Shaping A Legacy

[I wanted to preface this post by providing a very brief medical update. I had my first scan post-HIPEC surgery last Friday, a PET scan, and received the results this past Monday when I went in for my fifth round of Folfiri. My scans were clean. In much the same way that I received the news of my previous clean scan in January, I’m relieved more than happy. I understand quite well that scans are flawed in detecting cancer growth, particularly in the peritoneum which is my area of concern – after all even though my January scan was clean, the HIPEC surgery in March revealed that I had three small peritoneal mets. I’ll be taking the scans to my HIPEC surgeon next Wednesday to ensure that he sees nothing amiss. Folfiri on the whole is going well, despite a rocky beginning after the first round with the chemo aggravating a partial bowel obstruction (a post-surgical complication which the PET scan confirmed as having resolved) and after some issues speaking during the second infusion. Folfiri makes my eyelids twitch during the last half hour of infusion and my mouth feel funny, like my tongue is oversized, which makes it hard for me to enunciate when speaking. These reactions resolve within less than an hour after infusion is complete, so I’ve just gotten accustomed to them. My CEA rose significantly after HIPEC to a high of 14.1 around the time of the partial bowel obstruction and has since been going down. I like to think that the elevated CEA is a reflection of post-surgical inflammation and cancer cells dying rather than tumor burden. My HIPEC surgeon told me that CEA readings cannot be relied upon until three month post-surgery. We’ve just hit that mark. On Monday it was 6.9, so it continues to decline which is what matters. Now onto this post, which leads to a big announcement…]

I’ve often heard people say that within every lie is an ounce of truth. I think the same concept applies to acts of kindness and goodness – within every act of selflessness, there is (at least) an ounce of selfishness. It’s something I’ve pondered over the last year as I’ve sought to find (or more likely impose) the good or purpose, if you will, in me having cancer. I’ve gone to Washington, D.C. to dabble in lobbying Congress about colorectal cancer-related issues. I initiated a successful effort to secure very valuable advertising space at no cost on the electronic billboards in Times Square and Penn Station for the Love Your Butt campaign during Colorectal Cancer Awareness Month (thanks Cousin N!!!). I helped start the only in-person support group in New York City exclusively for colorectal cancer survivors and their caregivers (which is thriving). Two weeks ago I spoke on a panel at NYU about cancer survivorship (the Youtube video is forthcoming). I’ve poured my heart into this blog, in part to help others who are suffering with the same disease or other life challenges. No doubt, everything I’ve done has had an altruistic, albeit probably very attenuated, effect of saving lives or comforting those hurting. But the truth is that my good deeds have also served me well for they’ve made me feel good about myself as a human being; they’ve made the fact that I have cancer seem less senseless; they’ve dulled the anger, soothed the fears and pushed me out of my personal darkness; they’ve led me to a community of people (some of whom have become genuine supporters and friends) who understand my disease and pain; they’ve given me some comfort in the faint belief that as part of some karmic order of balance in the universe the global good I do and sacrifices I make will spare Josh and my girls from all the horrible things that could happen to them. So, while I do all this because I truly do want to help, I also do it to help myself. Such contradictions are part of the complexity and nuance of human nature.

For me, I have found these acts of altruism and egoism have taken on a greater significance as I face mortality at the young age of 38, an age at which most people are usually too absorbed in their busy lives of career- and/or family-building to think about death and all of its consequences. I find myself wondering whether these acts may serve as my legacy, about the impact I will have had on the world, about how family, friends, strangers and those who are yet to be born will remember me, about the bad and the good that will be said of me. Creating a legacy is perhaps the ultimate act of selflessness and selfishness.

When I enter the NYU Cancer Center, I am greeted by a wall of names engraved onto glass; they represent the most generous donors who have made the NYU Cancer Center possible, who have made my experience there possible. Until I was diagnosed with cancer and faced the prospect of an incomplete life, I didn’t understand why people cared about having their names memorialized in this or any other manner. Why bequeath millions of dollars to one’s alma mater on the condition that that school’s new science building bear the donor’s name? Why do institutions like NYU dangle the carrot of a name forever carved into stone, glass or metal before prospective donors? Until I was diagnosed with cancer, it all seemed so narcissistic and entirely counter to the presumably selfless nature of any financial contribution intended for charitable purposes. After I was diagnosed with cancer and as I continue to wonder everyday how much time I have left on this Earth, I have come to understand why. I too now feel the need to have my name permanently etched somewhere (if only metaphorically) so that it (and hopefully the memory of me) will withstand the obliterating effects of time. As narcissistic as it may sound, I don’t want to be forgotten after I’m dead and gone for I want my place in history, however obscure. I don’t want my life to have been meaningless; I want it to have mattered, hopefully in a good way; I want it to have left a resoundingly positive impact on the world. Even though I will be dead and presumably won’t care about such mundane matters, I know that creating the legacy I want is part of living a more complete life so that when my time comes it will be that much easier to let go of this life. Cancer has given me the opportunity, an opportunity that not everyone has, to thoughtfully shape that legacy before it’s too late.

In a certain respect, every action we take that causes a ripple in time and space is part of our legacy – the many words I’ve written here and in other places and the many words I’ve read written by others, all that help I gave my cousins with their essays as part of the college application process and all the lessons my AP English teacher taught me about good writing, the dollar I gave to the homeless man on the subway years ago and the many dollars the parents in Mia’s class spent to pay for Mia’s school lunch this year, the passing career advice I gave to some young law school student and all the advice I’ve received from friends, career mentors and strangers alike. But the conscious crafting of a legacy is about intentionally making those ripples and making them powerful so that their effects will resonate, e.g., having children. For most people, their children are their greatest legacy to the world, the production of hopefully well-adjusted, smart, happy members of the next generation who will ideally make the world a better place. This is absolutely true for me too. But for me, that isn’t enough. Although the love I feel for my children is unparalleled and I would gladly lay down my life for theirs, there is much more to me than being a mother and a wife, a fact that I sometimes forgot in these last few years as my life was consumed by the overwhelming business of raising two little girls and giving them everything I possibly could. The truth is that while motherhood fulfills a big part of me, it could never satisfy my entire soul. For that reason, the shaping of my legacy, which by definition should be a reflection of my soul, must entail more than my children.

I was not raised to think about legacy, a word I couldn’t even begin to translate or otherwise express in Chinese or Vietnamese; we were much too poor for such abstractions and, frankly, my parents were too uneducated. I was raised in a home environment that largely emphasized looking out for oneself and one’s family first and foremost (and much of that included saving (or even hoarding) money). I remember watching an interview of Maria Shriver (niece of President John F. Kennedy) by Oprah one day after school somewhere in my adolescent years. Maria Shriver spoke about how as a Kennedy she was expected to discuss the world’s happenings with fluency at the dinner table every night and how as a Kennedy she was taught from an early age that she had an obligation of service to the world, to help those less fortunate, to improve the human condition. In typical teenage fashion, I’m sure a part of me must have thought that being forced to talk about local, national and global affairs nightly must have been a real drag and carrying the burden of being a Kennedy, particularly the duty to use knowledge of those affairs to serve humanity, must have been an even bigger drag. But the more mature part of me was intrigued by the upbringing Maria Shriving described, an upbringing that spoke of the affluence and values of America’s elite that were so foreign to me and particularly by the obligation of public service that was almost just as foreign. Of course, I understand now that this almost innate sense of duty bred into the Kennedy clan stemmed from that strange mix of altruism and egoism, a sincere desire to improve the world and a compelling need to be forever etched in the annals of history through their legacy.

My family of course lacked affluence, and the Kennedy values insofar as they related to giving back to the world were certainly not the Yip values. My parents have never spoken to me about the implications of current events, service, legacy or history. Each of us ate dinner when we were ready to eat dinner, while doing our homework or watching TV. My father was a devout Chinese newspaper reader so he was informed about current events and my mother avidly listened to Chinese radio so she had a basic grasp of world happenings, but I rarely discussed with them anything of substance or intellectual rigor. Sometimes, images of an earthquake-devastated region in China or the pleas of a monk at a local monastery would prompt my mother to donate $20 (which was a lot of money for us), resulting in my father reprimanding her and my mother nursing regrets for days afterwards. It wasn’t that my father didn’t feel compassion for earthquake survivors or didn’t believe in building community; he just distrusted the likely corrupt people from the organizations accepting that money. Both he and my mother believe, as so many who come from where they came from do, that people generally are self-interested, always out to make a buck, that one had to constantly be on guard against swindlers. I had a hard time understand my parents’ extreme skepticism; after all, I’d only ever really known the richness and transparency of this country, where the rule of law is more established and its citizens are more generous than anywhere else in the world. But then I started traveling to the developing world where I was constantly fending off people who wanted money from me, lowly government officials and street hawkers alike who schemed, lied and even stole. Then, I understood.

To the extent my parents believed in giving back to the world, it was limited to meeting family needs. My mother was perpetually collecting our old clothes and buying things like shampoo, batteries, laundry detergent and every other manner of consumer good to ship back to her parents and siblings who she had left behind in Vietnam. She and my father saved and saved so that when my mother finally succeeded in petitioning the United States government for permanent visas for the 13 members of her family to emigrate to the United States (13 was an unprecedented number), my mother could afford to front the funds to pay for her relatives’ airline tickets. That was the extent of service to the world I witnessed growing up, and in reality, that was as much as my parents could afford. Absent were even the gestures of kindness and charity towards ill friends akin to the gestures I’ve experienced during the last year, such as hospital visits, cooked meals, offers to take care of children. Again, that absence wasn’t a sign of my parents’ lack of compassion or desire to help; rather, Chinese people (at least Chinese people of my parents’ generation and earlier) just don’t disclose illness; illness and any other circumstance that might cause the “loss of face” (i.e., weakness, embarrassment and shame) were closely guarded secrets that were at most shared only within the sacred confines of the family nucleus. Indeed, the ill and those dying and their families were to be avoided for fear that the evil spirits that plagued them might bring bad luck to those not so unfortunate.

By virtue of this revealing blog, it’s obvious that I don’t subscribe to traditional Chinese superstitions about evil spirits and haven’t adhered to some of my parents’ values. I do believe in giving back to the world in a manner that extends well beyond my family and sought to do so beginning in my teen years and beyond. In high school, I spent a summer volunteering at the Braille Institute, keeping people who had lost their vision company as they wove baskets or learned how to use a cane. In law school, I spent some time defending poor tenants against oppressive landlords. As soon as I made money, I started making modest charitable contributions to worthwhile causes for, unlike my parents, I don’t believe that the people who run nonprofits are all corrupt (although a healthy dose of skepticism and appropriate levels of transparency to ensure accountability is absolutely necessary). As a lawyer I did some limited pro bono work like helping a couple people obtain compensation from a public fund for victims of 9/11. Maybe, I deviated from what I was taught because I am ultimately a product of this great and generous country, or maybe it’s the result of being taught from elementary school and beyond about the importance of giving back and helping the less fortunate, or maybe it’s because I went to a couple of America’s elite educational institutions and rubbed shoulders with Kennedy-like classmates and some of those Kennedy values rubbed off on me, or maybe it’s all of the above.

All that being said, I never found any particular passion for any of the good I did. I never gave all that much money to any charity. I didn’t feel any commitment in helping the poor or the blind or the oppressed. I did very little pro bono work as a lawyer. I was too busy working long hours for paying clients and trying to get home to my kids by 7. Whatever good I did was a matter of obligation, a perfunctory and lackluster effort at helping people for whom I had little connection, that required a gargantuan unnatural effort.

And then I got cancer and suddenly finding some meaning in my life and crafting my legacy became of paramount importance. Over the course of the first six months of knowingly living with this disease, it became clear to me that what I had already done for the colorectal cancer community would not be enough; that I wanted my legacy to be more impactful, and that indeed for the first time in my life, I had found a cause that I could really stand behind, a cause that my personality, education and skills seemed well-suited for. I quickly decided that I was too cynical to engage enthusiastically in lobbying Congress about colorectal cancer issues. Nor could I see myself being a very good at offering comfort and support to other patients as so many in the colorectal cancer community do – I’m too blunt, impatient and unsympathetic for that kind of thing. Nor could I be one of those people who are such strong advocates for raising awareness and emphasizing the importance of screening – I was 37 when diagnosed, well below the recommended age of 50 for the first screening colonoscopies so such advocacy is irrelevant to my case. Having ruled out all of the other possibilities, I found myself with only one intriguing option – fundraising.

Before I was diagnosed with cancer, there was nothing that sounded more appalling than asking people for money, nothing. When I’d see people trying to solicit donations for whatever charity in Union Square, I’d run the other way and think there could be no worse job in the world, being constantly told no and worse. Remember, I come from a culture that has a tendency to hoard money and the thought of asking people who are inherently self-interested to let go of their precious money was atrocious.

But cancer changed all that. After confronting death and living through unprecedented pain myself, after witnessing a slice of the horrible plight of the 50,000 people who die from colorectal cancer each year and after thinking of all the little children like mine who have lost and will lose their parents to this disease, the thought of asking people for money didn’t seem all that intimidating anymore. I realized too that so many in the colorectal cancer community don’t have the means (for they’re simply trying make ends meet), the connections or the voice to fundraise. I do. It felt right.  Besides, what was the worse thing that could happen to me — being told no?  After having lived through a cancer diagnosis and more, being told no didn’t scare me at all.

There was never a doubt in my mind that if I were going to fundraise, it would be absolutely for the purpose of research into finding a cure for colorectal cancer. For me, a cure must be the priority. While funds are needed for so many other aspects of cancer from financial support to the many who struggle to afford treatments to education and awareness campaigns, in my opinion, medical research that results in a cure for this and other cancers is what will save the human race, but of course I have a bias towards creating a personal legacy that will be felt for generations to come.

I had no interest in starting my own nonprofit so I had to decide which among the handful of colorectal cancer organizations I wanted to ally myself with. There was one organization that was very focused on raising money for a cure but I found its stated monetary goal unrealistic and found troubling that the funds would effectively go to one doctor. Others seemed disorganized or more focused on patient support or awareness. Only the Chris4Life Colon Cancer Foundation, the second largest colorectal cancer organization in the country, seemed truly committed to strategically smart and cutting edge research through the disbursement of funds to various institutions throughout the country from juggernauts like Sloane Kettering to lesser known institutions to solo researchers applying for seed grants. I’m a big believer in diversification – the same principles that apply to smart investing should also be applied to research funding. This is why I didn’t want to team up with any particular institution like NYU, my own treatment facility. I also liked Chris4Life’s founder and CEO, Michael Sapienza, a 35-year-old former world class musician who had given up that career after his mother died of colon cancer to start his own nonprofit whose principal mission is to find a cure for this disease. I was impressed by the significant amount of money he’d been able to raise within five short years in respect of a cancer that few seem to be aware of despite its deadliness, a testament to his passion and commitment.

So without further ado, I am pleased to announce The Julie Yip-Williams & Joshua R. Williams Research Fund. Our goal is to raise $1 million in a one year. I felt like this was a realistic amount and timing goal, a respectable initial foray into the New York City charitable giving community. Fundraising will be a lot of work for me, no doubt, but I feel the need to do this now while I’m able because I don’t know what next year will bring as I continue to battle my disease.

With this post, I urge you all to think about your legacy if that matters to you – don’t wait for cancer or some other life threatening condition to force you to contemplate such matters for it may be too late by then. I urge you, of course, to make finding a cure for colorectal cancer a part of your legacy, however small or large (and that applies to those of you who were raised like me not to think about public service or history or legacy too – I’m referring to you who are all my cousins in particular). Given the amount I’m trying to raise, I’m obviously looking for significant donations, but will of course accept any amount, including pledges and commitments to donate over the next two to five years. I would also be thrilled with any assistance in helping me promote my fund, either by sharing this blog post or sharing the webpage for the fund itself.  100% of the money will go to research since Chris4Life raises money separately to cover its overhead expenses and other endeavors. As a lawyer I worked on many transactions involving significant investments of money (as in hundreds of millions of dollars) into companies. In representing those investors, I learned how to negotiate and exercise rights to safeguard those investments, ensuring oversight and accountability. I intend to bring my training and knowledge as a corporate lawyer into my charitable efforts as well, including listening in on meetings of Chris4Life’s medical advisory board which determines how funds are to be allocated to research.

Because I think all people are motivated to some degree by self-interest, I will tell you why there is such a convincing case for donating funds to find a cure for colorectal cancer. In this world filled with an ever increasing number of unavoidable carcinogens, I don’t believe there is a charitable cause more deserving than cancer research, not the arts, not education, not community, because finding a cure for cancer is about life itself without which nothing else would exist; it’s about the perpetuation of the human race. Once you or someone you love has cancer and receives the benefits of all the research that has been done in the past, then you will know gratitude for those who have come before, those doctors who dared to try the unimaginable and those patients who bravely acted as the guinea pigs. Each time I receive chemo, I look up at the bags hanging from the IV pole and give a little thanks to those first children who were the victims of leukemia and were subject to the first brutal experiments with chemotherapy in the 1940s and 1950s. And of course, none of today’s treatments would have been possible without the money to develop them. I urge you to think about your children and your grandchildren, to think how they may benefit from your contributions to finding a cure for cancer. Even if you care not at all about colorectal cancer, I’d still urge you to consider donating to finding a cure for other types of cancer that have a particular significance to you, for as is often the case, one discovery in one area of cancer can have ramifications for treating and curing other cancers.

Cancer is the second-leading cause of death in the U.S. (totaling 585,000 per year), nearly tied with heart disease (which as we all know is largely preventable). And among the different types of cancers, colorectal cancer is the second leading cause of death, second only to lung cancer (again, which we all know is largely preventable by not smoking). Lung cancer kills nearly 160,000 people a year; colorectal cancer kills approximately 50,000, with breast cancer coming in third at about 40,000 and then pancreatic cancer following close behind with 39,000 deaths. Other than genetic mutations that occur in a small percentage of cases, no specific behavior is known to cause colorectal cancer. By that fact alone, colorectal cancer research deserves more attention and money. The number of new colorectal cancer cases per year is much lower than the number for breast, prostate and lung (136,000 to 235,000, 233,000 and 224,000, respectively), which only confirms the deadliness of colorectal cancer as it kills at a much higher rate as a proportion of new cases. Lower rates of death as compared to onset of new cases as in the case of breast cancer (235,000 new cases to only 40,000 deaths) is in part due to the tremendous advances in breast cancer research and highlights the severe underfunding of colorectal cancer research in both the public and private sphere – something like $940 million of NIH money is spent on breast cancer research each year as compared to $40 million for colorectal cancer research. Such severe underfunding in turn is the result of a lack of awareness – colorectal cancer despite its deadliness has never attracted the attention that breast cancer has managed. This is no doubt in part due to society’s reluctance to talk about something as distasteful as the colon and bowel function and the absence of an effective marketing effort.

The most frightening trend with colorectal cancer is that it’s on the rise in younger and younger people (i.e., the population under 40) at a rate of 2-3% a year. Even among the population who carries Lynch Syndrome (a genetic predisposition to colorectal cancer among others), the incidents of cancer are popping up at earlier and earlier ages through the generations. This makes me believe that there must be environmental factors that trigger colorectal cancer. Unfortunately, cause is virtually impossible to determine – it might be the waves of radiation coming out of our phones, the food we eat, the water we drink, the plastic that touches our lips, the soaps we use. We will never return to a pre-industrialized age and a state of nature so all these potential carcinogens are here to stay. We just have to pay the price by finding a way to manage the harm that comes from living in a world full of modern conveniences. Rather than that price being our own lives or the lives of our descendants, I hope that you all will pay the price by doing something to end cancer now, whether it’s donating to my fund or another organization or running a race to raise money or awareness or throwing your own fundraiser. Make finding a cure for cancer part of your legacy to the world.

 

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3 Comments (+add yours?)

  1. The Astonishing FartMan
    Jun 25, 2014 @ 12:40:31

    I’ll definitely send a few bucks–at least as much as your folks would give me if I showed up begging at their doorstep–and maybe a little more.

    Seriously, even though I have (or have had?) Stage IV CRC, I’ve never before given a penny to that cause. I’ve donated to other cancer causes and give regularly to some other charities. But not to CRC because that felt selfish to me. But giving to your fund will allow me to avoid that selfish feeling.

    Yes, I’m selfish, too, very selfish, and–for that very reason–hoping you’ll keep writing about what’s happening to you and not get so busy with fund-raising that you put down your pen or neglect other important things (not least of which is taking care of yourself).

    For me, being very selfish, I want to try to “incorporate” cancer into my life in such a way that the disease is dealt with so far as is “necessary, useful, or good,” yet does not overwhelm everything. Cancer is rather demanding so to do that with perfect success is impossible, of course. To do it with even a little success is extremely difficult–another Catch 22: I have to remember to forget about cancer sometimes. Quite a trick!

    Whenever you leave this world for the better one to come, your writing will make a brilliant legacy, perhaps more valuable than money for a cure because writing ability like yours is a rare gift and until we humans become immortal, we will yearn for and need the comfort of knowing that we are not alone with the kind of thoughts so few of us are able to express for ourselves. With cancer, there’s a tendency either to retreat into oneself or to retreat into the disease, when what’s most needed is a kind of “back and forth”. Your writing creates a place where we can retreat and yet helps us find our way back to the world around us.

    Reply

    • julielyyip
      Jun 25, 2014 @ 19:34:41

      Thank you for this kind comment (in addition to the others you’ve left). You can rest assured that I will never put down the pen and that my priority is taking care of myself. You also have an amazing way with words.

      Reply

  2. paddleboardgirl
    Jun 27, 2014 @ 08:54:26

    Julie I am so impressed by your vision and the energy you have already been able to put into it while undergoing intense treatment. We all try to find our “meaning” through this and I think I have found mine, coming up with more effective strategies to help people deal with the emotional aftermath – of course I am more interested in helping “young” Stage 4 fighters – as I know it will help me as well… You are a true source of motivation and inspiration!

    Reply

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