Insanity

For those of you who have read my blog faithfully, you know how brutally honest I strive to be here, how I endeavor to give voice to the most painful and, some might say, the most humiliating and unflattering aspects of myself as I flounder through the journey that is living with cancer – the rage, jealousy, bitterness, terror and sorrow. While I write and share the ugliest parts of this journey in a way that I could never verbalize accurately or completely for my own cathartic reasons (among others), I share also because I know that such brute honesty validates the dark emotions of those who feel as I do as they stumble through their own trials and tribulations, whether they be cancer related or not. And in that validation, you and I, we, regardless of whether we’ve ever met in person, find a connection, a oneness in our suffering that speaks to the universal human experience, which transcends class, race, culture, time and space. I want you all to know that it is to this connection, this sense of oneness, that I cling as the loneliness of this journey threatens to swallow me, especially during these past couple weeks. For the first time in this multi-year struggle with cancer, I find myself ever closer to a lonely insanity. More

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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: More

Ghosts

I’ve been thinking a lot about ghosts in the last few weeks and more so in the last couple days. It’s part of trying to figure out what happens when we die. And that in turn is a result of not such good scans a few weeks ago and more recently my bout of severe diarrhea that led me to feel like death.

The PET scan was “mixed”, meaning that it showed some growth, some stability and some shrinkage. To me, it proved what my rising CEA had indicated – that the current Erbitux with 5-FU bolus injection is starting to fail. It certainly is starting to fail in those parts of my lungs where there has been growth. My oncologist told me that the “conventional oncological approach to a mixed scan is to continue with the current treatment,” which I understand; milk the drugs for as much as you can before they completely fail. So I agreed to continue but we also agreed that my next scans would be pushed up to six weeks as opposed to the usual three months. My next scan will be next Tuesday, an abdominal and pelvic MRI and a chest CT, starting at 7:45 a.m. I’ll know the results the same day when I see my oncologist so we will then discuss based on those results what awaits me next in the wonderful realm of limited treatment options. More

Pride

My long absence from this blog is partly attributable to the business of my life, i.e., raising two young children, overseeing the looming renovations, spending quality time with my husband and in general taking care of home and hearth. For example, on a recent Thursday, I started my day with dropping the kids off at school; then I went to the Apple Store to make a product return; then I attended a meeting with my architect and designer; then I picked up Isabelle from school and then dropped her off at dance class; then I went to pick up Mia at the bus stop, but then the bus got into a minor accident so I had to go pick her up from the accident site; and then I had to rush back to oversee a kick-off meeting for the renovations with my building’s property manager, super, my contractor and all the subcontractors and my architect. As I have often said, I have no idea how I ever had a paying job. Then, there’s also dealing with the side effects of treatment which has made me need sleep as never before; thus, no more staying up late or getting up in the middle of the night to write. More

A Good Life

I remember when I was an adolescent, my aunt (my mother’s sister) who had just recently immigrated from Vietnam, would take my un-roughened hands in her well-worn ones and say in a slightly wistful tone, “Seng, you have a good life.” To her, it was a statement of fact and perhaps aspirational prophecy. My hands had never known the harshness of working in the fields or making abrasive soaps to sell on the streets or even cooking or doing chores, all things that my aunt and mother had spent most of their lives in Vietnam doing. My youthful hands were pale, clean and smooth, unblemished by sun, heat, grime, labor and the brutal realities of a life that could have been. I once asked my father, during one of our many hours sitting in the car through Los Angeles traffic, why he had left Vietnam. I could not and still cannot fathom circumstances that would make a person so desperate as to leave the country that had been his home since birth and for thirty-something years thereafter on a rickety fishing boat with an unclear destination. His pithy response, “You don’t understand. You eat rice and I ate salt.” My father loves his cryptic Chinese and Vietnamese sayings. No, I guess I will never understand the suffering that compelled my parents to emigrate halfway around the world, risking their lives and their children’s lives for the nebulous promise of a better life, a good life.

I have stared at my hands a lot lately. They are ugly now, the fingers blackened and unnaturally wrinkled, the cuticles overtaking the bottoms of my fingernails, the fingernails themselves oddly pale in comparison to the darkened skin. My hands look strangely tanned (as does the rest of my skin). Fissures that are various shades of pink, red and black (from dried and old blood) adorn the skin right along the edge of my fingernails on the backs of my hands. There are open cuts and the remnants of those open cuts along the creases of my fingers and palms. My ravaged hands are evidence of what the drugs have done to me, symbols of the toll that cancer has taken on my body and my life. I find myself looking enviously at other people’s hands and even my own hands in photos that predate my cancer diagnosis. Seeing those before-cancer photos are especially poignant and even heartbreaking. Every photo, every memory is always now automatically identified by my mind as before or after cancer. Would my aunt today still look at my after-cancer hands and tell me I have a good life? I daresay not. More

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.  More

Isabelle (Part 1)

After the longest silence on this blog, hello all, finally. How I’ve missed sitting at my computer and allowing my many thoughts to flow out of me as they so have wanted to do, but life and a life that has been dominated by cancer and its darkness have trapped them inside my exhausted mind. So much has happened that I must break this blog post into two parts.  Part 2 will soon follow.

Life consisted primarily of taking care of my children after our Galapagos trip and all that that entails – cooking, cleaning, shopping, preparing for the new school year, fussing over my many new herb, succulent, flowering and carnivorous plants (the objects of a new obsessive yet unexpectedly very cathartic hobby I’ve adopted over the last few months) and, when I could rise above all the cancer crap, playing. There was no camp for the kids this summer since we are trying to save money in light of our significant capital outlay for the purchase of the neighboring apartment and the planned combination. It simply isn’t possible to think when they’re around, never mind write. (Who knew two little girls could fight so viciously and I have no idea how to fairly referee their battles!) The planned combination itself comes with a fair amount of work as the closing is set to occur at the end of this month and the finalized design is to go to the building’s board and the City for approval soon. I’ve been busy thinking about bathroom tiles and flooring, calculating costs and pondering the finer details of the proposed layout. How I wish sometimes, especially when I wallow in the darkness, my life were limited to all this mundaneness, that it were so simple and normal. But alas, for better or worse – I like to believe better – simplicity and normalcy have never been and will never be my destiny. More

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. More

Our Shared Humanity

Before I proceed with a medical update, here is Part 3 of the Medical Daily article about me and related philosophical musings.  This final part in the series focuses on my fundraising efforts to fund a cure for colorectal cancer:  A Shared Passion To Fund A Cure For Colon Cancer.

In my moments of self-involved fear, sadness and anger, when I know with a deep conviction that I will die from this cancer and sooner rather than later — unless I’m killed in a car accident or plane crash before then — I try to calm myself by remembering that I am but one person on a planet circling a star, along with billions of other people, in a universe that includes an untold number of planets and stars.  My one human life in its infinitesimal smallness and my experiences from that life seemingly matter little when juxtaposed against the lengthy history and hopefully lengthier future of my species and even less against the vastness of time and space,  Billions of people have come before me and billions will come after me (I hope); they too have known and will know the same joys and pains that I have known; we are linked together through the millennia by our common humanity, our shared understanding of the human experience.  Though technology may have evolved, there is something universal, fundamental and timeless in the feelings we experience as we look upon the innocence of a child or witness the agonizing death of another human being.  Yes, there is evil in this world, war and other despicable brutalities, greed, materialism, jealousy, arrogance, both past and present; such dark qualities are indelible parts of our human selves. And yet, I have faith in the overall goodness of humanity, as flawed and imperfect as we are, of our incredible potential, for we are capable of such ingenuity, intelligence, creativity, compassion, love and wisdom. Even as I fear that our darker qualities may lead us to our own self-destruction, whether through nuclear war or the erosion of our life-giving planet, I also hope fervently that we are the source of our own salvation, that somehow, together, we will find solutions to the greatest problems that plague our species.  (How ironic indeed that I can have such hope for humankind’s salvation but I cannot muster that same optimism for my own personal salvation from this disease.  I recognize my own inconsistency.)  More

Dominos Falling

When you are diagnosed with advanced cancer and the statistics are rather dramatically not in your favor, people (including those who themselves are facing advanced cancer) always tell you not to pay attention to the numbers, that you are not a number, etc., etc., etc. Those trite words seem to go hand-in-hand with platitudes like Never give up, There’s always hope, You have to be positive, and Everything happens for a reason. If you’ve read this blog for a while, then you know that I hate such inane statements of fluff, that I like to deconstruct them and determine for myself whether there’s actually any truth or pearl of wisdom within. At the beginning of this cancer journey, when faced with the sobering statistics, for my own self-preservation, I intuitively shunned the numbers too, insisting to myself and Josh that I am someone who has always defied the odds and that this would be no different, etc., etc., etc. I knew I wasn’t a number. I rebelliously wrote Numbers Mean Squat and stated that “I [chose] not to live and die by what the odds-makers say. I [chose] not to put faith in percentages that were assembled by some anonymous researcher looking at a bunch of impersonal data points. Instead, I [chose] to put faith in me, in my body, mind and spirit, in those parts of me that are already so practiced in the art of defying the odds.” And since then, I’ve portrayed Josh as the steadfast adherent to science, studies and statistics on one side and I as the staunch believer in self, faith and all that is unquantifiable on the other side. Sixteen months after my diagnosis, I have come to realize that those two sides theoretically representing two opposing perspectives on the value of statistics are not so opposite nor cut and dried, that indeed numbers do not mean squat, that they are informative and valuable, but they must be understood within a nuanced context that overly simplistic statements like “You are not a number” don’t even begin to capture.

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