Complete

Cancer is completing my life, making it whole.  It’s a strange thing to say, isn’t it?  Most would say that cancer, the terminal kind, is truncating and destroying their lives.  For a long time, especially in the beginning of this cancer journey, I felt that way too, but no longer.  It all makes sense now.  Cancer and even congenital blindness make sense now.  The “Why?” question I’ve spent my entire life asking and which I never thought I would be able to decipher, at least not in this life, has a credible, tangible answer now.  All the suffering and all the joy, all the tears and all the laughter, from the moment of my birth to my very last breath, a life that has seen more than its fair share of excruciating pain as well as spectacular achievements, I understand it all now.  I have found the meaning and purpose I have desperately sought my entire life.  And that is an incredible, beautiful, glorious thing to be able to say.  No one, and certainly not I, could ask for more than that in one lifetime, as brief as it may be.

You see, I secured a huge book deal with the very prestigious publisher, Random House, in which this blog will, in the hands of the finest editors in the world, be transformed into the memoir I always dreamed of publishing. More

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Love

Dear Josh,

Sometimes, I can feel the weight of your stare as I feign sleep in those torturous minutes before I fully wake.  Your grip on my hand has tightened; that’s what probably woke me in the first instance.  I can feel your love.  I can feel you trying desperately to save the image of my face in some special place within your soul that might be immune to the amnesiac effects of time.  I can feel your fear as you unwillingly envisage a life without me – how will you comfort the girls like I can; how will plan the birthday parties and arrange the girls’ schedules; how will you fix all the things that break in our home; how will you do all this while still working your demanding job and maintaining the stellar course of your career?  In turn, in my own mind’s eye, I can see you cleaning out our closets and bathroom drawers to dispose of all my things.  I can see you bringing flowers to my gravesite.  I can see you watching what were once “our” favorite TV shows after the girls have gone to bed, in the dark, alone, the television casting its eerie blue light on your face that seems to be permanently sculpted in sadness.  My heart aches for you but I don’t know how to help you.  Beyond solving all the logistical problems caused by my death, what can I say or do to alleviate the pain, to make losing me easier for you, if that is even at all possible?  Just as I felt compelled to write the girls a letter, I feel a similar compulsion to do the same for you in an attempt to help, for to not do so would be a great failure by me as your wife. More

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. More

Oneness

I was in the hospital a few weeks ago for uncontrollable pain and vomiting.  While there, I also developed sudden and profuse vaginal bleeding, which I discovered in the middle of the night and which freaked me the fuck out.  It turned out the blood thinners they automatically give patients to prevent potential clots that can result from lying around all day long had aggravated the mets in that part of my body and they had begun to bleed.  I was there for four days since they put me on a pain pump and then had to transition me off in lieu of the Fentanyl patch and since we had to wait for the bleeding to gradually subside.  The hospital is a desperately lonely place when you know you are dying.  Unlike my previous hospitalizations, this one was…empty, futile, pointless; it was devoid of all joy or hope or life-affirming possibility.  I had birthed no babies.  There had been no surgery to successfully remove cancerous organs and tumors.  There wasn’t even a promising clinical trial that necessitated the forced observation, confinement and attachment to machines.  No.  I was there simply because my body was deteriorating, beginning the process of dying, and I couldn’t handle the physical turmoil that was causing without medical intervention. More

Thank You

When I started writing this blog exactly four years ago, I never knew what it would become.  On August 19, 2013, I began writing and writing and writing, to keep my family and friends apprised of medical updates, to maintain a record for my children and, most of all, to create an outlet for myself.  Sure, it would be nice if people beyond my family and friends read my blog, but that was far less important to me than the exercise of self-expression such that I could vent all the complex emotions that come with having cancer, so that my mind and heart wouldn’t explode.  As a record for my children through which they would really know me and as a vehicle of self-expression, I vowed to be truthful and brutally honest, knowing that such honesty would be too dark, heavy, frightening and offensive to many and that the blog itself would be disdained by many as blatant narcissism and self-indulgence.  But I didn’t care.  This was my space I was carving out for myself.  Read or don’t read.  It didn’t matter to me. More

Life

Dear Mia and Isabelle,

I have solved all the logistical problems resulting from my death that I can think of – I am hiring a very reasonably priced personal chef to cook for you and Daddy; I have left a list of instructions about who your dentist is and when your school tuition needs to be paid and when to renew the violin rental contract and the identity of the piano tuner.  In the coming days, I will make videos about all the ins and outs of the apartment, so that everyone knows where the air filters are and what kind of dog food Chipper eats.  But I realized that these things are the low-hanging fruit, the easy to solve but relatively unimportant problems of the oh-so mundane.

I realized that I would have failed you greatly as your mother if I did not try to ease your pain from my loss, if I didn’t at least attempt to address what will likely be the greatest existential question of your young lives.  You will forever be the kids whose mother died of cancer, with people looking at you with some combination of sympathy and pity (which you will no doubt resent, even if everyone means well).  That fact of your mother dying will weave into the fabric of your lives like a glaring stain on an otherwise pristine tableau.  You will ask as you look around at all the other people who still have their parents, why did my mother have to get sick and die.  It isn’t fair, you will cry.  And you will want so painfully for me to be there to hug you when your friend is mean to you, to look on as your ears are being pierced, to sit in the front row clapping loudly at your music recitals, to be that annoying parent insisting on another photo with the college graduate, to help you get dressed on your wedding day, to take your newborn babe from your arms so you can sleep.  And every time you yearn for me, it will hurt all over again and you will wonder why. More

Death

I was Daddy’s little girl, his favorite, his precious one, his gold nugget.  He would tell anyone and everyone exactly that, in Vietnamese or Chinese.  It was embarrassing, especially in those teenage years, but I loved him too, even if he was often too nosey and annoying in so many other ways   Perhaps, it was because I was the child most like him, inquisitive and interested in the world and its people.  Perhaps, in me he saw all his own potential and dreams never realized – the intellectual, the fearless world traveler, the money-making professional.  In him, I saw a man who loved me beyond measure, who would spend hours in traffic driving me to and from the airport, high school competitions, study group sessions and the orthodontist, who believed that I could walk on the moon if I so chose,   Sometimes, I felt somewhat bad for my older brother and sister.  He loved them too, of course, but it just wasn’t the same.  (It was widely known, however, that my brother was my mother’s favorite and my sister was my grandmother and the uncles’ favorite, so I didn’t feel too bad.)  During one of our many car rides together, I asked my father, “Don’t you think that it is not right for you to love me more than Older Brother and Older Sister?”  He took his right hand off the steering wheel and held it out to me, its fingers outstretched.  “Look at my hand,” he ordered.  “You see my fingers?  Are they even?  No.  It isn’t possible to love your children the same.”  And that was that.  My father, the sage Chinese philosopher, had spoken.

Anyhow, knowing that he loved me as much as he did, I felt incredibly sorry for him as he stood helplessly by as I left for college three thousand miles away from home and then on my various adventures to far-flung places, the kind of impoverished places that we had risked our lives to escape decades earlier.  He was and is a worrier.  He would sit morosely watching me, shoulders drooped, as I packed for my next adventure, wringing his hands and running his fingers through his virtually non-existent hair.  Sure, I was nervous about my travels, somewhat afraid of what I might encounter, but mostly I was excited and enthralled by the promise and possibility of newness and all the things to be seen and experienced.  I was off to have fun, to grow and learn, to be changed and challenged; my father would be left behind at home, worrying.  His life centered around me and that center was leaving.  I swore then that I never wanted to be the one left behind, even if I were to have my own children, that I was and would forever be an intrepid traveler and adventurer.

It seems that with the latest bad scan results, I will now continue to make good on that promise I made myself so long ago.  I will be the one to die young.  I will be the first among so many family and friends to embark on the greatest adventure of all, the one that involves traveling beyond this life into the next.  Were the choice mine, I would stay longer, to watch my children grow up and to age with my husband, to bury my parents, to see more of this life that I have loved so much.  But the choice is not mine.  It has never been mine. More

Pain

For a week, I’ve been trying to write but nothing comes out.  Nothing coherent.  Nothing good.  I am in chaos, and so there can be no good writing under the circumstances.  I decided I should just write to provide you all with an update before more time passes. More

Action

A couple weeks ago, when my children were not eating yet another one of my homemade dinners, I started lecturing them about how actions speak louder than words, that I hoped they would always follow through with acts of meaning and substance.  As they sat sullenly over their bowls of Japanese beef curry stew and rice, I told them about how my parents never told me or my siblings that they loved us; they still don’t.  But we always knew that they loved us.  Always.  We knew because they worked long hours, six days a week, to make ends meet.  We knew because they were always there when they weren’t working.  We knew because they always cooked the most delicious meals for us.  I told my children about how food, the making of it, the enjoying of it, is often an expression of devotion and love, that I cooked these nice meals for them because I loved them and wanted them to eat healthily and to grow.  So, how did they think I felt when they didn’t eat my food.  Sweet Isabelle eagerly raised her hand like she was in the classroom.  “Yes, Isabelle,” I said.  “Bad?” she replied, somewhere between a statement and a question.  Mia continued to sit, seemingly ignoring the whole exchange and me especially, no doubt practicing for her preteen and teen years.  Despite my attempt at inciting guilt for rejecting my act of love, the kids didn’t touch their dinner that night.

And yet my words seemed to have seeped into their brains, at least Mia’s.  Mia made me a card yesterday for Mother’s Day that read, in part, “Thank you for taking such good care of us and for loving with action.”  Yes!!!!  I was so happy.  It was the best gift I could have possibly received for Mother’s Day.  That and the continental breakfast of a smushed toasted croissant, unwashed raspberries arranged in a triangle and a hard boiled egg that had been in the fridge for days.  The best Mother’s Day yet.

On this day after Mother’s Day, I got to the hospital again, this time for radiation simulation.  I am thinking again about the idea of love with action, about how in truth this struggle to survive and live well these almost four years is a tremendous act of love.  Through the pain and suffering, exhaustion and fear of more pain and suffering, I have lived not because I am afraid of dying, but because I am expressing my love.  Love for my children.  Love for my husband.  Love for my parents, siblings, family, friends.  Love for life itself.  As trite as it may sound, love is a powerful force that can motivate through fear, depression and paralysis as nothing else can.  It is what has kept me going all these years.

I find myself afraid again today.  The period of breathing more freely was short-lived.  More

Breath

I feel like I can take a breath now, at least for another few days. I have room to twist and move under the constant threat of Death.  I can conceive of living beyond June.  This has been true for two weeks, since I received the results of my PET scan, performed five weeks after my first infusion of my current trial protocol.  I guess the forces of Fortune, Life and Good won that particular mini-battle over the Forces of Misfortune, Death and Evil.  That’s right – I actually have good news – good scan results to be specific – for a change.  Are you shocked?  I certainly was.  I don’t remember the last time I had good scan results.  I certainly haven’t had shrinkage in any scan EVER (I disregard one and two millimeter reductions as within the margin of error and, to me, such small reductions are for all intents and purposes, considered stable disease).

Before I get carried away and get your hopes up, technically, the scans were “mixed”, meaning there were areas of growth as well as areas of shrinkage. When Dr. S, tall and gangly in all his academic nerdiness and seriousness, came in and without any agonizing prelude told me my scans were “mixed”, I took that to mean essentially stability.  In the one or two times I’ve had “mixed” scan results, there was a millimeter of shrinkage here and a millimeter of increase here, nothing terribly exciting and essentially neutral.  In truth, neutrality was what Josh and I were thinking would be the best we could hope for.  I’ve come to reluctantly accept that a stable scan is a “good” scan.  But as Dr. S began to elaborate – a lung met previously measuring 1.0 cm x 1.2 cm, is now 0.5 cm x 0.5 cm, one of the two liver lesions has completely resolved and the other one had nearly completely resolved – I interrupted him.  “But these are dramatic reductions!”  There were other dramatic reductions in tumor size and activity level, some by 30% and more.  But then there were also increases, some of them also be 30% and more, but it certainly didn’t seem like there were overall more increases than decreases..  “What do you make of these increases?” I asked Dr. S.  He said, he didn’t know what to make of the increases, that they could be inflamed tumors (a natural response to the immunotherapy), that it was still early days in the trial, and that we should be encouraged that my tumors had indeed responded to the protocol.  “So, this is good?” I prompted Dr. S, afraid to believe.  “Yes, these are really good scan results,” and there was the smile from Dr. S, the barely contained excitement bubbling just underneath the geeky exterior of this consummate scientist who had no doubt seen so much disappointment and yet still found the optimism to go on. More

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