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.