Isabelle (Part 2)

Perhaps one of the most frequent questions I get pertaining to my cancerous condition, after “How are you?”, is “How are the girls doing?” As I’ve written before, Josh and I do not subscribe to the belief that our children are fragile flowers and that they will simply wilt under the weight of my incurable and likely terminal illness. We believe in honesty and that hardship, when confronted with love and support, can only engender strength and resilience. And so my children are very aware that I am sick, that I will likely die. Slowly, as they have grown older, they have understood more and more what “death” means, although of course I doubt they have a true understanding of what my death would mean to them emotionally; that understanding can only come when they experience first-hand the grief of losing their mother. And yet despite their knowledge of my illness, they are amazingly well-adjusted children who are full of joy and love (and well-behaved too, at least for other people if not necessarily for me and Josh all the time; I am told public behavior is what really matters). The school psychologist frequently observes them in the classroom and we chat from time to time; she praises me and Josh for how we have handled the situation and I draw so much reassurance from that praise.

As their mother, I see in so many moments how they are processing the unique reality of their mother being sick and her likely early death. Such moments are truly fascinating and fill me with such pride as I watch them cope with forthrightness, courage and strength. 

My so-smart almost six-year-old Mia silently intellectualizes and thereby tries to rationalize. She likes to watch documentaries about wild animals killing each other. She loves to sit on her daddy’s lap and watch shows about airplane crashes in which death is reenacted and then the investigators come in to solve the mystery of why the plane fell out of the sky. She watches forensic autopsy shows about gruesome murders and how science is used to find the murderers. Josh finds such morbid shows captivating and apparently so does his elder daughter, since she watches them with exceptional focus. Other than the wildlife shows, every time Mia and Josh turn such shows on, Belle protests, screaming, “I don’t wanna watch airplane crash [autopsy] shows!” and runs into another room, frequently dragging me with her. [For those concerned relatives worried about the wisdom of allowing Mia to watch such things, I’ve spoken to the school psychologist about its appropriateness. She says it is okay as long as Josh watches them with her. In addition to being a means to cope with my illness (probably for Josh too as well as Mia), they’re likely special to Mia in that they allow her and her father quality time. The school psychologist also cautioned against her “binge” watching them.]

It was on one such occasion while father and daughter were watching a show and Josh was explaining to her the meaning of “A.D.” as in the year 1532 A.D. and its association with the crucifixion of Jesus that Mia expressed her desire to go to church, that she wanted to learn more about Jesus and that she believed herself to be a Christian. Since we don’t talk to her much about religion (and indeed Mia had never been to church), I’m sure Mia has been having conversations about God and religion at school, likely with one of her classmates who goes to church. But Mia has been speaking of God since she was four, so it wasn’t all that surprising to me when she expressed this desire to learn more about Christianity. I remember a couple of occasions when we would walk by a church soon after I was diagnosed and she would ask me, “What is that building?” or, “Who made us, Mommy?”

And then there are the infrequent conversations between her and Belle as they lie in bed:

Belle: “God is dead.”

Mia: “No, he’s not. He’s everywhere. He made us.”

So, that is why we have started going to church and embracing the community it represents. And I go too even though I am not Christian because I want to encourage my family to avail themselves of whatever they can to help them through trying times. I trust that my children are intelligent and discerning and will determine for themselves at a later time when they have greater maturity and knowledge whether Christianity or some other religion or belief, if any, is appropriate for them.

Belle, however, does not seem so into the church thing. She likes Sunday school, now that it has restarted, but sitting through the services, however short and catered to children they may be, can be challenging for her.

This was the conversation we had as we were walking to church one day:

Belle (whining): “Mommy, why do we have to go to church every day?”

Me: “We don’t go to church every day. We go only on Sundays.”

Belle (defiantly): “Friday is my favorite day because on Fridays, I get to eat pizza and I don’t have to go to church!”

Mia also projects her fears and emotions, taking our beloved and long-time babysitter, Debra, and substituting her for me. One night a few months ago, as I was lying next to her in bed, she spoke of her much loved Strawberry Shortcake Blanket, “Debra gave Blanket to me when I turned one, for my birthday. One day, when I’m older, Debra won’t be here anymore, but I’m going to always keep Blanket to remember her by.” I was amazed that she could remember who had given her Blanket and even more so by the sophistication of her thoughts. More recently, Mia asked me, “Are we going to have a new nanny when Debra dies.” I told her that when Debra dies, she would be old enough not to have a nanny. “But, what if she dies, sooner?” Sigh. These are the questions with which I deal and I have no idea how to answer them correctly.

My sweet 4-year-old Isabelle does not intellectualize. Debra often says that Belle has been here before. I tend to agree. As I’ve written previously (here, here, and here), this child that grew in my womb as my tumor grew exhibits an uncanny precociousness, sensitivity and understanding of the situation and me that goes well beyond her years.

Debra was sitting with her in the lobby of Mia’s music school, waiting for us to finish a violin lesson upstairs. Belle looked up at the ceiling and instructed Debra as follows:

Belle: “Debra, let’s pretend that the ceiling is the sky and there are lots of stars. You make a wish on the stars.”

Debra: “Well then, I wish you would eat your dinners.”

Belle: “I don’t like that wish. Make another wish.” [The other people in the lobby who heard, laugh.]

Debra: “Okay. I wish you would clean up your toys when I ask you to.”

Belle: “I don’t like that wish either.”

I was very amused by this story when Debra recounted it on a recent Monday. On Tuesday morning, as Josh was getting ready for work, I retold the story to him (in private as the children were otherwise occupied in the other room). He laughed. And then he told me that on that past Sunday night, when they had gone up to the terrace – our building has terraces that offer wonderful views of the sunset and the City, to which Josh likes to take the girls (without me) – as it grew dark, Belle ordered them all to wish upon a star, as she herself made the first wish: “I wish Mommy weren’t sick anymore and that she would get all better.” Josh hadn’t wanted to tell me because he didn’t want to upset me.

Hearing this did make me a little sad. After Josh left for work, while I was sitting next to Isabelle and thinking about her wish, mourning the moments I would miss in her young life, she looked at me with that penetrating look of hers, as if she knew what I was thinking, and then she said, “Mommy, the other night when Daddy, Mia and I were on the terrace, I wished upon a star that you were not sick anymore and that you were all better.” I was speechless.

Even as Isabelle wishes for me to live, I know she is preparing for my death. I think preparation is a good thing, a very good thing for both of my children. I think it will ease the pain and the grief, but more importantly, it allows them to process that horrible scenario while I’m still here, so I can help them through it, so they can unleash their anger or whatever emotion at me or the world and then I can soothe them, so they can ask me questions, as they have been doing, so they know from me directly how much I love them and will always love them.

Isabelle once asked while sitting in the car with Daddy and in my absence, “Can I sit in Mommy’s seat after she dies?” And then one night at bedtime, she wanted to tell the stories, instead of me telling the stories. So she told two stories, with two completely contrary themes. The first story was about salvation (possibly mine) and the second story was about moving on:

“Once upon a time there was a dragon and a princess. The dragon ate the princess. The prince cut a hole in the dragon’s stomach, went inside and took the princess out. Then, they lived happily ever after.”

And then she told her second story: “Once upon a time there was a frog and a princess. The frog ate the princess. And then the prince found a new princess and they lived happily ever after. The end.”

I’ve written a number of times about Isabelle’s uncanny behavior. She continues to exhibit an ageless soul that astounds me time and time again. In the moments when I believe in a God, I feel the power of this child of mine, and I am convinced that she was brought to me to help me deal with my disease. Or perhaps more accurately, it is when I witness this child’s wisdom, her singular understanding of me, her magic, that I believe in a God, that indeed that God speaks to me through her.

When Mia hugs me with her long limbs, I feel her love; I feel her need for me to bolster her being and her need for me to assure her that I love her no less than I love her sister. I wish I could explain to her the incredible grace, beauty, intelligence and kindness that I already see in her despite her tender age, and I marvel with pride that I produced such a lovely, lovely being. Indeed, I love both of them without end and marvel constantly at how I could be a mother to these amazing girls. I feel a love for them I never knew possible.

But Belle’s hugs are different. When Isabelle hugs me with her more compact and stockier body, for she is all solid torso and meaty flesh while her willowy sister is all impossibly long legs and arms – how can a child who doesn’t eat weigh so much, I often wonder (and how can a child so lithe and thin eat so much) – I feel Isabelle’s love, but there is not the same neediness from her. Rather, I feel like the weight of her body holds me to this earth and this life when I want to leave it most, as if in her embrace she is silently telling me that I must live not for her but because there is more for my soul to do and learn in this life, that I have more to give to the world before I move on, that my presence in this life has and continues to serve a greater good than just taking care of her and her sister.

Many mothers speak of fighting because their children need them. I must admit that my children’s need for me is not a compelling motivation for me. Perhaps, that makes me a terrible mother. It is because I have such faith in their strength and resilience. They are after all my children, and as I’ve written before in Invincibility, if there’s one thing I am arrogant about, it is my inner sense of strength and resilience. I also have deep faith in the people who surround my children and know that even in my absence, my children would be loved beyond measure. Most of all, I know they will thrive whether I am here or not for in addition to their innate strength and their support system, I believe, even though I have had my failings, that I have given them a foundation of maternal love that will sustain them throughout their lives. Therefore, what keeps me going more than anything else is not their need for me to be present in their lives or the conceited belief that they cannot live without me, but rather Isabelle’s faith in me, all that I feel in her embrace, the sense that my soul is not done with this life, not quite yet.

So now with all of that said, you will understand what it meant to me for Isabelle to come into my darkness that lonely miserable night and bring me out, to extend her hand to lift me off the floor of my abyss.

I woke up the next morning, exhausted but clear eyed and resolute. I knew that I and my family had grown tired and bored of the narrative of self-pity I had constructed for myself over the past weeks. I knew that I had to do something to really pull myself out of my darkness. Isabelle had offered her hand but I had to do the remainder of the work.

I began to reengage the world, to reach out to some of the very same people who I felt days earlier could not possibly help me. I called L, my friend who has metastatic lung cancer and who also is under the ongoing care of my oncologist, and suggested we meet. She is a medical professional herself and so kind and smart. She told me that I didn’t look like I was dying (despite the rash and everything else), that she had seen people who were really sick and that I didn’t look like that, and from her, a medical professional, I believed. She reminded me that I am still alive and active and that I can indeed still live.

I wrote to J’s husband – J is my friend who died recently of colon cancer of whom I wrote in my last post – to express my condolences and to offer to talk if that would be helpful. Although J and I had spoken often of her husband and son, I had never had any contact with them. He responded promptly with a lovely email about how much he appreciated how I had helped J and invited me over to express his gratitude in person and to meet him and his son. I never felt like I was particularly helpful to J, that none of the things I said about living in the moment and other suggestions about dealing with cancer really penetrated her depressed stubbornness but her husband assured me it had, that with this blog and my help she finally got off the sofa she had been lying on for three months. I believed him, and that made me feel a lot better, like my suffering had served a purpose.

And then Chris’s mother sent me a short message on Facebook – Chris is the other friend who died of colon cancer recently of whom I also wrote in my previous post. Chris’s mother and I had never communicated. She simply told me that Chris had spoken of me to her and that he had been impressed by my courage; that was all. It felt like a message from Chris from wherever he is now, reminding me that I am strong and brave, even though I hadn’t felt that way in a long time.

Then, my best friend from high school, H, emailed me from out of the blue, telling me she’d just learned of my illness through the ethnic Chinese Southern California grapevine and that she was in New York and wanted to meet. I had tried to find H when I was first diagnosed because even though we’d lost touch, she’d been an important person in my life and I wanted her to know. Except for a brief encounter in 2000, we hadn’t really seen each other in 22 years. I was very nervous about seeing her again. While H was my friend, I also viewed her as my academic rival back then; no doubt it was one-sided since H always got the better grades and was in more AP classes. What can I say? I was your typical Asian American competitive nerd. But H pushed me to be better, to work harder, to learn more, and for that I will always be grateful to her. We did meet.  What I had forgotten was that we were best friends for a reason. We were born in the same village in Vietnam; our families knew each other; and we recognized in each other a similar cultural, intellectual and ambitious outlook, even as young adolescents. H and I have actually known each other since sixth grade, since we were ten years old. Josh asked her whether I had changed in the intervening thirty years. She told him no, that I was the same smart determined person I had always been. H believes, and I agree, that people don’t change at a fundamental level; of course, this excludes problematic behaviors that people spend years in therapy to change. Who we have been is who we will always be. I desperately needed to be reminded of who I have always been.

And then I went in for treatment and my nurse practitioner, N – Dr. A.C. was in Australia – casually mentioned my CEA had dropped. I hadn’t even known that my CEA had been tested the week before and I hadn’t bothered to check the blood test results online. “What are you talking about,” I asked, “My CEA went up the last time.” Indeed, a week after starting Erbitux, my CEA had risen once again to 33 from 27, at which point I had mildly freaked out, but N had told me she’d spoken to Dr. A.C. in Australia and his message to me was to chill out and give the Erbitux a chance to work. I had been less than reassured but what choice did I have but to say fine. But it seems a week later, my CEA did drop to 24 from 33. It was tested again three weeks later (which means 2 Mondays ago) and it again had dropped, this time to 10. I was so ecstatic when I saw the result, but I am reluctant to believe that my CEA will actually remain there or that it will continue to drop. Cancer cells are smart; they will mutate to develop resistance to any known drug; but at least the Erbitux is giving me a little more time and that’s what I realistically want at this point.  It makes the misery of the side effects more tolerable.

Then, on the Thursday after that night on the floor, I was at Target when I got an unexpected call from a number that I recognized as a Mount Sinai Hospital number. It was Dr. A., who I had met in February to discuss the fruit fly study. I wrote about it in this post. As you might recall, the fruit fly study involves the extraction and implantation of a patient’s tumor cells in a fruit fly after extensive genetic sequencing by a supercomputer. The goal is to construct a fruit fly model that contains that patient’s unique tumor profile with as many genetic mutations as possible. Cancer is of course all about genetic mutations but each person’s cancer is driven by a combination of unique mutations. Once the cancer-ridden fruit fly model is constructed, the fruit fly is reproduced and then assaulted with all oncologic drugs regardless of the type of cancer the patient has, as well as some other non-oncologic drugs to see what drug or combination of drugs will kill the cancer. The cocktail is then offered to the patient. This type of study stands at the heart of personalized medicine, the idea that everyone’s cancer is unique and should therefore be treated thusly. You can read more about the fruit fly study and all the fascinating and brilliant scientists and doctors involved in this compelling Esquire article written by Mark Warren and Tom Junod about Stephanie Lee, the “Patient Zero” of this study. As I wrote in my previous post about this study, there are also companies, like Champion Oncology, that implant tumors in mice, but the scope of drug testing on mice is much smaller because one simply can’t achieve the same scale as one can achieve with fruit flies. There are also companies, like the Weisenthal Cancer Group, that conduct this kind of testing in vitro, which entails assaulting live cancer cells with drugs in the petri dish. In all three cases, as of my last meeting with Dr. A., fresh tumor tissue is required. My tumors are too small and too deeply embedded in my lungs to be safely extracted through biopsy or surgery. Plus, Mount Sinai seemed to be having some administrative issues with moving forward with the study and it seemed that the study had received unwarranted and premature press coverage. So, I concluded that none of these studies were an option for met, at least not until a tumor grew large enough for extraction.

Well, on that Thursday night, Dr. A. called me to inform me that they had figured out a way to use archived tissue and asked me if I would like to participate in the study. I almost started crying right there in the middle of Target. It seemed that after such a long dark period and after days of trying to will myself out of that darkness, the Universe had rewarded me for my efforts by dropping this opportunity in my lap. We discussed where to obtain the archived tissue. I reminded her that in fact I already had tissue at Mount Sinai from my HIPEC surgery when Dr. D.L. removed three pea-sized and smaller tumors. Dr. A. was uncertain as to whether that would be sufficient to perform the genetic analyses and for implantation but she would ask the pathologist to check. And if not, they would use my voluminous tumor tissue stored at UCLA, where I had my first surgery to remove the primary tumor. Obviously, I told Dr. A., using the newer tumor would be preferable as it would be likely to yield more accurate results since the original tumor had not been subjected to all the treatments and would not likely show the same set of mutations as tumor cells that had been barraged by reatment. I then thanked Dr. A. profusely for remembering me for I am sure there are many who would like to be included in this study with limited spots. She said she couldn’t forget me because I had been one of the most informed patients she had encountered. It helps I suppose to be a nerd sometimes.

I signed the consent to enter the study last week. The pathologist is uncertain whether my Mount Sinai tissue is sufficient but he thought it reasonable to try using that tissue first and if that doesn’t work they will use the UCLA tissue. While it is very exciting to be on the cutting edge of science, I understand very well how much of a long shot this is. I am one of the first, if not the first, to be formally enrolled in the study, at least for the colorectal (CRC) arm. There have been a couple patients, like Stephanie Lee, but they seemed more like the equivalent of preclinical trial participants. Now, the study is really moving forward and I know of three other CRC patients who are enrolling. Dr. A. told me they will enroll four patients a month (I assume in the CRC arm), although I don’t know what the cap is. I emailed Dr. A.C. in Australia right after Dr. A called, telling him the news. I could hear him in my head telling me that it’s difficult to reproduce results from animals in humans (much less from a test tube). I understand this. I also understand that the cancer will likely have mutated greatly by the time a cocktail is available since the entire process could take up to 13 months. Success depends on a lot of assumptions. First, they must be able to actually obtain enough quality genetic material to construct a Julie fruit fly model. Then, they must be able to find a drug or drug combination that kills the cancer in the flies. And finally, those results must be replicated on a living cancer cell in my body. There are many assumptions and many ifs. I alluded to all this in my email to Dr. A.C. He responded an hour later, unequivocally stating that this is a good thing. Plus, there is no downside to participating since participation does not prevent me from undergoing other treatments and I am not obligated to take any cocktail they come up with. The costs are covered entirely by the study. And it’s so nice that this is all happening in my backyard.

So things are on an upswing, and it all started with my Isabelle. I will enjoy the good times for as long as they last.

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10 Comments (+add yours?)

  1. Barbara Gettelman
    Sep 25, 2015 @ 18:50:54

    I pray for you. I don’t believe but I might have to start. You and Francis are inspiring, in that order. Julie, you deserve this good news. You are a rare, rare pattern. I wish I could express how you have changed my life. Truly.

    Reply

  2. Cristina
    Sep 25, 2015 @ 18:58:34

    Good luck with the study. I wish you the best!
    When my daughter was 4 she proclaimed she was Jewish (her dad is Moslem and I am agnostic.)

    Reply

  3. Kris Bruneau
    Sep 26, 2015 @ 08:27:59

    I am so excited for you about the study. It seems like a bigger glimmer of hope than you’ve had in a long time. Of course, your CEA results are also great news!

    But what really strikes me in this post is the incredible wisdom and grace with which you are approaching your situation with your girls. Part of my job is helping families through cancer (though usually when it is a child who has cancer), and from my perspective you are doing such a great job. Kids are much stronger than most people think, and not understanding a traumatic event makes it even more traumatic for them. So I applaud your honesty, and admire it, because though I believe it is best for kids, I can only imagine how hard it must be as a parent to discuss these things with them. But I strongly agree with you that what you are able to do now to prepare Mia and Belle will help them, and honestly, I think it will help you in the long run, too. Knowing how Mia and Belle are coping with your illness and the idea of your death, you are better equipped to weigh the costs and benefits of your treatment. Plus, I imagine that if your health declines, it will be a huge comfort to know that your kids are prepared and strong and have all the support in place to help them through their grief. And you are doing what is right for the unique personalities of your girls and seeking out the help of professionals when you are uncertain. It is beautiful what you are doing. I sincerely hope that a cure is found for your cancer and you can look back in 20 years and reminisce about how strong and brave you all were at this time, but if that is not the case, you are showing a very brave kind of love, and your girls will be imbued with that, even if they don’t remember every word or little action. You are amazing!

    Reply

  4. tyler
    Sep 27, 2015 @ 10:16:09

    Julie! How wonderful to think that Julie fruit flies are on the way. I am pleased to hear that you are on an upswing. I hope that you can continue to stay on your new platform. I love your outlook and the power of Belle. It is fabulous that the fruit flies are in your own backyard. Your super nerd powers are proving what those of us married to tax lawyers know, nerds always finish first in the end.

    Reply

  5. Laura
    Sep 30, 2015 @ 23:09:11

    Julie, i hope to hear good news about the study you are now part of! Your daughters are amazing and so are you! I am happy you are emotionally happy now.
    Love
    Laura (i came on your blog from the colon club)

    Reply

  6. Laura
    Sep 30, 2015 @ 23:11:16

    I meant to say emotionally better*

    Reply

  7. The Astonishing FMan
    Oct 04, 2015 @ 23:29:00

    Your post has inspired so many thoughts that in my mind (duh, where else?) I’m now working out a longer comment that will have something to do with these apparently disparate subjects:

    1. The intuitive mind versus the analytical mind and living “in the moment” versus living with the “me” that watches and comments about the other me almost every waking moment. See, .e.g., the “duh, where else” comment above. (Is it possible or even good to figure out a way to get the two “me’s” blended together or at least get them operating in sync?)

    2. Advice for children that we want them to follow after we’re dead. (After long contemplation, the best I could come up with is, “Clean your room!”)

    3. True gifts, unbidden, unsought, freely given, with no thought of either creating or fulfilling an obligation. (Your writing, and especially your post “Isabelle,” is a true gift to your girls, a gift that will endlessly both challenge them and sustain them. It will not shape them, but reading it will help them in your absence to shape themselves. It will be like a sculptor’s tool they can use to form their own thoughts, like a magical cloth they can use to polish their own souls to a beautiful luminosity.)

    Unless and until I figure out how to work out that longer comment mentioned above, in the meantime I want to say:

    1. You should not let Belle spend so much time reading Nietzsche. Instead, I recommend video games. (Just kidding!)

    2, Great news about:

    a. CEA.
    b. Fruit flies.

    No one should suppose my excessive use of parentheses, colons, semi-colons, and numbered and lettered paragraphs shows my mind is operating here in a strictly analytical mode. The truth is, you might have noticed that for me it’s most fun to be silly and serious at the same time. That’s my personality and my particular way of whistling nervously past the colon cancer graveyard. You, Julie, are of a more naturally serious bent. And although naturally serious people with your talent always make me painfully jealous (because they make me wonder whether my reliance upon black humor is really just a pale substitute for genuine courage), I still can’t help loving and admiring everything you write. Trailing off, I’m recollecting the end of Plato’s Symposium, wherein the surviving interlocutors dispute about whether it’s possible for comedy to be great art, or some such. (This last remark is, of course, a mild misrepresentation of what actually happens at the end of The Symposium.)

    Reply

  8. Lisa
    Oct 05, 2015 @ 04:41:36

    Julie this is a beautiful tribute to Isabelle. Please write one for Mia so that they both see how they inspire you. I’m sorry to make this point here but I’ve been wanting to do so for days. Hope you know where it is coming from. x

    Reply

  9. Poorab
    Oct 06, 2015 @ 01:12:52

    Reading your last 2 posts makes me feel that a shift has ocurred.
    That you are now living a life of intention.
    Very few people do.
    You inspire me to and remind me of goals not yet achieved and a simpler life forgotten.
    Thank you

    Reply

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