Living

A week after my last post, I had a chest CT and an abdominal and pelvic MRI. It had been six weeks from my PET scan in early January, which as you may recall, was “mixed” in that there was some growth, some stability and some regressions in the various tumors in my lungs. My oncologist and I had agreed that notwithstanding the growth we would continue on the same treatment of weekly Erbitux infusion and 5-FU push for the time being but that we would rescan in six weeks as opposed to the more conventional three months. The February scans showed essentially stability as compared to the January PET, but what was more alarming to me was that it showed “significant” growth from the October CT and MRI.

The different types of scanning technology offer different pros and cons, which I don’t pretend to fully understand. I generally get PETs once every six to nine months because they can detect disease in the bones as well as metabolic cancer activity in non-solid areas (e.g., the peritoneum) and cover a more expansive area from neck to mid-thigh. While there is a CT scan connected with a PET, the image quality is inferior to an actual CT and MRI.  All this is by way of explaining that comparing a CT/MRI to a prior CT/MRI is more accurate than comparing a PET to a CT/MRI. Therefore, the change from October to February was more relevant (and disturbing) to me. February’s scans showed a couple new tumors and growth of about one to three millimeters in a few other. The MRI also showed an enlarged lymph node in my retro-peritoneum that could be cancerous or benign inflammation – radiologists can’t seem to agree on what it is. As I had suspected, the Erbitux and 5-FU are starting to fail, if not already completely failing. My oncologist and I agreed, however, that we would hold off on changing treatment until I returned from my upcoming vacation, after which I will rescan and we will decide on the next treatment. The last thing I want to deal with on my vacation is unforeseen side effects or complications.

I came home from that appointment, dejected and upset (although not as upset as I have been in the past – you get used to getting bad news after a while). I was lying on the couch when I asked Isabelle to come over and give me a hug. This is the conversation we had:

Me: “Isabelle, Mama is getting sicker.”

[Silence for a few seconds as she looks at me contemplatively]

Belle: “Mommy, how old are you?”

Me: “I’m 40.”

Belle [with no hesitation]: “That’s old.”

Me: “No, not really. There are lots of people who live until they’re 80 or 90.”

[She looks away from me, staring at the TV for a good long time and then she turns towards me again and looks me in the eye and says]

Belle: “Mommy, you’re not gone yet.”

I gave Isabelle a big hug then, marveling once again at this child who in other contexts acts like any other four year old, but when I need her emotionally, she becomes a sage and speaks like she has lived before, as if in some part of her bottomless soul she remembers the lessons from a previous life.

While I spent some time consulting with an oncologist at Memorial Sloan Kettering to get a second opinion and spoke to various research nurses at the National Institutes of Health regarding clinical trials (which consistent with my expectations yielded nothing particularly new nor useful), since the last set of scans, I’ve largely focused on heeding my child’s advice which was basically to live and not die before I’m dead, To me, dealing with my cancer crap is all about trying to find a way to live longer. It is not living. In some ways, it’s actually a waste of my precious and limited time and interferes with living. I try to do as little of it as possible.

Living is actually quite all-consuming when you live with zest and joy and commitment. It’s made it difficult for me to find the time to write even, which for me is also a quintessential part of living.

The day after I received my scan results, I joined the construction crew next door in demolishing some walls. That was so much fun and a great way to release some pent up anger. Here are some videos of me taking on a wall for those of you who didn’t see them on Facebook.

I’ve spent my days dealing with the nearly daily crises and issues that come with renovations. I had no idea… I won’t bore everyone with all the details but I will share one illustrative story.

The new wood flooring has been particularly aggravating. First, the flooring I had chosen months ago was out of stock with no clarity as to when it would be ready. So I went to choose new flooring, sticking to the same line of products, which is advertised by the manufacturer as “scratch resistant” and “dent resistant”, which as you can imagine is very important in a household with children who constantly drop things on the floor. When 19 boxes of it was delivered, my contractor, Andrew, knocked on my door with a plank in his hand and asked me, “Are you sure this is what you want?”, which translated to “I don’t like this wood.” The wood was indeed not what I expected based on what I had seen in the showroom. It was flimsy and easily scratched and dented. It was so thin that Andrew said he wouldn’t be able to work with it to hide the scratches. I called my sister then and demanded that she come over during her lunch hour to help me deal with the situation; she’s an architect and had come with me on all my trips to the flooring store. Being the great sister she is, she came. Together, she, I, Andrew and my nanny, Debra, stood around the 19 boxes, amidst walls that had been stripped down to their metal studs and the bare concrete floors, staring silently at the plank of wood Andrew had extracted from one of the boxes.

We all hated it.

We tested the wood by applying minimal pressure and it dented and scratched. Obviously, all wood, whether solid or engineered will scratch and dent but had I known that the advertising claims were completely false, I would have chosen something else.

I called the retailer and I yelled and yelled and yelled, first at the sales guy, then at the owner and then at the manufacturer’s regional director. In the background, I could vaguely hear my sister talking to my brother in Los Angeles (who recently went through his own renovation and has floors that look good even with a kid running around). He could hear me yelling and told my sister to advise me not to yell. My sister’s response: “I think she likes yelling so let her yell.” The combative lawyer in me came out and what a good time I had yelling. Even I though ran out of things to say and I could feel my blood pressure rising so I thrust the phone at Andrew who was of course calm and rational.

The problem with an exchange was a daunting 25% restocking fee. The retailer’s owner said he would try to negotiate that down with the warehouse and invited us to come back and pick another product. After Andrew got off the phone, he then proceeded to nicely lecture me about the advantages of using a designer, even though he understood I was trying to cut costs by not having her work on this part of the project and that I should be sitting back and relaxing and that it was his, the architect and the designer’s job to stress for me. (The restocking fee I would end up paying would have equaled the designer’s fee for the floors. Lesson learned!). Andrew then offered to go with me to the flooring store. So he, I and my sister marched downstairs and into his van and we drove to the flooring store, where there was some more back and forth, but we ended up with flooring that everyone is now happy with, even if I had to pay a freaking 20% restocking fee – given the time constraints, I had little bargaining power.

Have I mentioned how much I love my contractor? He’s looking out for me and making sure I don’t make some bad decisions. In fact, I love his entire team. I spend time chit chatting with them, learning about their diverse backgrounds, their families, their favorite foods and other stuff that most wouldn’t care to know about from men working for a brief time on their homes. But I’m a nosy person and I enjoy getting to know people from all walks of life. It makes me feel connected to the rest of humanity, that I am part of the tangled web that is the human race, and in so doing I feel more alive.

Debra on the day after treatment asked me a couple weeks ago, “Did you get the same treatment yesterday?”

I replied, “Yes. Why?”

“You seem unusually energized for the day after treatment,” she remarked.

I laughed and told her, “I spent the morning yelling at [insert any number of people involved in the renovations], which gives me a lot of energy.”

I suppose when you are not in physical pain (which I am thankfully not for now), you can commit yourself to living which gives you an enormous amount of energy.

Around the same time of my February scans, Josh and I decided to go to Italy with the girls during Spring Break. We were hesitant to spend the money because it feels like we are hemorrhaging and someone needs to staunch the flow of funds before we pass out. But worry about money in our case is short-sighted, I realized. I told Josh as much and that we should go while I’m still feeling relatively healthy. Josh and I have always wanted to go to Italy together and to bring the girls too would be a marvelous gift to them. They are certainly old enough to navigate   ancient ruins and remember eating gelato while staring at the Mediterranean. Josh agreed.

As if in a sign from the universe affirming our decision, the morning after I said all this to Josh, I met a parent at the girls’ school during drop-off who is from Italy and advised me where to go. I had planned on going south, to the Amafi Coast, but he wasn’t so keen on the idea, telling me that the Amafi Coast is too small for a 11-day vacation, that I should instead venture to Sicily, which is more rustic and remote, but also less crowded and filled with ruins that rival any found on the mainland. So Sicily is where we are bound this Tuesday.

Also around the time of the February scans is when I moved concretely towards getting a dog. I had been toying with the idea for quite some time. Once we have our larger apartment, we will have plenty of room for a smaller sized dog. I also felt a dog would be invaluable emotional support for Josh and the girls when I die. Josh grew up with dogs and loves them and of course the girls want a dog, although Isabelle seems less enthused since she’s concerned about the dog “messing up her stuff.” Isabelle though is one of those people who deals with what’s in front of her; she will adore the dog when he is here.

As for me, I did not grow up with a dog and have no idea how to take care of a dog. I hear there are studies that say dogs relieve stress and are good for the sick. I am open to loving the dog. In fact, I think I probably will love the dog and am quite excited (although I am less than excited about it peeing and pooping all over my precious new flooring). But I grew up in a family that isn’t very fond of animals. In Vietnam we “had” a dog, if you could call it that. It was basically a stray that would come to our house to eat because we would give it scraps of food. We called him “Ling Ling”. “Ling” in Chinese means zero; his tail would curl up in a near complete circle, almost like a zero. When we fled the country, we heard rumors that the Communist North Vietnamese captured Ling Ling and ate him. I remember when we had resettled in this country, my 2nd Uncle once tried to adopt a turtle and a mangy puppy he’d found in a cardboard box in a parking lot. Even as we curious kids crowded around the little turtle, I could hear my grandmother declaring that turtles are bad luck and commanding my uncle to get rid of it. The puppy my grandmother pronounced as dirty and also ordered its banishment. Eventually, 2nd Uncle got a bird that lived in a cage for a while – my cousins named him Mickey. Somehow, he escaped the cage and killed himself when he flew into a mirror. Then there was the time my 10-year-old sister got bitten by the dog around the corner from my great-grandmother’s house.  It died the next day after it choked itself in trying to escape from its leash.  Maybe my sister put a curse on the thing, or more likely my grandmother.  When we kids, meaning my siblings, cousins and I, were much older, Cousin N and her boyfriend now husband adopted a little dog named Luna who they brought with them to a family vacation in Lake Tahoe. By then, my grandmother had passed away and so she wasn’t there to complain about the dog’s filth, but my grandfather teased the dog mercilessly and the rest of us stayed away from the thing like it was some alien that might give us a deadly virus.  Cousin N and boyfriend/husband got rid of the dog soon after.

When my sister and I lived in Chelsea (a trendy district in Manhattan) before I got married, we had a mice problem for a few months. No doubt living above an Italian restaurant was the cause (although mice and rats are a pervasive problem in New York City). My parents and brother came to visit during which they slept in the living room of our 900-square foot rented apartment. My mother was well aware of the mouse problem and it stressed her out. She worried about them getting into the food she cooked and the pastries my father would buy from Chinatown. My sister and I were terrified of the mice, laying traps and fleeing to our rooms when we heard them scurrying about in the kitchen. Not my mother though. One night as she lay on the couch in the dark, not sleeping, she heard a rustling and saw a tail poking out of the paper bag sitting on the side table; it was feasting on the egg tart inside. My mother grabbed the bag, closing off the opening and yelled at my father to wake up. “Bah! Bah!”, she yelled, which is “Daddy” in Vietnamese. Startled awake and falling off the recliner in which he’d been sleeping, it took him a few seconds to grab his rubber slipper. My father ordered my mother to take the bag to the kitchen counter where he proceeded to whack away at the bag with his slipper. My brother, awake by then, chimed in with his suggestion to stick the bag in the microwave. I also awake by then standing in an apartment bathed in light at 2 in the morning, objected (along with my mother) and ordered him to just go downstairs and throw the bag into a trash can on the street, preferably far away from my apartment. Others would have just released the poor mouse into the streets, not murder it brutally. Oh no, not my family.

No, I do not come from an animal-loving family. Nonetheless, I am willing to get a dog because I think it will be good for Josh and the girls. And who knows. Maybe the dog will win me over. After consulting with my dog-loving friends and attending the Westminster Dog Show (thanks again L for the virtually front row seats!), I decided on a Coton de Tulear. But after a breeder told me that breed tends to get very emotionally attached and in one instance one of her placed dogs tried to bite the hand of the coroner when he came to retrieve the body of its deceased owner, I nixed that breed and continued my research until I decided on a bichon. Our puppy was born several weeks ago in Atlanta and will be ready to come to us in May. I’m trying to find a boarding program right now where the puppy can stay for a few weeks while a trainer works intensely with him. The goal, among other things, is to minimize the peeing and pooping on my new flooring, you know the one I got after my heated yelling episode.

Mia continues to do well with violin, although you probably couldn’t tell with the battle royal that is almost every violin practice.

“Don’t talk while I’m playing!” she tells me in her petulant voice.

“I’m trying to help you,” I respond, equally petulant.

“Stop telling me what to do!” she screams.

Then Josh chimes in in his sternest, most frightening voice, “Don’t talk to your mother like that!”

Mia then puts down her violin, runs to her room,  slams the door in tears, flings herself on her bed and throws the covers over her head. Josh and I stay where we are, completely unmoved by the dramatics. Then my sister, who is sometimes present for her practices, remarks, “I feel like I’m watching a sitcom.”

Despite the battles, the violin teacher says Mia will have a seat in the youth orchestra in October if she wishes to join. And beyond that, she said Mia will likely be first chair. The orchestra consists of mostly nine and ten year olds, one eight year old and maybe another seven year old. Mia will turn seven at the end of October. My first thought upon hearing all this, “The orchestra must not be very good.” My skeptical Chinese Tiger Mom self comes out from time to time. I can’t help it.

In all seriousness, Mia’s violin lessons is one of the big highlights of my week. I’m learning music through her. And I love it.

And finally, the last bit of news. In 2008, I took a nearly year-long leave from my job to work on a memoir. A memoir is different from an autobiography. It is much smaller in scale in that it only seeks to recount some of the writer’s memories and is not a detailed account of the writer’s life. I never finished the manuscript. Over 200 pages sit on a shelf and haven’t been touched for eight years. Since I started this blog, many, from readers of this blog to professional writers, have encouraged me to write a book, to complete the work I started. But I couldn’t think about how to bring together what I had written with all that has happened to me since my cancer diagnosis. Plus, when I read the sublime writing of people like Paul Kalanithi, a neurosurgeon who died young of lung cancer whose wife just orchestrated the posthumous publication of his memoir and now best seller, Breath Into Air, I fear my writing is completely inadequate. And then one day recently, as I was waiting for the train to go home after treatment, the first line of this would-be book came to me. With the encouragement of Josh, my closest friends and family and the executive editor of a prestigious national magazine who has become a friend and the first line of my memoir, I feel I am finally ready to embark on this book. I may never finish it. I may die before it is even close to completion, but I feel I owe it to myself and to my children to attempt to write this memoir at last, even if my writing pales in comparison to Paul Kalanithi’s and others’. I questioned whether I should share this decision so publicly because I am afraid of failure, but I also recognize that by disclosing my decision I have a way to hold myself accountable to you, which is a great incentive for me to actually do this.

There’s more I wanted to write but this post is long enough so I will save all the rest for another time. I will just end this post about living with this observation. Even as I enter the final phase of my life – because I do believe I am in the final phase of my life, however long that may be — I realize that I continue to learn, that learning is an integral part of living. I’m learning about being a writer. I’m learning about music through Mia. I’m learning about how to care for a puppy. I’m learning about ancient Greece and Italy. I’m learning how to be a construction manager. May we all continue to learn as we live with passion, commitment and joy until our last breath and beyond.

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11 Comments (+add yours?)

  1. Cirincione, Norma F.
    Mar 20, 2016 @ 13:36:44

    Julie, I know you and Josh and the girls will have a wonderful time in Sicily. There is so much to do, see, eat and drink! With affection, Norma

    Norma F. Cirincione | Director of Alumni Relations and Associate Life Cleary Gottlieb Steen & Hamilton LLP Assistant: rminott@cgsh.com One Liberty Plaza, New York NY 10006 t: +1 212 225 3150 | f: +1 212 225 3848 | m: +1 646 894 3019 http://www.clearygottlieb.com | ncirincione@cgsh.com

    Reply

  2. Janie Davis
    Mar 20, 2016 @ 15:26:30

    As always, Julie, beautifully said, with heart, honesty and frankness.
    I admire you beyond words!
    Safe travels, have a wonderful time in Italy!

    Reply

  3. Chrissy Rice
    Mar 20, 2016 @ 15:40:39

    Julie you continue to touch my heart with your writing. When I read your posts it’s like I am transported into whatever the situation and experiencing it right there in time with you.
    Hopefull for everything good to be for your family as you adventure into the world living life as it is on life’s terms and conditions.

    Reply

  4. Kathy
    Mar 21, 2016 @ 00:57:46

    I really enjoyed this post. You’re an amazing story teller. You make me laugh and cry, and feel so many things. Sorry that the flooring didn’t work out at first, but on the bright side, it’s nice to get the blood pumping and have a good yell. Makes you feel alive. 🙂 I hope you and your family have an amazing time in Italy. P.S. Paul Kalanithi’s writing is beautiful, but so is yours. He reminded me of you. You’re right up there and I’m sure your book will be so great.

    Reply

  5. Joan B
    Mar 21, 2016 @ 02:18:35

    I, too, enjoy your writing so much. You have a lot going on — the renovation brings back so many memories of going through similar issues. Enjoy Sicily.

    Reply

  6. Michelle
    Mar 21, 2016 @ 10:14:10

    Beautiful Julie….you go go go girl! Love your positive enthusiasm today. I know the ups and downs and dark days of which you speak! I’m waiting for CT scan Apr 6 to see if Folfiri and Avastin are working, and as a result, if I remain a HIPEC treatment candidate. I certainly feel your vibe today..thanks for sharing! 😃

    Reply

  7. Kristi
    Mar 22, 2016 @ 15:25:08

    Julie, I love your writing and it makes me laugh so much. I think my German upbringing is similar to your Chinese upbringing – no fuss no mess. I want to encourage you to finish your book. Your voice is your voice and no one else has it, so comparing yourself to another writer (haven’t read it) does a disservice to you because you’re not them. Enjoy your vacation. You inspire me and I’ll be waiting to read anything you write.

    Reply

  8. Laura
    Mar 24, 2016 @ 22:14:13

    I would definitely read your memoir! Please do write as much as you can. Your writing is wonderful and it woule be amazing for your girls. If only i could do the same.
    ~~Fellow cancer patient.

    Reply

  9. Won
    Mar 31, 2016 @ 15:28:20

    Thank you for taking the Ime to keep up this blog.

    Reply

  10. Lari
    Apr 18, 2016 @ 16:03:54

    “Living is actually quite all-consuming when you live with zest and joy and commitment”.
    I love this.

    Reply

  11. Alyson Nelson
    Oct 16, 2016 @ 07:12:50

    Hi Julie,

    We met a few weeks ago at a dear friend’s 60th birthday…You mentioned your blog and I’ve been reading it ever since that Saturday afternoon.

    Thank you for writing.

    Alyson

    Reply

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