A Dance Between Two Worlds

[It’s been 2.5 weeks since my last post.  Kids being home from school, the holidays and the general craziness of this time of year really interfered with writing.  To make up for the extended silence, this post is a bit long and covers a broad range of topics.  I will also endeavor to write more this week as next week promises to be another quiet week as one of my dearest cousins is coming all the way from LA to be with me for my final chemo treatment and spend the week helping and hanging out with me.  Happy New Year to all and thank you for reading.]

The girls and I baked thick and chewy chocolate chip cookies for Santa this year.  Santa seemed grateful because he was very generous to my girls – a wooden medieval princess castle replete with turrets, a functioning drawbridge and matching miniature furniture and figurines, a pink nylon tent with windows and a door where they can hide and pretend to their hearts’ delight, a Tinker Bell tea set (because Isabelle is absolutely in love with Tink), a shopping cart that converts into a kitchen complete with stove, sink and clock.  Since Santa and his elves were so overwhelmed this year, Mommy was up until 4 a.m. helping Santa wrap his many gifts (not to mention the many from Mommy and Daddy), all while catching up on this season of Grey’s Anatomy.  Gifts were torn into early Christmas morning, leaving our living space a mess of plastic toy pieces, packaging, wrapping paper and ribbons.

I started cooking our Christmas meal at 9:30 Christmas morning – plans for prepping the day before fell through because I was so tired from staying up half the night before wrapping gifts.  In the span of less than six hours, in between cleaning and playing with the kids some, I made beef tenderloin with a parsley cream sauce, cauliflower risotto, green beans with fried shallots, broiled vegetable soup, baked eggs with butternut squash and kale and an apple and pear crisp.  My sister served as my sous chef cleaning and chopping some, but mostly it was all me.  Josh and my sister told me the end results were the best of my many culinary endeavors, my finest hour.  Christmas Day was the first time I’d really cooked, certainly the first time I’d tried to cook anything new, since my diagnosis – something I did at least twice a week before I got sick.  For a long time, food had lost its appeal – and truthfully it’s full appeal has yet to return – because I associated eating with the abdominal pain, bloating and other discomforts of my colon cancer symptoms.  Plus, it was impossible not to fear that everything I ingested would cause cancer.  But the fact that I cooked and even found pleasure in doing so and apparently cooked my best meal ever made me proud that day, like I had truly overcome a beast on my back, another manifestation of my cancer enemy who would seek to deny me one of the greatest joys in life — food.

Baking cookies, wrapping and opening presents, puttering around in the kitchen with my beloved pots and pans– it all felt so normal and familiar.  And in the midst of all those seemingly normal activities on Christmas Day, as I approached the final chemo treatments with a CEA hovering in the normal range, I felt like I was reclaiming bits of my old pre-cancer life.  It almost felt like the door to that old life was standing ajar, calling to me, inviting me back into its safety, comfort and familiarity, after a six-month sojourn into the world of doctors, surgery, chemotherapy and everything else that comes with colon cancer.

My pre-cancer world was filled with the everyday mundaneness of raising two little girls, being there for my husband and fulfilling the demands of being a corporate lawyer.  It assumed that I would live a long life barring some statistically unlikely accident, so Josh and I thought about when we would want to retire and I dreamed of vacations to far flung places on my own like I used to take before marriage when the kids were a little older.  Josh and I would use our season tickets to see the Brooklyn Nets play in their inaugural year at the Barclays Center, a mere two minute walk from our apartment building, and I obsessed about scalping our tickets for the games we didn’t use for as much as I could.  We  took the kids to see Disney on Ice and Barnum & Bailey Circus and for weekends in the country once in a while.  While Josh was prone to occasionally complaining about big city living and the stresses of his job, I never really complained – I loved living in New York; I loved our apartment perched above Flatbush Avenue where we could see the Statue of Liberty in the distance.  I didn’t mind the occasional staccato punch-punch of jackhammers at 11 o’clock at night as something was being fixed outside and the press of people on the subway at rush hour.  I was always, always grateful that we were all healthy, never forgetting what really mattered.  I’m not a “grass is always greener” person; I tend to appreciate what I have and if I’m not entirely happy with what I have, I find a way to make myself happy.  Maybe, it’s because I’m an immigrant and remember what it was like to get Wrigley’s spearmint gum wrapped in red and green paper as my one and only Christmas present when I was little.  Maybe, it’s because I came to this country via a fishing boat that measured 18 by 4 meters with 300 human bodies crammed together like sardines for endless days.  Whatever the reason, while I recognized that my pre-cancer world was ever so ordinary, conventional and normal– some who might spend their lives jet-setting around the world or working on archaeological digs might have even called it boring —  it was my world and what I knew and, yes, what I loved unequivocally.

But six months ago exactly today, I was told I had a suspicious mass in my transverse colon and thereby was thrust against my will into the world of cancer, of uncertainty, of fear, of life and death, of nearly everything I’d always dreaded in the recesses of my subconsciousness.  Those of you who have read this blog have shared with me in some small way the tremendous and all-consuming experience of making my way through this new world.  In other posts, I’ve described that world as a prison.  In the beginning, I lived in a cell in solitary confinement and without windows when every waking thought was about cancer and the only escape was sleep if it came; over time, I was released from my solitude and found others like me and then I was allowed out onto the prison yard for sunlight and exercise and escaped for a minute at first, and then ten and then an hour, and then not every waking thought somehow involved cancer – just most of them.   You’ve glimpsed the darkness of that world and seen the prison from the outside.  And for those of you who inhabit that world with me and are my prison-mates, you know that darkness too.  A part of me wishes so fervently, as my final chemo treatment looms next Monday that I could break free of that prison, bring this cancer sojourn to an end and walk through the door back into my old life, back into the innocence and freedom it represented, back…back…back…

But as we all know, life never moves backwards.  Too many times to count, even before cancer when life became overwhelming with kids and marriage and work, I wished I could be a little girl again and have my parents worry about everything and all I needed to do was play.  Sure, when my parents visit and cook for me and I eat my favorite dish ever in the whole world (chicken pho), snippets of what it felt like to be cared for and loved as a child come back to me, but the feelings are illusory, chased away by the reality of my parents’ lined faces.  For better or worse, we can never go back to once was because what once was can never be again, no matter how much we wish it could be so.

So what can we do but cobble together an amalgam of what once was and what is to create what will be, a merging of the old familiar and beloved world with the new world to forge a reality that is anything but conventional within a minimum-security prison if you will, where I bake cookies for Santa one week and go to chemo the next, where I employ the vernacular of colorectal cancer with the same fluency as I once spoke and wrote the words that come with buying and selling billion dollar companies, where I console a fellow cancer fighter on Facebook one moment and then text a fellow mom about playdates the next.  No, there is no retreating to the pre-cancer world.  There is just this dance I do now as I constantly navigate between the world of cancer and the world that is not cancer.

As an ethnic Chinese immigrant from Vietnam, I know a thing or two about dancing between two worlds, and I find that, as has been the case with so much else during this cancer fighting journey (and as I wrote about in Faith, A Lesson of History), the experiences of my life have prepared me to fight this war; it has shown me what it is to dance, and the value in dancing, between two worlds.  I came to this country when I was nearly four years old.  Until age 17, I lived in predominantly Chinese and Vietnamese communities, at first in Los Angeles’ Chinatown and then a suburb called Monterey Park (a socioeconomic and demographic phenomenon because it was the first suburban Chinatown in this country).  Chinese newspapers, radio and television took root early there during my childhood and grew more prevalent.  My parents shopped at Chinese markets with occasional forays into American ones, but those were rare since prices at the local Ralph’s were always higher than those at the 99 Ranch Supermarket (Chinese people love to name restaurants and supermarkets with fortuitous numbers like 99 and 88).  I didn’t have my first “American” meal with a fork and knife until I was maybe eleven or later.  My public high school of 2000 students was 60% Asian and 30% Latino and 10% other.  We celebrated Chinese New Year, burning firecrackers to scare away the evil spirits, wearing our new clothes and calling on relatives, the kids eagerly counting their red envelope money (which was our equivalent of opening Christmas presents); for the most part, Thanksgiving and Christmas were unremarkable days in our home.

Nonetheless, I and those of my generation were children of this country.  While we spoke Chinese and Vietnamese to our parents, we spoke English to one another, even in the early years when our English was riddled with improper grammar and no adults were there to correct us – my five year old cousin N, when expressing her reluctance to go outside to play for fear of the Boggy Man down the street, cried, “It’s too night!”  My siblings, cousins and I sat around picking English names for ourselves, derived from the names of presidents, first ladies, baseball players and utter randomness.  Before I settled on Julie, I seriously considered Kathleen.  Can you imagine me as a Kathleen?  We watched lots of television, laughing with the live studio audiences of Three’s Company and watched Sixteen Candles and the Star Wars movies, proving our indoctrination into American culture.

And yet, by high school I knew that I lived in a very insulated world and I had the distinct sense that that insulation wasn’t particularly a good thing.  I could tell by the way my father would wait in the car whenever I went to go visit my ophthalmologist for my periodic checkups, the ophthalmologist who saw his pediatric patients within the vastness of Jules Stein Eye Institute in the chi-chi area of Westwood, where there were few Chinese people.  “Come on.  Just come up with us,” my mother would urge.  But he would always say no; he’d rather nap in the car.  The truth was that he was too ashamed, embarrassed and intimidated to walk through the gleaming hallways of Jules Stein, too terrified at the prospect of having to respond to Dr. Rosenbaum’s blond secretary when she spoke to him in a language he didn’t understand.   I could write a lot about the immigrant experience as it affected my father, but suffice it to say, that experience can be quite emasculating to men, and my father, rather than confronting the thing that frightened him chose to remain sheltered in the safety of his car and his Chinese community.  As much as I loved my father and could feel sympathy for him, I refused to follow in his example.

I understood that the real world, the world beyond Monterey Park was quite frankly much richer, whiter and more powerful than anything I’d ever known, and if I was to succeed in this country, I had to break out of Monterey Park and go to a place in which I truly would be a minority, in which I would learn to feel comfortable among the people that so discomforted my father (and me to a lesser degree).  And so I declined all the offers from the in-state universities, choosing instead to go to Williams College in the mountains of western Massachusetts.  It was ranked #1 in that year’s and many subsequent years’ U.S. News & World Report ranking of liberal arts colleges, an important detail because its ranking was probably the only reason my rankings-obsessed parents were okay with me going so far away, that and the fact that Williams awarded me a full scholarship.  I got what I wanted; Williams was a foreign world where I was definitely a minority, both in terms of class and race.  My classmates had spent their summers at camp – what was camp I wondered as I’d spent my summers doing basically nothing.  My classmates had gone to prep schools like Philips Exeter and Choate – like the school the boys in Dead Poet’s Society went to, I marveled.  Their parents were foreign service officers stationed all over the world, senior executives at Fortune 500 countries and high-powered lawyers at big international law firms – my father was a butcher turned delivery man and my mother was a seamstress turned manicurist.  Even those parents who were not so wealthy, owned their homes and had saved for their retirements – my parents had no idea what an individual retirement account was and expected their children to be their retirement fund.  It took me a long, long time to feel comfortable at Williams; actually, I’m not sure I ever got truly comfortable, but it certainly laid the foundation for a post-college life that went far beyond what I had known or even dreamed of in Monterey Park.

Today, I feel just as comfortable eating with chopsticks amidst the chaos of a Chinese seafood restaurant with the live crabs and lobsters swimming listlessly in the tanks out front as I do dining at the finest restaurants in New York City with its fancy silverware and hushed tones.  Today, I can process what my parents say to me in Chinese or Vietnamese in one ear while at the same time processing what Josh says to me in the other ear.  I can slip with ease into Chinese or Vietnamese in a conversation with my sister when I don’t want Mia to understand what I’m saying.  Today, I can walk into my grandmother’s unadorned house with its garish long florescent bulb mounted on the wall (something commonly seen in China and Vietnam) with the same ease with which I can walk into a stately pre-War apartment on the Upper West Side.  This ability to maneuver with ease between different classes, races, languages and cultures is a great gift that I’ve been given.  I love that I can relate to so many in so many different worlds.  I think it makes me a smarter and more open and compassionate human being, who is genuinely curious and concerned about the manner in which so many people with divergent backgrounds and interests live.

Although the world of colorectal cancer is not one that I chose to enter, now that I’ve lived within its reaches for six months, I find that the same themes apply.  The world of cancer is not all darkness; there is light, lots of it.  Cancer is teaching me to maneuver into a world I’ve never known, to interact and engage with a community of cancer patients and caregivers that were once foreign to me.  That interaction and engagement has forced me to think about true compassion, the meaning of life, what truly matters, death and the process of dying and what I want my legacy to be to not just my children but the human race as a whole.  I can’t say that cancer is a gift or that I’m glad cancer happened to me – I doubt I will ever be able to say that – but since it became my new reality (and even if I were able to be cured, its mark on me will be everlasting), I chose from the beginning to embrace the experience (the bad, the good and the ugly), to really explore the cancer world, to let it teach me what it would and to be open to all the possibilities and the opportunities that cancer might bring.

I started this blog less than two months after my diagnosis.  Kathryn Finn-Blume, a beloved member of the colorectal cancer community (who is now facing her last days with such amazing and exemplary grace and dignity) found my blog through a posting I made on The Colon Club’s forum and she invited me to join Colontown, an online community of support on Facebook.  I was the 1000th member to join Colontown.  Its founder, Erika Brown, took note, read my blog and called me to invite me to attend a patient advocacy event in Washington, DC to persuade members of Congress not to cut Medicare funding for medical imaging.  I went.  While I have my doubts about the effectiveness of meeting with legislative aides in their 20s and not our elected officials, I discovered on that trip – rather unexpectedly I have to admit – how much I enjoyed meeting others who have my same disease and their caregivers.  To them, I could talk about poop and hemroids and chemo and everything else about our disease with ease, and they understood, just as I understood.  Colontown recently merged with Chris4Life Colon Cancer Foundation, a nonprofit founded by Michael Sapienza who lost his mother to colon cancer and which focuses on raising money for research to bring an end to this disease.  I met Michael for the first time at Chris4Life’s annual Blue Hope Bash, a big fundraising gala at the Four Seasons in Georgetown.  I’ve since met Michael and other members of Chris4Life much more extensively at subsequent events in Washington, DC.  Chris4Life featured me in their newsletter to donors – you can check it out here.  They also asked me to share my story on camera as part of a broader video geared towards fundraising – my portion can be viewed here on Youtube  (please excuse the bad hair and no makeup!) and the broader video will be ready in a couple months.  I was also asked, together with a small group of other Colontown members, to start a roundtable in New York City for those with colorectal cancer and their caregivers to meet monthly or bimonthly to share information and provide support; incredibly, there is no support group specific to colorectal cancer in New York City.  The first meeting will take place later this month.  Please let me know if you would be interested in attending.

I’m not entirely sure yet what else I will do within the colorectal cancer community, but don’t be surprised to see me becoming a fundraiser.  Before I was thrust into the cancer world, fundraising sounded like the most horrendous job in the world, the very prospect of asking people for money was entirely unappealing.  But now I have a personal stake; my children are automatically at greater risk for colon cancer and to facilitate the finding of a cure for this disease means potentially saving their lives.  And to that end, I will ask and plead with anyone  for money.  As Michael said to me, “What’s the worst that could happen – they say no.”  So true.  Colon cancer is the second leading cause of cancer-related death in this country, well ahead of breast cancer, and yet breast cancer receives a disproportionate amount of funding.  Everyone knows that October is Breast Cancer Awareness Month and yet no one knows that March is Colorectal Cancer Awareness Month.  The relative lack of attention paid to colorectal cancer is outrageous.  Perhaps so aptly, fundraising, more than anything else I could take on in the realm of patient activism, is about dancing between different worlds, about making those who are not of the world of cancer but who have money and power understand the stakes, about making them care.  It requires a certain adeptness at the dance.

In light of all that’s happened to me these past six months, both in terms of the emotional aspects of coming to terms with having cancer and my activism within the colorectal cancer community, even if I could get to a cured state, I can never return to that pre-cancer world.  And that isn’t a bad thing.  It feels like, as I complete my 12th and last round of chemo, the last at least in this go-around, I am approaching a milestone, a point at which I’m going to really begin the process of piecing together my new reality that is a hodgepodge of old and new worlds, both in terms of living with this disease as a mother and wife and me, Julie, all while being an activist for the movement to combat colorectal cancer.  I can’t tell you what the future holds, no more than I could tell you six months ago, when all images and assumption about my future were destroyed.  At this point, I’m making it all up as I go, dancing as I am moved to dance.

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6 Comments (+add yours?)

  1. Broc Romanek
    Jan 07, 2014 @ 07:28:14

    Great piece as always! Good luck with the last treatment, broc

    Reply

  2. erika hanson brown
    Jan 07, 2014 @ 09:33:31

    I love…”it’s too night”!!! Now that really says it!
    We love you, Julie!

    Reply

  3. Debbie Whitmore
    Jan 07, 2014 @ 16:02:05

    As always Julie, your writing is exceptional. Thank you for giving so many if us a voice in this cancer maze. I’m so excited for you to have your final chemo on Monday. I will be thinking of you! Make it a party at chemo and eat cake :))))

    Reply

  4. Kit Grady
    Jan 08, 2014 @ 11:45:12

    Beautiful piece. My hubby is in his 10th tx today, so your message is timely and so needed. Thanks and so wonderful to hear you are on your last chemo.

    Reply

  5. Katie
    Jan 09, 2014 @ 10:31:18

    Best of luck on your last chemo, and everything that comes after!

    Reply

  6. Shubing
    Jan 10, 2014 @ 02:01:02

    Julie–Sorry I am so late in saying “happy new year”! I really love this piece! You have been the source of thoughts and ideas and the greatest adviser to me as to how I should raise my son between cultures. Your courage amazes me everytime I read your blogs!

    Reply

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