So be it

Had a CT scan at NCI today. The results showed the tumour increasing in both lungs, more so in the left. Nearly 2/3 are solid tumours while 1/3 are fluid. Bad, but hardly surprising because the physical evidence; breathlessness and lethargy have been increasing.

Dr Selva and Dr Kana laid out the option; chemotherapy. It's not really an option actually. Both doctors said the time has come to do chemo. I asked how long would I suffer before I die if I choose not to do it? Dr Kana said I won't die immediately but will suffer immensely with more invasive procedures to relieve the symptoms.

He mentioned that a successful response to chemo would prolong my life for a year or more. I didn't say it out then but was thinking if it's another year like last year, it is not an attractive proposition!

You all know the fear I had of chemo, the sideeffects and stuff. Dr Selva told me the possible side effects but he said no patients had died on him or Dr Kana because of their chemo presciption. And for me, it's been a long time since I first read about and fear chemo.

I just agreed that ok, let's do it. I said that I have tried so many things; radiotherapy, surgery, herbs, supplement, diet and many others, that guess it's time to try chemo. I will just let go. What ever will be will be. In a talk given by Chief Reverend Dr K Sri Dhammananda, he said that when asked by his oncologist did he has any side effects from chemo, he replied that he only had the full effects! Que sera sera.

So on the 9 March I will be admitted to NCI, stay overnight because the chemo will be administered for 24 hours, discharge next day and come back the next day for the third cycle.

One Goal

After friends from MBCS left, Lim came. I have blogged extensively about Lim in my May blogs. Those were really confusing and challenging times for me and Lim was like my spiritual guide. His calmness and frequent visits to share what he knew and even what he recently found out gave me great solace and food for thought. I addressed him as Brother Lim as he is like a spiritual brother to me.

Today, he brought me a blue plastic sheet with Tibetan inscription of a mantra of the Medicine Buddha. He happened to meet a Tibetan monk, and requested him to inscribe two pieces of mantra; one for him and one for me. I am touched by Lim's thoughtfulness. The inscription is supposed to protect our health especially from harmful effects of electromagnetic field.

We also discussed about my current situation and state of mind. I told him about my apparent feeling of conflict about letting go, preparing for funeral and the gung-ho objective of triumphantly healing from the cancer. I admitted that it is not easy to balance this two.

Yes, I mentioned in a blog yesterday that I want to prepare to die so that my mind will be at ease to give 100% to heal. But is it really so? Will my energy be dissipated between this two and in the end neither would have satisfactory outcome?

There is an element of egoism and pride in wanting to heal. I don't want my friends to think I am giving up. I also want to be an example to others that even such an advanced cancer case like me can heal. I want to be a hero.

And I must admit, I still think of staying on this life because of the good stuff I have yet to savour and also to "re-enjoy" the things I love and used to love in this moment of time in this body. There are also the thoughts of the potential I can achieve if I were to heal and stay on and do the things that I am good at I (or so I thought). That's craving and clinging to this world.

Lim left me with some thoughts.

- Why think of letting go as giving up? Think of it as preparing to go to the next phase in your life. Concentrate on that. Maybe what you are destined to be or do in the re-birth is more useful and may be more needed & appreciated by even more beings. Focus on being at peace and to let go.

- Trying to divide between letting go and striving to repair the currently wrecked body may be too taxing. Just let go, if your time is to go now, you will go no matter what you or your doctors do, so go in peace, the stress of the struggle just robs whatever enjoyment you have left; if your time is not up yet, you will heal anyway.

Food for thoughts indeed. I think one grand Goal may be the route instead of trying to be many things to other people.

Now what is the One Goal I will have?

Saying Goodbye with a Smile

Today, friends from the Malaysian Buddhist Co-operative Society Limited paid a visit to me. Tee Eng Kau my UPM alumni is an active member of MBCS who lead the rest to my home. Among the services MBCS provides are funeral assistance, birthday blessings, wedding services and other services that are designed to follow the Buddha's teachings.

We focussed on funeral services; as its booklet says; A Proper Buddhist Funeral. I am particularly interested in its promise to make it "solemn and dignified". Details are on their website.

I am very happy with the modus operandi of the funeral services, which will have rites in accordance to Buddha's teachings. It is up to me now to decide on the details of their package options such as number of days, ways to manage the body, chanting and a few other details.

I want my funeral service to be educational. Many of my friends especially those who professes to be Buddhist may not have attended a proper Buddhist funeral. What we usually see are Taoist ceremonies with lots of weird rituals; I remember participating in a Taoist funeral ritual where I had to jump over fires and run around in circles so that the deceased can have access to the Afterworld.

Anyway, that is one the variation of the numerous Taoist rituals and I have no complaints for those who prefer that way. Even some purported Buddhist ceremonies were mixed with Taoist and even Feng Shui principles. But if it brings comfort to the mourners, so be it I think.

The MBCS friends introduced me to a calm, solemn and dignified world of Buddhist funeral. I am excited to make my funeral as an introduction to what a Buddhist funeral can be; with Buddhist hymn singing, Dhamma talk and even an eulogy which I have never encountered in a Buddhist or Chinese funeral.

Another major decision is what to do with my remains. I know I want to be cremated. I would like my ashes to be in a columbarium but I heard the cost is prohibitive. I need to check this out. Other alternatives includes scattering the ashes onto the sea which is one option of the MBCS services. I am thinking if it is ok to just scatter them into a flower pot or base of a tree. Hej, that's the environmentalist and horticulturist in me thinking!!!

There will also be a booth to distribute Dhamma books and CDs. In my obituary I will ask people to refrain from getting funeral wreath or flowers. Better to contribute the money to a donation box for reprinting of Buddhist booklets and CDs.

As a sideline, I was even thinking of asking my family to play the CDs with the music I liked when there is no official ritual ceremony; music like jazz, blues, oldies, pop, music CDs from many countries which have I collected in my travels. I am thinking of including Trance music, but that may be too much...hahaha! ;)

There are quite a number of stuff that I need to decide. I will collect my thoughts and put them all down in writing. I will share them with you when I am done.

Wow...preparing to die ain't easy!

All bases covered

My latest blogs about preparing for death brought lots of reactions and emails from readers. Thank you very much for your concern. I do share your anxiety.

I have to reconcile between being an optimist and "know" that I will pull thru in the end, and seemingly giving up and to be preparing for my death.

I have blogged about attending the London Olympics in the year 2012 here, here, and here. How can I be so confident about that while preparing for death?

Personally I am also afraid that all these preparation will distract me from the 100% effort to heal myself. Will all these death business chip away whatever confidence I have? Shouldn't I be gung-ho and confident of the end result come what may? I have to admit that I am not 100% confident.

But I guess that is natural, but at the same time I don't want to nor do I fear death. As my blogs on 11 Nov 2005 shows, death is but a unfairly neglected part of life. I want embrace birth, living and death as part of the continuum. I will try my best to learn and extract whatever from this ailment, share them with you, and if I succeed in my effort, that would be a great triumph for me and other cancer patients who think their particular life here and now is too good to end just yet.

If I die because of cancer, well, at least I go with peace, and not clinging and suffering for what I think I will miss in this life. As someone who believes in the main tenets of Buddha's message; this life is but one. And London Olympics 2012 is 6 years away; if I die now and be reborn into something/someone else, I may still be in time to savour the London Olympics, but maybe in another form or person! haha :)

But we all die eventually; either from a long slow painful lingering death or sudden split-second fatality. Preparing for death is, I believe eases the mind from an inevitable fact of life. And think of the angst of your family if they are not physically, financially and mentally prepared for your death. Let's do everyone a favour, prepare for death, yet prepare to give your best for living.

Can this be done? I want it to be so.

Openly preparing for death is not giving up, but I am doing my duty as a son, brother, nephew, uncle and friend to prepare you guys for my death. I know it may be hard for many of you, my dear friends, to worry about this latest move, but you will overcome it eventually as you become more familiar with the thought. As I said in this Nov blog , I would like you to gaze upon my supreme serenity as I lay there in the casket, you can't help but smile when you recall our times together! :)

So here it is:
I am able to give my 100% best to heal simply because I have already removed a major worry.

Making a list...

Although I tried to prepare my family for any eventualities, I have not written them down. Thus far I have just told my immediate family what are my final wishes. Today I started to prepare the list. Where to find legal documents, who to call and how I would like my funeral to look like.

Macabre? not for me; I am taking this in stride. If you remember, in my series of blogs about death on Friday November 11, I am ready for that. That series of blogs are my favourite and am very proud of them.

In fact, everyone should make a list. We want our family and friends to mourn (or rejoice!) in our death in comfort and peace! haha! Preparing to die a good death is striving to live the good life indeed!

OK, so I will making a list, checking it twice, but I won't try to find out who's naughty or nice. That is Santa Claus's job ;)

Some of you may receive the list to ensure that you are ok if my sister contact you when the time comes. Your task would most probably to spread the news to our mutual friends that I have gone to the next phase; in other words; I am dead.

New blog custodian

In May, two of my friends have graciously agreed to be my blog's custodian. They will post the news that I am no longer able to blog, or has passed away. I blogged about that here.

Today I have asked another friend to take over; Mr Kua Theng Hong. One reason is he has his own Google blog so would be more familiar with the settings. His own blog is here.

I thank the two friends who have acted as custodian for nearly a year; Ms Jarina Jani and Mr Lee Kian Foh. And thank you to Kua for agreeing to be the new custodian.

Blessed mosquitoes

One good thing that came up from this episode of pain is this is a blessing for mosquitoes. Although my room is supposed to be " mosquito-proofed" but one or two enterprising ones managed to slip thru the mosquito netting by following the opening of doors.

Usually they are easy prey for me. I would whack them with glee. No loving kindness from me.

But with the onset of the abdomen ache, the act of slapping them brings instant pain to my abdomen.So now I just talk nicely to them to go away, or just wave them away in the gentlest possible manner. Sometimes they comply, but hej, they got to eat too!

Just you wait! haha ;)

Gingerly does it

I approached last night gingerly after the abdomen spasm the night before. Took painkillers in advance and sat in upright position on the bed. The usual ache around the abdomen is still there but tolerable, and a new ache appeared at the right back.

Anyway, managed to sleep soundly and only woke up briefly before midnight and 3am.

I am having a new symptom. For 3 mornings I excreted thick brownish green phlegm with slight traces of blood. Not a good sign definitely, but did not worry; I was thinking...hej, about time! ;)
So far only once the phlegm was excreted in the whole day, and I am not coughing. Let's see how this develop.

Walking now with a walking stick. This is for added stability and to relieve the load on my abdomen muscle. It is amazing how much the abdomen muscle helps in standing and walking upright; would never have noticed it if not for the pain.

Little things

Again, as I have blogged previously, I was made to appreciate the little things that made our body work. The abdomen cramps revealed to me how much each and every body part synchronise to make our body work and propel ourselves.

Sitting up and getting up is so painful at the stomach wall area; showing how they support our upright movements. Even just walking upright reminds me the contribution of the unnoticed stomach wall.

I am now blogging from my bed; being careful to let the stomach wall rest after the ordeal last night.

Hope tonight would be peaceful!

Aaaaaargh!!!

If I thought the hip pain was bad, I really didn't expect the pain from the cramps and pulls of the abdomen muscles last night.

I was lying in bed. The pain of the stomach muscles were already there when I pulled them 2 days ago. I thought it would go away fast as with other muscle pain from that area.

But it got worse last night. Very much worse. I was immobilised because any slight movement to get up or turn renders frightfully painful spasms from the area. I can't even straigthen my legs. It was like some monster hands were crudely grabbing and tearing away at my abdomen.

I was in bed for more than 5 hours not knowing what to do. Can't even get up to get take painkillers because I was lying flat.

I screamed when the first cramp or spasm came; because it took me by surprise. There were occasions where no screams could emit from my opened mouth because the pain was so excrutiating. Eventually I managed to suppress my desire to scream so not to stress my mom. Just my eyes wide open with pain and terror. There is nothing she could do and nothing could be worse than to see your loved one in pain and unable to help.

Eventually, I listened to Buddhist Metta chanting and willed to pull myself up. 1-2-3! 1-2-3! 1-2-3! I said loudly as I pulled myself up to upright position on the bed. I moaned long and loud at the end of the effort because the stomach muscles were not happy at this! I was drenched with sweat and stank from the effort.

I took the pain killers & they seem to help a little. Managed to fell asleep in that drenched and stinking situation. Although I managed to wobble to the bathroom for awhile, but I did not clean myself nor change cloth because the stomach cramp was ever ready to pounce at the slightest movement.

Got better in the morning. Able to get up and took a much-appreciated bath to get rid of the stench and stickiness from the mega-effort last night.

Deja vu

Saw Dr Kana and Dr Selva yesterday. Complained to them about the fragile muscles of my stomach and waist area. They are so prone to muscle pull.

Talked to them about my options. The conclusion is to do a CT scan next Thursday to evaluate my options. My Iressa will run out and I have no intention of continuing due to the cost.

I have always thought the white shadow on my left lung are fluid effusion. The doctors explained it's not necessary so from the x-ray; a CT scan is needed to ascertain how much fluid are there, solid tumours or just collapsed aveolis.

They are reluctant to tap if the fluid are too little (1 0r 2 litres) or as one of the last resort, because of possible complications such as infection. This view is differs from other oncologists of my other fellow lung cancer who seems to do tapping at request. They are worried that a tap may distort the flow and retention of the fluid.

I decided to follow their view and not to insist on tapping. I always thought tapping would relieve my breathlessness but after realising the white show of the x-ray may also be showing solid tumours, I decided to wait for the result of the CT scan.

I recall last May when severe breathlessness hit, and I was brought back from the abyss by Iressa. I am taking Iressa everyday now; I got 10 more pills. Would Iressa work it's magic again?

An Ordinary Joe in his extraordinary world

The last few days I was quite reluctant to blog; because I am feeling lethargic and in bed most of the time. I really want this blog to be a positive one. My resolve was not as strong as I would like it to be. I wanted to inspire but could I do that when I myself is feeling down.

I always admire those who seem to have steely nerves. They don't appear to get distracted, waver nor weaken in the face of adversity. They lock their gaze on the ultimate objective and move towards it with unbreakable will. Nothing gonna take them down, no sir. Don't we all love to be such person?

But I know myself. I am no enlightened monk that can withstand unlimited suffering. I was never too "spiritual" nor one able to deny myself the pleasure of the senses.

I am one who prefers not to work too hard nor too long to achieve my goals. I am also a sissy to pain. And I am the type who loves to start projects, but ever ready to abandon them when I am bored or just want to start on new projects or girl(s)...hahaha ;)

I am just an Ordinary Joe who unwittingly found himself in an extraordinary life-threatening situation. I am just trying to cope, and hopefully thrive, with it.

Do I sound a bit like you? Are you, like me, the "average" and Ordinary Joe? Would and could someone like us go thru such a healing journey and emerge triumphant?

I realise I must cope with the situation as who I am. If I am an Ordinary Joe, well, that's my starting point.

I am an Ordinary Joe. Not an Indiana Jones, not an Alexander the Great, not a Napoleon.

I am an Ordinary Joe. I may slacken along the way. But this Ordinary Joe must pick and dust himself up more quickly than he had ever done before. I may doubt myself, but this Ordinary Joe will slap himself silly to bring back the confidence.

I am an Ordinary Joe. Coping in an Extraordinary Way; to strive to enjoy this healing journey, so that other Ordinary Joes can.

Long Live the Ordinary Joes (& Janes) !!!

Update 12 Feb 2006

The past few days saw me very tired and lying in bed mostly of the time. It's the breathlessness and I think the general lethargic feeling is due to the left lung effusion. Sometimes there's pain in my waist, ache in my neck and generally tired.

I may wake up with enthusiasm, all fired-up to walk to the mamak for capati and vadai. But the short walk to the bathroom and morning grooming leave me breathless. Today I tried again, but only managed to walk a quarter of the way before I turned back due to my weak legs and breathlessness.

Today is a relatively good day; ache in the neck and back is subsiding. Only the breathlessness is still a nuisance. I am upbeat today after yesterday's gathering at the McCoys'.

By the seaside

Yesterday, Datuk Dr Ronald McCoy and wife hosted me and friends to a lunch at their seaside holiday home in Lukut, Port Dickson. Kian Foh, Yoke Mun, Fong, my mom and I were there, with a special guest; Dr Kana my oncologist.

Yesterday and today marked the end of a long series of religious festivals in Malaysia starting from November with Deepavali, Hari Raya Aidil Fitri, Christmas, New Year,Hari Raya Haji, Chinese New Year, Awal Muharam, Thaipusam yesterday and Chap Goh Meh today to mark the end of the 15-day celebration of the 2006 Chinese Lunar New Year. Did I miss any holidays?! :)

Datin McCoy, in her usual astute self, arranged for a Yee Sang appetiser. A pleasant surprise and a delicious one with Kian Foh and Yoke Mun mixing just the right amount sauces for the yee sang. So we had a merry time loh sang beside the sea; bet many of you never loh sang-ed with the sound of seawaves and gentle touch of sea breeze! We then settled down to a Chinese-style lunch.

Thank you to the McCoys for being ever such thoughtful and gracious hosts, to my friends who made time to join us, and the housekeepers Mr. & Mrs. Segaran who will upkeep the place for the next visit!

The Squeeze and Pinch tests

I uses the Squeeze test to check the status of my right arm. The Squeeze test is the ability to push down the sprayer of my Dr Mist. I got no problem with my left hand in squeezing the sprayer for the liquid to exit. But my right index and forefingers are still weak, even the right thumb could not push down the sprayer head.

The other is the Pinch test. This is a quick weight-gain/loss indicator without a weighing-machine. I just pinch my butt to check how much flesh is lost or gained. Presently, it is mostly just skin on my butt; heavy weight loss!

Works everytime ;)

Astro shooting

A few days back, the newspaper The Star featured my blog in the article on healing blogs. Today, the crew of the ASTRO TV station came to interview for one of their new programme. The programme would be about how people with ailments, problems and other life threatening situations cope with their predicament in an inspiring manner. This programme is scheduled to be aired in a few months time.

This is one of the "exceptional experience" in my healing journey. Understood more about the work involved in a TV series shooting. Quite an enlightening experience for me to look into a camera and talk. In my excitement plus the breathless condition, I had to catch my breath a few times in the beginning of the interview....haha

Thanks to the Astro crew for being such swell guys (and gal) and to guide this amateur celebrity-wannabe in the finer points of cameraship!

Selamat Kembali!

For many Malaysians, today is the first day of work after a long week of Chinese Lunar New Year celebration, and also Awal Muharam marking the start of the new Muslim calendar.

Welcome back! :)

Update

During the CNY, my condition has mostly downs than ups. I was in bed most of the time because lying prone is the most comfortable position for me.

The neck pain has moved from the left to the right. The right side of my back still aches which spreads to my right hand. My right index and forefinger has not much strenght still.

My hemorroid is back. Darn!

Breathlessness still persists. I know the left lung is 3/4 filled with fluid, but I think it has stabilised. Can't walk long distance before needing to rest to catch my breath.

Insomnia do sometimes come to visit.

The pain at the right hip is gone after the radiotherapy.

That's it. I am telling you this as a matter-of-fact, not to gain sympathy or get the perverted macho feel :)

Mom to cousin

Yesterday, two of my UPM friends shared a remarkable side of my life.

My cousin and her husband came to visit me. She is very much my senior, the age difference is decades. Her eldest son is the same age as me. They arrived at the same time when two of my UPM friends were visiting me.

My biological dad has died when I was a few months old, and my biological mom was very unwell because of her gallbladder problem, she eventually died after 10 years due to this ailment. So me and my 6 other siblings were under the care of my mother's brother and his wife. It is to ease the burden for my recently widowed and sickly mother.

One day, a couple came to visit my mother's brother family. The husband of the visiting couple is the uncle of my mother's brother's wife. Bear with me, I know the family ties sounds convoluted!

I was there at the time. A tiny tot of 8 months old, crawling in the dirt and putting sand into my mouth. I crawled up to the visiting couple and climbed on the legs of the husband. Mr Foo picked me up and cuddled me, and I felt asleep immediately on his strong warm right shoulder. Mr and Mrs Foo were so touched that they decided to adopt me there and then. Hey, I was very charming even then!!! :)

That is how my could-be foster mom became my cousin! An elevation of my status! And that was how I became a part of the Foo family.

So yesterday as I see my "cousin" and adopted mom sitting side-by-side, I wondered at the remarkable outcome from the throw of life's dice!

Passing on the New Year

Talking about death during Chinese New Year is pantang or taboo. But since I take death as inseparable part of life, let's break the taboo.

I have met all of my biological siblings except for my 2nd sister. When my siblings came to visit me during CNY and told me about my 2nd sister, it turned out she passed away from breast cancer last April, while I was in my own cancer struggle. My other siblings didn't tell me about it lest I get depressed about it. But her cancer journey is a celebration of life. She had the cancer ten years ago, was treated and in remission until four years ago when it came back.

I think it is remarkable. She managed to see her kids grow up and become independent. She also found solace in Buddhism and accepted the cycles of life. She requested that her kids wear red at her funeral because she wants it to be a happy occasion. Usually Chinese funeral sees the children of the deceased wearing black and somber colours for others.

I remarked to my siblings that her extra years of remission are like bonuses. She managed to care and watch her kids grow up, and gaining those extra years was a blessing indeed.

The 2nd news I got during CNY was the death of my UPM senior. FCY is a remarkable and dynamic person as I remember him. His name always crop up in new projects and he made a great name at the places he worked. I remembered being interviewed by him and was about to join him at a golf resort as a horticulturist, when I accepted another offer. He had liver cancer and passed on very quickly after the diagnosis, on the 6th day of CNY. Such is the vagaries of life...

Another news of death I received is about a fellow lung cancer patient; LF. Ms K kept me informed about LF's cancer journey. She was on the same qigung class as Ms K, and Ms K was very concerned about LF condition because she is not on chemo nor radio, but depended on a direct-selling product and a Chinese traditional medicine doctor or sinseh.

Although LF was coughing badly and obviously deteriorating to all others who saw her, LF's sinseh insisted that she is having the famous/infamous "healing crisis". The sinseh claims that her coughing is a way her body is expelling the impurities. This sounds eeriely like my experience last May.

I was increasingly unable to breath yet my own sinseh keep commenting that I look better than the last time she saw me! Eventually I could hardly breathe and had to be on an oxygen machine when I was admitted to NCI. When I asked her why she could not detect that my lungs are filling up fast with fluid, she just kept quiet.

Anyway, LF's condition deteriorated towards CNY and she died peacefully on the 2nd day of CNY. Somehow I feel someone should confront her sinseh for her fatal misdiagnosis. It just leave a bad taste in the mouth that the sinseh's misdiagnosis may have robbed LF from seeking useful help.

But all is water under the bridge now.

I wish my late 2nd sister all the best whenever she is now. She has indeed found peace in the final moments in this life. She left this body and this life at peace with herself. She also managed to prepare her siblings and family for her eventual demise.

FCY my UPM senior's life also touched & inspired so many people. I hope his life will be celebrated too while we mourn his passing away.

And LF, may you be well and happy.