Mar 2009
Cancer Circus Pt I
March 29, 2009
Cancer Talk
Cancer Talk
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
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
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
Cancer Talk
Cancer Talk
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!