Hang on, Ms K

Ms K my fellow lung cancer patient compatriot is not doing well. She had radiotherapy to her lung area last week. I sms-ed her awhile ago but she is still breathless and had to be admitted to another hospital.

For a year, I have been the receipient of best wishes and hopeful thoughts from many including Ms K. When Ms K replied to my sms that she is getting worse, I am at a loss to reply. Replied I did after awhile. I understand the effort many of us put into to wish someone well. How do we form the wishes, the words to balance between the hopeful and letting go.

Ms K's fate could be mine. My condition a few weeks ago is her condition now. I pulled thru, and I hope she will too...

mggpillai.com

MGG Pillai, one of the doyen of Malaysian cyberactivism, has passed away. His website is one of local sites I visit regularly for refreshing analysis on Malaysian and sometimes overseas politics.

May he rest in peace.

Part of this new phenomenon...

Yes, you are now , somewhat, part of what the New York Times just featured ;)

On my mind

I am constantly thinking of Ms K my fellow lung cancer patient. Recently she developed breathlessness just like I did, and Iressa has lost its effectiveness on her cancer cells, just like mine did. Like me, she got some really crucial decisions to make, and the outcome of those decisions are quite unknown. I feel for her because that's what I have gone thru recently.

We have supported each other constantly and really hope she will go thru this hurdle. She is the anchor of our little informal network of lung cancer patients, and we have seen two of them passed away. Yes, it is grim.

I hope things will look up for her. Hang on, Ms K!

Walkabout

On Monday, after more than 2 months, I ventured to go shopping at Seremban's Jusco S2. My mom, sis and I had steamboat lunch before attacking the store ;)

Had no problem prowling the corridors; no breathlessness.

Next is to visit the bookstores. ;)

Squeeze and Pinch tests 2

In February I blogged about the Squeeze & Pinch tests to check on my weight and strength of my right hand.

I used the Squeeze test a few days ago and it showed the strength of the right index, middle and thumb is returning. I am able to squeeze the liquid out of the bottle. The Pinch test it showed that I have gained some flesh on my butt...haha..previously before the 1st chemo I felt only something like a dried-up prune, now it is more fleshy ;)

A brief history of me...

Yes, time to look back at my therapies; what worked, what are dicey and what's out...for me at least.

Let's look at the elements one by one; Medication, Food and other therapies. Because they play a major part in my therapy so far.

So let's start with Medication. Then we look at glorious food and others. :)

Medication

The first information I received when I was first diagnosed with cancer are books by Dr Chris Teo. The books I read of which he authored are full of warnings about chemotherapy and radiotherapy. Although he tried to be objective, what came out of his books are warnings that the "cure is worse than the disease". He advocated more "gentle" therapies like change of diet and herbs which he concocted and sold at his centres.

I never doubted Dr Chris Teo sincerity in promoting an alternative path to cancer therapy. I first knew of Dr Teo when I read his books on orchids when I was a Horticultural undergraduate at UPM. And his books are the result of his selflessly helping cancer patients in the way he know how. He had sacrificied time and resources to set up his CACARE centres. His botanical knowledge has also helped in formulating his herbal therapy.

And of course it is up to the reader to judge and evaluate his records of real life experiences of patients. He is objective enought to present statistical record of the cancer patients whom he and his counsellors seen.

It was me who took the part of the negative effects of conventional therapies very seriously. I decided to eschew chemo and radio for the initial part of my cancer journey. I decided to go the path of herbal path and other alternative therapy like qigung and Chinese traditional medicine.

It was after I met with Dr Kana and Dr Selva of NCI in April 2005, that I decided to thread gingerly to radiotherapy to my C6 vertebra. Dr Kana gave me a kindly warning that I my option is the tumour eating away at my spine and paralysing me from the chest down, or take the chance that the radiotherapy will ease the pain and have minimal side effects.

I took the chance and so far it fine. Of course, I am under no illusion that radiotherapy is radioactive material released into my body and the effects may or may not be tolerable in the long run. The NCI doctors made this clear. I blogged about this here.

I do take Dr Teo's herbs and other supplements. Mostly supplements from direct selling companies which I have abandoned because I don't think they worked, or much cheaper alternatives can be bought elsewhere.

I have blogged about the attitude of some irresponsible direct selling personnels here. I prefer now to consult Dr Pang who is a qualified medical doctor with an interest in preventive medicine rather than to hear out some unqualified direct selling person who is more interested in filling his or her quota of the month!

My experience in chemotherapy is the opposite of most patients. I took the much more expensive IRESSA before trying out the initial "defense" lines of chemotherapy. Dr Kana said I should try the first and 2nd line of chemo defenses, when these become ineffective, I can then try out Iressa. But I refused to touch chemotherapy.

Then I had a major breathless episode at the end of May 2005. As I lay panting in NCI, Dr Selva decided on Iressa for me. It worked very well for me, in a few days time I am up and about and able to breath unassisted. So Iressa worked for me; 10% of non-small cell lung cancer patients.

But since the last 2 months, I guessed the cancer cells have mutated and Iressa don't seem to be effective no more; hence the last episode of breathlessness. So I am now on chemo which seems to be working well so far.

Prior to last May's breathless episode, I remembered I was also seeing Dr Yong my Chinese medicine physician and she kept on saying I am looking great although slowly the tumour is filling up my lungs. I had herbs from Dr Teo, and qigung and acupuncture from Dr Yong; I thought I had my bases covered.

But looking back, it is the "orthodox" and "conventional" therapies like radiotherapy and chemotherapy that made the difference. The alternative therapies may have helped, or gave a psychological boost but the moment the orthodox therapies entered my body, the healing effects were instantaneous. I can't deny their effects, while the alternative therapy results are dicey, and forget about claims from the direct selling supplements...for me at least.

Before I end this section. I must say some cancer patients who took his herbs responded well, and some of the direct selling supplements may have helped some patients. What I have written are my personal experience.

I would say do try things out. Both orthodox and alternatives. Some may work for you at that moment in time. I am no fundamentalist, if a therapy which worked for a certain period of time loses its effectiveness, I am ready for change.

Or the other way round, if the time has come for my body to receive a therapy which doesn't work the last time, I am also ready to give it another try. But watch out for scumbags who are just out to suck money from you!

But at the same time, do seek oncologists who will treat you like a thinking human being and emphatise with you, and not someone who treats you like a piece of meat to just be pumped with chemicals.

I have heard of oncos who get angry if their patients or caregivers asked more details or expressed doubts about their therapy ; leave immediately if this happens! I myself experienced an onco who sneered at my herbal therapy, and raised the price of Iressa when he knew I am seeing another oncologist.

But the bottomline for me, at this moment in time, it is the orthodox therapies like radiotherapy and chemotherapy have helped. 'Nuff said.

Food therapy

Yes, food as medicine, medicine as food. Again, I am writing from personal experience. Experience from just only me, so proceed with caution!

Before cancer, I have been a sort of health nut. When working overseas, I have always cooked with organic ingredients and avoided so-called harmful stuff like sugar and artificial ingredients. That habit continues when I returned to Malaysia. I think I kept well physically too. But cancer still came, I guess food has less to do with my type of cancer. That is why when people give me advice on diet, I usually heard it all before, I was living the organic and sort of macrobiotic lifestyle before cancer! Yin Yang of food and diet; I knew that ;)

The first book I read when I was first diagnosed with cancer was books by Dr Chris Teo of CACARE, Macrobiotic Diet of Michio Kushi, Dr Lai of Lapis Lazuli Light, Gerson Therapy and recipe book of June Kahong Lim of Eco-Wood Cuisine. Yes, I am well informed. Not only that, I took to their advise enthusiastically.

I turned vegan overnite; avoiding even oil, sugar and salt, and only organic stuff! Many of my friends wondered how I cope. But their diet is not alien to me, and I find them palatable. Brown rice with blanched vege are my diet during the initial days.

Did it help?

What I am sure are they gave me great joy because I felt I am in control and the taste is not that bad. When I was better, I even cooked them myself (will put up some photos of dishes I cooked at flicker.com!).

But did it really help?

I am not sure. Maybe it has. Maybe it helped to keep the tumours are bay for a time. I was diagnosed in March, and had brain seizure and breathlessness in May. The breathlessness was due to tumours filling up my lungs, and I was already full steam on my vegan diet then. Maybe the cancer was too advanced for the diet change?

I remembered telling Dr Kana I am no fundamentalist. I am no food taliban. I will change if the vegan diet doesn't work.

I started to take meat and outside food in September 2005. Then I had brain seizure in October and my condition deteorated. Some friends it could be due to my easing of my strict diet. I doubt it. I think it's because Iressa was loosing its hold on the cancer cells...

Where am I now?

During the past 2 months, my weight fell from 45kg in October to just 39kg early March before my first chemo session. Breathlessness has returned gradually, and gripped tightly early March. I could hardly walk and was panting at the slightest exertion. My appetite slowly spiraling down; even good food don't appeal when you are breathless!

I took the decision to abandon the strict diet and throw out any feeling of guilt when eating so-called "forbidden" food. It is working because I have gained weight. I am now around 41kg since I eat, in moderation, food that I have avoided for more than a year. It is working for me, for now.

As I have mentioned, I am no food taliban. I know what worked before, if they don't work now, I will abandon that diet, but that doesn't mean I won't return to them again when the time is right and my body is ready for them.

For now, eating in moderation meat, tropical fruits (which many cancer diet advised against. A qigung master especially warned against durian!), outside food, sugar-laden pastry seems to be ok with me. I am gaining weight, energy and vitality. I know this is helped also by the chemotherapy.

Food purist, Dr Teo or followers of macrobiotics may cringe at my current choice of diet. But hey, I am listening to my body and it seems to like these now! I like this article by Dr Gayek.

So I am shelving the cancer diet therapies for now. Bon Appetite!

Other therapies

For a period, I see Dr Yong my Chinese physician weekly. She will monitor my condition, prescribe meditation if necessary and gave me qigung and acupuntucture treatment. I thought I had the best of both worlds; orthodox therapy at NCI and Chinese medicine with Dr Yong. But it all ended in October last year when Dr Yong suddenly decided to quit practising.

Did it help? The Chinese medicine? I think at least I have an assurance of added medical monitoring. The acupuncture gave additional boost to my confidence that they support me in the orthodox therapies.

But I can't say with absolute confidence that they visibly helped. At that time I was on Iressa and that helped clearly.

I was also practising Chi Dynamics' qigung. That gave me a boost that I am in some sort of control over my healing. Occasional what I presume are movement of qi helped to sustain my practise. When I was able to drive before October last year, I was also doing the Gui Lin qigung at the Seremban Lake Gardens every morning. I learnt Gui Lin qigung before I had my cancer.

I would have loved to report that they helped me, but I can't with confidence. All I can say is they gave a sense of responsibility and control that we can manage our own health. But there are lots of testimonials and anecdotal evidence of their effectiveness of many other people, and of course many qigung styles have centuries of refinement!

I have also learnt Reiki. A reiki master came to me when I was still recovering from surgery in IJN and gave me reiki treatment, and another reiki master came to do some healing when I was back in Seremban. I felt "something" during the first IJN session but nothing after that. Then late last year I took Reiki 1 & 2 which are Master-guided lessons on reiki. I don't feel any affinity to it so I dropped the reiki healing.

Other therapies which I have tried and dropped is the very interesting Malay faith healer or bomoh. He is an accountant but found that faith healing as his calling. I met him very early in my journey. He gave the typical prescription for mandi bunga of lemons and leaves, and a blessed amulet. I saw him twice and then stopped. Well, he kept on saying I will be ok!

Sometimes, friends who came hold prayers for me. It felt good to know of their concern. Once, a lost party of Hare Krishna devotees was persuaded by my sister to come and pray for me. What a riot! There I was lying in bed while the group of Hare Krishna devotees played their bangles and drums and sang prayers for me! Check out my blog about this here. I have listened also to Muslim Sufi healing surah which a friend sent for me. She is the singer of these surahs.

I had an experience with retro-hypnotherapy or regressive hypnotherapy too. It required me to go into hypnosis and retrieve past wrongs and hurts, and attempt to heal them. I find the process tedious and awkward. I prefer Anthony Robbin's method of healing now, rather than uncovering past hurts and feel the pain again. I dropped it.

Looking back, I can say, yeah, those were the days! I was open to many things, and still am. I see myself as a guinea pig for all these healings. Those times, I can feel the desperation of grasping whatever therapy that offers a glimmer of hope.

But of course I am wiser now especially to herbal treatments, and products of direct selling companies.

Back

Back from my 3rd cycle of chemo yesterday afternoon. The 3 injections were uneventful except for the final one. Not sure if it is the anxiousness of going home, but I felt a bit breathless after half the chemo was in.

The doctors stopped the chemo session. Anyway, back home now and everything seems fine.

On the way home, stopped by a stall to buy some mangoes and coconuts. Also indulged in one durian fruit. I ate just a few ulas (arils) of the D99 clone. Yum for the durians ; if paradise has a fragrance, it will be the durian's aroma :)

It's my first durian for more than a year. It's amazing the amount of deprivations I can take!

Family

I take leave from this blog for a few days starting tomorrow (18 April). I will have my 3rd round of chemo at NCI. I will again leave you with something to ponder. It was sent to me by a friend.

F A M I L Y

I ran into a stranger as he passed by,
"Oh excuse me please" was my reply.

He said, "Please excuse me too;
I wasn't watching for you."

We were very polite, this stranger and I.
We went on our way and we said goodbye.

But at home a different story is told,
How we treat our loved ones, young and old.

Later that day, cooking the evening meal,
My son stood beside me very still.

When I turned, I nearly knocked him down.
"Move out of the way," I said with a frown.

He walked away, his little heart broken.
I didn't realize how harshly I'd spoken.

While I lay awake in bed,
A still small voice came to me and said,

"While dealing with a stranger,
Common courtesy you use,
But the family you love, you seem to abuse.

Go and look on the kitchen floor,
You'll find some flowers there by the door.

Those are the flowers he brought for you.
He picked them himself: pink, yellow and blue.

He stood very quietly not to spoil the surprise,
You never saw the tears that filled his little eyes."

By this time, I felt very small,
And now my tears began to fall.

I quietly went and knelt by his bed;
"Wake up, little one, wake up," I said.

"Are these the flowers you picked for me?"
He smiled, "I found 'em, out by the tree.

I picked 'em because they're pretty like you.
I knew you'd like 'em, especially the blue."

I said, "Son, I'm very sorry for the way I acted today;
I shouldn't have yelled at you that way."
He said, "Oh, Mom, that's okay.
I love you anyway."

I said, "Son, I love you too,
And I do like the flowers, especially the blue."

FAMILY
Are you aware that if we died tomorrow, the company
That we are working for could easily replace us in
A matter of days..
But the family we left behind will feel the loss
For the rest of their lives.

And come to think of it, we pour ourselves more
Into work than into our own family,
An unwise investment indeed,
Don't you think?
So what is behind the story?

Do you know what the word FAMILY means?
FAMILY = (F)ATHER (A)ND (M)OTHER (I) (L)OVE (Y)OU

Kylie

She had it all. I remembered her as a fresh looking gal in 1980s belting songs like "Locomotion" and duet with Jason Donovan. Ah, those were the days, we the teens of 80s; an age emerging from the horrors of 70s...haha.

Kylie Minogue, from the looks of an innocent girl-next-door, evolved into a sex symbol she is today. From bubbly songs like "Locomotion" to sultry songs like "Slow".

Last year in May she was diagnosed with breast cancer. At the height of her career.

Today, saw her on an Astro retro programme; Double Shot, a programme about songs of the 1980s. There she is singing "Locomotion". This prompted me to google her and check her condition.

She is doing very well; able to visit Sri Lanka and go jet setting. She even sported a new look; recovering from hair loss obviously but she turned it into a chic and trendy look as only she can.

5 Stages of Grief

I was watching an episode of The Simpsons the other day. Homer was given 24 hours to live after he ate what was purportedly poorly prepared Fugu dish. I was reminded about the 5 Stages of Grief when Homer went thru all 5 stages in 5 seconds in his physician's office. :)

The 5 Stages of Grief after receiving a traumatic news are:
1-Denial-"this can't be happening to me"
2-Anger-"why me?"
3-Bargaining-bargaining often takes place before the loss.Begging, wishing, praying.
4-Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.
5-Acceptance-there is a difference between resignation and acceptance. You have to accept the loss, not just try to bear it quietly. Our goals turn toward personal growth.

Sometimes one don't go thru that 5 stages in that sequence, or may backtrack in the stages or even miss some stages. I am now mostly in stage 5. I have mostly in early after the diagnosis asked "why me", not in anger but in trying to find a cause. A dash of self pity occasionally.

I always stop if I slipped into the bargaining stage because I thought that's pathetic. I heard of some terminally-ill patients who recovered when they made deals with God or themselves to do charity work if they recover. That's not for me. But if it works for others, more power to them!

Resource

Good resource on cancer from Discovery Channel which has made April 2006 as its Cancer Control month. The link is also on my link column on the right side of this blog.

Awesome...the Web Unplugged?

The end of Google and wi-fi?

I found this at Jeff Ooi's. Check out Webaroo!

It's a link

Some readers don't realise this. But Blogger.com didn't give good indication if there is a link in a blogger's text. If u see a blue or purple word(s); it means there is a link. Like this. Or this. Or like this. Click on them and you will be linked either to other websites, details of a particular word or my other blogs. ok? :)

Carpe Diem real life

On Saturday, I walked the longest distance in two months. I walked to the neighbourhood 7-11 and back at 6am, I think a total of 1 km. I was a bit exhausted but happy at the end. Got some snacks from 7-11 and nasi lemak from Al-Shafi restaurant besides it.

I also learnt something else.

I have always been surrounded by people who know my condition. Family, friends and medical staff. They are symphatetic and always try to bring me comfort and be gentle with me. It is easy to be nice to them in return too.

But what about people outside this community of comfort?

At the 7-11 store, I lingered for a long time to catch my breath. One of the 7-11 staff, I think became suspicious if I am looking for opportunity to shoplift. That was my thought when he asked me in what I thought is in a heavy handed manner if I need anything. I said I am looking around, and he retorted that once looked must buy. By instinct, I became quite upset and gave him a verbal lashing for treating a potential customer so shabbily. Oh boy, although I am physically dilipidated but my verbal defense skills are still top notch..haha

So he retreated. Then I remembered my Carpe Diem aspiration. I realised that I should be alert and spread goodwill, not add more misery to the world! So I apologised to the staff for my part, and explained to him why I was lingering so long. I also realised I do look like a drug addict with my dilipidated condition and ill-fitting clothing. If he is heavy handed, well, it is up to me to choose my response, and not to assume that he meant ill. It is up to me to respond to any situation. There is an option.

So that was a good lesson for me. There are people out there with issues of their own, and those who will treat me like any other; don't always expect the gentle handling as if from friends and family! Be alert to my own habits, instinct and reactions!

Occupied

Been slow in blogging because I am playing with 2 new toys :)

First is my birthday present which I gave myself; a brand new notebook . Simon asked if I really want to invest in such a pricey notebook. I said I am not investing but indulging! The doctors said if the chemo is successful, I will have an extra 1 year. Well, hopefully if that is so, let's make this a great one year, and I want to die clutching a state of the art notebook! You bet there's a lot of projects (personal and work) this coming intensive one year!

Second is I have been uploading photos on my album at this website. I have uploaded a total of 366 photos by today. More to come of photos from my visits to other countries before cancer (BC). I will have to scan my photos from my pre-digital camera days. For my digital camera days, most of the photos are in my Dell desktop which I have donated to CETDEM. Hopefully Mr Gurmit is able to retrieve all those photos.

Chemo Cycle 2

The 3 chemo I had on 29,30 and 31 March were uneventful. My chemo is just Etoposide and it did not combine with the platinum-based chemo. The doctors deemed that I am not that tolerant on platinum-based chemo so it's just Etoposide for now.

On the 30th March, after my chemo, Dr Kana said he wants to give me a tour of a 12-million state-of-the-art radiotherapy machine. What he did was to lead me to the NCI cafe for my surprise birthday party. The photos of this party is at flicker.com. :)

Thanks to Sharon & Eunice who I reckon are the main organisers of the party, and everyone at NCI for the kind gesture :)

I stayed on till 6 March 2006 for precaution and because my sis will be away till then. I managed to catch up with my reading. I have tonnes of books which I haven't read and this cancer gave me lots of time to read my book collection!

Thanks to Mrs McCoy and Elsa for the post-birthday lunch they brought. Kian Foh who feeds my brain with magazines and, at my request, my stomach with junk food...haha. Thanks also to Ah Tze and wife who came to visit me again. And the surprise visit by Heng my fellow non-practising horticulturist. And of course to my mom and sis, niece and Ah Liaw our family friend.

Photos

Phew!!! I have spent like 3 hours preparing and uploading photos of my birthday party at NCI onto this website. No text blogs today...gotta rest!

Some of you may have received invitation from me to view the photos. For those who are interested, lemme know and I will send u an invitation too :)

Balik Kampung

Back home! Blog more tomorrow... :)