Preparing

Last Wednesday was the first day of school.  Mia is in third grade and Belle is in first grade.  Parents came together and engaged in some version of the game One-Ups-Man-Ship, as each tried to “one-up” the other, to wear the cloak for Best and Coolest Summer.  Trips to France, Spain, Italy, blah, blah, blah.  Of course, I played the game too.  A part of me needed to play, to feel like despite everything, I could still give my children a semblance of a normal childhood and summer that could rival anyone’s.  “Mia and Belle went to South Carolina to see their grandparents, which put them in the path of the total solar eclipse,  They loved it.  They’ll never forget the experience.” I bragged.  Even as I said the words, I wondered why I even bother at this stage of my life, why I engage in the stupid, vapid games, why any of it matters at all.  I should have just opened my mouth and stunned them with the truth:  “The girls went to South Carolina to see their grandparents and to see the total solar eclipse but I agonized over whether to allow them to go because I was afraid of losing time with them while they were gone for 12 days, or worse yet, that I would die while they were gone.  But  I realized I had to let them go because that is a necessary part of preparing to die and that’s what I did this summer, prepare to die.  And they may not have been aware of it, but they were also preparing for me to die, to let me go, to start forging their own way in this world without their mother.  That’s what our family did this summer.  So, why don’t you top that?”  Oh how, I would have loved to see the looks on their faces if I had said all that.  How I would have loved to see the shock when hearing complete, absolute and uncomfortable truth.

The scans in late June that marked the beginning of the children’s summer break also marked the true beginning of the end of my life.  I knew it.  For two months, this most promising of clinical trials for colorectal cancer, this trial for which phase I data had been presented at the annual meeting of clinical oncologists earlier that month (something reserved only for the most exciting of early research findings), had worked.  It had shrunk the tumors, even dramatically it seemed.  I’ve often observed how metastatic cancer and the bodies they inhabit seem to find an equilibrium for a time, some balance between stability or slow progression and treatment, where both live in a relatively peaceful co-existence based on a mutual agreement not to bother the other. But then I bothered the cancer, and it got really, really mad.  “How dare you fuck with me?” it seemed to rage.  And in response to me daring to attack it, it grew and grew and grew and continues to grow.  I had disturbed the beast and I have paid the price.  The met next to my belly button now feels like a golf ball with more masses nearby.  The mets in my pelvis are growing quickly as well and at some point I expect they will block my digestive tract such that I will no longer be able to eat, at which point I will consider the viability and desirability of being fed artificially.  But death comes only when there is failure of a vital organ.  For now, my lungs and liver are functioning properly, although I have no idea for how long that will be true.  Based on my observations, near the end, cancer becomes even more aggressive, growing at an even faster rate, until it consumes the body for which it depends on for life.  How stupid cancer is, indeed.  If only I could negotiate a truce, but despite how it may seem, cancer is not a sentient being with intelligence or reason.

Grieving is a necessary part of preparation too so that’s what I did this summer – grieve.  After those scan results, I grieved for the life that will never be, the vacation to Tahiti with Josh that will remain a dream, the African safari with the girls that will be without me, the trip to Vietnam to show the girls where their mother was born with my sister instead of me.  I grieved and grieve for my declining body, for the fact that running next door to Target or the bank is now a monumental endeavor and achievement, for my atrophying muscles and sagging skin, for the fear of being too far from home and a bed or a couch, for the body that cares not at all for what others may think as it needs to squat on the sidewalk when no bench is in sight on my way home from dropping the dog off at daycare so the abdominal pain ease.  Is this what it’s like to age, but at high speed, I often wonder.

I summoned my parents to me.  I wanted my mother to make my favorite soups and for my father to buy me my favorite Chinese pastries.  I hesitated at first because I thought it would be too difficult to watch my parents absorb the fact of me dying.  There can be nothing more cruel than watching your own child die.  I understand now that I am a mother.  But my sister insisted that it would be better for us to all grieve together than apart, that they would feel better being with me than not with me.  So, my siblings and I purchased one-way tickets for them, their stays achingly indefinite.  For a while, my mother drove me nuts with her insistence on me drinking and eating weird Chinese medicine crap that I don’t believe in and balked at my father’s purchase of all the unhealthy Chinese pastries I wanted to eat.  I told her, I could now eat whatever the fuck I wanted, and my father would bark some words at her effectively telling her to shut up.  Every night, when my parents returned to my sister’s apartment, she and my father would tell my mother to leave me alone, to enjoy what time there was left with me and to trust that I knew what I wanted for myself.  At one point, her pestering got so bad, I threatened to throw her out of my apartment and send her back to Los Angeles if she didn’t stop.  After that, she stopped.

I spent my summer saying goodbye.  I summoned my brother.  I wanted my brother to come sharpen my knives and oil my cutting board and change the water filters under the kitchen sink.  I wanted us to make one last trip to Costco together because that’s what Chinese siblings who love deals do together.  My brother stayed for only a weekend in late July.  The night before my brother was to leave, the five of us, my parents, my sister, my brother and I, sat in my dining room, not saying much, knowing that it would be the last time we would really be together, that the next time my brother flew the thousands of miles to New York, I would be within days or hours of death.  My brother and I kept peppering my sister with instructions on how to be a surrogate mother, but it was what was unsaid that resonated in that room.  The phones and cameras came out as we took family pictures, silently acknowledging to one another how precious and fleeting these moments were.  For 41 years, it had been the five of us.  This was my family even though we kids had grown up and had gone on to have our own lives and families, but it was still my family, our family.  And I knew that going forward, in future family photographs there would be a glaring absence, a heartbreaking hole that could never be filled.  My parents will never have another daughter and my siblings will never have another sister.  Forty-one years together finished in that room on that night.

I spent my summer planning.  I bought a new mattress for Mia because the old one was lump and if I didn’t do it, it might never get done and Mia would be stuck sleeping on an uncomfortable bed for God-knows-how-long.  I found the girls a child psychologist.   I found a chef to prepare meals for the girls and Josh.  I started the process of finding the girls a high school or college student who will attend music lessons with them and oversee their practices. I will soon check this off my list.  I wouldn’t be a true Chinese Tiger Mom if I didn’t safeguard their musical progress.

I bought my burial plot.  I will be buried at Green-Wood, a historic and unexpectedly beautiful cemetery located in the heart of Brooklyn, where some pretty famous people are buried.  I’m told a plot is hard to come by but I got lucky.  For four years I had planned on cremation.  I used to tell Josh that I wanted my body to burn, that I wanted the cancer to burn, that it deserved nothing less.  But then when the time came to make the final arrangements, I could not abide by the idea of burning my own body, that the desire to burn my body and eviscerate the cancer came from a place of such hatred and rage, that I could not allow that to be the final message of my body.  As much as I hate the cancer, my body for 37 years served me well.  It took me all over the world and gave me two beautiful little girls.  I could not let the cancer destroy all the goodness that had once been.  Then, there’s the fact that I’ve always hated fire.  I don’t even like to light a match.  The idea of my body being taken to a cold and institutional crematorium seemed even more repulsive.  Plus, Josh wants to have a place to go to visit me.  He wants to have a place to bring the girls to visit me.  He wants to be able to lie at rest next to me.  As it turned out, I want what Josh wants.

But mostly, I spent the summer thinking about how I want to live and spend my remaining months in this life.

I went to the Galapagos Islands two summers ago.  Some of you may remember that.  It was Josh and me and 30 other passengers on a boat that went from island to island to see all kinds of crazy birds with blue webbed feet and red balloon chests that puffed out like gigantic hearts and meandering hundred year old giant tortoises and sea lions that swam right alongside as you snorkeled (the ocean’s version of puppy dogs).  On one island we saw the skeleton of a long dead seal that had no doubt been picked away by scavengers, not 100 feet away from a very much alive mother seal and her cubs.  It was the kind of remote place where you knew you were witnessing life’s primordial roots, Mother Nature at its most primal, millions of years of untamed life undisturbed by human activity;  after all this was where Charles Darwin first gave breath to his theories of survival of the fittest and evolution.  One night after dinner on the boat, someone spotted a shark gliding through the waters around the boat.  The boat came to a standstill so we could observe the shark.  The lights from the boat cast a faint glint on the shark’s slippery body.  Soon, we realized that the shark was in fact in pursuit of a fish, a fly fish, I think it was called.  The fish, desperate to get away, literally flew out of the water and plopped right in the middle of the deck and started flopping desperately around as if in its panic it would find a way to save its own life.  What should we do?  We could not save the fish.  I suppose we could have moved the boat to another position and then thrown the fish back into the water.  But surely, the shark or another predator would have found him in his compromised state.    Eventually, one of our guides threw the fish back into the dark water where he was swallowed whole by the shark and the waters soon returned to their usual calm.

I’ve thought about that fish often since.  I know that the primordial instincts in him to survive, to save himself, lie within me too.  I know the base desperation he felt.  I feel that desperate panic each time I notice my tumors growing again.  I’ve seen the same instincts in others facing death.  There was that guy who talked about potential clinical trials even as his lungs were about to be drained; he died five days later in the hospital.  (When tubes need to be inserted to remove unwanted fluid, this is generally a sign that the end is near and that one is not healthy enough for a clinical trial, in case you were wondering.)  Then, there are the people in support groups who dole out the stupidest and most thoughtless advice, advice that is reflective of that same base desperate instinct to survive at all cost.  To a patient considering stopping all treatments and going into hospice, you often get, “You have to keep going.  Giving up is not an option.”  One mother, who has since died, after being told by her doctor that she had 18 months (she died much sooner), said “Dying is not an option.”  I thought to myself then, really?  And then, I wondered as her death became even evident to her, what did she think?  Did she continue to think death was not an option?  In fact and in reality, death is truly what is inevitable and life is the option.  These statements come from the same group of people who spew asinine assertions about how there is always hope because look at their unique situation where they had limited cancer and they made it.  Give me a fucking break!  Where’s the hope for me and others like me?  Where’s the hope for my friend Amy, who just died one years after diagnosis, leaving behind a two-year-old daughter?  Where’s the hope for the millions who have died from cancer?

At some point, the reality and inevitability of death must be acknowledged and accepted.  People who make such thoughtless statements when faced with death allow their baser desperate instincts to govern; they choose to be more like primordial fish than evolved human beings.  These are the people who are so afraid of death they cannot approach it with a dignity and grace that is befitting of an evolved soul.

I may have some of the instincts of that fish but I am not that fish.  We, as human beings, are not that fish. We are evolved.  We can think.  We have reason.  We are capable of a thoughtful and meaningful existence that transcends our primal roots, and that is what I aspire to, and I daresay, it is what every human being should aspire to.  Our best humanity means being able to control our baser instincts, to squelch the panic and fear, to overcome with reason and intellect and compassion and honesty and faith and love.

What also distinguishes us from primordial fish is our ability to choose our fate.  Self-will and self-determination are fundamental elements of what it means to be human, elements of ourselves that should be cherished and celebrated.  Within certain confines and even as there is so much beyond our control, you and I get to choose our destinies.  And when I or anyone else is told that I don’t have an option, that I must act based on some mindless instinct, it takes away from the beauty of my humanity and my individual choice.  This applies to any life context, not just cancer.  For the person who battles depression and struggles to get up every morning but does so anyhow, I applaud that choice.  For the person who battles depression and wants to commit suicide and take his life into his own hands in an exercise of his own self-determination, I applaud that choice too, so long as it is made with cogency.  Similarly, for the person who chooses with thought and clarity, hospice over more treatment and more clinical trials, or vice versa, I applaud you.  I celebrate you.  Bravo!

Whatever the world or my children may think of me after I am gone — judgmental preachy bitch, jealous and bitter herridan, defeatist and pessimist of the worst order, fearful coward — I hope that at the very least no one will ever think of me as a thoughtless, mindless person, desperate to stay alive.  I hope the world knows that I approached my death with clarity, that I made my decisions not out of panic but with reason, intellect, compassion, honesty and love, from the best parts of my humanity.  At least, this is my goal.   The truth is thought that to overcome the primal within requires Herculean efforts.  It is our nature to want to live and survive.

Within a week of receiving my scan results, I had an appointment at Mount Sinai to discuss the results of the fruit fly study.  For 18 months, researchers at Mount Sinai had worked on creating fruit fly avatars containing my tumors from the original primary colon tumor.  They had identified one potential drug combination.  Out of a library of 1200 FDA-approved drugs, one combination, which consisted of two drugs, had resulted in my fruit flies still living.  The test was not a measure of tumor shrinkage within the fruit flies; rather, it was simply a question of whether the fruit flies were still standing when everything was said and done.  The flies only survived the cancer with this drug combination.  One drug the insurance company would easily approve.  The other drug is a melanoma drug, not approved for colorectal cancer and therefore the insurance would not pay for it.  The pharmaceutical company also refused to give me the drug because I didn’t meet there rather stringent income limitations.  I did find a specialty mail order pharmacy that would provide me with the drug at a cost of $7,000 a month.  Theoretically, I could pay for the drug for two months, and if the scans showed the drug combination was working, I would have an argument with the insurance company for reimbursement.  In the big scheme of things, $7,000 a month is not a huge amount of money for me and Josh, and I could have comfortably spent that sum for a couple months.  But, I was less than impressed with the fact that the trial had not found a way to cover the cost of the drug when applied to patients; to me, that did not say much about the researchers’ faith in their findings.  Second, I continued to be skeptical about whether results in fruit flies would be effectively replicated in human beings; it is hard enough to reproduce mice results in humans, two mammals with much more similar biologies, never mind a fly and a human being.  Plus, the testing had been performed on my primary tumor, which most certainly is not an accurate biological representation of my metastasized cancer.  Third, there was the time and energy to be expended with this or any other trial.  I have participated in three experimental treatments, two of them clinical trials.  I am well aware of the extensive testing required, and at this point, I don’t have much time or energy to spare on something with a 99.9% chance of failure.  I’d much rather be at home with my children or hanging out with friends or writing or even lounging on my couch watching TV.

MSK offered me a spot in an immunotherapy trial.  It seemed decent, but they withdrew the spot after I signed the consent.  Yale said I was more than healthy enough for another clinical trial, but they didn’t have a spot in the trial I wanted.  For anything else, I didn’t think I wanted to spend the time traveling two hours each way to New Haven.  At some point, the clinical trials these renown institutions throw at you don’t seem all that different from the green sludge swamp water from Mexico I swore I would never drink.  Acts of desperation made barely palatable by a thin veneer of science performed on mice; that’s all clinical trials are.  Call me a little jaded by my experiences.  So I said no to the clinical trials and decided to recycle Folfox, my first chemotherapy combination, at a reduced dose.  It seemed like the treatment with the best odds of working, something I could point the girls to show them that their mother didn’t completely give up at the end.  I’ve had three treatments.  At this point, I don’t need scans to tell me if a treatment is working.  I can feel the cancer growing.  It’s not working.  I will stop soon, and then it will be time for hospice.  Unless, of course, my baser instincts kick in despite my best intentions.

I’ve always known that I would bring in hospice early, that I wanted the hospice people to get to know me and my family.  I’ve always wanted to die at home and not in the hospital.  And in order to ensure that, hospice must be brought onboard early enough.  Too many times, I’ve heard of patients going to the hospital to deal with symptoms and they can’t get out.  It can be difficult to escape the vortex of cascading complications that can arise from end-stage cancer and the interventions performed in hospitals.  I also see families asking for privacy in the end as they close ranks around the dying.  I think this in large part stems from a culture that is terrified of dying and death, a culture that likes to hide or run in shame from death and pretend until the very end like it isn’t happening and isn’t real.  I have always known that for me, this was not the right choice.  I love people.  I love life.  I want to be surrounded by both as I bid my final farewell.  To the extent I can exert control, I will die on my terms.  That I have promised myself.  I want my children to be with me.  I want my home to be filled with family and friends and laughter and tears and stories and food, the very best parts of life.  I want my children to learn by the example of my death not to be afraid of death, to understand it as simply a part of life.  I want them to see how loved their mother was and that, by extension, they too are safe and loved.  I know a death that is at once lively and peaceful and filled with love will be one of the greatest gifts I can give them.  For four years, I’ve been planning my death, and now I finally get to execute my plan.

PS:  I’ve created a vigil list, a list of people to be notified when my death is imminent so as to allow for final goodbyes. If you would like to be on that list and you haven’t told me so, please let me know.

55 Comments (+add yours?)

  1. lily cedar
    Mar 15, 2018 @ 10:54:14

    I came across an article about you because it was posted in a facebook group that I belong to called slow medicine. I am a nurse who works in cancer care. I’ve lost three friends to cancer so far, with two more on the way. Your writing is amazing, thoughtful, compassionate, honest and loving. Your children have been blessed to have you as their mother. Thank you for sharing this with me.

    Reply

  2. Janet swickard
    Mar 25, 2018 @ 17:58:04

    I just heard that Julie is gone. Gone but never forgotten. Her spirit lives on & I will read her book. She had so much courage. I am a cancer survivor so far myself. I do not know what my future will hold. I send my condolences and pray for her family. I believe, like her, famous ly is so important. God be with you.

    Reply

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