A Nightmare

[I’ve needed to write the story of my cancer diagnosis for a long time, to work through both the painful and beautiful – yes beautiful – memories of that time. It is a long story, so this post is part one.]

Today is the one year anniversary of my cancer diagnosis. I wonder why it is that the memories of that most traumatic time of my life have not faded with the passing of the months, weeks, days, hours, minutes and seconds, why it is that, despite my senses being bombarded by a plethora of new experiences since those early weeks that have been traumatic and overwhelming in their own right, the images and feelings I associate with being told that I had cancer have an unparalleled and unprecedented grasp on my consciousness. The clarity of most memories dull with time, even the good ones that I want to hold close for all my life, like falling in love with Josh and seeing my babies for the first time. But the recollections of the pain and shock and all the minute details of my cancer diagnosis just won’t leave me for I’ve forgotten nothing about that time. Perhaps, this is so because it has only been a year. Perhaps, this is so because the story of how I came to be diagnosed is not your run-of-the-mill cancer diagnosis tale (to the extent there is such a thing); no, mine is a story that borders on the incredible. Perhaps, this is so because there can be nothing more momentous or memorable than facing death. Perhaps, this is so because I have some kind of post-traumatic stress syndrome. There’s a reason why war veterans wake up screaming in the middle of the night as they struggle unsuccessfully to forget the details of their horrors that visit them in their nightmares. Now, I am a soldier of my own war with my own demons to battle, the worst demons being the memories from a year ago.

I don’t wake up in the middle of the night screaming, but the memories do come back to me unbidden, sometimes triggered by being in a particular place or by what someone says or by nothing at all; sometimes, they feel like waking nightmares. They play out in my mind’s eye like a Greek tragedy in which I am watching myself with dread, knowing that I, the protagonist, will meet a terrible fate even as I go on so innocently and stupidly believing that my pain was just IBS or some other obscure intestinal disorder, but certainly not cancer. As the tragic hero of my own play, I will be brought down by my fatal flaw, my hubris, which would have me believe that I am young and strong (with my five-times-a-week-workout schedule) and that I am immune from cancer. But as a member of the audience, I know what’s coming and I want to scream at my alter ego, warn her so that her fate might be something other than what it already is.

I could never share with you all the memories that I remember too well. There are simply too many. And so I will share only a few so you understand some of the most pivotal scenes that run through my mind, at times like a movie on repeat. They almost all fall within that month before my diagnosis, the month when I had symptoms, and then the month after as I strove to accept my new reality. There are moments though before June 2013 that are burned into my mind, moments that lay the foundation for the events that would unfold and moments that make me especially marvel anew at how utterly clueless I was.

I remember sitting at my desk at work and sending a Facebook message to my siblings and cousins in March 2013, suggesting a big family get-together on the 4th of July because for the first time in years we were all going to be together, in Los Angeles for my cousin H’s wedding on July 6; I wanted to meet my cousins’ children; I wanted our children to play together as we once played together; I wanted to hang out and laugh and gossip. So I initiated the planning and the responses were quick and enthusiastic; the party would be at my brother’s house on the 4th of July.

I remember carrying my two children on Mother’s Day 2013, one on my back and one in my arms, 60 pounds of extra weight as I went up and down the subway stairs with ease, on our way from a meal with my parents visiting from out of town in Brooklyn’s Chinatown. I felt so strong and so confident that I could handle another child. My father thought I was crazy to want another and I remember looking at him as I carried my two girls as if to say, “See! Look how easily I’m doing this. I’m sure I can handle three.” Little did I know that a third child would never be (a loss that still pains me and I suspect will always pain me). Looking back, I wonder how I could have felt so good and strong with a giant tumor inside me.

I remember feeling sick that first Friday in June after eating my favorite yogurt and so began four weeks of bloating, belching, cramping, nausea, loud gargling noises in my stomach and mental and physical listlessness that would come and go with ever increasing frequency and intensity. I remember asking Josh the following week to pick up Gas-X for me on his way from work per the doctor’s orders because it was probably just IBS. I remember lying in bed after my nanny had left for the day on multiple occasions, dazed, and Josh coming home from work late to find the children were still running around in all their craziness because I simply couldn’t manage to put the kids to bed. I had just finished reading French Kids Eat Everything and was determined to get my kids to eat everything too by, among other things, sitting down with them to dinner every night; I remember how I just couldn’t eat as I sat slumped on the couch. I remember lying in the bathtub on the Tuesday evening exactly a week before going to Los Angeles, hoping that the hot water would ease the pain and then throwing up and not having the energy to finish the memo about a hugely important Delaware court decision that I had to write for work; later, my internist told me I should have called him then, that I should have gone to the ER then; so many “should-haves” but that was not meant to be. I remember going to my internist two days later and how concerned he was because my symptoms had gotten worse since my first visit two-and-a-half weeks earlier and how he had me see a gastroenterologist immediately because I was supposed to go on vacation the next evening and how he thought that was a bad idea considering how sick I was and how the gastroenterologist ran blood tests and scheduled me for an ultrasound the next morning and how the gastroenterologist told me that afternoon that my blood work seemed fine and nothing seemed amiss on the ultrasound so he was giving me the okay to go on vacation that evening but if I was still having issues upon my return, he would have to perform a endoscopy and colonoscopy. I remember us driving to the Hudson River Valley that evening to hunt for our future weekend home and battling through the discomfort all through that weekend as the severe constipation really set in. I remember getting on the plane to Los Angeles the following Tuesday, July 2, in a zombie-like state and somehow making it through that flight with two young children and then the awful mid-afternoon traffic to get to my parents’ house in Monterey Park (a predominantly Chinese suburb east of Los Angeles) and then eating my dad’s marinated ribs (one of my favorite dishes) even though I hadn’t pooped normally in who-knows-how-long and lying in bed afterwards, exhausted and in pain. I remember my mother coming home from work that night and her being horrified at how pale I was – “green” literally in Vietnamese – and thin I had gotten in the less than two months since she’d last seen me; I wondered later whether mothers have a sixth sense about their children. I remember… I remember…

The next day, Wednesday, July 3rd, Josh and I went to the Staples in the next town over to fax some papers to our realtor – we had bid on a house, had accepted the seller’s counter-offer and were about to sign the contract. While Josh was trying to figure out how to work the fax machine, I asked a cashier for a plastic bag, found a corner where hopefully no one would see me and threw up a yellowish-brown warm substance into the bag. Again, I lay lethargically in bed that afternoon. Again, I tried taking a hot bath. Nothing would ease the nausea and pain. By evening, I was vomiting water. I called the doctors in New York covering for my internist and gastroenterologist (after all, it was a holiday weekend); they both told me to go to the ER. Josh drove me to Garfield Medical Center a few blocks from my parents’ house, where I found a bunch of elderly Chinese people waiting to be seen. “I’m not going to wait,” I told Josh, “it will go away,” and we went for a walk around the block instead, hoping that that would make this bout ease. I wanted to hold on until I returned to New York in less than a week. I should have waited that night, but maybe a part of me knew that if I checked into the ER, I wouldn’t be leaving for a while and I didn’t want to miss the big family reunion that was going to happen at my brother’s house the next day, the one I had asked for months ago.

On the 4th of July, we all congregated at my brother’s Mediterranean-style house in the hills of Palos Verdes Estates where you can see the Pacific Ocean from the backyard. I was gratified to see my girls play in the inflatable pool and run around with their first and second cousins. It was what I had wanted. I was so happy to see my parents, siblings, cousins and uncles and aunts altogether, laughing and talking in all the many languages that I grew up with. For the briefest of moments, I could relive the most joyous parts of my childhood. But I was reminded quickly that I was no longer a child as we started discussing various gastrointestinal disorders for everyone was concerned about my obvious weight loss and illness (but of course cancer was never even a possibility). I took a bite of a hamburger because my parents kept telling me I had to eat something. I tasted Third Uncle’s homemade cream puff just so I could give him an honest critique with customary Chinese bluntness. But even that amount of food made me feel sicker. I escaped the noise and lay down in my nephew’s bed even as people were starting to burn sparklers with evening fall. While almost everyone went to see the fireworks, I stayed behind, trying to sleep through the discomfort on the couch.

The next day I felt a little better, although I barely ate at the big family lunch at a local Chinese restaurant. Mia and I had our hair cut afterwards – it was Mia’s first time at a proper hair salon and I needed to look somewhat presentable at my cousin’s wedding the following day. My parents watched the kids in the evening so Josh and I could catch a movie. We watched Man of Steel, a remake of the saga of Superman – how ironic indeed. The cramps started as we left the movie theater and hunted for a local popular taco food truck. I managed to eat one tiny taco and asked Josh to stop by the CVS to pick up milk of magnesium. I was desperate to poop. I drank three sips of the gross, chalky stuff and said no more because I was afraid I was going to vomit. I didn’t sleep at all that night, spending a lot of time on the toilet trying to get something out and the remainder tossing and turning in bed in pain. By 4 a.m. on the day of the wedding, I couldn’t take it anymore. I woke up my 70-year-old father and asked him to drive me to the hospital. I didn’t wake up Josh because I wanted to spare him whatever “this” was for a little longer so he could have a few more hours of sleep; I intuitively knew he would need all the sleep he could get to deal with whatever awaited us that day and in the days to come.

There was no one in the ER at Garfield Medical Center this time, which was fortunate because I couldn’t even sit up straight when the triage nurse assessed my condition and admitted me; I was in so much pain. I’ll never forget my incredible relief when the morphine hit my system; I could understand why people would rob and kill for narcotics. The ER attending told me that he’d seen what appeared to be an obstruction on my CT scan so he was going to admit me to the hospital. I remember thinking, well at least a physical problem could be identified. Even at that point, cancer didn’t enter my mind. Had I thought it might be cancer, I would not have gone to the ER at Garfield Medical Center, a hospital that serves a large, indigent and underinsured immigrant population, filled with poorly educated and dubiously trained doctors. The surgeon assigned to my case, an idiot whose English was so accented I struggled to understand him – you know it must be pretty bad for me not to be able to understand a Chinese person’s accented English – and whose speech pattern and movements reminded me of a drunk, reviewed my x-rays and told me he saw nothing and that I would just have to wait for the obstruction to pass on its own while on bowel rest. The gastroenterologist assigned to my case, Dr. Tran, the only competent doctor in that hell hole, didn’t agree with that approach as he was actually intent on discovering the nature of the obstruction. He ordered a CT scan with contrast for a better quality image for 9 that evening and planned to do a colonoscopy at 9 the next morning on July 7.

Josh wanted to skip the wedding and stay with me. I said no. I insisted that he go and take our daughters and that he represent me. Besides, my semi-private room was cramped, dark and depressing; even though I had the bed next to the window, the tint permanently on the window that looked out onto nothing cast a darkness over the room that made night feel nearly the same as day. I wanted Josh to be spared from that horrid place as much as possible. While everyone was at the wedding, I sent an email to some people at work to let them know that I had been hospitalized while on vacation and it didn’t look like I would be able to make the monthly internal meeting that I was in charge of on July 10, not to mention the corporate governance conference in Seattle I was supposed to fly to that same day. Josh and my sister came to see me after the CT scan, sneaking in long after visiting hours had ended in their fancy attire to tell me about the wedding, show me videos of the girls dancing and let me know everyone was very concerned. Then, Josh told me he loved me, to get some rest and he’d see me in the morning, before they took me in for the colonoscopy. That was how the last day of my innocent old life ended.

At 9 a.m. on July 7th, I was taken to a room where Dr. Tran waited to do my colonoscopy. Just as I fell into that twilight state reserved for most colonoscopies, I saw Dr. Tran’s fuzzy face and heard him say, “I saw a mass in your colon on the CT scans.” Then, I knew.

I woke from the anesthesia as I was being wheeled back into my room. Josh was waiting for me. The destroyed look on his face confirmed what I already knew. He was trying so hard to act calm and not cry but the devastation was obvious. Then, he said the words and showed me a copy of the colonoscopy report. They found a mass that is suspicious for cancer…75%-99% obstruction of your transverse colon. Of course, Dr. Tran had said that we wouldn’t know for certain until the biopsy results came back, but Josh and I knew that there was no need to wait for biopsy results, that words like “suspicious” are loaded in the medical world. We cried together in confusion, shock, horror and fear.

Suddenly, my father and sister were there. They said nothing but their faces reflected what I felt. My mother was at home taking care of the girls – oh my God, what would happen to my sweet, beautiful little girls? Then, my brother who had dropped everything upon hearing the news and driven the 45 minutes to Monterey Park was there at my bedside, hugging me and crying. I could see all the grays in his coarse straight hair as he laid his head on me. I had stopped crying by then as I held his hand – I couldn’t remember ever holding his hand before. When had he grown up into a man and father? When had I grown up into a woman and mother? How was it that we were dealing with matters of life and death already, my life and death to be precise? Here was the person who had taught me how to hold a baseball bat as he sought to transform me into the little brother he never had. And there was my sister who had always taken care of me, whether it was driving me to buy clothes as a teenager or navigating us through the streets of some foreign place in our many travels together. And there was my father, who had always shamelessly admitted to all that I was his youngest and most treasured child, the only person who could legitimately contend with Josh over who loved me best. And of course, there was Josh, my lover, my best friend, my soul mate, the father of my children. In that hospital room, with the exception of my mother and little girls, were the people who I loved most in the world. It was a surreal scene, something from my worst dream, except I’d never dreamed this nightmare of the people closest to me in this life crying over me like I was already dead. I wanted to pinch myself awake and find myself back in New York living the life I knew and loved, but the pain in my hard and distended abdomen reminded me constantly that this was all too real and that this was a living nightmare to which there was no foreseeable end.

[Continued in The Hand of God]

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11 Comments (+add yours?)

  1. Kathy
    Jul 07, 2014 @ 01:57:24

    I’ve been reading your blog regularly for some time now. This was such a beautifully written post. You write and tell your story so well, I’m amazed you aren’t an author (or maybe you are in some capacity?).

    I am just a stranger reading along, but please know that I am rooting for you. Your story has touched my life. I wanted to let you know.

    Sending love and strength…

    Reply

    • julielyyip
      Jul 07, 2014 @ 10:06:11

      Thank you, Kathy. Somehow, hearing sentiments like yours from people who don’t even know me are so incredibly moving and appreciated. It means so much to me that you a total stranger are with me on this journey.

      Reply

  2. May Steinhardt
    Jul 07, 2014 @ 07:57:04

    Julie – your writing is extrodinary! And once again, I have no words other than to say fuck you cancer! Hugs my friend from this fellow cancer warrior in Wisconsin ❤

    Reply

  3. Barbara Gettelman
    Jul 07, 2014 @ 15:49:44

    Another total stranger with you on your journey. Your writings have changed my life. Can’t begin to count the ways. Your courage, your humor, your strength in suffering, your acknowledging the pain and weakness that is impossible to conquer, your slow climb toward a life of possibility and joy again. It is sobering, empowering and inspiring. Julie, I want to meet you one day. Maybe NASPP next year.

    With love,

    Barbara

    Reply

  4. Joanne LaGrega
    Jul 07, 2014 @ 17:27:04

    Julie, you are amazing. I have been following also, although I have the good fortune of knowing you. I am a 35 year breast cancer survivor, something most people do not know about me. You are in my prayers, you rock girl.

    Love, Joanne

    Reply

  5. Chrissy Rice
    Jul 07, 2014 @ 20:17:39

    Julie, I so love your writing. I do think you have such a great talent of expressing your deep inner thoughts and feelings. You touch a very special place in my soul when I read your posts. Thank you so much for sharing all that you have and are still going through it is a big help to me personally, as well. So much of what you express is like a healing relief to me, just knowing that you dig out the lingering effects of cancer in my being and truly make me look back and forward at the same time. Facing my mortality too early in my life and the uncertainty of living out my life the way I had planned. I understand so deeply what you write about your life and how everything has changed since the nightmare of your cancer diagnosis.
    Chrissy Rice

    Reply

  6. Katie Vogler
    Jul 11, 2014 @ 11:53:50

    Julie, thank you for taking the time to share your account in so much detail. These stories are so important for those of us who are fighting along with you, but also for those out there who may be experiencing symptoms and wondering what they should do. – Katie

    Reply

  7. Sandy Dowling
    Jul 11, 2014 @ 15:29:54

    Julie –
    I love your writing also, I just wish it was not about this horrible disease cancer. I am also colorectal cancer stage IV. I read your your blog and it helps me relate and feel so not alone. Cancer is so taboo to some people, they act like they can catch it from me, like the flu. Sometimes I feel so isolated. Thank you for sharing your story. I will continue to follow you and I hope only good things to come.

    Sandy Dowling

    Reply

  8. The Astonishing FartMan
    Jul 17, 2014 @ 14:24:48

    Beautifully written.

    How I, too, remember those first days after I got my diagnosis four years ago: Stage IV Colon Cancer with Liver Mets! The doctor who broke the news to me cried. His mom had just died of cancer. Lying in the hospital bed while he stood above me, I held his hand and said something like, “I’m so very sorry, but don’t worry about me. I can handle this.” I absolutely expected to be dead soon, but wasn’t afraid at all–not then. I guess the adrenelin was kicking in or something. Mainly I was worried about quickly getting my affairs in order so that my wife would be okay after I was gone. So I started calling friends and family, and assigned them particular responsibilities (legal, financial, landscaping, you name it) for helpiing my wife after I died. Of course, they all had to agree to do what I asked. How can anyone turn down the request of a person who’s about to die of cancer! But I fooled them all. I’m still here!

    Speaking of “still being here”: At this very moment I’m sitting in MD Anderson hospital waiting to get my regularly-scheduled CT Scan. I’d been on three month scan intervals, but after my last clean scan, the doctor put me on six-month scan intervals. It has been sooooo nice not seeing a single doctor for six whole months! Wish me luck!

    On a rather unrelated subject, although the suck/good ratio of having cancer is about 3,000,000/1, I have to admit, having cancer has been liberating in certain ways. For example, I just sent an email to my supervisor explaining to him that some instructions he had given us were wrong with regard to a particular concept. Before I got cancer, I wouldn’t have had the guts to do that. Instead I would have just kept the thought to myself, or maybe hinted around about it a little, but never would have said anything so directly. He emailed me back saying, “You’re right. Thanks for pointing that out. Let’s do it your way.” Am I cool, or what?

    To be fully honest about it, I have to admit that it’s not so much that cancer has made me more bold personally. It’s also the simple fact that people I work with know about my cancer so they cut me a tremendous amount of slack. In other words, it’s not that I’m braver. It’s that I know I can get away with a lot of stuff nowadays that I couldn’t get away with before I got sick.

    Am I milking it? You betcha! But only for good purposes. (Well, mostly for the good, but also to get out of stupid meetings I don’t want to sit through.)

    Reply

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