Cancer Talk
Giving Life and Accepting Death
January 04, 2010
Happy New Year!
Is it overly morbid to contemplate life and death during the festive season? Not if you believe the beginning of the year to be a fresh start, an end to past endeavours, winding up of the previous chapter, and an opportunity to start anew, reset our goals, reshape our perspectives.
On Boxing Day, amidst a scrumptious buffet of roasted meats, gigantic crustaceans, and endless pudding, the conversation touched upon only children, with the general consensus - including the only only child at the table - that children without siblings grew up lonely, with a tendency towards egocentricity. I was eager to chime in with my experience of dealing with the progeny of China's one-child policy, but when the still child-free ladies volunteered their preferences on how many children they would eventually like to bear and mother, I remained quiet.
Do I feel cancer has deprived me of motherhood? No, but my views have admittedly morphed, from strictly pro-choice to decidedly come-what-may. Certain aspects of my life are no longer about active decisions on my part, but really just dealing with the hand I've been dealt. Que sera, sera. I can barely plan beyond next month, let alone nine in a row! One part of my perspective on parenting that has clearly evolved: it's not just up to me to want a brood of boys (four!) not even one will happen if I am not presented the opportunity to bear and raise children with someone who fits the bill.
On the other end of the spectrum, in the very same last week of 2009, I was approached to be interviewed on an academic topic from the perspective of someone 'terminally ill'. I'm pretty confident that I defy the medical definition of meeting death sometime in the next 6 months, so my instinctive reaction was to reject the label. But it did spark further contemplation in me. I stood under the hot, streaming jet one morning, lathering hopeful conditioner onto my parched and dehydrated head of dessert fern strung of radiation-inspired uneven regrowth, and mused: Would I live longer if I didn't have cancer? Probably. What is terminal about my life at this point? Maybe the eggs in the fridge. Have I accepted death? Only as a fact of life. I've now examined life and death enough to understand that there is no random, nothing is really a co-inky dinky, and everything in good time. And even if I did have an appointment with death, I'll just be fashionably late. Don't they know who I am?
As we counted down the final seconds of the year, we rang in a fresh beginning more meaningful than just a new decade. One that winds down the innocence of young coupledom, one that buds the purest innocence of all. One with less late nights of drinking, more early mornings of warm bottles.
Here's to you, J & S, one of the very few couples I simply cannot wait to admire as parents.
Back to details of 'The "C" Word'
Is it overly morbid to contemplate life and death during the festive season? Not if you believe the beginning of the year to be a fresh start, an end to past endeavours, winding up of the previous chapter, and an opportunity to start anew, reset our goals, reshape our perspectives.
On Boxing Day, amidst a scrumptious buffet of roasted meats, gigantic crustaceans, and endless pudding, the conversation touched upon only children, with the general consensus - including the only only child at the table - that children without siblings grew up lonely, with a tendency towards egocentricity. I was eager to chime in with my experience of dealing with the progeny of China's one-child policy, but when the still child-free ladies volunteered their preferences on how many children they would eventually like to bear and mother, I remained quiet.
Do I feel cancer has deprived me of motherhood? No, but my views have admittedly morphed, from strictly pro-choice to decidedly come-what-may. Certain aspects of my life are no longer about active decisions on my part, but really just dealing with the hand I've been dealt. Que sera, sera. I can barely plan beyond next month, let alone nine in a row! One part of my perspective on parenting that has clearly evolved: it's not just up to me to want a brood of boys (four!) not even one will happen if I am not presented the opportunity to bear and raise children with someone who fits the bill.
On the other end of the spectrum, in the very same last week of 2009, I was approached to be interviewed on an academic topic from the perspective of someone 'terminally ill'. I'm pretty confident that I defy the medical definition of meeting death sometime in the next 6 months, so my instinctive reaction was to reject the label. But it did spark further contemplation in me. I stood under the hot, streaming jet one morning, lathering hopeful conditioner onto my parched and dehydrated head of dessert fern strung of radiation-inspired uneven regrowth, and mused: Would I live longer if I didn't have cancer? Probably. What is terminal about my life at this point? Maybe the eggs in the fridge. Have I accepted death? Only as a fact of life. I've now examined life and death enough to understand that there is no random, nothing is really a co-inky dinky, and everything in good time. And even if I did have an appointment with death, I'll just be fashionably late. Don't they know who I am?
As we counted down the final seconds of the year, we rang in a fresh beginning more meaningful than just a new decade. One that winds down the innocence of young coupledom, one that buds the purest innocence of all. One with less late nights of drinking, more early mornings of warm bottles.
Here's to you, J & S, one of the very few couples I simply cannot wait to admire as parents.
Back to details of 'The "C" Word'
The 'C' Word
November 11, 2009
So much news, so many words, so little hours in a day.
Earlier this year, I submitted a proposal to an art project sponsored by Bloomberg through Hong Kong YAF - Hong Kong Youth Arts Foundation. That application was not successful, but YAF contacted me a few months later about tweaking the project and re-submitting it to Operation Santa Claus (OSC), an annual fund-raising effort that supports a broad variety of charities and causes throughout Hong Kong.
'The "C" Word' was then granted just over half a million HKD as one of 13 beneficiaries of 2009's OSC funding. Before your eyes bleed out of your sockets, no, Santa won't be supporting my personal Blahnik habit.
Essentially, the project seeks to use my personal creative expression to evoke the same from other young adults (between18-35 years) experiencing cancer, to encourage them to reflect upon their feelings, stories and journeys, to find strength and positive energy in that creative expression.
Structurally, it will involve a series of creative workshops encouraging participants to find their inner voice to articulate their experience with cancer through the written and/or spoken word, colour psychology, photography and visual media. These workshops will be documented and the culmination of expressions will be exhibited to the public at the end of the program.
As project artist of 'The "C" Word', I will facilitate most of these workshops, leading this expression through primarily a voice narrative of my own, in both recorded and discussion format, invoking formulation of thoughts, emotions, or any kind of mental state into creative constructs such as writing, photographs and collage.
I have been blessed with the ability to express myself in more ways than one, with just enough aggression to be vocal about anything I experience, and the desire to reach out and touch. Cancer is a mindfuck, sharing the experience normalises the shock, irons out the kinks, alleviates the pain. But not everyone can find the voice to manifest what they're going through. Trauma happens to those who live to tell, or else there'd just be fatal accidents. So why not be creative about it, too.
'The "C" Word' relies heavily on concepts of art therapy as bases of its structure, but I hesitate to label the program 'rehabilitation' or 'therapy' to avoid expectations of just that - it's not about achieving a rehabilitated state, we're not prescribing a cure. It's the creative journey I'd like to share and give.
And there will be tears, anger, and dark things I cannot imagine, which is cool, we'll share that too.
The workshops for 'The "C"Word' is scheduled to begin in March next year, with the exhibition tentatively planned for June, 2010. Through the public exhibition, we hope to demystify many of the conceptual barriers that surround cancer: it's not a disease that only happens to old people, it's an epidemic that affects people of all ages. Working with art education specialists, the program will also include guided tours of the exhibition for student groups and social workers, offering an interactive element, broadening the reach of the project to beyond the 80-100 workshop participants.
South China Morning Post and Radio Television Hong Kong are the key organisers of OSC, which means, have a laugh with me when you see my pic in the Post, or hear me on radio.
I was informed of the grant the first day I started working at Ooi Botos Gallery. As double-whammy-new-beginnings go, that pretty much scores unbeatable for me. In preparing for an upcoming exhibition of a Beijing-based artist at the Gallery this month, I put my various composite skills to use once again, establishing much desired routine and stability in my days that were beginning to irk me with nonproductivity. Managing the gallery suits me, like wearing high heels. Ooi Botos focuses on contemporary art photography, how snug a fit is that?
The fact that I've learnt to slide an update on my health down towards the end of an entry is not to be interpreted as a sign of priority-shift, far from it. It demonstrates rather, my increasing level of acceptance of the Big C into my life. Yes, I'm dealing with more metastases - to the liver, lower spine - and the tumours in the pancreas are decidedly taking up more real estate. But the key takeaway here: I'm dealing. There were two days when I dove even deeper into that now familiar black hole, drowning in an abyss of questions, self-doubt, denial. I was fragile, volatile, vulnerable, surprised it wasn't getting easier each time I got there. Though again, the operative noun: just two days. OK, maybe three.
I have just begun a regime of chinese herbal medicine and qi gong practice with a diet of strictly no bird, little meat and even less shellfish. Fresh, hot lawn in a bowl every day, while I picture peking duck and pigeon sauntering triumphantly behind me round the race track here in Happy Valley. Something's gotta give, and guinea fowl, it is! Have I denounced conventional, allopathic medicine completely? Have I turned my back on the sole practice on which I, and my siblings, were raised? I don't know, does oscillating between religions make us less faithful followers?
Somewhere in the meantime, I enjoyed yet another epic birthday celebration this Scorpio month. Sunshine, sailboat, seafood, imported Shanghai, local frenzy, crazy cousins, scary toe-gloves, shocking balloons, cake and more cake, I couldn't possibly have laughed more that weekend. 'Thank you' doesn't quite express how grateful I am for those moments shared with YOU.
Ann is here, too! New job, new gym, sisters in the Valley!
Pass on the "C"word if you know someone between 18 to 35 here in Hong Kong living with cancer. It ain't so dirty a word after all.
Earlier this year, I submitted a proposal to an art project sponsored by Bloomberg through Hong Kong YAF - Hong Kong Youth Arts Foundation. That application was not successful, but YAF contacted me a few months later about tweaking the project and re-submitting it to Operation Santa Claus (OSC), an annual fund-raising effort that supports a broad variety of charities and causes throughout Hong Kong.
'The "C" Word' was then granted just over half a million HKD as one of 13 beneficiaries of 2009's OSC funding. Before your eyes bleed out of your sockets, no, Santa won't be supporting my personal Blahnik habit.
Essentially, the project seeks to use my personal creative expression to evoke the same from other young adults (between18-35 years) experiencing cancer, to encourage them to reflect upon their feelings, stories and journeys, to find strength and positive energy in that creative expression.
Structurally, it will involve a series of creative workshops encouraging participants to find their inner voice to articulate their experience with cancer through the written and/or spoken word, colour psychology, photography and visual media. These workshops will be documented and the culmination of expressions will be exhibited to the public at the end of the program.
As project artist of 'The "C" Word', I will facilitate most of these workshops, leading this expression through primarily a voice narrative of my own, in both recorded and discussion format, invoking formulation of thoughts, emotions, or any kind of mental state into creative constructs such as writing, photographs and collage.
I have been blessed with the ability to express myself in more ways than one, with just enough aggression to be vocal about anything I experience, and the desire to reach out and touch. Cancer is a mindfuck, sharing the experience normalises the shock, irons out the kinks, alleviates the pain. But not everyone can find the voice to manifest what they're going through. Trauma happens to those who live to tell, or else there'd just be fatal accidents. So why not be creative about it, too.
'The "C" Word' relies heavily on concepts of art therapy as bases of its structure, but I hesitate to label the program 'rehabilitation' or 'therapy' to avoid expectations of just that - it's not about achieving a rehabilitated state, we're not prescribing a cure. It's the creative journey I'd like to share and give.
And there will be tears, anger, and dark things I cannot imagine, which is cool, we'll share that too.
The workshops for 'The "C"Word' is scheduled to begin in March next year, with the exhibition tentatively planned for June, 2010. Through the public exhibition, we hope to demystify many of the conceptual barriers that surround cancer: it's not a disease that only happens to old people, it's an epidemic that affects people of all ages. Working with art education specialists, the program will also include guided tours of the exhibition for student groups and social workers, offering an interactive element, broadening the reach of the project to beyond the 80-100 workshop participants.
South China Morning Post and Radio Television Hong Kong are the key organisers of OSC, which means, have a laugh with me when you see my pic in the Post, or hear me on radio.
I was informed of the grant the first day I started working at Ooi Botos Gallery. As double-whammy-new-beginnings go, that pretty much scores unbeatable for me. In preparing for an upcoming exhibition of a Beijing-based artist at the Gallery this month, I put my various composite skills to use once again, establishing much desired routine and stability in my days that were beginning to irk me with nonproductivity. Managing the gallery suits me, like wearing high heels. Ooi Botos focuses on contemporary art photography, how snug a fit is that?
I have just begun a regime of chinese herbal medicine and qi gong practice with a diet of strictly no bird, little meat and even less shellfish. Fresh, hot lawn in a bowl every day, while I picture peking duck and pigeon sauntering triumphantly behind me round the race track here in Happy Valley. Something's gotta give, and guinea fowl, it is! Have I denounced conventional, allopathic medicine completely? Have I turned my back on the sole practice on which I, and my siblings, were raised? I don't know, does oscillating between religions make us less faithful followers?
Somewhere in the meantime, I enjoyed yet another epic birthday celebration this Scorpio month. Sunshine, sailboat, seafood, imported Shanghai, local frenzy, crazy cousins, scary toe-gloves, shocking balloons, cake and more cake, I couldn't possibly have laughed more that weekend. 'Thank you' doesn't quite express how grateful I am for those moments shared with YOU.
Ann is here, too! New job, new gym, sisters in the Valley!
Pass on the "C"word if you know someone between 18 to 35 here in Hong Kong living with cancer. It ain't so dirty a word after all.
Cancer Circus Pt III
May 05, 2009
Why do I keep writing about the past when the daily chronicles are dramatic and demanding enough?
Because it's only when we fully understand history can we appreciate what is happening in the present. Because I want to verbalise, to contextualise it all before I forget. Because shit piles up. Because I had a series of boring, motionless dates with the literally radiating Wall E, and it will be another two months before the next round of MRI to see whether he has delivered his promises and/or other catastrophes.
So, where was I? Refresh your minds with Part I and Part II, in case you mistake this entry as what is happening currently. I'm going through recurrence right now, but I'm recounting what transpired back from September 2007, after the initial surgery.
I was on my feet pretty soon after the operation, my hair just isn't right when I lie down for days on end. I was told that during surgery, updates were leaking out by the minute to a handful of friends via SMS and IM, much like news flashes during presidential elections. Day 3 after, I thought it time to announce the situation and requested Ann to send out an email to a small network. She wrote with such rationality and precision that I ended up forwarding her message to my entire address book — sedated or not, I couldn't possibly have done any better.
... It was really touch and go for a while. She’s coming through now though and it’s all looking positive. She’s mentally very alert (been bossing me around since the op) but the body is obviously going to take some time to heal. It was a really major surgery. She’s basically got an artificial artery inside her for the rest of her life. She’s still on morphine...
The response to Ann's email made me feel especially loved: my inbox was inundated with concerned and well-wishing messages, and the hospital flooded with floral deliveries. I even received a pink Nintendo SC to wile away the hours. If you think a hospital stay is boring, think again. I couldn't get through one single DVD from a selection that was so kindly brought to me from my Shanghai home. Doctors did their rounds before my breakfast. Nurses were at me round the clock. Visitors came to see me, but had to be hosted in unoccupied rooms since mine was packed. It was a full-time job, and I missed my freelance schedule.
Even with the low energy level, sleep was not always easy while in hospital, with a drainage unit attached to me like an untrained ayi, clumsy and awkward. She was loud as well: the continuous suction noise had me thinking it was raining the entire night at ICU, and provoked me to shut her up in layers of toweling even during the days after. Sleeping on my side is now elevated from mundane habit to luxury behaviour, one that I am thankful for every night. Lounging on an incline, my back and bottom grew sore, but lying completely flat would probably have caused more complications when a pulmonary embolism hit me five days post-operation.
I remember not being able to breathe that early morning. I sat up, composed myself and tried unsuccessfully to fall asleep again. The oxymeter moved between 84 to 89, well below the required 100% blood oxygen content. I woke Mom, who then immediately called the nurse, who then reached my surgeon urgently. It was not yet 6 AM. The emergency CT scan indicated a shower of blood clots blocking my major airways that was apparently foreseeable and even expected while recovering from such major physical trauma. Once the clots are formed, then sprinkled into the bloodstream, they are hoped to be absorbed back into the system. The doctors then increased dosage on the blood thinner I was already taking as a precaution.
Returning to my room in a wheelchair from the imaging department that morning, I crashed. The morphine euphoria had long evaporated, reality was slow, hard and heavy. I was staring at life head on, and I felt weak, defeated, broken. I cried.
The rest of my sojourn at the 'hotel' was relatively non-eventful. I savoured a transfusion of 3 full bags of blood — it coursed through my veins like V from True Blood, the sweet, invigorating life source it is — while Ann scored a photo with Josh Hartnett for her sister's entertainment in the name of cancer. To Josh, who was wrapping up filming in Hong Kong, the 'sister in hospital' probably resembled a bald twelve year-old with leukemia in flannel pajamas, frail, pale and emaciated in a room full of balloons and teddy bears. Whatever works.
PT had rerouted a company trip from Thailand to Hong Kong the day before my discharge from hospital. Seeing him, my best friend, was tremendously comforting; but seeing him, a familiar face from Shanghai reaffirmed the reality of the circumstances: this was not a parallel universe I accidentally slid into, not a surreal nightmare — this is it, there really is no escape.
The ride home from hospital was the first time I had left the building in ten days. I was tearful, overwhelmed. By the time we arrived, I wanted to unload the anxiety, but was overshadowed by my mother's own personal brand of fury. She unleashed her stress over a minor miscommunication with the medical supplier of home-use oxygen. Her yelling and frantic energy made me aware that even if I myself hadn't been on edge for the last two weeks, people who cared about me certainly were, and desperately needed relief.
Be careful what you wish for, really, because the Universe does hear you. I recall clearly that night at YY — one of our late night haunts in Shanghai where the badly mixed drinks and the smoky, bohemian atmosphere always have me drinking hot Lipton tea with a shot of vodka — when PT, Alfred and I sat around spinning yarn on piercings and tattoos. A tattoo is something serious, it's really desecrating the body... I think scarring or branding is hot, it adds texture and touch... You've always decorated your cleavage. Yes, why don't I just get a zipper on my chest?!
My favourite accessory for a decolletage since I-don't-remember-when: Swarovski crystal tattoos in black, straight down my front. I have a visual of the post-op, pre-scar staples too. Not for the squeamish, though.
Because it's only when we fully understand history can we appreciate what is happening in the present. Because I want to verbalise, to contextualise it all before I forget. Because shit piles up. Because I had a series of boring, motionless dates with the literally radiating Wall E, and it will be another two months before the next round of MRI to see whether he has delivered his promises and/or other catastrophes.
So, where was I? Refresh your minds with Part I and Part II, in case you mistake this entry as what is happening currently. I'm going through recurrence right now, but I'm recounting what transpired back from September 2007, after the initial surgery.
I was on my feet pretty soon after the operation, my hair just isn't right when I lie down for days on end. I was told that during surgery, updates were leaking out by the minute to a handful of friends via SMS and IM, much like news flashes during presidential elections. Day 3 after, I thought it time to announce the situation and requested Ann to send out an email to a small network. She wrote with such rationality and precision that I ended up forwarding her message to my entire address book — sedated or not, I couldn't possibly have done any better.
... It was really touch and go for a while. She’s coming through now though and it’s all looking positive. She’s mentally very alert (been bossing me around since the op) but the body is obviously going to take some time to heal. It was a really major surgery. She’s basically got an artificial artery inside her for the rest of her life. She’s still on morphine...
The response to Ann's email made me feel especially loved: my inbox was inundated with concerned and well-wishing messages, and the hospital flooded with floral deliveries. I even received a pink Nintendo SC to wile away the hours. If you think a hospital stay is boring, think again. I couldn't get through one single DVD from a selection that was so kindly brought to me from my Shanghai home. Doctors did their rounds before my breakfast. Nurses were at me round the clock. Visitors came to see me, but had to be hosted in unoccupied rooms since mine was packed. It was a full-time job, and I missed my freelance schedule.
Even with the low energy level, sleep was not always easy while in hospital, with a drainage unit attached to me like an untrained ayi, clumsy and awkward. She was loud as well: the continuous suction noise had me thinking it was raining the entire night at ICU, and provoked me to shut her up in layers of toweling even during the days after. Sleeping on my side is now elevated from mundane habit to luxury behaviour, one that I am thankful for every night. Lounging on an incline, my back and bottom grew sore, but lying completely flat would probably have caused more complications when a pulmonary embolism hit me five days post-operation.
I remember not being able to breathe that early morning. I sat up, composed myself and tried unsuccessfully to fall asleep again. The oxymeter moved between 84 to 89, well below the required 100% blood oxygen content. I woke Mom, who then immediately called the nurse, who then reached my surgeon urgently. It was not yet 6 AM. The emergency CT scan indicated a shower of blood clots blocking my major airways that was apparently foreseeable and even expected while recovering from such major physical trauma. Once the clots are formed, then sprinkled into the bloodstream, they are hoped to be absorbed back into the system. The doctors then increased dosage on the blood thinner I was already taking as a precaution.
The rest of my sojourn at the 'hotel' was relatively non-eventful. I savoured a transfusion of 3 full bags of blood — it coursed through my veins like V from True Blood, the sweet, invigorating life source it is — while Ann scored a photo with Josh Hartnett for her sister's entertainment in the name of cancer. To Josh, who was wrapping up filming in Hong Kong, the 'sister in hospital' probably resembled a bald twelve year-old with leukemia in flannel pajamas, frail, pale and emaciated in a room full of balloons and teddy bears. Whatever works.
PT had rerouted a company trip from Thailand to Hong Kong the day before my discharge from hospital. Seeing him, my best friend, was tremendously comforting; but seeing him, a familiar face from Shanghai reaffirmed the reality of the circumstances: this was not a parallel universe I accidentally slid into, not a surreal nightmare — this is it, there really is no escape.
The ride home from hospital was the first time I had left the building in ten days. I was tearful, overwhelmed. By the time we arrived, I wanted to unload the anxiety, but was overshadowed by my mother's own personal brand of fury. She unleashed her stress over a minor miscommunication with the medical supplier of home-use oxygen. Her yelling and frantic energy made me aware that even if I myself hadn't been on edge for the last two weeks, people who cared about me certainly were, and desperately needed relief.
My favourite accessory for a decolletage since I-don't-remember-when: Swarovski crystal tattoos in black, straight down my front. I have a visual of the post-op, pre-scar staples too. Not for the squeamish, though.
The (Written) Word
April 15, 2009
After the discovery of two tumours in the left hemisphere of my brain — frontal lobe: 0.7 cm and temporal lobe: 1.3 cm — and a sprinkling (6) of teeny weeny ones on the right this past week, I've been contemplating dysphasia.
Defect in the expression and comprehension of words, caused by damage to the frontal and temporal lobes of the brain. It can result from head trauma, tumour, stroke, or infection. Symptoms vary with the brain area involved, and the ability to put words in a meaningful order may be lost. Speech therapy may be useful. In some cases, improvement may be due to assumption of some language functions by other areas of the brain.
Despite my brother 'consoling' me that dysphasia would be the least of my concerns should these tumours be allowed to develop, stroke and paralysis being undoubtedly the more devastating scenarios, I just cannot help wondering how can life be, how can it possibly exist, if the ability to communicate, to express myself were stripped from me. What are the readers of this blog going to do? What a waste of my voice? How will I convey sarcasm?
I sought the opinion of the most articulate person I know, Chris, a good friend in New York, one of my favourite writers ever, and a fellow lover of language, irony and absurdity.
The written word is a powerful outlet for me indeed. It has certainly served its purpose of keeping me sane in the last few months. If I may borrow and share some inspiring ones from friends and readers of this blog, comments, quotations and words from which I have particularly drawn strength:
'Rage, rage against the dying of the light.' - Dylan Thomas
'Today the present.
This very day right here and now.
Today is yesterday returned.
The day before tomorrow.
Nowadays.
This day a day that is here.
Between the past and the future.
The rising and the setting of the sun.' - Fiona Banner, Today, Portrait of a Word
Fall in love with someone who deserves your heart, and not someone who plays with it.
Buddha's widchualldeway!
You have got to do well and keep writing and broadcast this stuff to people around the net.
I'm hoping to develop a super power from undergoing CyberKnife. If not turning invisible, or transforming energy fields by manipulating excessive radiation, then maybe a bit of supertronic linguistica would be handy, enhance the spoken word, while we're at it. Russian could be hot while I'm zapping traffic lights. Would life stop being ironic with super powers?
What super powers would you want?
PS. fuck those fuckers.
Defect in the expression and comprehension of words, caused by damage to the frontal and temporal lobes of the brain. It can result from head trauma, tumour, stroke, or infection. Symptoms vary with the brain area involved, and the ability to put words in a meaningful order may be lost. Speech therapy may be useful. In some cases, improvement may be due to assumption of some language functions by other areas of the brain.
Despite my brother 'consoling' me that dysphasia would be the least of my concerns should these tumours be allowed to develop, stroke and paralysis being undoubtedly the more devastating scenarios, I just cannot help wondering how can life be, how can it possibly exist, if the ability to communicate, to express myself were stripped from me. What are the readers of this blog going to do? What a waste of my voice? How will I convey sarcasm?
I sought the opinion of the most articulate person I know, Chris, a good friend in New York, one of my favourite writers ever, and a fellow lover of language, irony and absurdity.
| Me: | Have you ever thought what you would do if you weren't able to write? As in cerebrally? |
| Chris: | Does that mean you're having trouble? Like cerebrally? |
| Me: | I have about 8 tumours in my brain, Chris. |
| Chris: | Oh... Rae, it's hard to imagine: you're one of the most articulate people I've met. |
| Me: | This is the procedure I'm starting tomorrow. |
| Chris: | 'CyberKnife'?? |
| Me: | Yeah, B-grade thriller fiction name, I concur. |
| Chris: | And it looks like Wall-E. You're being saved by Wall-E. |
| Me: | Wall-E has no language/speech cognisance. |
The written word is a powerful outlet for me indeed. It has certainly served its purpose of keeping me sane in the last few months. If I may borrow and share some inspiring ones from friends and readers of this blog, comments, quotations and words from which I have particularly drawn strength:
'Rage, rage against the dying of the light.' - Dylan Thomas
'Today the present.
This very day right here and now.
Today is yesterday returned.
The day before tomorrow.
Nowadays.
This day a day that is here.
Between the past and the future.
The rising and the setting of the sun.' - Fiona Banner, Today, Portrait of a Word
Fall in love with someone who deserves your heart, and not someone who plays with it.
Buddha's widchualldeway!
You have got to do well and keep writing and broadcast this stuff to people around the net.
I'm hoping to develop a super power from undergoing CyberKnife. If not turning invisible, or transforming energy fields by manipulating excessive radiation, then maybe a bit of supertronic linguistica would be handy, enhance the spoken word, while we're at it. Russian could be hot while I'm zapping traffic lights. Would life stop being ironic with super powers?
What super powers would you want?
PS. fuck those fuckers.
Rebirth & Resurrection
April 11, 2009
In the recent years, Easter has become symbolic on numerous levels to me. A time of death and resurrection according to the biblical calendar, it has marked several beginnings of significant changes in my life.
Easter 2002: Arrival to Shanghai
Easter 2008: Return to Shanghai after an 8-month health hiatus due to cancer
Easter 2009: Discovery of more tumours in my brain
Scorpio Horoscope for week of April 9, 2009
If you ever wanted to learn how to do lucid dreams or out-of-body travel or shamanic explorations that help you retrieve lost portions of your soul, this is an excellent time to begin. You're in an astrological phase when the veil between this world and the other side is thinner than usual, and that means you could make connections that haven't been possible before. If the things I mentioned in the beginning are too woo-woo or scary for you, there are other ways to take advantage of current conditions. First, you could conduct productive imaginary conversations with the spirits of dead friends and relatives. Second, you could do intense meditations in which you imprint the future with scenarios you'd love to see come to pass. And third, you'll probably be able to incubate a highly informative dream by asking your unconscious mind a well-formulated question that you'd love to get guidance about.
Questions: if these tumours — my cancer — are only symptoms, because they just don't seem to end, then what is the real disease? Am I supposed to 'transition' to the other side before experiencing rebirth?
This Easter also happens to end Young Adult Cancer Awareness Week. I am aware, more than ever. Yet I still am not.
Thank you for your prayers, I know I am in your thoughts. Would love to hear from you, but email or text: I will be in and out of hospital in the next coming weeks and won't be able to answer voice calls.
Easter 2002: Arrival to Shanghai
Easter 2008: Return to Shanghai after an 8-month health hiatus due to cancer
Easter 2009: Discovery of more tumours in my brain
Scorpio Horoscope for week of April 9, 2009
If you ever wanted to learn how to do lucid dreams or out-of-body travel or shamanic explorations that help you retrieve lost portions of your soul, this is an excellent time to begin. You're in an astrological phase when the veil between this world and the other side is thinner than usual, and that means you could make connections that haven't been possible before. If the things I mentioned in the beginning are too woo-woo or scary for you, there are other ways to take advantage of current conditions. First, you could conduct productive imaginary conversations with the spirits of dead friends and relatives. Second, you could do intense meditations in which you imprint the future with scenarios you'd love to see come to pass. And third, you'll probably be able to incubate a highly informative dream by asking your unconscious mind a well-formulated question that you'd love to get guidance about.
Questions: if these tumours — my cancer — are only symptoms, because they just don't seem to end, then what is the real disease? Am I supposed to 'transition' to the other side before experiencing rebirth?
This Easter also happens to end Young Adult Cancer Awareness Week. I am aware, more than ever. Yet I still am not.
Thank you for your prayers, I know I am in your thoughts. Would love to hear from you, but email or text: I will be in and out of hospital in the next coming weeks and won't be able to answer voice calls.
Cancer Circus Pt II
April 07, 2009
How does a mother spend her birthday when her daughter is diagnosed with cancer? Or undergoes life-threatening surgery?
Part I of this entry here.
After discovering a tumour from an ad hoc scan in September 2007, my parents and I met with emergency consultation the day we were scheduled to fly out to Europe for a family reunion on the Mediterranean. We met with the thoracic specialist early that Friday morning, solemn and hopeful. From the results of tests carried out the previous day, it was determined quite clearly that there was a tumour in my chest, of a size and location definitely considerable for surgical removal: the mass was obstructing the superior vena cava, condition known as SVCO (obstruction), restricting blood flow, and hence I was congested chest up. For visible symptoms to be so exaggerated — even though the good doctor only had my Dad's wallet-size family portrait of the 14 year-old me to compare — the pressure caused by the tumour was more than substantial, even dangerous. I processed the idea that every time I lied down to sleep, completely horizontally, without propping up my head and chest, there was a chance I could've slipped into a coma.
I now think about that, sometimes. Before I fall asleep, with my eyes closed, I wonder, seriously, what if I don't wake up? But that's a whole list of what ifs.
Apart from the biopsy scheduled for that same day, to ascertain histology of the tumour, and the PET scan arranged for the following Monday for an all-over screening, surgery to remove the damn thing was also 'penciled in' for Tuesday. Regardless of what this mass is, whether parts of it have congregated elsewhere, it is too large, and already jeopardising major bodily functions for it not to be removed. And if the internationally renowned expert in minimally invasive surgery believes this isn't a procedure to be done minimally, then I guess there's no choice but to get right in there.
I remember everyone tiptoed around the label 'cancer', it was the unspeakable, the dirty word. Not knowing at that point whether the tumour was benign or malignant, we were still in shock with everything happening so fast that we couldn't quite wrap our heads around the idea of the big C.
I was admitted into hospital straight after the consultation, mainly so I could sleep with my upper body raised. We often referred, unconsciously, to Union Hospital as the 'hotel'. With in-room fridge (no, not exactly a mini-bar), LCD TV with cable, DVD player, wireless internet, bath toiletries from Kiehl's, and a choice of morning newspaper, optional private nurse and bodyguard at admission, it sure as hell felt like a 5-star luxury retreat. We, of course, had a room with a view.
Ann arrived from London on Friday evening, concerned, but relieved to be able to share the apprehension and confusion my parents and I were going through. Our poor brother, on the other hand, hit jackpot scoring air miles. Despite his discovering the change of plans while on transit in Dubai, he still had to fly to Venice, and back, since his luggage was transferred directly from Australia to Italy. Four days of airport transfers, an overnight stay in Venice — at a fully booked hotel where he had to reinstate accommodation on site which we had over zealously cancelled from London — and more layovers at Dubai International later, he arrived at the hospital, worn out and unshaven, looking very much like a terrorist.
My mother accepted birthday phone calls and wishes only in brief that day, keeping conversations sweet and short. It was also her way of dealing — one of her children's constitution is under attack, the family is reeling in shock, the birthday can 'jolly well' wait.
By the weekend, my parents announced the situation to our extended family, and I called a selected few friends personally to share news of the impending surgery. It's strongly believed in my family never to impart negative news to those in celebration, a Chinese tradition that we adhere to quite earnestly. I remember the conversation online with my dear friend, Chris, on the eve of surgery, was especially difficult. It was his birthday and I didn't want to avoid chatting with him, to miss out on wishing him the best on his special day, but it was tough skirting questions like 'Why aren't you sailing through the Mediterranean already?' To prevent unnecessary concern, my usual tact, I expressly didn't want the situation to be widely publicised until after the procedure, which I believed without a doubt would be completely successful. Even then, I held off directly notifying friends celebrating arrivals of newborn, or those on nuptials.
We filled a full room that Sunday when the entire Leung family gathered for dim sum brunch. I felt a strong sense of support and generosity from my aunties, uncles, and cousins. The eyeliner that day wouldn't glide on because my eye lids, too, were swollen. Along the same vein, or rather, the lack of one, the needle for the scan the following day was administered in my left inner ankle, since my arms were too engorged to find blood flow superficially. A prick in the foot is not so newsworthy when one has their feet up, but walking back and forth to the bathroom with a needle up my ankle to pass out contrast fluid was just bloody annoying.
September 25 of 2007 was Mid-Autumn festival, also my mother's lunar birthday, and just five days since initial diagnosis. I woke up early to get ready for surgery, and wished Mom a 'happy birthday' for the second time since the weekend. She had stayed with me at the hospital the night before, on the fold-out sofa for visitors, another perk at the 'hotel'. I took extra time looking at myself in the mirror that evening, flattening my open palm against the skin in the centre of my chest, lingering over the smoothness, savouring over the even skin, accepting from the next day onwards, I would be scarred, for life.
A mediastinal sternotomy is surgical incision of the sternum — yes, ripping open the bone that is the central pillar connecting and supporting the rib cage — through to the partition between the left and right thoracic cavities. With the size and location of the tumour, the cut would begin from just beneath my collar bone, then all the way down to the end of the sternum. Nine raw inches down my front.
Everything was hazy when I woke up. I heard voices first, even while the bed was moving. The nurses and the anesthetist were telling me to wake up. My first thought was that I couldn't breathe, probably due to the heaviness I felt in my chest. When the bed was still, I took stock of my surroundings, and then registered I was in the ICU. I laid still, and despite being too weak and numb to feel much, I knew there were tubes coming out of me: a drip in right arm; drainage tube on the right beneath the rib cage; catheter from between my thighs; something going on in my left ankle; and an injection pod on my left wrist. I stared down my front which was bandaged very lightly and neatly, but it felt incredibly heavy, almost oppressive, like a breast plate of a gladiator's armour.
The lighting in the room was disorientingly dark, I couldn't place what time of day it was. I first saw Joey and Dad, who announced that I had just won a huge battle. Then Mom and Ann. From their expressions, their intense concern, I sensed that something went beyond expectations. What happened? Mom began to speak but was so muddled and convoluted in her overwhelmed state that I just turned to Ann for complete sentences. Instead, the only thing I remember before slipping into morphine oblivion was something ethereal, a distinct physical presence on the left of the bed. It was so strong that I specifically stared at the empty spot on the floor. It was a warm, kind and loving energy. It was male, and elderly.
It was later recounted to me that the 7 hours I slept through in surgery were nothing short of a miracle. What the attending surgeon saw once I was carved open was much larger and positioned much worse than the relatively simple tumour resection that he had anticipated. The tumour, 9 cm in diametre, was situated so that it could not have been clearly and entirely detected via imaging, and had invaded into part of the superior vena cava, as well as connecting sections of major blood vessels leading to the head. He had to break away from the theatre, consult with my parents explaining the situation and offered one option: close me back up directly, administer chemo in the hope of reducing the size of the tumour, with a prognosis of just 6 months. That, to my parents, was not an option at all.
The idea of removing the damaged sections of the veins and transplanting a synthetic graft was then conceived, and my parents were required to authorise separate consent for the procedure on my behalf. The complex nature of the procedure at the most intricate area of anatomy meant the attending could not undertake this surgery on his own. It just so happened, a trusted colleague — another distinguished surgeon — was supervising in the neighbouring theatre, and could immediately scrub into mine. The hospital was not equipped with a graft of this particular shape, but there just so happened to be a suitable Y-shape ready and available at a nearby hospital. There also just so happened to be enough compatible blood reserves for my extended time (from the original plan of only 2 hours) under the knife.
I, it just so happened, lived.
On this same day of surgery, the spawn laid in Dad's aquarium hatched into hundreds of little fishes.
Part I of this entry here.
After discovering a tumour from an ad hoc scan in September 2007, my parents and I met with emergency consultation the day we were scheduled to fly out to Europe for a family reunion on the Mediterranean. We met with the thoracic specialist early that Friday morning, solemn and hopeful. From the results of tests carried out the previous day, it was determined quite clearly that there was a tumour in my chest, of a size and location definitely considerable for surgical removal: the mass was obstructing the superior vena cava, condition known as SVCO (obstruction), restricting blood flow, and hence I was congested chest up. For visible symptoms to be so exaggerated — even though the good doctor only had my Dad's wallet-size family portrait of the 14 year-old me to compare — the pressure caused by the tumour was more than substantial, even dangerous. I processed the idea that every time I lied down to sleep, completely horizontally, without propping up my head and chest, there was a chance I could've slipped into a coma.
I now think about that, sometimes. Before I fall asleep, with my eyes closed, I wonder, seriously, what if I don't wake up? But that's a whole list of what ifs.
Apart from the biopsy scheduled for that same day, to ascertain histology of the tumour, and the PET scan arranged for the following Monday for an all-over screening, surgery to remove the damn thing was also 'penciled in' for Tuesday. Regardless of what this mass is, whether parts of it have congregated elsewhere, it is too large, and already jeopardising major bodily functions for it not to be removed. And if the internationally renowned expert in minimally invasive surgery believes this isn't a procedure to be done minimally, then I guess there's no choice but to get right in there.
I remember everyone tiptoed around the label 'cancer', it was the unspeakable, the dirty word. Not knowing at that point whether the tumour was benign or malignant, we were still in shock with everything happening so fast that we couldn't quite wrap our heads around the idea of the big C.
I was admitted into hospital straight after the consultation, mainly so I could sleep with my upper body raised. We often referred, unconsciously, to Union Hospital as the 'hotel'. With in-room fridge (no, not exactly a mini-bar), LCD TV with cable, DVD player, wireless internet, bath toiletries from Kiehl's, and a choice of morning newspaper, optional private nurse and bodyguard at admission, it sure as hell felt like a 5-star luxury retreat. We, of course, had a room with a view.
Ann arrived from London on Friday evening, concerned, but relieved to be able to share the apprehension and confusion my parents and I were going through. Our poor brother, on the other hand, hit jackpot scoring air miles. Despite his discovering the change of plans while on transit in Dubai, he still had to fly to Venice, and back, since his luggage was transferred directly from Australia to Italy. Four days of airport transfers, an overnight stay in Venice — at a fully booked hotel where he had to reinstate accommodation on site which we had over zealously cancelled from London — and more layovers at Dubai International later, he arrived at the hospital, worn out and unshaven, looking very much like a terrorist.
My mother accepted birthday phone calls and wishes only in brief that day, keeping conversations sweet and short. It was also her way of dealing — one of her children's constitution is under attack, the family is reeling in shock, the birthday can 'jolly well' wait.
By the weekend, my parents announced the situation to our extended family, and I called a selected few friends personally to share news of the impending surgery. It's strongly believed in my family never to impart negative news to those in celebration, a Chinese tradition that we adhere to quite earnestly. I remember the conversation online with my dear friend, Chris, on the eve of surgery, was especially difficult. It was his birthday and I didn't want to avoid chatting with him, to miss out on wishing him the best on his special day, but it was tough skirting questions like 'Why aren't you sailing through the Mediterranean already?' To prevent unnecessary concern, my usual tact, I expressly didn't want the situation to be widely publicised until after the procedure, which I believed without a doubt would be completely successful. Even then, I held off directly notifying friends celebrating arrivals of newborn, or those on nuptials.
We filled a full room that Sunday when the entire Leung family gathered for dim sum brunch. I felt a strong sense of support and generosity from my aunties, uncles, and cousins. The eyeliner that day wouldn't glide on because my eye lids, too, were swollen. Along the same vein, or rather, the lack of one, the needle for the scan the following day was administered in my left inner ankle, since my arms were too engorged to find blood flow superficially. A prick in the foot is not so newsworthy when one has their feet up, but walking back and forth to the bathroom with a needle up my ankle to pass out contrast fluid was just bloody annoying.
September 25 of 2007 was Mid-Autumn festival, also my mother's lunar birthday, and just five days since initial diagnosis. I woke up early to get ready for surgery, and wished Mom a 'happy birthday' for the second time since the weekend. She had stayed with me at the hospital the night before, on the fold-out sofa for visitors, another perk at the 'hotel'. I took extra time looking at myself in the mirror that evening, flattening my open palm against the skin in the centre of my chest, lingering over the smoothness, savouring over the even skin, accepting from the next day onwards, I would be scarred, for life.
A mediastinal sternotomy is surgical incision of the sternum — yes, ripping open the bone that is the central pillar connecting and supporting the rib cage — through to the partition between the left and right thoracic cavities. With the size and location of the tumour, the cut would begin from just beneath my collar bone, then all the way down to the end of the sternum. Nine raw inches down my front.
Everything was hazy when I woke up. I heard voices first, even while the bed was moving. The nurses and the anesthetist were telling me to wake up. My first thought was that I couldn't breathe, probably due to the heaviness I felt in my chest. When the bed was still, I took stock of my surroundings, and then registered I was in the ICU. I laid still, and despite being too weak and numb to feel much, I knew there were tubes coming out of me: a drip in right arm; drainage tube on the right beneath the rib cage; catheter from between my thighs; something going on in my left ankle; and an injection pod on my left wrist. I stared down my front which was bandaged very lightly and neatly, but it felt incredibly heavy, almost oppressive, like a breast plate of a gladiator's armour.
The lighting in the room was disorientingly dark, I couldn't place what time of day it was. I first saw Joey and Dad, who announced that I had just won a huge battle. Then Mom and Ann. From their expressions, their intense concern, I sensed that something went beyond expectations. What happened? Mom began to speak but was so muddled and convoluted in her overwhelmed state that I just turned to Ann for complete sentences. Instead, the only thing I remember before slipping into morphine oblivion was something ethereal, a distinct physical presence on the left of the bed. It was so strong that I specifically stared at the empty spot on the floor. It was a warm, kind and loving energy. It was male, and elderly.
It was later recounted to me that the 7 hours I slept through in surgery were nothing short of a miracle. What the attending surgeon saw once I was carved open was much larger and positioned much worse than the relatively simple tumour resection that he had anticipated. The tumour, 9 cm in diametre, was situated so that it could not have been clearly and entirely detected via imaging, and had invaded into part of the superior vena cava, as well as connecting sections of major blood vessels leading to the head. He had to break away from the theatre, consult with my parents explaining the situation and offered one option: close me back up directly, administer chemo in the hope of reducing the size of the tumour, with a prognosis of just 6 months. That, to my parents, was not an option at all.
The idea of removing the damaged sections of the veins and transplanting a synthetic graft was then conceived, and my parents were required to authorise separate consent for the procedure on my behalf. The complex nature of the procedure at the most intricate area of anatomy meant the attending could not undertake this surgery on his own. It just so happened, a trusted colleague — another distinguished surgeon — was supervising in the neighbouring theatre, and could immediately scrub into mine. The hospital was not equipped with a graft of this particular shape, but there just so happened to be a suitable Y-shape ready and available at a nearby hospital. There also just so happened to be enough compatible blood reserves for my extended time (from the original plan of only 2 hours) under the knife.
I, it just so happened, lived.
On this same day of surgery, the spawn laid in Dad's aquarium hatched into hundreds of little fishes.
Cancer Circus Pt I
March 29, 2009
When I browse through the discussion groups on community forums for people dealing with cancer, I read about cancer survivors taking years to pen their stories, or extensive durations of time to work through the memories of the ordeal, the challenge, the pain, both emotional and physical, that they went through before expressing it all in print.
I, on the other hand, probably because the written word is so dear to me, because I enjoy writing so much, had consistently written about my experience throughout the last year and more, albeit in fragments, mainly to friends and family as email updates in response to all the well wishes that I so fortunately received. Writing has always been my therapy, and communication to my loved ones was as effective a patient journal as writing to myself, if not more uplifting.
It's been over a year and half since September, 2007, and I want to summarily review what happened, this time of my life that I coin 'cancer circus'. It's been on my subconscious to-do-list all this time, marinading more each night I lay my head on the pillow, gathering more layers each commute on the subway. As therapy. Before I forget. For posterity.
Fasten your seat belts.
The first indication of me being symptomatic, I remember, was PT observing how my face was the roundest he had ever seen under the trilby hat I wore to the Shanghai Contemporary of 2007, which took place the first week of September. He thought I had just been for a hair cut, and that he was being remiss in remarking it, as I often berate him for not noticing.
I also recall some time after that, an intimate encounter left me quite literally breathless. He was of average height and build, but his body that so ordinarily weighed upon my chest had me feeling crushed and suffocating, so much that we had to stop. Hot and heavy indeed, but definitely not sexy. When I saw my reflection in the mirror, I was deeply flushed, swollen along my jaw line, down my neck and chest.
I remember as well, prior to that, from August, every morning as I stepped out of the shower, I started feeling a tightness around my chest, a heaviness that made it difficult to breathe. It was very obviously a physical feeling, but I had attributed it to the devastated, distraught state of mind I was in. My emotions were entangled amidst despair and disappointment resulting from hurtful, disloyal acts of betrayal from people I had considered friends. I cried for two weeks, my chest heaved, but the physical pain was masked by the unbearably overwhelming emotional distress. My heart was broken, I told myself, and was convinced that I was experiencing psychosomatic symptoms. Melodramatic, as usual. Mind over matter, as I am living proof.
From an email I wrote during this episode, 'Tomorrow I shall wake up without the lump in my throat, and will breathe freely again.'
Ironically, my horoscope for that week:
Don't cling. Don't be grasping or anxious. Instead, do what is potentially every Scorpio's specialty: Die and be reborn every day. Again and again, kill off the magic that's working so well and artfully resurrect it in a transformed version.
By mid-September, I accepted that I was physically unwell, but remained unalarmed. My face was engorged, my chest congested, my neck had grown to a trunk, and I was physically exhausted, all classic symptoms of thoracic tumours. However, growing up under the loving, doting care of parents who are also medical professionals, I had always taken my health for granted. Except for a deep cut on my shin that required stitching and antibiotics (and only received an alcoholic swab and bandage since I was unperturbed), I never sought medical assistance throughout my seven years in Shanghai. And since I was soon joining my parents in Hong Kong to set off to Europe together for our family reunion in the Mediterranean arranged long ago, I knew I could consult my father soon enough about my inflated face.
Dad had already scheduled for the X-ray and CT scan for me that afternoon I arrived in Hong Kong. As I moved between the machines in the lab, I heard hushed conversations between my father and the lab technicians, discretely discussing the foreboding, instantaneous results. He wore an expression that was solemn, but restrained enough for me to read concern through his eyes. He wore that look on several occasions in the months to come. I understood not to question at that point, but to wait until we were alone. If I am perceived by some as impatient, I behaved then as I always expected myself would in times of adversity: calm and collected. Was I afraid? No, my father is here, I will be fine.
I got into the car before Dad did, and the fact that he stalled to finish the phone conversation with Mom before getting in himself was ominous. He was aware I was watching him from the front passenger seat, confused. When is it acceptable for a doctor to disclose information of a patient with his wife before he does so to the patient? When the patient is their child, even if the child is an able adult of 31 years old.
I had not yet begun my questions before Dad's phone rang again. It was a doctor, a peer, returning his call. Dad had tried to reach him for a referral for a thoracic specialist. I hadn't even heard of that label before that moment. He rang off with banter and conversation, responding that we won't be boarding the flight to Venice the following day to get on that cruise. Bless my father, he never knew how to avoid telling it straight up.
We're not leaving tomorrow? No, there appears to be a tumour in your chest. We are seeing a thoracic specialist tomorrow morning at nine o'clock.
The shock sank in only then. But only the part that I was not well enough to travel. Why can't we go on the cruise and then come back and see the specialist? I tried to insist. All I could think of was my mother's cruise-planning efforts for the last six months, and all of us scheduling our lives separately in Shanghai, Hong Kong, London, and Sydney to make this happen, so that we can get on a boat and sail through the Greek Islands. But Ann and Joey really want to go, too. It's not fair for them. I pleaded. Dad was gentle, as he always is, and assured me that if there's nothing of concern after seeing the specialist, then we will be traveling very soon.
I wasn't unsettled throughout the ride home, just a little surreal, still trying to wind my head around the idea that we were not getting on a plane the next day. It was only when I saw my mother, her face flushed from crying, that I realised the gravity of the situation. She was on the phone with Ann in London, and handed over the handset. I'm sorry, Ann! I really wish we were going on the cruise. Oh, you're coming here instead? You don't have to. I'm sure I'll be fine. I was still feeling guilty from derailing everyone's plans and even tried to persuade her not to come, she might want to use the leave she applied for from work to go somewhere else. She was adamant, though, and rightly so. I would not have made it without my family around me.
When Mom held me, I cried, because she was crying, too. I apologised again for ruining our travel plans, and she, too, reassured me that we are only postponing our plans for now. My parents and I sat down and tried to digest the information before us. There is a mass in my chest, the size of a tennis ball. It appears to be located between the lungs, where the thymus is. There were questions, of course, but they were held back, like inquisitive paparazzi cordoned off by common sense not to invade my composure with their freneticism. I didn't see the point of histrionics when we didn't have all the facts required to react.
Dinner that night was the epitome of the calm before the storm — we were a reality show that was too practical or too civilised to bring in the ratings. We wondered whether my brother, Joey, was on board a flight to Venice via Dubai, since we had not been able to reach him. We ran through the list of hotels and agents that needed to be contacted for our derailment due to 'sudden, unforeseen personal circumstances', in Prague, St Petersburg. We discussed matter-of-factly what time we would be setting out in the morning for the early appointment with the specialist, and the route to take to the hospital. If there were tension or apprehension in the air, I didn't feel it. I wanted answers, and they'd just better be good, or bad, for us to miss the damned cruise. And the Burj in Dubai.
I slept soundly that night. I know I dreamt, but of what, I don't recall.
I, on the other hand, probably because the written word is so dear to me, because I enjoy writing so much, had consistently written about my experience throughout the last year and more, albeit in fragments, mainly to friends and family as email updates in response to all the well wishes that I so fortunately received. Writing has always been my therapy, and communication to my loved ones was as effective a patient journal as writing to myself, if not more uplifting.
It's been over a year and half since September, 2007, and I want to summarily review what happened, this time of my life that I coin 'cancer circus'. It's been on my subconscious to-do-list all this time, marinading more each night I lay my head on the pillow, gathering more layers each commute on the subway. As therapy. Before I forget. For posterity.
Fasten your seat belts.
The first indication of me being symptomatic, I remember, was PT observing how my face was the roundest he had ever seen under the trilby hat I wore to the Shanghai Contemporary of 2007, which took place the first week of September. He thought I had just been for a hair cut, and that he was being remiss in remarking it, as I often berate him for not noticing.
I also recall some time after that, an intimate encounter left me quite literally breathless. He was of average height and build, but his body that so ordinarily weighed upon my chest had me feeling crushed and suffocating, so much that we had to stop. Hot and heavy indeed, but definitely not sexy. When I saw my reflection in the mirror, I was deeply flushed, swollen along my jaw line, down my neck and chest.
I remember as well, prior to that, from August, every morning as I stepped out of the shower, I started feeling a tightness around my chest, a heaviness that made it difficult to breathe. It was very obviously a physical feeling, but I had attributed it to the devastated, distraught state of mind I was in. My emotions were entangled amidst despair and disappointment resulting from hurtful, disloyal acts of betrayal from people I had considered friends. I cried for two weeks, my chest heaved, but the physical pain was masked by the unbearably overwhelming emotional distress. My heart was broken, I told myself, and was convinced that I was experiencing psychosomatic symptoms. Melodramatic, as usual. Mind over matter, as I am living proof.
From an email I wrote during this episode, 'Tomorrow I shall wake up without the lump in my throat, and will breathe freely again.'
Ironically, my horoscope for that week:
Don't cling. Don't be grasping or anxious. Instead, do what is potentially every Scorpio's specialty: Die and be reborn every day. Again and again, kill off the magic that's working so well and artfully resurrect it in a transformed version.
By mid-September, I accepted that I was physically unwell, but remained unalarmed. My face was engorged, my chest congested, my neck had grown to a trunk, and I was physically exhausted, all classic symptoms of thoracic tumours. However, growing up under the loving, doting care of parents who are also medical professionals, I had always taken my health for granted. Except for a deep cut on my shin that required stitching and antibiotics (and only received an alcoholic swab and bandage since I was unperturbed), I never sought medical assistance throughout my seven years in Shanghai. And since I was soon joining my parents in Hong Kong to set off to Europe together for our family reunion in the Mediterranean arranged long ago, I knew I could consult my father soon enough about my inflated face.
Dad had already scheduled for the X-ray and CT scan for me that afternoon I arrived in Hong Kong. As I moved between the machines in the lab, I heard hushed conversations between my father and the lab technicians, discretely discussing the foreboding, instantaneous results. He wore an expression that was solemn, but restrained enough for me to read concern through his eyes. He wore that look on several occasions in the months to come. I understood not to question at that point, but to wait until we were alone. If I am perceived by some as impatient, I behaved then as I always expected myself would in times of adversity: calm and collected. Was I afraid? No, my father is here, I will be fine.
I got into the car before Dad did, and the fact that he stalled to finish the phone conversation with Mom before getting in himself was ominous. He was aware I was watching him from the front passenger seat, confused. When is it acceptable for a doctor to disclose information of a patient with his wife before he does so to the patient? When the patient is their child, even if the child is an able adult of 31 years old.
I had not yet begun my questions before Dad's phone rang again. It was a doctor, a peer, returning his call. Dad had tried to reach him for a referral for a thoracic specialist. I hadn't even heard of that label before that moment. He rang off with banter and conversation, responding that we won't be boarding the flight to Venice the following day to get on that cruise. Bless my father, he never knew how to avoid telling it straight up.
We're not leaving tomorrow? No, there appears to be a tumour in your chest. We are seeing a thoracic specialist tomorrow morning at nine o'clock.
The shock sank in only then. But only the part that I was not well enough to travel. Why can't we go on the cruise and then come back and see the specialist? I tried to insist. All I could think of was my mother's cruise-planning efforts for the last six months, and all of us scheduling our lives separately in Shanghai, Hong Kong, London, and Sydney to make this happen, so that we can get on a boat and sail through the Greek Islands. But Ann and Joey really want to go, too. It's not fair for them. I pleaded. Dad was gentle, as he always is, and assured me that if there's nothing of concern after seeing the specialist, then we will be traveling very soon.
I wasn't unsettled throughout the ride home, just a little surreal, still trying to wind my head around the idea that we were not getting on a plane the next day. It was only when I saw my mother, her face flushed from crying, that I realised the gravity of the situation. She was on the phone with Ann in London, and handed over the handset. I'm sorry, Ann! I really wish we were going on the cruise. Oh, you're coming here instead? You don't have to. I'm sure I'll be fine. I was still feeling guilty from derailing everyone's plans and even tried to persuade her not to come, she might want to use the leave she applied for from work to go somewhere else. She was adamant, though, and rightly so. I would not have made it without my family around me.
When Mom held me, I cried, because she was crying, too. I apologised again for ruining our travel plans, and she, too, reassured me that we are only postponing our plans for now. My parents and I sat down and tried to digest the information before us. There is a mass in my chest, the size of a tennis ball. It appears to be located between the lungs, where the thymus is. There were questions, of course, but they were held back, like inquisitive paparazzi cordoned off by common sense not to invade my composure with their freneticism. I didn't see the point of histrionics when we didn't have all the facts required to react.
Dinner that night was the epitome of the calm before the storm — we were a reality show that was too practical or too civilised to bring in the ratings. We wondered whether my brother, Joey, was on board a flight to Venice via Dubai, since we had not been able to reach him. We ran through the list of hotels and agents that needed to be contacted for our derailment due to 'sudden, unforeseen personal circumstances', in Prague, St Petersburg. We discussed matter-of-factly what time we would be setting out in the morning for the early appointment with the specialist, and the route to take to the hospital. If there were tension or apprehension in the air, I didn't feel it. I wanted answers, and they'd just better be good, or bad, for us to miss the damned cruise. And the Burj in Dubai.
I slept soundly that night. I know I dreamt, but of what, I don't recall.
The Power of Snail Mail
March 18, 2009
Just as I was marveling at the power of personal (postal) mail and pondering how to express my awe and wonder, I receive a parcel in the mail. I so dig it when the Universe listens to me!
In this modern age of electronic communication, of 3G, 3D, digital telephony, when legal papers may be arranged via Facebook, when a man is able to divorce his wife via SMS, when phone texting is already considered more personal than email, nothing quite beats the good old-fashioned, handwritten correspondence and packages by post.
Today, I received a thoughtful package from Delaware, USA, containing a 2-page hand-printed note that was caring and attentive, accompanied by a customised DVD of favourite films and personal playlists. Last week, it was Darrell Lea rocky road, and caramel fudge from a highschool friend in Sydney (a most well-intended surprise before I could post scribe to my previous entry that I now limit my sugar intake ) which I eagerly shared with friends. Just when I arrived in HK, this odd-eyed striped frog from Buones Aires showed up in a 'tough bag' courtesy of the Australia post. All penned notes enclosed, dispatched with love.
Over the last 1.5 years, I have received packages from afar, large and small, music compilations (direct from Warner Music HQ no less), books, lingerie (whether that works for other cancer patients, I can't say), more frogs and just enough greeting cards and letters that still leave me ecstatic with joy — literally clapping hands — every time I am the happy recipient of snail mail. The sheer surprise, the pure exhilaration from just knowing the time, effort and thought committed to the process of making it all a reality never ceases to elate me.
US First Class Mail International for postcards: US $0.94
Care package of handwritten note and/or chocolates/CD/DVD/hand lotion/book: under US $20
Intention, love, energy investment from initial idea to eventual delivery: P.R.I.C.E.L.E.S.S.
And I give as good as I get.
Some of you know I've always LOVED writing letters, even 'aerogrammes' way back when. From pen-pals in France to cousins in UK boarding schools as a teenager, and now addressing discrete PO boxes to entrusting Her Majesty's diplomatic bag to Sri Lanka, I've just never stopped writing. More to the point, I adore the sight of my own hand-writing: If I look good in print, I'm the bomb in long hand, especially love letters. Yes, the long distance kind, you know what I mean.
Through Chemo Angels, I also write at least once a week to a patient undergoing chemotherapy. Despite my increasing abhorrence for the treatment, I have only respect and empathy for those who are experiencing the effects of this toxic therapy, on top of the challenges brought on by cancer itself. With these, and once in a while, these (attitude attached), I write to my brave patients not with the expectation of a response, only the hope that my supportive messages bring a smile. Or a few.
While in Shanghai, I've especially enjoyed sending Chinese New Year greeting cards, partly because Christmas cards were never available until quite recently, but also because any one of the twelve animals for the year, in sheet metal stencil or paper cut renditions rank much higher in curio factor over the stocking, snow or Santa.
From the literal love I received today:
Be peace, be health, be the Rae of Light.
So, want to exchange mailing addresses?
In this modern age of electronic communication, of 3G, 3D, digital telephony, when legal papers may be arranged via Facebook, when a man is able to divorce his wife via SMS, when phone texting is already considered more personal than email, nothing quite beats the good old-fashioned, handwritten correspondence and packages by post.
Today, I received a thoughtful package from Delaware, USA, containing a 2-page hand-printed note that was caring and attentive, accompanied by a customised DVD of favourite films and personal playlists. Last week, it was Darrell Lea rocky road, and caramel fudge from a highschool friend in Sydney (a most well-intended surprise before I could post scribe to my previous entry that I now limit my sugar intake ) which I eagerly shared with friends. Just when I arrived in HK, this odd-eyed striped frog from Buones Aires showed up in a 'tough bag' courtesy of the Australia post. All penned notes enclosed, dispatched with love.
US First Class Mail International for postcards: US $0.94
Care package of handwritten note and/or chocolates/CD/DVD/hand lotion/book: under US $20
Intention, love, energy investment from initial idea to eventual delivery: P.R.I.C.E.L.E.S.S.
And I give as good as I get.
Some of you know I've always LOVED writing letters, even 'aerogrammes' way back when. From pen-pals in France to cousins in UK boarding schools as a teenager, and now addressing discrete PO boxes to entrusting Her Majesty's diplomatic bag to Sri Lanka, I've just never stopped writing. More to the point, I adore the sight of my own hand-writing: If I look good in print, I'm the bomb in long hand, especially love letters. Yes, the long distance kind, you know what I mean.
Through Chemo Angels, I also write at least once a week to a patient undergoing chemotherapy. Despite my increasing abhorrence for the treatment, I have only respect and empathy for those who are experiencing the effects of this toxic therapy, on top of the challenges brought on by cancer itself. With these, and once in a while, these (attitude attached), I write to my brave patients not with the expectation of a response, only the hope that my supportive messages bring a smile. Or a few.
While in Shanghai, I've especially enjoyed sending Chinese New Year greeting cards, partly because Christmas cards were never available until quite recently, but also because any one of the twelve animals for the year, in sheet metal stencil or paper cut renditions rank much higher in curio factor over the stocking, snow or Santa.
From the literal love I received today:
Be peace, be health, be the Rae of Light.
So, want to exchange mailing addresses?
Food with Love
March 09, 2009
One of the FAQ I get: what is my current diet?
90% vegetables, fruits and nuts, both cooked and raw. The rest is a mixed bag of fish, also both cooked and raw, (not seafood, but maybe a prawn here and there) and complex proteins that I simply cannot resist picking at when presented at my table: roast duck, pigeon, chicken feet, duck tongue, cheese, eggs. Yes, I'm prime candidate for avian flu. I mourned the scrumptious loss of roast geese when live flocks were 'ingested' by both engines of the Airbus A320 before being minced then marinaded in the Hudson River.
Along with supplements of vitamin E and flax seed oil (both 1000 mg soft gels), I follow a nutritional juice regimen (吳永志: 不一樣的自然養生法), the brainchild of renowned doctor in natural medicine and fellow lung cancer survivor, Dr. Tom Wu, that has me drinking a refreshing glass of raw mixed fruits and veggie juices (refined pulp, pit & all) three times a day. I also try to eat at least one completely raw, organic meal and drink at least 2 litres of water every day. (Avoid distilled water since this is acidic.)
I favour fresh salad dressings with a kick, mustard or vinaigrette. Here's a simple favourite with fresh garlic. Where I have left out measurements, use common sense and your mood.
Ingredients:
| Organic Veggies & Fruit: | Nuts & Dairy: | ||
| • Romaine lettuce | • Ground pine nuts | ||
| • Sugar snap peas, halved | • Chopped walnuts | ||
| • Fresh chives, with spears, par-steamed | • Feta (unmarinaded) or Goat's cheese cubes | ||
| • Cherry tomatoes, halved | |||
| • 1 Green apple, diced | |||
| • Blueberries |
| • 3 cloves of raw garlic, ground | • Mix lime juice with ground garlic and onions | ||
| • 3 small raw Spanish onions, ground | • Soak for two minutes | ||
| • Juice of 2 fresh limes | • Add balsamic vinegar, sea salt | ||
| • Balsamic vinegar | • Mix well and marinade for at least 10 minutes | ||
| • Pinch of sea salt | • Add olive oil, ground black pepper, mix well | ||
| • Olive oil | • Pour dressing onto salad, nuts & cheese | ||
| • Ground black pepper | • Toss and serve with LOVE |
Other yummy, healthy ingredients:
- Tuna sashimi chunks
- Fine caviar. Maybe not so healthy, but great for colour.
- Baby spinach, cucumber
- Pumpkin, par-cooked, avocado
- Almonds, white sesame
Have nutritional, healthy lifestyle tips to share? What vitamins and supplements have you found useful?
PS. I'm also trying my utmost to eliminate excess sugar from my diet, which is wise for anyone with cancer, but especially since tumours are now found in the pancreas in my case. I have also begun one of the natural alternatives to cancer treatment, Essiac, a herbal supplement from Canada, as well as trying out the combination of cottage cheese and flax seed oil as recommended by the Budwig protocol.
The Face that Launched a Thousand Tears
March 03, 2009
And it stung even more after the tears dried.
There were nights after I popped the pill (at USD 90 a pop, you'd think they'd throw in a ride) I'd wish I didn't have to wake up in the morning, because I knew I wouldn't be able to open my eyes completely.
The blotchiness since Day 5 had subsided substantially, but the dry skin persisted, and on came the acne. Or pseudo-acne, since all facial oils moistening the epidermis are sucked dry. It wasn't vanity pushing me to despair, but the sheer inability to focus and concentrate on anything longer than twenty minutes because the physical discomfort around my eyes, nose, corners of my mouth, my cheeks was just too distracting, frustrating: almost all of the five senses were constantly aggravated and angrily screaming for relief. I don't remember a more emotionally challenging time since Law School.
Low immunity resulting in a cold I couldn't kick for a week — along with nose bleeds from a legal drug, how far down the glam scale have I sunk?! — teamed with low energy had me chucking a tantrum at my mother over the phone, wailing petulantly, 'I don't want cancer anymore!' like it were Brussels sprouts. Like I had a choice.
There were nights when I realised that I craved the non-sexual physical intimacy, the kind I am least familiar with, that I knew would soothe me emotionally, that through the corporal, through touch, body heat, and more tears, the mind would accept it will all be OK. I am lucky to have experienced what I sought, under no pretense, no misunderstanding, just pure, unadulterated giving, with trust and strength. He held me as I wept, as I relaxed and unloaded weeks of sentimental anxiety. He cradled my stinging face in his large, warm, calming palms. He spooned me while I nestled into his engulfing, welcoming embrace. He whispered into my neck that he had faith in me. I was cocooned in kindness, security, love. I believed.
The boy is also honest. "You're not pretty now, but you will be soon." Oh, yes! And no, his blunt candor was not the reason why it hadn't worked out between us. Thank you, sweetie. You are special.
It looks like 'soon' has already arrived! Following a skin regime that Ann dug up for me online (though the author of that useful wisdom didn't quite make it), my doting parents stocked up on just about every type of organic skin care product with aloe vera for me and displayed it all apothecary-style in my room. Now I can finally smile without aging 5 years around my eyes! Together with the warmer temperature in Hong Kong, humidity in the atmosphere, the new nutritional juice regimen as well as the toughest initial weeks of therapy over, I am regaining spirit in the transition back in my parents' home and even venturing into make-up again!
After packing 54 boxes — I supervised — shipping 8 m³ of only personal effects (no furniture) to storage, mailing 3 extra large boxes via China Post, then flying with 77 kg of Summer wardrobe, I did it. I left my beloved apartment, left Shanghai after 7 full years of adult life. It will be a time before Shanghai leaves me yet.
I have another month of therapy before the next scan to determine where we are on this cycle, but the worst should be over, and I'm game and ready to roll. Get in touch and join me here in Hong Kong for any or all of Art Walk, Arts Festival, Literary Festival, Film Festival and my favourite opera, Carmen!
Again, thank you for reading. Blogging allows me to respond to many personal FAQ, communicate creatively and therapeutically my health status (yes, I do get lazy with fan mail) as well as everything else I want to express. Knowing that my words reach you keeps me writing. Launch laughter rather than tears, inspire me with your comments, and do spread the love!
Day 5
February 09, 2009
rash, diarrhea, anorexia, fatigue, dyspnea, cough, nausea, infection, vomiting, stomatitis, pruritus, dry skin, conjunctivitis, keratoconjunctivitis sicca, abdominal pain, decreased weight, edema, pyrexia, constipation, bone pain, myalgia, depression, dyspepsia, dizziness, headache, insomnia, alopecia, anxiety, neuropathy, flatulence, rigors.
I wouldn't think depression is so much a side effect of the medication I am taking right now as initial reaction to the list of side effects themselves. Who wouldn't be depressed just looking at this list?
Should 'indecisiveness' be included, if I could be diarrhetic and constipated at the same time? At which point does the flatulence happen then? And if there's already weight loss, then why do I need anorexia?!
Recovering from surgeries and radiotherapy are a walk in the park, a dip in the pool even, compared to the hell I went through as a few of the above side effects kicked in on Day 5 of my target therapy this past weekend.
A B S O L U T E U T T E R H E L L
My face felt like I popped my head into a burning fire, dry, so very dry, that the skin started flaking off. Pain. Keeping my eyes open was painful since I was stretching the dry skin of the eye lids; talking or eating hurt since the corners of my mouth were cracking. I was so frighteningly red and blotchy that every time I looked at myself in the mirror, I wept. Spraying water soothed it temporarily, but dried it even more after the moisture had gone. Everything I used, ultra-sensitive facial moisturizers, after sun lotion, aloe vera gel, shea butter, all either stung from too much fragrance, or did not absorb at all to relief the dryness.
For me, pain often brings weakness. And so, the floodgates opened. Why? Why is this happening to me? Why am I taking such toxic medication? How can something so damaging help me heal? What have I done to deserve this? Wasn't I ever good enough?
The same senseless questions that bombard anyone afflicted with (perceived) tragedy or trauma. I'm only mortal.
Then another look into the mirror broke the mood and had me giggling. I ran to Ann - who has now returned to London, whom I miss very much - and announced that I don't have cancer, I'm just a muff-diver with an allergy. Right, too much L Word.
The next day, I woke up, still pretty much in the same condition, my face dry and taut, in pain. I showered, crying, and told myself: I am in pain now. But this too, shall pass.
And it did. I was mummifying myself with cotton pads soaked in water while watching Heroes season 3 (would Ali Larter's schizophrenic triplet character just accept her super powers already and deal, for F's sakes!?! I didn't ask for this, either!!!) with PT, when I pulled out a tube of Aveeno moisturizer at his suggestion since it is known to be very mild and hypoallergenic. It calmed and soothed me instantly. I could even smile!
Since the weekend, my skin has somewhat 'warmed up' to the chemistry and the blotchiness has calmed A LOT. I am now lathering vitamin E on my face both before and after bed. So now, I'm an oiled up sun-dried tomato instead!
I still have 20 odd days left of this course of therapy, and maybe the worse is yet to come, maybe I get to try out each and everyone of those side effects above. But just knowing over 100 people have died from the bush fires in Australia, singed alive while fleeing flaming inferno caused by nature itself, I am grateful with my mere sunburn on the face.
At the end of the day, I still have fabulous hair.
I wouldn't think depression is so much a side effect of the medication I am taking right now as initial reaction to the list of side effects themselves. Who wouldn't be depressed just looking at this list?
Should 'indecisiveness' be included, if I could be diarrhetic and constipated at the same time? At which point does the flatulence happen then? And if there's already weight loss, then why do I need anorexia?!
Recovering from surgeries and radiotherapy are a walk in the park, a dip in the pool even, compared to the hell I went through as a few of the above side effects kicked in on Day 5 of my target therapy this past weekend.
A B S O L U T E U T T E R H E L L
My face felt like I popped my head into a burning fire, dry, so very dry, that the skin started flaking off. Pain. Keeping my eyes open was painful since I was stretching the dry skin of the eye lids; talking or eating hurt since the corners of my mouth were cracking. I was so frighteningly red and blotchy that every time I looked at myself in the mirror, I wept. Spraying water soothed it temporarily, but dried it even more after the moisture had gone. Everything I used, ultra-sensitive facial moisturizers, after sun lotion, aloe vera gel, shea butter, all either stung from too much fragrance, or did not absorb at all to relief the dryness.
For me, pain often brings weakness. And so, the floodgates opened. Why? Why is this happening to me? Why am I taking such toxic medication? How can something so damaging help me heal? What have I done to deserve this? Wasn't I ever good enough?
The same senseless questions that bombard anyone afflicted with (perceived) tragedy or trauma. I'm only mortal.
Then another look into the mirror broke the mood and had me giggling. I ran to Ann - who has now returned to London, whom I miss very much - and announced that I don't have cancer, I'm just a muff-diver with an allergy. Right, too much L Word.
The next day, I woke up, still pretty much in the same condition, my face dry and taut, in pain. I showered, crying, and told myself: I am in pain now. But this too, shall pass.
And it did. I was mummifying myself with cotton pads soaked in water while watching Heroes season 3 (would Ali Larter's schizophrenic triplet character just accept her super powers already and deal, for F's sakes!?! I didn't ask for this, either!!!) with PT, when I pulled out a tube of Aveeno moisturizer at his suggestion since it is known to be very mild and hypoallergenic. It calmed and soothed me instantly. I could even smile!
Since the weekend, my skin has somewhat 'warmed up' to the chemistry and the blotchiness has calmed A LOT. I am now lathering vitamin E on my face both before and after bed. So now, I'm an oiled up sun-dried tomato instead!
I still have 20 odd days left of this course of therapy, and maybe the worse is yet to come, maybe I get to try out each and everyone of those side effects above. But just knowing over 100 people have died from the bush fires in Australia, singed alive while fleeing flaming inferno caused by nature itself, I am grateful with my mere sunburn on the face.
At the end of the day, I still have fabulous hair.
Cancer Challenge Continues
January 31, 2009
Seasonal festivities got the better of me, and before I could finish that entry of a detailed account of my experience, I was once again sitting in the patient chair at my doctor's consultation room. The results were not positive. One and half years after my first surgery, and radiation, cancer cells have spread from the mediastinal thymic region (between upper lobes of the lungs) to my pancreas.
After specialist consultation, a CT scan, an endoscopic ultrasound biopsy, more specialist consultation, amidst an agonising week of contemplating mortality, life, life without a pancreas, life with diabetes, life with an external appendage of seeping fluid, and life as an average (heavens forbid!) 33 year-old woman, we have reached the conclusion that the new tumours found in my pancreas are metastases of the original cancer cells (muco-epidermoid) from the primary site. We estimate these are more or less slow growing, definitely malignant.
In the realm of good and bad news, the fact that it's not pancreatic cancer is relatively good news. (Adenocarcinoma in the pancreas has a grim prognosis of about 3.5 months survival rate without treatment.) What options are available to me apart from watching these masses take up real estate in my abdomen is somewhat up for grabs. Of the limited treatments and therapies offered by conventional, mainstream medicine, I have decided to experiment with a target therapy in the form of oral medication, which prohibits alcohol abuse - how will I cope?! - along with a monitoring regime of regular PET scans (my fast track to Chernobyl). At the same time, I will be researching into more holistic, natural approaches in dealing with cancer. Despite my growing belief that modern medicine is invasive, toxic and even damaging rather than healing, I still count my blessings in the efficacy of the network of expert professionals and technical resources that my father has laid accessible to me. Tumours are detected in cancer patients every day. How many have the luxury of accessing immediate specialist attention, and the second opinion, with just a phone call?
I have been asked by well-wishers, 'Are you OK?', 'Is everything alright?' countless times in the past week as well as the last 18 months. Like everything in life, my answer to that is also relative. I have cancer. If, in the grand scheme of things, that's an 'alright', and it very well can be, then yes, I'm actually feeling, and looking (thanks to one-on-one personalised yoga) pretty effing fabulous, since I am not YET symptomatic. Whether or when do I develop symptoms? I cannot answer that. 'Are you in remission yet?' That loose term applied to an arbitrary number of 5 years of absence of disease. No, I am not, not even close. Will I ever be? I cannot answer that.
I don't love the cancer cells inside my body, but these fuckers are never going to go away completely. I've accepted that it's about co-existing with them in a harmonious environment, containing and managing their growth as well as my own mental expectations and development. I am my own cure.
Apart from hanging out in hospitals, commenting on ward renovations with friendly nurses, it has also been a time of celebration for Chinese New Year here in Hong Kong. I was at dinner with a bunch of old friends from Sydney this week, and one couple announced they're expecting a child. It's fantastic news, and life is indeed worth celebrating. Life does go on, and there's not much room for anger, regret or self-pity because moments, good or bad, expire. It's about experiencing each and every one of them earnestly, truthfully, as cliched as it sounds, about being in the moment. Too much or too little speculation would just do my head in. One day at a time.
That's all the answers I have for now. Cancer isn't infectious, my laughter is.
Email me or leave comments here, I'd love to hear from you.
Memory Management
October 23, 2008
It has been a slow few days of recovery from a very mild chill, coldly reminding me of lower immunity, a weakened system that could once regenerate with only extra water and a good night's sleep. On days like these, memory management mornings are crucial.
Lying very still on my back, I'd wonder if I opened my eyes, would I see the clock on the left wall, showing the hour but not quite telling the time since I have no idea how long I had been under. I would tilt my head just a little, to feel for any nasal tube up my nose, or was I breathing unassisted? I would part my lips and swallow, to taste for blood from where the intubation tube might have scraped the back of my throat. I would feel for my right thumb, to see whether it was perched on that button of a gateway to morphine bliss. I would wiggle my feet, careful not to shake my left ankle too much, where the drip may be running through. Is there a catheter between my thighs? Have I ungracefully wet the ICU bed? I would listen out for that suction noise behind me to the right, from the drainage unit sucking out pleural fluids via a hose sprouting somewhere from my body, a sound that had me thinking it was raining all through the night.
All this with my eyes closed. And finally, with my left hand, I would gingerly reach for my chest. Do I have sensation there to feel my touch at all? Or is it staples under steri-strips still? Again?
For a few fleeting moments, I would allow my memory to wander, to search for new haunts even. I would then savour the fear, understanding it a little bit more each time, and appreciate that it is healthy to be afraid.
Inhaling at least two deep breaths, filling my repaired lungs with fresh air, I'd open my eyes, wipe the tears off my cheeks, then smile towards the light. I used to love waking up on my side.
Lying very still on my back, I'd wonder if I opened my eyes, would I see the clock on the left wall, showing the hour but not quite telling the time since I have no idea how long I had been under. I would tilt my head just a little, to feel for any nasal tube up my nose, or was I breathing unassisted? I would part my lips and swallow, to taste for blood from where the intubation tube might have scraped the back of my throat. I would feel for my right thumb, to see whether it was perched on that button of a gateway to morphine bliss. I would wiggle my feet, careful not to shake my left ankle too much, where the drip may be running through. Is there a catheter between my thighs? Have I ungracefully wet the ICU bed? I would listen out for that suction noise behind me to the right, from the drainage unit sucking out pleural fluids via a hose sprouting somewhere from my body, a sound that had me thinking it was raining all through the night.
All this with my eyes closed. And finally, with my left hand, I would gingerly reach for my chest. Do I have sensation there to feel my touch at all? Or is it staples under steri-strips still? Again?
For a few fleeting moments, I would allow my memory to wander, to search for new haunts even. I would then savour the fear, understanding it a little bit more each time, and appreciate that it is healthy to be afraid.
Inhaling at least two deep breaths, filling my repaired lungs with fresh air, I'd open my eyes, wipe the tears off my cheeks, then smile towards the light. I used to love waking up on my side.
Appreciation
October 22, 2008
With a hole in my throat
a sty in my eye
I thank the forces at be
at least there are no staples down my chest
a sty in my eye
I thank the forces at be
at least there are no staples down my chest