voice such a desire would have been considered selfish as the sanctity of the entire family had to be preserved; no one could leave unless everyone could leave.  No, escape, much less escape to America, was a dream, a fantasy, a hope so impossible that my mother pushed it away during those days, to the recesses of her mind, and instead focused on getting through life under the new regime.  Yet, as dim as it was, the hope of a different and better life was born in my mother that day, a tiny flame that burned feebly within as the reality from without sought to extinguish that flame.

I was there with my mother and father, just a few embryonic cells floating in my mother’s womb, my fate of congenital blindness possibly already written into the DNA of those early cells.  I was conceived in the weeks leading up to the Fall of Saigon.  Perhaps that is why of all the stories my mother has told me over the years, the image of the girl caught in the midst of a struggle between her lover and her mother and the sense of my own mother’s secret hope have always held a particular resonance for me.

Obviously, by virtue of the fact that I’m writing this today, you know that my mother’s far-fetched hopes came to pass.  The poverty became so extreme that hundreds of thousands were prepared to risk their lives at sea to flee by night. As more and more people fled and letters and pictures arrived from France, Australia and America proving that a new life was indeed possible, my mother’s hope grew and grew and grew.  But unsanctioned escape was almost exclusively for the single and young who had easy mobility to move about in the dark of night, to snag the one or two spots left on a fishing boat leaving within hours; despite my mother’s building hope, there was still no way to manage the evacuation of an entire family that included my 79-year-old great grandmother, the matriarch of our family.  Ultimately, geopolitical forces played out in our favor as border disputes between Vietnam and China and cooling relations between the two countries caused the Vietnamese government to “invite” all ethnic Chinese to leave Vietnam with governmental support – a mild form of ethnic cleansing – subject of course to adequate gold payments and the transfer of all property to the state.  So in February 1979, we, which included my family of at least 50, boarded different fishing boats, often secured with the willing assistance of the Vietnamese government, at different times bound for Hong Kong and Macau.  I came to this country via the refugee camps in Hong Kong, via a rickety fishing boat that measured 18 by 4 meters (roughly 54 by 12 feet) carrying 300 people crammed against one another, during a journey that lasted a month and included 11 days on the open seas with little food and water.  We were lucky because our boat did not sink as so many others did.  We were lucky because we were not forced to engage in cannibalism as some other refugees were.  Less than a year after arriving in Hong Kong, the United States Catholic Church sponsored my immediate family’s emigration to the United States, fronting the funds for our Pan Am flight from Hong Kong to San Francisco.  On November 30, 1979, my mother’s longstanding hope were realized when we set foot on American soil.

Despite my sense that hope was virtually wired into my embryonic cells and certainly into my own life history, a sense I’ve had since my mother first told me our story when I was a little girl, I have found it incredibly difficult to embrace hope in the cancer context.  In the past eight months, I’ve often said, Fuck hope!  I don’t need it and I don’t want it.  I know, it is heresy in the world of cancer where people think of hope and God as one and the same.  When my colorectal surgeon told me he had removed all visible signs of cancer, when my CEA results came back the way I wanted them to, and when the second set of scans came back clean, I was happy, optimistic, hopeful.  I dared to have visions of talking to my girls as adults as they sought my advice (or not) about where to go to college, what careers to choose, what job offers to accept, whether to marry the young men who would love them.  I dared to create an image in my head and heart of me holding my grandchildren in my arms and thinking how I had battled through Stage IV colon cancer to be a grandmother. I dared to look at Josh and imagine us growing old together, seeing all the places in the world we’ve yet to see.  These visions and images were the ways in which I manifested hope.  But then, when the first set of scans did not come back clean and when the CEA results were not what I wanted them to be, particularly in the most recent episode, all of those visions and images were torn to shreds.  It was like the cancer, my enemy, had invaded my home, the innermost sanctum of my heart, and had murdered my dreams.  Cancer crushes hope, leaving a wasteland of grief, depression, despair and a sense of unending futility.  In the midst of an absolute conviction that I would never live the life I wanted or expected, I endured the sick churning feeling in my stomach and the protracted crying fits, utterly incapable of seeing or thinking beyond that minute, that hour or that day, never mind some distant improbable future.

A friend who has brain cancer told me at the beginning of my cancer-fighting journey, “Hope and fear are two sides of the same coin.”  I’ve been learning the truth of that statement ever since.  When there are expectations, dreams and hopes, fear always tags along, fear that the hopes will never be realized, fear that the heart will be broken, fear that death is close at hand.  I once asked my mother whether she was afraid when she sat on that precarious fishing boat, at the mercy of the sea gods and countless other gods who controlled her and her family’s destiny. I wondered as she sat there for days on end looking out on the vast expanse of ocean what she envisioned in her heart and mind, what she hoped for in those moments of absolute terror when she and everyone else were violently seasick, when she and her children were hungry with no idea when refuge would be found.  Did she dream of Jackie Kennedy?  Did she have images of American streets paved with gold?  Did the hope embodied in such images keep her going through the darkest moments of her journey?  “I wasn’t afraid because I had no expectations at that point,” she said, “I didn’t really think.  When I thought about the future, whether it was the next day, the next month or the next year, it was just blank whiteness.  There was nothing beyond that moment, that second even.”  In order to get through the ordeal, my mother essentially banned hope from her consciousness so she wouldn’t be incapacitated by fear.  She stopped thinking and moved instinctively, living one second at a time.  I think that’s what people call survival mode.

In this war against cancer, I too have found the need to go into survival mode, to envision a future of blank whiteness.  Each time my heart is broken in this war, out of a primal sense of self-preservation, I vow that I will never allow myself to feel that kind of debilitating disappointment, devastation and pain again.  I can’t bear it, I tell myself.  It is in the darkest moments of my war with cancer and as I recover from the latest defeat that I say fuck hope and forbid my mind and heart from creating again any happy visions and images of a distant future that is entirely unlikely anyhow, because I’m afraid to hope; I’m afraid of having my dreams shattered again so that I have to mourn once more my absence in my daughters’ lives, so my heart doesn’t break yet again at the thought of my children and husband being without me, so I don’t have to grieve anew the life that might have been.  And so in my darkest moments, I don’t cling to hope to sustain me as so many say I should; rather, I reject it.

Hope is a funny thing though.  It seems to have a life and will of its own that I cannot control through the sheer force of my mind.  It is irrepressible, its very existence inextricably tied to our very spirit, its flame, no matter how weak, not extinguishable.  I’ve been through enough ups and downs on this roller coaster to know that no matter how vehemently I reject hope at any given point in time, no matter how I swear that I will no longer dream of the future, hope does indeed spring eternal.  After my disappointing CEA results of last month and after a weekend of feeling like it was futile to fight this war, I came to grips with the latest setback and started being able to see beyond that day and that week and then that month.  Soon, I decided that I realistically had eight good years left, that I could see eight years out when my children will be 10 and 12, and that I was going to focus on compressing a lot of living into those eight years and whatever I got on top of that would just be sweet icing.  But no more dreaming of retiring with Josh; no more imagining holding grandchildren in my arms.  From now on, it was about establishing a concrete specific and entirely achievable goal and if I made it to that goal, then I would think about the next attainable goal,   Josh and others thought I was overreacting, prematurely giving up hope because of one CEA result.  In truth it was my coping mechanism.  I needed to toughen up; I needed to change my expectations if I were going to get through the inevitable future setbacks; otherwise, I would be destroyed emotionally.  But even to think about eight good years was in itself a manifestation of a resurgent hope.

Then I went to see Dr. D.L., the HIPEC surgeon, and he declared in response to Josh’s question (which I myself would never ask) that with HIPEC I could – not would – but could be cured.  And against my will, I could feel the flame of hope grow a little brighter inside me.  And since then, sometimes thoughts and dreams of a life beyond the eight year mark have crept into my head, unbidden.  People tell me that they know that HIPEC will cure me, that I will be one of the lucky ones.  For the most part I don’t want to believe them because I can’t bear the thought of more heartbreak, but a tiny part of me hopes that they are right.

Until cancer happened to me, I never understood the vicissitudes of hope; I never understood the joy, terror and despair it could bring; nor did I understand its incredible resilience.  The closest I ever came and the best analogy I can come up with for those who have yet to live with cancer is in the context of the search for an enduring and romantic love, something that is nearly universal to the human experience.  Before Josh, there were a couple guys, no one terribly serious, certainly no long-term boyfriends.  But there were one or two who truly broke my heart, creating the kind of ugly blubbering and depression that embarrasses me now when I think of it.  Nothing quite hurts as much as young love, when it seemed like my entire sense of self-worth was tied to these one or two guys who so brutally rejected me, leaving me feeling utterly unlovable.  Each time, I swore that I was done with men, that I didn’t want to put my heart at risk again, that I didn’t need a man to make me happy.  And each time, the heartache eased and I found myself willing to risk once more.  Time would make me forget the pain.  Time and experience taught me new strength and courage, giving me the fortitude to put my heart at risk again and again until I finally met Josh.

When I thought of this analogy, I realized that my friend wasn’t quite right when she said that hope and fear are two sides of the same coin.  While it’s true that to have hope is to live in fear, it is also true that to have hope is to live with courage.  It takes incredible courage to love again after one’s heart has been broken.  It takes even more courage to have hope in the face of a life threatening disease.  I’ve always felt that a life worth living is one filled with courage, courage to travel the world and taste foreign foods and meet strange people, courage to be alone when one craves companionship, courage to socialize when one is more comfortable in seclusion, courage to do the thing that is hardest.  I have lived my life based on this fundamental principle, and I see no reason why I should not exhibit the same courage I have always exhibited – although this time, I must admit, it’s harder than ever – to embrace hope despite the fear, to dream big despite the odds.  I make bold statements, I know.  We’ll see how I do when the next defeat comes.

I don’t think my ambiguity towards hope is settled.  I think I will always vacillate between embracing and rejecting it.  I think I will always live somewhere in between today and eight years and forty years from now.  But what I do know about hope is that it is an everlasting indelible part of my spirit; it is there even when I feel hopeless, a perpetual flame.  I have felt its faint warmth even in my darkest moments, even as I’ve sought to squash it.  I know the flame, however weak or strong, will burn so long as I live  And near the end of my days, when it is clear that more life is not possible, my hope will evolve into something else, into hopes for my soul, hopes for my children, hopes for the human race.

But for now, on this eve of my HIPEC surgery, my hope centers on a successful surgery, a complication-free recovery, a surgery that will decisively set the foundation for a long-term and sustained remission that will grant me life for many years to come.  I have my battle armor on with fear as my shield and courage as my sword and a powerful hope in my heart.  Tomorrow, I fight to give life to all the imaginings that are the manifestations of my hopes and dreams.  Battle on!

[The surgery is scheduled for 11 a.m. tomorrow at Mount Sinai Hospital, 1468 Madison Avenue in New York City.  In the best case scenario, the surgery will take four hours and I will be in the hospital for four to five nights.  If Dr. Labow finds anything or if there are any complications, all bets are off.  I was very pleasantly surprised after my last surgery to receive so many flowers, which I appreciated tremendously.  I’m going to borrow a practice from memorial services and ask that if anyone is thinking about sending me flowers, please donate the money instead to colorectal cancer research to Chris4Life Colon Cancer Foundation (www.chris4life.org) on my behalf.  Finally, if you’re around and would like to visit, please let me know.  I’m sure I will be quickly bored.]

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13 Comments (+add yours?)

  1. Paul Edelstein
    Mar 12, 2014 @ 14:04:33

    I am quite torn between simply remarking on how engaging your writing is, regardless of it being on the streets during the fall of Saigon or the inside of a doctors office and the substance of the writing which so clearly cuts to the heart of the struggles so many obviously go through. Sort of mirrors your analogy between hope and fear being so intertwined although i have to say, i have yet to read one of your posts and left feeling anything other than hope, or inspiration, not only for you personally but for myself. Do you leave feeling the same way? If you don’t then why not? Seems apparent you have confronted the ultimate fear here, death, head on and moved far beyond it.

    Reply

  2. Barbara Gettelman
    Mar 12, 2014 @ 14:43:14

    Dear Julie:

    I have been following your blog for a very long time. My husband is a lawyer and associate of Brock’s. He recommended your brilliant and moving musings.

    I am a 70 year old woman living in Montana. My life experiences have been rich and also daunting at times. Cancer has not found me yet that I know of. I have laughed and grieved with you and been taught so much about life by your personal generosity, your wisdom and your courage in facing your challenge.

    You are so clear minded. You are so open. You are so inspiring. But I don’t know you personally so I haven’t written. But, I do know you by now. I care about you and I “hope” for you…

    Barbara Gettelman
    Big Sky, MT

    Reply

  3. Astonishing FartMan
    Mar 12, 2014 @ 15:41:30

    Definitely get what you mean about hope. When I was dealing with my recurrence, which statistically speaking would seem to have sealed my fate, I pretty much lost hope . . . but I still kept going . . . because, I dunno exactly why, maybe because really, what choice do we have? At certain times, with regard to the physical/medical aspects of cancer, you just do the “next sensible thing” even if the odds are long, because the “next sensible thing” is what gives you the best shot. So if you are in a frame of mind to prefer the advice of reason more than the consolations of hope, you can always fall back on the “next sensible thing,” which is actually known as the “next thing that seems most sensible.”

    Hope is not the only trick I’ve got up my sleeve. There’s the aforementioned “next sensible thing.” And there’s also pride . . . I can’t let myself be seen as a blubbering cowardly fool. So I gotta “stay strong” and “stay brave” so I won’t embarrass myself. You’d be surprised how powerful pride can be for holding yourself together right before a big surgery. You know in the sci-fi movie where there’s always the sniveling guy who starts screaming, “we’re all gonna die” while he tries to open the hatch? Well that’s not gonna be me. I might not be the big muscle-warped hero, but I ain’t gonna be that sniveling guy.

    Then there’s humor. For me, dark humor sometimes works best. Sometimes life truly seems absurd, so you have to play along with the absurdity and try to be a good sport about it. (http://theastonishingfartman.blogspot.com/2011/05/dubious-shifty-and-complicated.html) My motto is, “If you’re laughing, you’re living.” And sometimes you get a peek at real meaning in the midst of the absurdity.

    And then there’s the solace of the, “Hmmm, isn’t this interesting?” approach to cancer. If, like me, you are a person who loves to learn, and loves knowledge for its own sake, well, this is your big chance! You are having an experience that will teach you things you couldn’t learn any other way. Not all good. But definitely not all bad. On balance, more good than bad. Of course, given the choice, I would probably forego this wonderful learning experience and try to acquire the same knowledge in some other way. But, hey, if you’re gonna be sick anyway, you might as well milk all the wisdom you can from it. I’m not just talking about clinical knowledge about cancer, but knowledge about life itself.

    And then there’s love: for the sake of those I love, I will face all this with a reasonably strong spirit because to do otherwise might cause the ones I love a terrible torment. Yes, there’s some sadness to this approach because, in order to spare those you love from pain, you have to deceive them a little about everything you are feeling. You have to pretend that you are braver than you are and pretend that you are hopeful, even when you are not. And this approach sometimes leaves you feeling a little bit alone, because you can’t really share everything you feel with those you love. But actually I do believe the ones who love you know and understand what you are going through, eventually if not right away, even if you don’t ever speak about it.

    You know I could go on about this sort of thing forever . . . so let’s chat again later. But my main point for right now is, You Can Do This And You Will.

    Sending hope and prayers.

    Reply

  4. Mirna
    Mar 12, 2014 @ 17:54:37

    All the best my friend!! Thinking of you.

    Reply

  5. Debbie Whitmore
    Mar 12, 2014 @ 18:28:16

    Praying for you Julie, as you enter this new part of your journey, on your road to being CURED !! Yes, I have such hope for you. I will be sending positive thoughts for fast healing and that you can get home quickly to your wonderful family. Please ask Josh to keep us all updated on your recovery. xxxooo Debbie Whitmore

    Reply

  6. Bill Ide
    Mar 12, 2014 @ 18:31:43

    Your discussion of Hope is so underwritten by your love- of family, friends and life. Your spirit is infectious !

    Reply

  7. Eric S.
    Mar 12, 2014 @ 20:33:20

    Julie, I just want you to know I’m thinking of you. Even though I’ve known you for over 20 years and I’ve never doubted your mettle, I’ve been stunned to see so much of the poetry in your soul come flooding out on this blog. Get some rest, warrior.

    Reply

  8. barbarablackford
    Mar 13, 2014 @ 00:30:17

    I will be thinking of you as you undergo surgery, Julie. Sending healing thoughts and plenty of hope.

    Reply

  9. Poorab
    Mar 13, 2014 @ 01:41:36

    I’ve been silent for awhile, perhaps because I’ve never had much courage and hope has always been a scary word for me. Denial is my personal strong suit. Thankfully, you are different.
    Please keep writing. Even if you don’t realize it, many of us, silent friends and admirers, are reading, often with a lump in our collective throats.
    I look forward to seeing you this summer. Until then:
    Your courage allows me to hope.
    Be well.

    Reply

  10. jessica
    Mar 13, 2014 @ 07:38:13

    Thank you for your beautiful writing, Julie. I am thinking and praying for you today and every day. Everything you wrote here is so reflective and thoughtful and deep — you’re amazing.

    Reply

  11. Jimmy
    Mar 13, 2014 @ 09:17:53

    Good luck with your surgery today. The family will be thinking of you.

    Reply

  12. Lisa
    Mar 14, 2014 @ 04:29:47

    Thanks Julie for a cutting and honest piece. My mom never really acknowledged she was dying until two days before she really did. by then her liver wasn’t functioning well and her awareness was also very limited. Many posters of various forums are “fighting” until suddenly you find out they just died, days after posting about their latest efforts. There seems to be such a disparity. A psychologist friend of mine explained that the ego cannot face its end and will use various techniques to reasset its imagined power. There is no worse fate for the ego than its total descruction by cancer. Hence the hope that our psyche must use as a tool to deal with this imminent danger. You are brutally honest in facing the illusory nature of hope, but hope it WILL be. Power on Julie!

    As i write this, I believe that you are in surgery. You have a real shot here and I am holding thumbs and toes that it is real and will materialise for you!

    Reply

  13. Janet
    Mar 14, 2014 @ 14:22:09

    Beautiful, lyrical, powerful post. I hope that you recover quickly and that the surgery itself is successful. You are an incredibly strong and smart woman. Battle on, indeed! Kisses to Josh and the kids and a big hug to you —

    Reply

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