A Good Life

I remember when I was an adolescent, my aunt (my mother’s sister) who had just recently immigrated from Vietnam, would take my un-roughened hands in her well-worn ones and say in a slightly wistful tone, “Seng, you have a good life.” To her, it was a statement of fact and perhaps aspirational prophecy. My hands had never known the harshness of working in the fields or making abrasive soaps to sell on the streets or even cooking or doing chores, all things that my aunt and mother had spent most of their lives in Vietnam doing. My youthful hands were pale, clean and smooth, unblemished by sun, heat, grime, labor and the brutal realities of a life that could have been. I once asked my father, during one of our many hours sitting in the car through Los Angeles traffic, why he had left Vietnam. I could not and still cannot fathom circumstances that would make a person so desperate as to leave the country that had been his home since birth and for thirty-something years thereafter on a rickety fishing boat with an unclear destination. His pithy response, “You don’t understand. You eat rice and I ate salt.” My father loves his cryptic Chinese and Vietnamese sayings. No, I guess I will never understand the suffering that compelled my parents to emigrate halfway around the world, risking their lives and their children’s lives for the nebulous promise of a better life, a good life.

I have stared at my hands a lot lately. They are ugly now, the fingers blackened and unnaturally wrinkled, the cuticles overtaking the bottoms of my fingernails, the fingernails themselves oddly pale in comparison to the darkened skin. My hands look strangely tanned (as does the rest of my skin). Fissures that are various shades of pink, red and black (from dried and old blood) adorn the skin right along the edge of my fingernails on the backs of my hands. There are open cuts and the remnants of those open cuts along the creases of my fingers and palms. My ravaged hands are evidence of what the drugs have done to me, symbols of the toll that cancer has taken on my body and my life. I find myself looking enviously at other people’s hands and even my own hands in photos that predate my cancer diagnosis. Seeing those before-cancer photos are especially poignant and even heartbreaking. Every photo, every memory is always now automatically identified by my mind as before or after cancer. Would my aunt today still look at my after-cancer hands and tell me I have a good life? I daresay not.

In many respects I have fulfilled the promise of the American dream, that promise for which my parents risked all. In this land of wondrous opportunity, sight was given to me (as modest as it may be); I managed to go to two of the most elite institutions of higher learning in the world despite my visual limitations and the fact that my family had no money; I practiced law at a preeminent international law firm, earning more money in one week than my father did in six months. I married a tall and handsome man who loves me a thousand times more than I thought I could ever be loved. I brought into the world two beautiful little girls who are the light of my life, more wonderful that I ever dreamed possible. I live in a lovely apartment with views of the greatest city in the world. These are all vestiges of a good life, a fulfillment of the prophecy my aunt once casually uttered.

But then there’s the cancer, which has an incredible power to destroy a good life, to steal the joy, the gratification and sense of success that came with that good life. Sometimes, it makes me feel diminished, a lesser person, a person who was forced to give up her career, a person whose body has aged beyond her years, a distracted and tormented person who is now less of a mother and wife, a person who can no longer live with the abandon that she once took for granted. Two-and-a-half years after diagnosis, I still grieve the loss of that good life.

I wonder how much more diminution I can withstand, especially when the drugs are raging inside me, causing not just the mouth sores, but the uncontrollable diarrhea that cannot be managed by the over-the-counter Imodium, the fatigue that makes me fall asleep on the subway, the pain in my hands and the disconcerting hair loss to my once lustrous mane, the rash that makes me look perpetually overheated and sunburned or the scale-like skin on my back and chest that reminds me of some amphibious alien creature I once saw in a movie.

As it was, I already felt diminished because I couldn’t and still can’t see like everyone else and was therefore deprived of such seemingly basic things as driving a car (which therefore set limits on where I could live) and playing tennis and reading a book more than six inches from my face. All my life, I’ve felt lesser than I could have been because of the cruel fates. For an overachiever like me, the thought of being lesser is very painful. It took me some 30 years to find a modicum of peace with the perpetual feeling of being less than I could have been. And now the cruel fates have sought to bombard me once again. How much more degradation of my body can I tolerate? How much longer can I live a life that feels that much more diminished and no longer “good”?

Not much longer was what I was thinking three weeks ago when the cumulative effects of weeks and weeks of weekly infusions of Erbitux and pushes of 5-FU were finally getting too much for me to bear. I was scheduled for scans two-and-a-half weeks ago and I had decided definitively that regardless of the results of those scans, I was going to take a break from treatment. Whatever the benefits of my current regimen might be, I was no longer willing to pay the price.

The scan results were good. There was a “significant decrease” in my tumor burden in my lungs, the report said. The largest nodule which measured on the previous scan at 7×7 mm had reduced to 6×5 mm. Another two had also shrunk by a millimeter or two. And the many tiny nodules throughout my lungs were “much less conspicuous”. I love radiologist speak. Honestly, I questioned the definition of “significant” in this context as a one or two millimeter reduction doesn’t seem that significant at all to me. Of course, I’m happy with the results, more relieved really, but we all know that it’s just a matter of time before the cancer becomes resistant to this treatment and then I will be looking at clinical trials because I have pretty much exhausted the short list of available drugs. But the scan results indicated that I had bought myself more time and that is what I can most realistically hope for, time.

Time. Despite all my bitching and complaining about the loss of the life and body that once was, I still want time. I want to live this life that has been gifted to me. Not because I think Josh and my girls need me because regardless of what they may say or think, they don’t need me. They will go on in my absence and I know they will flourish and thrive, even if it may take a while. But I want to be here because even though I may think differently while in the throes of treatment, I still have a good life, a life worth being proud of, a life worth living. Sometimes, I just need to be reminded of all the goodness in my life.

My brother came to visit with his wife and five-year-old son a few days after my scan. Their presence was another reason I had wanted to take a break from treatment. We did everything it seemed in the 3.5 days they were in town – gorging on the best pizza around, a trip to the Statue of Liberty, a ride on the new and magical sea glass carousel on Battery Park, a tour of the Natural History museum, a jaunt through Central Park in its fall foliage glory, a tasty Korean feast in Koreatown, climbing 20 feet up an inflated tube at Mia’s birthday party at a bounce house, a trek through Brooklyn Bridge Park to enjoy the magnificent views of Manhattan and the water replete with a stop at the Ice Cream Factory for ice cream and the most delicious hot chocolate (the latter of which I accidentally knocked over onto myself and poor Isabelle who told me rather petulantly hours later she was still mad at me for my transgression). I watched my daughters play with their cousin in much the same way I used to play with my cousins when I was a little girl. I marveled at and was so proud of the way my girls tirelessly navigated the streets of New York City, fearlessly winding their way around masses of humanity with the street smarts and energy that I longed for as a child, leading their suburban-raised cousin around with a sisterly affection. Wonderful memories were made during those days, reminding me of the good life I still have filled with family who love me and whom I love.

And then the day after my brother left, I sat in on Mia’s weekly violin lessons. Although many of the practices and some of the lessons have been pure torturous during the last five to six months of her violin playing career, recently, she has seemed to turn a corner where she is growing to enjoy playing and recognizes that she has a natural affinity for the instrument and music in general. A few weeks ago, her teacher was working with her on all the excruciating details of perfect technique as she played the scales and then Mia got it and she played her scales so beautifully with such resonance and richness that I actually cried (to my slight embarrassment). I do not have a natural affinity for music and am one of those rare people who didn’t enjoy it, but watching Mia learn the violin has made me appreciate this aspect of our humanity that I never understood before. I actually love sitting in on her lessons because I am learning too.

Anyhow, the teacher was so impressed with Mia during last week’s lesson that she questioned whether Mia had really only started six months ago. I assured her that indeed Mia had had no music lessons whatsoever before then. She then told me she expected Mia to finish the first Suzuki book at the 12 month mark, something that I believe many children required 18 to 24 months to do. She also said she wanted Mia at that point to join an orchestra. I was surprised – an orchestra at such a young age? She told me there was an orchestra at the music school and that most of the children are nine- and ten-year olds, and that the orchestra had gone to Belgium to perform this year. Mia would be six if she joins an orchestra next April. Upon hearing all this, I almost cried again, not just from the overflowing maternal pride, but at my intense and greedy desire at that moment to be alive to watch Mia perform, to go with her to Belgium or wherever her music and young life would take her. I almost cried too at the very real and sad prospect that I probably won’t be here to do those things with her. Obviously, she inherited her musical talent from her father (who has sung in Notre Dame in Paris and Carnegie Hall in New York City), but just to think that she came from my body, that she is of my blood, the thought simply amazes me. I couldn’t be happier and prouder of my daughter’s achievements, as if they were my own. Mia as well as Isabelle are a constant reminder of the tremendous goodness that still remains in my life.

Honestly, if I did not have cancer, I would still be working at my career because I would have never been a stay-at-home mom. I wouldn’t be sitting in on Mia’s lessons. I wouldn’t be so involved in her and Isabelle’s lives, spending extra time with them at school drop-off in the morning and picking them up from school, talking to them about their daily happenings as we walk without the distractions and pressures of a job always lurking in my mind. I wouldn’t be able to help them with their homework or read to them as much as I do. I wouldn’t appreciate Josh as much as I do. I wouldn’t be cooking elaborate meals for my family. I wouldn’t be able to spend real quality time with my parents and brother when they visit New York. I wouldn’t be writing this blog. I wouldn’t be seeing life as the valuable gift it is. Individual moments wouldn’t seem as beautiful and precious as they do now.

The complicated truth is that incurable cancer has destroyed my good life in certain respects and has taken much from me. There can be no denying this nor cancer’s power. But it has also augmented my life and made me a better mother, wife, daughter and person in other respects. It has made me more contemplative – this blog is evidence of that fact – and therefore smarter. It has forced me to see the beauty that surrounds me. So perhaps, in the final analysis, when one weighs out the havoc cancer has wreaked and will continue to wreak, on the one hand, against all that it has taught and given to me, on the other hand, I still come out ahead, better and greater than I might have been, my good life, forever altered but still intact.

When everything is said and done, I ask that all who read and will read this blog and all who know me judge the worthiness and value of my life, whether it was good or bad, based not on the number of days I was on this earth, but rather by how I chose to live and by all that I achieved and produced in my relatively short life. When prompted in a speech class in high school to speak about whether I would choose a life of tremendous successes and tremendous failures versus a more even keeled life, I chose the former and what I chose was given to me. Even as I face my mortality at a premature age, I would make that same choice again and again. I have always believed – and cancer has not changed this – that a life worth living is one imbued with both success and failure, joy and sorrow, relief and suffering, but above all, it must be lived with purpose, passion and courage to not wallow in mediocrity or toil in a pointless job or endure a loveless marriage, but to venture forth and explore the unknown world and enrich the mind and soul, to love completely, to laugh, to embrace wholeheartedly all that life has to offer whether it be glorious or horrendous. These are to me the hallmarks of a good life and the criteria by which I wish my life to be judged.

***

Here is a picture of my family, Josh, the girls, my parents, siblings, sister-in-law and nephew.  It is one of my favorite pictures ever, a representation and at times a much needed reminded of my good life.

DSC_0101.

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12 Comments (+add yours?)

  1. Justin
    Nov 06, 2015 @ 09:52:14

    I think this is my favorite of all your posts. Words to live by, Julie.

    Reply

  2. tyler
    Nov 06, 2015 @ 10:51:32

    Thank you for embodying the good life. Thank you for the strength and wisdom that you share which helps me to build and love my good life. And most of all… Thank you for outing Josh; he will be forced to sing the next time the firm has karaoke!!! Great family photo!

    Reply

  3. Barbara Gettelman
    Nov 06, 2015 @ 10:51:41

    I agree with Justin. I am the other type or person, not driven, not even grateful, often. You make me cherish my life and wish for your moments to be as rich and full as you deserve. I think about your posts as an education. I reread them often and have become a better person because of them.

    I will never meet you but I will never, ever forget you.

    Reply

  4. Deborah Goldberg
    Nov 06, 2015 @ 11:49:07

    Julie your words could not be more precious for me than right now! I just got home from the hospital for an operation to remove metastatic colon cancer from one of my ovaries exactly a year after my original colectomy. I have three kids and am also a lawyer so lots of parallels here! Your words are so powerful and poignant — I am moved tremendously!!! Your words remind me how important it is to appreciate the life we have — no matter what! We humans are far too often on automatic pilot throughout our lives and end up not truly “living.” You have embraced life and are truly “living” — your strength and insight is an inspiration to me!

    Reply

  5. Deborah Goldberg
    Nov 06, 2015 @ 13:45:20

    Julie:

    I just posted a comment to your latest blog entry! Your voice is one of the strongest I have ever heard and I am so grateful for your posts.

    This blog entry came at a most perfect time in my life. I just got home (from Stanford hospital) after having my ovaries removed due to the growth of tumor that metastasized from colon cancer less than a year after my colectomy. I am 47, mother of three kids and a lawyer — so many parallels! After my first treatment (surgery plus 8 rounds of XELOX) I returned to all my old ways: working too many hours, running around far too much “for the kids” and just the general stress that accompanies this lifestyle. Your powerful, poignant words remind me (and should be read by everyone) of the need to truly “live” our lives on a daily basis.

    Thank you!! Deborah

    Reply

  6. Domitilla
    Nov 06, 2015 @ 16:29:15

    The good life is the one you live passionately, fully, giving and getting, regardless of the amount of happiness and sorrows, because in the end it’s a mix of them that makes you the human being that you are. You are a wonderful human being, so it must be a good life indeed the one you are living. Later this month I’ll be in NCY. It would be a priviledge for me to have the chance to meet you even if just for a short time. Just let me know by PM if and how we can arrange it. Thank you!

    Reply

  7. Cristina
    Nov 06, 2015 @ 18:07:51

    Thank you again and again for sharing. After my daughter, you are the person I admire the most in this world. I hope a cure is found so that you can continue living your beautiful life and keep writing. 💙

    Reply

  8. Holly
    Nov 07, 2015 @ 03:01:29

    I think is also one my favorite posts of yours. I wish you the best, always. I think of you often and hope you are doing well. If you ever have a remodel question (architecture or design related), you should ask my husband :). Hopefully we will start on our remodel soon, too.

    Reply

  9. Faith
    Nov 09, 2015 @ 21:39:46

    Beautifully said, Julie.

    Reply

  10. tadkins5069
    Nov 10, 2015 @ 17:21:46

    Like our precious Belle, your words paint the most clear, meaningful and touching picture of life….all of your blogs. This one just stands out a bit more because it is a message for all human beings.

    Reply

  11. The Astonishing FMan
    Nov 25, 2015 @ 01:23:43

    Your writing has such a direct, straightforward. true quality . . . and I think I might have realized part of the reason why.

    The subject of my comment is kind of “inside baseball” (and in less than two seconds you’ll see why “inside baseball” is a little joke in itself): The thing I just noticed about your writing is how rarely you use metaphors. In all of “A Good Life,” I counted only two or three.

    As you know, metaphors and similes can be wonderful things. They let us express what seems otherwise inexpressible, especially when we are trying to relate our thoughts and feelings to someone who has never experienced what we’ve experienced. So we say things like, “The moment the doctor told me I had cancer, the floor fell from beneath me, and it was as if I were on an elevator when the cable broke. I was falling, falling, falling, terrified, sick to my stomach, dizzy.” But metaphors engender problems, too, In addition to increasing the tendency to slip into cliches that drain meaning, rather than distill it (it hit me “like a ton of bricks”), metaphors are necessarily a second-hand substitute for the inexpressible reality. They are fictions we substitute to explain what life is “like” when we can’t explain what it truly “is.”

    Now, me, I can’t get through a sentence without conjuring up some lame metaphor, (usually a mixed metaphor). Life is, for me, a “second-hand business,” understood through the creation and interpretation of metaphors. But for you, dear Julie, the living of life, the observation of life, and the expression of life are much more direct. You stare at life, and see it, and express it most exactly as it is, without the prism of metaphors.

    Life without metaphors. That is a miracle. And when I say, “a miracle,” I don’t mean that metaphorically. I mean it is a real miracle–courageous, brilliant, insightful, generous, curative, all the qualities of a miracle–the way you describe your experience so directly, yet express yourself in way that causes those who haven’t had anything resembling your experience to understand. And for those of us who have gone through some of what you’ve gone through, we just say, “Yes, yes, yes.”

    Bravo!

    Reply

  12. Michelle
    Dec 17, 2015 @ 20:27:33

    Julie, thank you for your beautiful words, which resonate so beautifully with me. I am into my 7th month of stage 4 colon cancer diagnosis, having presented in May as suspicious for Ovarian cancer, only to be found to be Metastatic Colon Cancer after first surgery. As you describe, I have found living life to be richer and more poignant as I have come to terms with my diagnosis and the side effects of chemotherapy. I consider my family and friends to be my angels. My relationships are stronger and richer, and I feel lucky and blessed to be surrounded in love. I think of you often as I make this journey, and reflect on life as you so succinctly write about it. Thank you and bless you for being you and loving your rich life today. Wishing you continued happy days.

    Reply

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