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

Paralysis

I often feel like my life is the locus of a vicious battle between Fortune and Misfortune, Life and Death, Good and Evil and I (my body, mind and spirit) am a battered and bruised pawn in their violent games for control of I-known-not-what.  Such thoughts invoke images of the mythical clash between God and the Devil.  I believe, usually, in a non-Judeo-Christian God but I do not believe in devils, the Judeo-Christian kind or otherwise.  And yet, if I examine the trajectory of my life, I don’t know what to believe.  The forces of Evil made me blind at birth in a place and time of desolation and poverty, made my grandmother hate me for that blindness, so much so that she would have me killed by an herbalist.  The forces of Good intervened so that the herbalist refused to do the deed no matter how much gold was offered to him; they took me out of that place of desolation and poverty; they kept me safe and alive on a multi-week voyage to a new future on a rickety fishing boat; they brought me to the greatest country in the world where anything is possible.  The forces of Evil saw to it that my vision would be impaired, however, that no doctor would be able to make me see like everyone else, that I would forever be legally blind.  The forces of Good though had given me innate intelligence, mental fortitude and determination, enough of those intangible qualities to overcome the visual disability and the poverty, the social stigma and the cultural and immigrant biases that would have me believe I could do nothing with my life.  The forces of Good helped me win an enviable education, a highly successful career and a wonderful husband and children.  But the forces of Evil were not done with me yet:  Stage IV cancer at 37 that theoretically was curable at diagnosis, but of course it became incurable and terminal.  And so the battle between Good and Evil continues.

In the unscripted drama of my life and that constant tug between Good and Evil, I should not have been surprised then when things did not go as planned with the trial.  I was to start the trial the day after I wrote my previous blog post, a Wednesday.  I made it through a sleepless night of stress and pain.  But by 11 a.m., I knew something was wrong when treatment had not started yet.  Dr. S, the principal investigator of the trial, who had just cleared me for the trial the day before, walked into my hospital room and asked if my husband was around.  Not a good sign.  Dr. S proceeded to tell me that the Sponsor, the pharmaceutical company sponsoring the trial, had only that morning looked at my scans from the previous week.  They were concerned about the bone met at T1; they were concerned that the expected inflammatory response from the immunotherapy could cause that met to grow so big it would hit my spinal cord and cause paralysis, in which case I would be a quadriplegic for whatever remained of my life.  Dr. S had been sent by the Sponsor to review this risk with me.  The safest course of action would be to radiate the met but then I would have to wait four weeks after finishing radiation treatment to start the trial, and there was no assurance that there would be another spot for me because I would definitely lose this one.  In the meantime, the tumors elsewhere would continue to grow.  I was aware of no other clinical trial that held the same level of promise as this one that I had fought so hard to get into.  I got Josh on the phone and he and I plied Dr. S with questions.  How much of a risk?  Impossible to quantify.  When would the paralysis occur if it occurred?  Immediately.  What if the paralysis didn’t happen immediately; would I be at risk for as long as I was on the trial?  I would be free and clear by the third treatment, which meant three weeks of living with the risk and the fear.  Dr. S very unhelpfully told me it was a difficult decision to make, that he didn’t know what he would do were he I.  There were patients who had responded well to this trial and there were patients who had not responded at all.  In other words, if I did become paralyzed, it might be entirely for naught. More

In

I’m writing this blog post on my phone, so it will be a short one. I just wanted to let everyone know that after what felt like an eternity, I am IN!  I am about to start the clinical trial of which I wrote in my last post. There were so many hurdles to jump through that I felt like I might fall with every step and then be excluded from this oh-so promising study. The mental anguish and stress resulting therefrom, combined with my increasing pain, was at times almost unbearable. In more than 3.5 years of living with this disease, I have never known such anxiety and stress. I say that without an ounce of exaggeration. 

Signing the consent, which I did on February 10, was not an automatic ticket in (as was the case with my last trial). At the most fundamental level, my cancer tissue had to be shown to express a threshold amount of CEA. One of the trial drugs attaches itself to CEA. So MSK secured tissue from my bilateral oopherectomy at NYU and sent that to the trial’s sponsor for testing.  My blood serum expresses very little CEA (less than 50) compared to many people with CRC (hundreds and thousands).  To address my worry, I started researching the correlation in tissue versus serum expression of CEA, trying to find whatever I could to reassure myself.  The results finally came back last Friday indicating that my tissue was positive for CEA. 

Next were the scans. Last week I had 4 scans in the span of 5 days. That must be some kind of world record. I had my usual chest CT and an abdominal and pelvic MRI. I then had to have a PET as per the requirements of the study. The biopsy would need to be taken from an FDG-positive site, something only a PET could indicate. The scans all showed more progression, which was not surprising based on the increasing pain, but what was surprising and upsetting was a bone met in my thoracic spine, at T1. T1 is close to my spinal cord, which means the cancer is that much closer to my brain. Plus, the trial has an exclusion for any active or untreated metastasis of the central nervous system. Could a met on my vertebra that was penetrating into the outer reaches of the epidural space exclude me?  For 24 hours I agonized. I wanted to scream!  So close and yet so far. Last Friday, my MSK oncologist ordered a thoracic MRI to take a closer look at the bone met. I would not be excluded but they had to make sure the met, when it became inflamed from the immunotherapy, would not hit my spinal cord and cause horrible palm. If it would, I would need radiation immediately and the trial would have to be delayed. Fortunately, the MRI showed that the tumor had to grow by 50% before it would hit my spinal cord, and so would not be an issue. Odd what I feel relieved by these days. 

Yesterday, I underwent the required biopsy. It went as smoothly as I could have wanted (unlike the horrid lung biopsy for the last trial). The tumor I can feel right next to my belly button was a nice juicy and easy target. 

So after another EKG and blood work today and meeting the oncologist in charge of this trial, I made my way over to the hospital to be admitted. I will receive my first infusion tomorrow and will be here for two nights   I expect to be feverish and have pain as my immune system gets revved up. I am told that there are people who have responded really well to this trial — I know some of those people — and people who have not responded. And they have no idea why. I find myself wanting so very much to fall into the first category. I don’t think I’ve ever wanted anything more. I’m excited but scared and cynical and jaded  

In these last few weeks of pain and anguish, I have felt especially alone in this journey, as everyone continues in the normalcy of his or her life.  In my desperate longing to live, I am again humbly asking you to stop in the midst of your enviable normal living and spare me a thought or a prayer. 

Believe

[For once, I have good news. So read on.]

I love Roger Federer. For those of you who don’t know, he is, most would say, the greatest male tennis player of all time (“GOAT”).  I’m more of a Federer fan than I am a tennis fan.  It all started when I met Josh, who was and is a lover of all sports (other than hockey and soccer), but tennis seemed to throw him especially into alternating periods of gut-wrenching anxiety and euphoria, and Roger Federer especially so.  He would watch Wimbledon or the Australian Open matches on tape delay and absolutely despair when Federer dropped a set.  I didn’t know anything about Federer back then and thought Josh was just crazy; how stupid to care so much about two men hitting a tiny ball back and forth.  I’d secretly go on line and find out Federer had won the watch – Josh hates watching sports with anyone who already knows the outcome – and then tell Josh lovingly, “It’s going to be okay, honey.”  Then Federer was in his prime and racking up Grand Slam titles at an astounding pace as he sought to beat Pete Sampras 14 Grand Slam record.  Josh, as do most people, loves to watch dominance, to marvel at human physical excellence, and Roger Federer was a prime example of the incredible feats that the human body is capable of.  My feigned interest in basketball and football disappeared after we got engaged and then married, but my love for Federer persisted. More

Home

Another long silence. I know the silence makes many wonder and worry.  I’m sorry for that.  In this case, in addition to dealing with the usual medical ups and downs (mostly downs at this point), I was simply busy with the holidays, lots of family visiting and staying with us, and throwing myself a 41st birthday party in our newly combined and renovated apartment.  All of these events that carry with them symbolic acts of living and life revolved around not just family and friends, but also this special place I worked so hard to create – home.  Ironically, even my medical developments seemed to resonate with the sense of coming home.

A week after my last blog post, scans showed that I had failed the clinical trial I had been on at Memorial Sloan Kettering (or more accurately, the trial had failed me). They revealed growth in abdominal lymph nodes and two new lesions on my liver (which I suppose is preferable to new lesions in my liver).  The news was, while not unexpected, still upsetting, because I now have involvement in another vital organ, another way by which the cancer could actually kill me.  Will it be my lungs or my liver?  There was some shrinkage and some growth in my lungs, so the thoracic tumors were overall unchanged.  I lost my hair for that awful trial, suffered unbelievable fatigue, underwent that atrocious lung biopsy and for what?  Absolutely nothing!  I was kicked off the trial for progression, although I ran first, so I like to think I kicked it.  More

Previous Older Entries