Solitude

I must apologize to all the family and friends who have left me voicemail and text messages and sent me emails since the disclosure of my most recent not-so-good news, to which I have not responded. I will explain in this post why I’ve been nonresponsive. As usual, I am being brutally honest, as part of my commitment in maintaining this blog, to give voice to all those I know who feel as I do, and to depict the dark side of cancer and debunk the overly sweet, pink-ribbon-like façade of positivity and fanciful hope and rah-rah-rah cheerleading asinine nonsense spewed by cancer patients and others that I absolutely loathe. I believe, as I have always believed, that in honesty – a brutal yet kind and thoughtful honesty – we ultimately find not vulnerability, shame and disgrace, but liberation, healing and wholeness. I hope my family and friends do not take offense at that honesty.

It’s been a somewhat difficult last couple weeks since I learned of my most recent scan results. Because bad news seems to come in multiples, a few days later, I learned that my ever so historically reliable tumor marker (CEA) had risen yet again another seven points to 29, the largest single increase in a three week period yet. For me, clicking on that link that will reveal the latest CEA results is more stressful than hearing my scan results, probably because my CEA has always told me what to expect in the scans. For those of you who don’t know what it’s like to find out what your CEA is when you have metastatic colon cancer and the result is not good, it’s like having my heart collapse into my stomach; the walls close in and I feel a primal panic and desperation I imagine an animal must feel as it realizes it’s about to be consumed by a predator. I feel the finish line to my life approaching ever faster, and all at once I think of all that I will miss in my children’s lives and then all that I must do for them and my husband before my race is over, and then an intense rage at the gods for the injustices of life, and then a fierce jealousy and hate for those who do not have to live with this fucking disease, for those who get to live their carefree existences, who get to have more children and plan for their retirement and obsess about what from my vantage point seem like the most trivial problems, and even for those who do live with this fucking disease but who are for some baffling reason cured or who have attained remission for any period of time (something I’ve never really had). The fear, sadness, anger and bitterness hit me in mighty wave after wave, knocking me down so that my head and heart are pounding and then leaving me sobbing, curled up in a fetal position that is supposed to protect me from the emotional onslaught, but nothing can protect me; nothing can blunt the pain; the only thing to be done is to feel it, bear it.

Curled up in a fetal position on my bed was how my children found me after I had clicked on the CEA link. Belle asked me why I was crying. “Mommy is just really sad,” I told her. My sweet and uniquely perceptive girl then gave me a hug and declared, “Don’t worry, Mommy. I’m still going to love you when I grow up.” You see, I do fear that in my absence, my children’s memories of me will fade and they will love me less and less over time. Her words made me weep with a renewed vigor. Josh came home shortly thereafter. I told him about the CEA results and cried into his neck. He acted so calm and strong for me even though I knew he was upset. Even so, sometimes I think the intensity and ferocity of my emotions are too much for him, especially since he has to come to terms with his own. He urged me to call my sister or my best friend, anyone. The only person I wanted to talk to was my therapist but she is away until September. Usually, as expressive as I am in writing, I have the same compunction to verbally unload my heartaches to those closest to me in life (besides Josh), because I know that for me the process of verbalization is healing. But not now. I didn’t and still don’t even want to talk to people who have my disease, at least not anyone who is in a better position than I am, and I imagine anyone who is in a worse position doesn’t want to talk to me. My self-imposed reclusiveness and isolationism is partly because of the jealousy and the hate. It’s also partly because I can’t imagine that anyone who is ensconced in his or her merry little life, despite claims to the contrary, would want to be brought down by my depressing cancer. No one wants to talk or think about illness and death. Nor can I imagine anyone saying anything to me that would be remotely helpful or comforting. I don’t want to hear about the promise of immunotherapy. I don’t want words of sympathy. I don’t want sage words of advice about how to live the remainder of my life. I don’t want to talk about it. I don’t want to answer any questions. I don’t want to have to be forced to explain anything to anyone. Whatever explanations I give and whatever information I divulge must be on my terms at my initiation, not because someone asked or because I was forced into some social interaction. Perhaps a growing reclusiveness and isolation, at least emotionally if not physically, is what happens as you get closer to death, as you understand more powerfully than ever before that this journey to the end is one that must be made absolutely alone. It feels as if whatever comfort there is will be found from within, rather than without, from private conversations with my innermost self and, when I believe, the gods.

So all I have left is my writing. My writing is part of those conversations. In truth, this blog entry, more than most of the others, is for myself, a much needed release, my meditation, my contemplation. It doesn’t matter if no one reads it. It’s for me.

I heard back from the surgeon in Germany about the laser surgery. I have too many mets in my lungs, 40 in each one and too many are centrally located. I am inoperable. This laser surgery is reputedly supposed to be able to resect up to 100 mets in each lung. It was sickening to hear that I’m not even a candidate for this kind of surgery, more sickening than hearing about yet another CEA rise. The other surgeon in the UK never got back to me. I see no point in pursuing him further since he’s a student of the German surgeon, and I can’t imagine his opinion will be any different. I suppose that’s 24,000 Euros saved and I won’t have to spend weeks and weeks away from my children. That’s what I told myself to make myself feel better.

So I’ve been crying a lot, in bed, at the gym, during acupuncture, in restaurants. It’s not as bad as it was in those dark December and January days. I won’t say I’ve fallen into any kind of depression-based abyss; I’m still engaging the world. I acted relatively normal at Belle’s 4th birthday party. I have even managed to see a couple friends. I still laugh and think a lot about other things besides cancer. I’m just in an emotional gray zone.

The night after I heard from the German surgeon, I was lying in bed in between Mia and Isabelle. Belle had fallen asleep but Mia was still awake and demanding that I tell her a story. I like to tell her stories about my life and my family growing up. She loves to hear about my and my family’s escape from Vietnam, but that night, in my heightened emotional state, I wanted to tell her another story about me, something she’d never heard before. I had been talking to her about the virtues of discipline and hard work as it pertained to her violin practice. Even though she’s been studying violin for only three months, her teacher has repeatedly told me and Josh that Mia is exceptionally talented. She seems to have inherited Josh’s incredible musical ability.

A couple months ago, I was sitting in on one of her lessons, and I was so impressed by the sounds coming out of her violin. I said to the teacher, “You know, I’m really glad I decided to rent such a high quality violin for Mia. It sounds really good.” Her teacher responded, “Actually, I’ve had plenty of students who have played on expensive violins and they did not sound good. Mia is really talented.” I was shocked. It had never occurred to me that my daughter could actually be gifted at the violin. Of course, the nice sounds coming out of the instrument were because of the instrument, not because of my daughter! It was such a Chinese mom moment, so deprecating, so doubtful. My mother said things like that about me and my siblings all the time. If you’re Chinese, you will understand.

Ever since then, I’ve made a conscious effort to really believe in and nurture Mia’s musical ability to make up for my Chinese mom moment (and to resist the impulse of skepticism to think that the teacher is exaggerating). So I’ve been pushing her to practice daily, which is like pulling teeth without Novocain at times. Recently, rather than rewarding her with stickers and eventually toys for practicing, I’ve been trying to explain to her that the goal (among others) is to instill in her a sense of discipline, although I’m not sure how much a five year old understands or cares about the virtues of discipline and its implications for life. So that night, I thought I would make the point through one of my stories.

I gathered Mia close and we lay on our sides like a couple of nestling spoons, her long spindly arms and legs tucked in as best as she could and the bright hallway light casting a reassuring glow on the wall at which we were staring. And I began:

Mommy is going to tell you a story about Mommy that you haven’t really heard before. You know Mommy was born in Vietnam, but did you know I was blind when I was born? It was after the War and there was no food or money, no money for Neh and Gong [what Mia calls my parents] to pay a doctor to make Mommy better. And even if they did have the money, there were no doctors in Vietnam that would have known how to fix Mommy’s eyes. But somehow we found a way out and eventually we made it to this country, the United States. And even though we didn’t have any money, because nice people gave us money, Mommy was able to go to one of the best eye doctors in the world, and he fixed Mommy’s eyes. But even he couldn’t make them perfect. I still can’t see very well. That’s why I always ask you to help me see. You are my eyes sometimes.

I was really sad a lot when I was little because I couldn’t see like Uncle or Titi or Mommy’s cousins. I wanted to be able to ride a bike and play tennis and drive a car. I wanted not to have to use big books with super big words. And no one understood how Mommy felt. I was alone and sometimes lonely in my world of half blindness. Because Mommy couldn’t see very well, everyone in Mommy’s family thought I was not very smart. They didn’t think Mommy could do anything. Mommy got really mad. I didn’t like people telling me what I could or couldn’t do and I was determined to show them that I could do anything I wanted. Remember that, Mia, only you can determine for yourself what you are capable of; no one else can, not even Mommy or Daddy.

So Mommy worked really really hard and exercised a lot of discipline. I studied a lot and then people started to realize that even though I couldn’t see well, that didn’t mean I was dumb or that I couldn’t do anything with my life. I got really good grades in school and ended up going to a great college. I traveled all over the world by myself, which isn’t easy when you can’t see well. I found a good job. And do you know what was the best part, Mia? Finding Daddy and then having you and Belle. I never thought I would be able to find someone like your daddy who would love me so much, and neither did anyone else it seemed, and all because I couldn’t see like everyone else. I never thought I could get married and have kids. I never thought anyone would want me. You, Belle and Daddy are the best things that ever happened to me. But everything good in my life started because I was willing to work hard, to be determined and disciplined because I wanted something for myself so very much. That’s why I want you to learn the value of working hard. Don’t ever forget this story, okay? I want you to remember Mommy’s story forever.

Mia was quiet for a minute, and I knew she was processing in her little quick brain what I had told her. Then she said, “I won’t forget, Mommy, but you should write it down. Then when I’m bigger and I can read better, I can read the story and remind myself.”

Her words brought new tears to my eyes. This entire blog is for Mia and Belle as much as it is for me, filled with my stories and beliefs about life, from which hopefully they will be able to extract pearls of wisdom when I’m not here to give them advice. But I also need to write stories that are more direct with their messages and my hopes and dreams for my children. This written story and this entry in general is among the first of such writings.

I realize now that, besides trying to illustrate a point for my daughter, my telling of that story to Mia that night was just as much an expression of my own current sense of solitude, aloneness and loneliness, not so different from what I knew as a child. But I bore the pain of those early years and somehow managed to find strength in solitude and then thrive; and so I hope I can do the same now, even though the pain feels a thousand times greater. As I have written before, no matter how many family and friends surround us, life is ultimately a journey of solitude.

During the first night after my cancer diagnosis, as I lay in that desolate bed in that hospital hell (before my transfer to UCLA), unable to sleep as my fear threatened to suffocate me, an unbidden image came to my mind in I imagine the same way some people have images come to them when in deep meditation. That image has persisted through all these months. I see myself walking alone down a long narrow passageway with towering and ancient stone walls on either side of me and atop those walls are menacing gargoyles armed with bows and arrows aimed at me, gargoyles that will come to life any minute. I realize now that I am walking to my execution. But despite that fact, I walk deliberately, my head unbowed, always with pride, grace and dignity. My mind unconsciously often returns to this image for I know now that it has become the metaphor for my cancer journey and for my life in general, or at least the metaphor to which I aspire and have always aspired.

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27 Comments (+add yours?)

  1. Maia
    Aug 03, 2015 @ 15:11:40

    ((Julie))

    Reply

  2. Amelie
    Aug 03, 2015 @ 15:30:50

    You are an amazing mama, Julie. Hugs and strength to you.

    Reply

  3. Ronnie Hoffman
    Aug 03, 2015 @ 15:33:12

    I can not ever express how incredible your words have affected me. I am sop grateful to have the privilege to have met you. Ronnie Hoffman

    Reply

  4. Barbara Gettelman
    Aug 03, 2015 @ 16:13:36

    No words….

    Reply

  5. Cristina
    Aug 03, 2015 @ 17:46:32

    I am in the same boat as you. You give voice to how I feel. Thank you. Wishing you peace.

    Reply

  6. Evelyn
    Aug 03, 2015 @ 19:54:58

    Julie! This post had me crying! Thank you for sharing with us! Evelyn

    Reply

  7. Chrissy Rice
    Aug 03, 2015 @ 20:22:05

    I will never forget you or your stories either. I feel much like you and the solitude as we come face to face with our death. I too believe my family or friends do not want to talk in such honest terms. So when you post here you also post for so many of us and I thank you for putting your feelings to paper.

    Reply

  8. Deborah Hoffman
    Aug 03, 2015 @ 20:27:11

    You are a beautiful amazing woman! You have a very special place in my heart with wonderful memories of our adventure in the Galapagos! Sending you love & best wishes everyday! We’re coming to NYC 10/29-11/1/15. Looking forward to seeing you & Josh💎 Love, Deborah

    Reply

  9. Courtney Whitaker
    Aug 03, 2015 @ 21:04:49

    Julie, your brutal honesty took my breath away. My husband is 3 months behind you with his stage iv inoperable colon cancer diagnosis. I know, it is not me going thru this, but we have 3 young children and the anger you feel and the not wanting to talk to anyone with a better dx, I get it. I really do. Thinking other people’s worries are trivial, I often struggle with that. I am however probably annoying bc I am holding out hope. I can’t imagine our lives without my husband, I refuse to not believe there is something out there to save him. How could this be for any of us? It is almost unreal to me tht this could happen to me, to you, to anyone. You are a brilliant writer, I only wish that I could express myself the way you do. Thank goodness for your abililities and your voice because you can say what so many of us feel. Thank you so much for sharing yourself with us all. Sending you love and peace. Courtney

    Reply

  10. courtneytollison
    Aug 04, 2015 @ 00:41:44

    Incredibly powerful. You are an amazing person. Josh has always been an unusually special person, and to know he is so loved by a woman with such depth and passion makes me smile.

    Reply

  11. Susan Pitman
    Aug 04, 2015 @ 07:13:20

    In your eloquence you are a rare and wonderful gift.

    Reply

  12. jeanine
    Aug 04, 2015 @ 08:56:16

    Heartbreaking post, Julie. I pray for peace for you but also for healing. You are remarkable.

    Reply

  13. Giada Weiss
    Aug 05, 2015 @ 14:25:31

    Write it out. Anything that helps you get through the days. hugs

    Reply

  14. The Astonishing FMan
    Aug 07, 2015 @ 15:37:11

    You are brutally honest, too honest for most of us easily to accept.

    Yet your honesty reflects a generosity of spirit, offering both to the suffering and to the healthy a genuine, lasting consolation that helps us to live our lives (and to face the universality of death) with “pride, grace and dignity” . . . and with courageous love.

    Aristotle wrote that, because we humans are limited imperfect creatures, courage does not mean not being afraid. Courage means being afraid of the right things (the things that are truly fearsome), but still striving to do the right things even when one is right to be afraid.

    Something similar could be said about anger.

    You’ve worked so hard to make a beautiful story of your life. You have made a beautiful story of your life. It cannot be wrong to be afraid and angry at the prospect of losing the beautiful life you have made with your family and your children, and even more angry and afraid at the prospect of them losing you. Yet you respond with such pride, grace, dignity and love. Your life is a beautiful story, ever beautiful to the ear of God.

    Even when you say it cannot be done, you prove yourself wrong because you do relieve our “solitude, aloneness and loneliness.”

    God bless you and keep you.

    Reply

  15. Laura
    Aug 07, 2015 @ 22:58:49

    Julie, i read through your blog tonight for the first time. I am also 39 with two young daughters and have rectal cancer. You are incredible, you write so well, what you describe is how i feel. Sending you love,
    Laura

    Reply

  16. Sarah
    Aug 09, 2015 @ 19:54:38

    Hi Julie, thank you so much for your blog. It helps a lot to hear the experience from others. A few days ago a family member was diagnosed with stage IV colon cancer with metastases in the liver and lungs. I am researching day and night for the most promising treatment. The John Hopkins clinic in New York for example has a colon research center and as I understand conduct ongoing trials for stage 4 colon cancer. I was wondering if you ever participated or plan to participate in a clinical trial for new treatments? Together with individualised medication (fruit flight) this is my biggest hope.

    http://www.hopkinscoloncancercenter.org/HCT/HCT_ClinicalTrials.aspx?CurrentUDV=59

    Reply

    • julielyyip
      Aug 09, 2015 @ 21:56:10

      Sarah, I applaud you for your research efforts. You may want to check out Data Blue, a database of CRC trials sponsored by the chris4life colon cancer foundation. It’s much easier to use than clinical trials.gov and a more comprehensive approach than looking at specific cancer centers. Understand that clinical trials have a VERY low rate of success. It’s more prudent to start with what one knows will work than going the experimental route at this point. That is my opinion so take it for whatever it’s worth. Indeed, I expect I will participate in a clinical trial but I will have to be very deliberate and thoughtful about that decision and will have to rely heavily on my oncologist’s opinion. As for personalized medicine with respect to things like fruit flies, as I’ve stated before, it is still in a very nascent stage so I’m not putting much credence into it yet.

      Reply

  17. Sarah
    Aug 10, 2015 @ 05:32:28

    Hi Julie, the Data Blue Database was a great tip. I was looking for days for T-Cell therapy clinical trials for metastatic colon cancer and finally found it there. Have you ever discussed CAR T-Cell immunotherapy with your oncologist? If so I would be happy to hear your opinion about that approach? The breakthrough on children leukaemia with this t-cell therapy announced last year was a breakthrough and gives hope that it can be repeated with colon cancer.

    http://www.chop.edu/news/personalized-cellular-therapy-achieves-complete-remission-90-percent-acute-lymphoblastic#.VchtsXjZpBU

    Reply

  18. Mika belgrave
    Aug 16, 2015 @ 14:23:30

    Hello!!
    I read you block all the time, I have recurrent ovarian cancer, I am only 34, I never had kids and never will.. I found this article and I thought about you, I hope that it could help you… It is a NEW drug trial at UCLA.

    http://www.israel21c.org/2-israeli-pharmas-get-fda-thumbs-up/#.Vc-3a3U5QpU.email

    Reply

  19. Carrie Griffin Basas
    Aug 20, 2015 @ 17:32:25

    I read this and appreciate your honesty. Living with a disability is enough of a life lesson about how to respond with grace and courage. This all really sucks. There are no words and no solutions.

    Reply

  20. Mark
    Aug 21, 2015 @ 00:39:12

    Heart wrenching to read. Stay strong and remember we are all put on this Earth for a purpose. Even though I do not know you, you are in my thoughts.

    Reply

  21. margaret
    Aug 21, 2015 @ 12:27:15

    Is somebody researching JAK inhibitors more? Maybe the cure is near?
    http://www.science20.com/news_articles/in_2014_over_80_percent_of_bowel_cancers_are_halted_with_medicines-146068

    Where are clinical trials of these meds for CC?

    Reply

  22. The Astonishing FMan
    Aug 27, 2015 @ 23:20:23

    I saw your “Very Down” post on the Colon Talk forum. I’m sorry you’re suffering. It makes me cry. I know it’s kind of against “the rules,” but please feel free to email me at astonishing at att dot net if you think it might help to have someone else to talk with. We could connect by phone if you’d like. When I was in the depths of despair, so sad and terrified that I couldn’t even think straight for ten seconds, a person came to my rescue, so I I owe it to try to help in any way possible. I don’t want there to be even a moment when you feel you have no place to turn.

    Reply

  23. tyler
    Sep 02, 2015 @ 13:05:54

    Julie, I know that it’s the end of summer and start of school and I hope that is what is occupying your attention. I hope to see a post soon. Maybe you can muse about your two apartments blending into one?

    Reply

  24. The Astonishing FMan
    Sep 03, 2015 @ 15:29:56

    Here’s an interesting bit of information:

    If you google “colon cancer blog,” there are 2,800,000 results, and “Julie Yip-Williams | My cancer fighting journey” is third on the list.

    Pretty amazing!

    Fortune 500 companies would pay big money to achieve that kind of google search ranking.

    Makes me wonder if you should consider hosting some google ads on your blog. You could use the ad revenue to raise money for http://www.chris4life.org/williams

    (Like you don’t already have enough to do!)

    Reply

  25. Sarah
    Sep 06, 2015 @ 20:39:30

    I am so sorry. I too have stage 4 colorectal cancer. My CEA levels are also elevated and as a mother of two boys ages 3 and 6, I have been terrified. I don’t want them to have to attend my funeral. I have felt everything you have written about. The only thing that sustains me is my Christian faith. I don’t know your view of Christianity, but I am praying for your comfort and healing. Sarah

    Reply

  26. The Astonishing FMan
    Sep 15, 2015 @ 15:30:10

    For mouth sores, I found that Rincinol works better than Biotene. Rincinol is alcohol-free so you can use it as often as you want. (Rincinol is pricey, but small “sips” work just as well as the recommended dose.) It’s hard to find in stores, but is available online. It has a slight anise or licorice flavor, so if you don’t like licorice, you might not like the taste. Here’s a link.

    http://www.walgreens.com/store/c/g-u-m-rincinol-p.r.n.-mouth-sore-rinse/ID=prod849475-product

    Reply

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