Invincibility

Every time I see Dr. A.C., my vitals (i.e., weight, blood pressure, temperature, pulse and oxygen level) are measured by Tanya. Tanya is an outspoken middle-aged black woman and mother of two, who likes to wear scrubs printed with different cartoon characters. Like beacons of cheer and light in a place that can be so grim, her scrubs have always entertained me as I expectantly wait to see what cartoon character it will be this time. We talk about cartoons, our kids, our vacations and sometimes we gossip about the staff and even Dr. A.C., because, as I’ve said before, I’m nosey. Such conversations with the various people I encounter at the NYU Cancer Center, from Tanya, to the receptionists, to the nurses, to Dr. A.C. himself, lift my spirits somehow; they make me feel like these people care about me and I about them, like they don’t view me as just a cancer patient, but a vital, involved, invested and interested member of the human race who is more than her cancer. I think most would be surprised at how much I laugh in the cancer center, in this place with these people that remind me forcibly that I have a disease that will inevitably kill me, at how genuinely happy I am to see these familiar faces. Ironic, isn’t it?

It was during one of these conversations with Tanya that I asked casually, “So, you must see really sick people here.” Of course, I had noticed in my frequent stints in the waiting room that I was invariably one of the youngest people there, that I indeed, despite my diagnosis and prognosis, looked the healthiest.

Tanya lowered her voice into a near conspiratorial whisper, “Oh yeah. Some people come in looking like they’re two days away from death asking for treatment or a second or third or fourth opinion.”

I was shocked. “Seriously????” In my many hours of hanging out in the waiting room and the exam rooms during the last 21 months, not so subtlety checking out my fellow cancer patients out of the corner – or rather center – of my eye to control the boredom and restlessness, I had never seen anyone that sick.

She nodded solemnly.

At my following visit, as I was leaving the exam room in which I had just met with Dr. A.C., an EMT was wheeling into my room a sickly old man with a few strands of wispy white hair in a stretcher. Tanya rushed in to take his vitals, slamming the door as I made a narrow escape. She hadn’t been exaggerating! People who are very ill from cancer go to the ER or the hospital to address symptom or complication; they don’t come visit the oncologist in his office unless they want treatment or an opinion.

There was something disquieting about that man, about all the other patients near death who come to Dr. A.C.’s office and the offices of thousands of other oncologists in this country and throughout the world.  More disturbing was the thought of the many others who go to see pseudo doctors and patent charlatans in places like Mexico and Germany and South Africa or even New York City, who prey on the desperately sick with their highly questionable treatments backed by little to no science or even common sense, at the cost of hundreds of thousands of dollars and an untold physical toll. In hopes of physical salvation, they drink green sludge drawn from a swamp and fill their veins with a clear liquid of who-the-hell-knows-what.

I have told my good friend, X – or maybe more truthfully I vowed to X – “I will never be one of those people; I will never go to Mexico to drink sludge, no matter what happens.” My friend, this brilliant man with a razor sharp intellect, replied, “I think I would be one of those people.” I was appalled, horrified, perplexed, intrigued by X’s response. Why indeed would someone so smart do something so dumb? X doesn’t have cancer. Even so, in the cancer world, I’ve seen quite a bit of that, desperate people doing crazy things in order to save themselves and some of them I would say are quite mentally competent and even smart under other circumstances. (Consider, as an example of someone brilliant robbed of rationality, Steve Jobs, who in the first instance rejected conventional treatments in favor of alternative treatments at a time when his pancreatic cancer was very treatable; even though he subsequently underwent surgery and other traditional therapies, many ascribe his rejection of convention early on to have shortened his life.) Something about cancer makes us humans crazed. Something about it invokes within our flawed selves irrationality, fanaticism and desperation.

Or should such people be commended for their bravery, for fighting against all odds, for leaving no stone unturned, for “raging against the dying of the light” until their absolute last breath despite the debilitating consequences of treatment, for staying put in the face of a destructive hurricane and communicating a symbolic “fuck you” to the cruel fates? Should I praise them in the same way I praise a woman who chooses to endure the pain of childbirth without an epidural – I screamed for an epidural the moment my contractions started – or a man who survives at sea with little food and water?  Early on in my cancer journey, I once vowed that I would forever rage against the dying of the light. Back then, maybe I would have considered seeking chemotherapy treatment days before my death and even drinking sludge. No longer, I don’t think.

I’ve had my moments of irrationality, fanaticism and desperation, moments which I now view with some degree of embarrassment. I’ve paid a total of $1800 to see the famed integrative doctor, Raymond Chang. I’ve spent thousands of dollars on supplements, herbs and cannabis, based on Dr. Chang’s recommendations and based on the success story du jour of whatever link someone shared on some forum. Other than Vitamin D, CoQ10 and Cinetimidine, all of the supplements now sit on my kitchen counter untouched. (I never seriously entertained his more drastic treatment proposals like hyperthermia and immunotherapy-like treatments available only in other countries).  At my last infusion, I told Dr. A.C. (who has always been okay with me taking supplements), that I’ve stopped taking all the things Dr. Chang recommended because ultimately I just don’t believe and I can’t do something I don’t believe in. Dr. A.C. responded, “You don’t believe because at heart you are a scientist.” I think that was the greatest compliment Dr. A.C. could have paid me. I’ve always been skeptical of alternative treatments and Dr. Chang but skepticism turned to disbelief when after my recurrence Dr. Chang recommended scorpion venom at $600 for a month’s supply. I went home and watched the Nightline story about scorpion venom, which basically called it snake oil. Many advocates of alternative treatments, including Dr. Chang himself, make the common argument that anything is worth trying so long as no harm is done. This is the same basis upon which my own oncologist acquiesces to his patients doing alternative treatments – that is so long as the treatments do not negatively impact organ function, He himself is skeptical but I suspect he recognizes that many of his patients crave, and indeed need to feel like they are exerting, control over their destinies, even though he and other scientifically minded people understand that control is an illusion, but one to which many fiercely cling to preserve their sanity.

What was that old man searching for on that stretcher and what would X want if he ever got to that point, I wonder. A miracle? A cure? More time? To prove his own resilience? What? Is there some base primal instinct compelling them to fight for survival at any cost, like a wild animal clawing savagely against its natural predator. Are they that afraid of death? Or do they love life that much? Or are they weighed down by the obligations of love that dictate they live as long as possible under any circumstance for those who rely on them? What motivates them, fear or love, death or life? I’ve been pondering these questions deeply since that conversation with Tanya, trying to determine how I would answer them as I constantly make decisions about whether and how to live what remains of my days.

I suspect that the old man and X, like many people, are more afraid of death than they are in love with life and that an animalistic fear overrides whatever rational intelligence they possess; I would guess that they fear the unknown of what Shakespeare called “the undiscovered country”, the probable nothingness they believe lies beyond this life despite their wavering belief in God; they fear having the fire of their existence being extinguished as if they had never been; they fear being small and irrelevant and forgotten. I’ve seen people on social media proclaim to a mostly unbelieving audience only days from death how they’re going to still beat their cancer. I read somewhere that those people who cling to such unrealistic hopes have egos that cannot fathom their own nonexistence, the very notion so incomprehensible, so incongruous with everything that has ever been their reality, so wrong that their minds must reject, reject and reject until there can no longer be denial of what in fact is objective reality.

It seems I don’t have much of an ego (at least not the kind of ego that clings to my own existence in this life) – my Freudian therapist would know better than I – for I don’t have such a powerful fear of what awaits in the undiscovered country, perhaps because I do believe there is another country and not just nothingness. I can’t explain to you why I believe; for me, it is simply a matter of intuition and faith. For me, death waits like a doorway beckoning me to a new adventure, yet another on my long list of adventures, a new territory to explore and understand and from which my everlasting soul will learn and evolve.

I don’t want to mislead in suggesting that I don’t have an ego – we all do – a place from which our arrogance and conceit are born. My ego thrives on a belief in, and the need to continually cultivate, my inner strength and courage, my innate sense of grace and dignity that has heretofore allowed me to withstand the vicissitudes of life with a brutal self-honesty, and then to arise after shouting the expletives and shedding, the tears smiling and laughing at myself. I’ve never been a beauty nor have I ever been the smartest person at school or work, but because of the circumstances of my life and the successes I have achieved despite those circumstances, I have always believed myself to be uniquely spiritually strong and resilient. I am good at dealing with the harshness of life’s reality. I have faith and pride in my own spiritual invincibility.

I couldn’t say it better than Albert Camus, who wrote:

In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

For me, not knowing when is enough, raging and raging like a wild irrational beast, denying one’s own mortality, clinging to delusion and false hopes, pursuing treatment at the cost of living in the moment, sacrificing one’s quality of life for the sake of quantity, none of this is graceful nor dignified and all of it denies us of our contemplative and evolved humanity; such acts do not cultivate an invincible spirit; such acts are not a testament to inner strength and fortitude. For me, true inner strength lies in facing death with serenity, in recognizing that death is not the enemy but simply an inevitable part of life.  (I say all this while acknowledging that everyone defines strength differently.  These are simply my views and not a judgment of others’ choices.)

Ever since I learned that my cancer had metastasized to my lungs and that I have a dim prognosis, more than one person has commented on the resigned tone of my blog posts, as if I have accepted my death from this disease as a foregone conclusion, even if I don’t know when exactly. More than one person has told me that I seemed to have lost my traditional fierceness, the same fierceness that has allowed me to succeed against all odds. Even Josh accuses me of being a defeatist, that by conceding my fate, I am succumbing to the disease, that I have stopped fighting.

Josh and others have misinterpreted my actions. It’s true – I have spent the last few months confronting my mortality, accepting the inevitability of my death in all likelihood from my cancer, trying to find peace with my destiny. But what Josh and others don’t understand is that with acceptance and peace, I have learned to live more fully and completely in the here and now, that I now live with a fierceness, passion and love that I’ve never known. In what is the greatest irony of all, I have come to realize that in accepting death, I am embracing life in all of its splendor.  Indeed, that part of me that believes in things happening for a reason, believes that I am, through this cancer journey, meant to understand within the depths of my soul this paradox of death and life.

To that end, on July 2, Josh and I will leave for Quito, the capital of Ecuador, where we will stay for less than two days, visiting the old colonial town (a UNESCO world heritage site) On July 4, we will fly to an island in the Galapagos archipelago where we will board a 32-person yacht that will serve as our home for the next eight days. The yacht will motor from island to island by night and by day we will hike, snorkel and kayak in places that few have ever been, where the prehistoric-looking animals roam free, having been largely undisturbed for centuries. I won’t say it will be the trip of my lifetime alone, but I will say it will be the trip of mine and Josh’s lifetime together.

I don’t visit cancer support group sites very much anymore. I don’t research alternative treatments anymore. While advocates of alternative treatments say you should do things that do not cause harm, putting aside the financial expense of engaging in such treatments, these require a fair amount of energy to research and to generally pursue, that for me detracts from my ultimate objective of living in the moment. I don’t research conventional treatments much either these days. I’m honestly too busy living, too busy spending time with my family, too busy cooking, too busy pursuing a huge project that involves the expansion of our home (more about that later). The time will come where I will have to focus once again on cancer, on clinical trials, on choosing new therapies, but the time is not now. Now, even as death lurks all around me, I live fully and completely while I am relatively healthy and pain-free; now I suck the marrow out of this glorious life I have been given.

That all being said, nothing is ever so simple, is it?

A couple weeks ago, when I went to see Dr. A.C. to discuss the possibility of changing treatment (i.e., switching to something more aggressive that might actually shrink my tumors (as opposed to just maintaining the status quo) at the cost of my quality of life), without Josh present, I expressed to him my wishes. “I want to be clear Dr. C. that I am not one of those people who wants to cling to life by a fingernail, that I will always choose quality over quantity, that facing death with dignity and grace means more to me than adding days to my life on this planet,” I declared. But then I paused. I voiced next what I had not verbalized before. “But in telling you this, I feel like I am betraying my husband and little girls, that for them I should choose to live as long as possible at any cost to myself, that time with them is priceless.”  [Consistent with my wishes, we have decided to maintain the status quo with treatment until after my return from the Galapagos.]

What will my children think of me one day? How will they judge me? Will they call me a defeatist too? Will they resent me for not fighting harder, for not expending more energy on figuring out ways to extend my life? Would they admire me more as a woman who lived well in spite of her disease or would they respect me more if I were like that old man being wheeled into an oncologist’s office? Would I be setting a better example for them if I raged or if I went quietly into the good night? I don’t know the answers to these questions. And I don’t know whether those answers should really influence my decisions about my own life. All I know is that I love them.

Hours after expressing my sentiments to Dr. A.C., my sister came over after work to take the girls to Target to pick up a Mother’s Day gift for me. I did not go with them. My sister later recounted how she instructed Isabelle to pick a card for me (not that the child can read). She sat in the shopping cart and pointed to one card and one card alone, screaming that she chose that one. When they came home, my sister handed me the card adorned with a golden butterfly and told me that Isabelle alone had chosen it. Of course, it would be Isabelle who selected a card out of hundreds that had such meaning, as if she knew what thoughts I had been thinking, as if she knew what I had told my oncologist only hours earlier. The card read, “From both of us, Mother, The memories we make – the laughter we share – These moments mean more when our mother is there.”  It seems Isabelle wants me to fight harder and for me to be here for as long as I possibly can.  I just don’t know if I can do that…

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14 Comments (+add yours?)

  1. Justin
    May 29, 2015 @ 14:49:24

    I think this is your best post yet, Julie. Bravo.

    Reply

  2. lisa
    May 29, 2015 @ 16:25:19

    I think the illusion of fighting is just that. An illusion. Taking standard treatment is enough. Rather enjoy the time you have.My two cents.

    Reply

  3. Cristina
    May 29, 2015 @ 17:23:12

    We walk the same path and my beliefs mirror yours. You so brilliantly and eloquently describe what I feel. I hope to meet you one day, if not in this lifetime perhaps the next. You are doing the right thing, live fully and enjoy each precious moment with your family and keep cooking!!!
    Thank you for sharing, I treasure each of your posts.

    Reply

    • julielyyip
      Jun 01, 2015 @ 11:54:04

      I hope to meet you in this life or the next as well. There are people I’ve met since I started this cancer journey who I feel I have known before or will know again. It’s a strange feeling.

      Reply

  4. Eliza
    May 29, 2015 @ 20:33:38

    Your children’s lives are long, Julie. With these words, you are leaving them a treasure they will pour over at different junctures of their lives. I feel very deeply that your words and your decision will give them enormous strength and courage to live their lives most fully. You are doing exactly what you are supposed to be doing as a mother and as a human being. I am so moved and proud of you.

    Reply

  5. Valerie
    May 30, 2015 @ 01:42:30

    Wow, Julie, I never thought of you as defeatist. Just brutally honest. I think that’s why so many strangers have responded to your blog–because you never compromise or try to hide who you are–even when that includes the inevitable hate and tears and chaos of living with stage iv cancer. I look forward to reading your posts from/after the Galapagos! It’s a great place to think deeply and just get away from everything!

    Reply

  6. akasleen
    May 30, 2015 @ 09:14:39

    We have much in common, and I applaud your honesty. I’ve asked myself these impossibly heart-wrenching questions, too. I refuse to chase the “promise of the green sludge”, too. Give me science. Even if my trial doesn’t work, there is the hope that the researchers will learn something from my case that will help another. Joyous travels to you and your husband!

    Reply

  7. Bill Ide
    May 30, 2015 @ 10:27:05

    Not losing todasy worrying about tomorrow is such a great point. It is very comforting to have your thoughtful review of the dynamics of cancer’s impact on one’s ability to cut through the dark side of the mind. Sounds like you are living life more in one day than many live in one month. Have a great trip.

    Reply

  8. The Astonishing FartMan
    May 30, 2015 @ 13:01:34

    Thinking of these things is a wrestling match. Sometimes you get flipped. Sometimes you give up and get pinned, or you get pinned and then want to give up . . . but then the match starts over. Sometimes you figured it out, you think you’ve got it pinned down good where it will stay pinned forever, but when you aren’t paying attention, it slips away again, and the wrestling match starts over.

    I used to say, “Sometimes it seems I should live as if I will live forever, and sometimes it seems I should live as if I will die tomorrow.”

    When I was really sick, there were times when I wished the doctors could just tell me the day, hour, and minute of my death so I could just go about living my life and stop worrying and wondering about it. Other times I would (try to) pretend to myself that I didn’t have cancer.

    I just wanted to be able to stop having to wrestle in limbo.

    It IS worth thinking about these things because one can learn a great deal (and even if it weren’t worth it, you’d think about them anyway). Yet at a certain point, you have to say to yourself, “That’s enough of that for today. Now,I shall make use of all the wonderful things learned from all this contemplation of the meaning and life and death by going about the business of living the rest of my life.” And then, the next day or the next week, you start the wrestling match all over again.

    I called it “Ascending to a more higher level of confusion.”

    Of course, your children and your husband will never want to let you go. So they are always going to say, “Please stay.” But don’t worry, they will understand if and when you decide it’s time to let go.

    Back when I was terribly sick, I often tried to talk with my wife about these things–about how I was trying to reconcile myself with my hard-pressing mortality.She would never hear a word of it. She would end up crying and say, “Why do you want to say things like that to me?” I sometimes felt she had abandoned me because she absolutely refused to enter into my contemplation of life and death and would become angry with me when I tried to speak of it. But she was right. Her part, as the person who loves me most, is always to want me to stay. My part is to wrestle.

    Reply

  9. Katie
    May 31, 2015 @ 08:42:29

    Julie, I love this piece for so many reasons. First, you (once again!) articulate a belief that I also hold about quality over quantity of life. This is very important to me, although family and friends may at some point find it hard to accept. I have already suffered enoguh pain and indignity for a lifetime, and I will have to draw the line somewhere – I just don’t know where yet. The second reason I love this piece is that your remarkable personality shines through in your description of your daughters, your husband, and how you interact with everyone around you, including your nurse and your doctor. These are the priceless gems of life, and I love how you capture them so vividly. Third, I love and appreciate your honesty as always. You are a special person and I hope for the opportunity to get to know you better someday!

    Reply

  10. Jeannie
    Jun 02, 2015 @ 15:57:04

    You are just an amazing, special human being whom I admire from afar. I don’t even know you other than online, but I can still see you speaking at the summit last year with your beautiful smile and courageous speech that filled me with hope for you that you will be one that beats the odds – that will benefit from immunotherapy and all other future therapies coming down the pike – that is my wish for you. I hope your blog becomes a book sooner rather than later for you speak for so many.

    Reply

  11. Christine McCarthy McMorris
    Jun 03, 2015 @ 15:54:41

    Hi Julie – this is such a strong and loving piece. You are the hardest thing it is to be in this world: a realist with a heart. When I had a loved one who was sick, I was able to bring them my best self after I let go of all the wishing and denying and anger, and just be with them and enjoy their company. (My Dad). Of course he was older, but I never was bitter about his wishes to decline further treatment, even though our time together was shorter. I think going through this process takes different amount of time and courage for different people. Not that you aren;t open to any possible promising treatment that comes along, of course. But you are strong to be able to appreciate your life without that promise. Hang in there.

    Reply

  12. greenmonkey27
    Jun 21, 2015 @ 16:06:24

    such a powerful post. thank you…

    quality over quantity is key for me as well. but that takes courage and conviction and you have both.

    much love to you and all who love you. (now to google Galapagos islands)

    Reply

  13. Joan B
    Jul 10, 2015 @ 06:08:18

    Wow, your blog, and this post in particular, is amazing in its clarity, wisdom (whatever that really is) and beauty. hope you are enjoying your trip.

    Reply

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