Being Willing For Anything to Happen

The last three days, I have been sleeping throughout the day. Last Friday, I believe it was the pain killer OxyNorm which I taper off in favor of Ultracet, which is  a much milder pain killer but without the drowsiness effect. Still, I felt very tired. This morning at about 4.15am, I was awaken by the pain on my right rib cage. I had the pain starting last Saturday and thought it was only temporary but look likes it's going to stay. I find it difficult and painful to breath and cough. Even lying down straight, its painful as if the nerves are pulling. I have also lost my appetite. Yes, even with sirloin steak with black pepper sauce, I don't feel like eating. My stomach felt very full, so I had a little pineapple instead. After that, I got some mood back and was grateful, quickly ate my lunch/dinner.

After I woke up, I went downstairs to drink more water as I felt dehydrated. My hair and my back are soaked with sweat. I am now adverse to cold and hence I do not use any air-conditioner in my room. After that, I sat silently in contemplation trying to connect with my inner self. I have a decision to make. I wrote to the Klinik Herzog in Frankfurt, Germany and Dr Herzog has said I could go to his clinic for Hyperthermia treatment. Dr Herzog uses hyperthermia and combines his treatment with low dose chemo during the full body hyperthermia. During the 4 hour full body hyperthermia when the whole body are heated to over 42°C, the structure of the cancer cells becomes unstable and it is during this time that low dose chemotherapy are applied. The results are that despite using very low dose chemotherapy, the results are often very good and with no or little side effects. In my case, since chemotherapy has no effect on kidney cancer, Dr Herzog is proposing a package of sunitinib which is basically Sutent. The estimated costs is €21K for 20 days treatment and there are other costs not included. I recon that the costs could swell to €30K.

My doctor in New York has advised me that hyperthermia itself is not useful unless used as an adjunct to chemo or radiation (or immunotherapy) and he felt the best results are from immunotherapy. I have just received my cyclophosphamide or Cytoxan tablets for 60 days supply from New York. I am now have the following choices; start the metronomic chemotherapy for 60 days and look at the results to decide the hyperthermia treatment in Germany and vice versa? With my present condition, the logical choice would be to go Germany for hyperthermia treatment first. Once the decision is made, I will fly almost within the next few days.

Bersih 3.0

Today, I will depart from my normal post and write a little in support of Bersih or Coalition for Free and Fair Elections, something I care about very much as a concern Malaysian for the future generations. 

Today Bersih is having a sit-in at Dataran Merdeka (Independence Square) at 2.00pm for two hours. 

Some food for thought:

• Why would the Federal Government fear it's citizens requests for a fair and free elections?
• The Federal Government says Bersih does not pose a security threat but the Mayor of Kuala Lumpur says it's a threat and refused to grant permission to use the grounds.
• The Bersih organisers just wanted to do a peaceful sit-in protest for only two hours. The Kuala Lumpur City Mayor rather lock down all the roads leading to Datataran Merdeka for 72 hours!
• The police has given the nod to Bersih assembly but at the same time got a court order to bar the people from assembling at Dataran Merdeka.

 What does all these tells you?

I salute all of you Malaysians, who participated in the Bersih 3.0 assembly. 

The Day After

OxyNorm 5mg is very good for instant pain relief. Its a opioid painkiller similar to morphine. This blocks the transmission of pain signals sent by the nerves to the brain. Therefore, even though the cause of the pain may remain, less pain is actually felt. However, it does not last the 4 hours as claimed by the drug manufacturer. Possibly 2-3 hours only. I got very drowsy and mouth was very dry after taking the drug. I don't think I want to take the drug continuously. I think I will alternate between taking Ultracet and OxyNorm for the time being. This morning, I was awaken by the pain on my right leg and spent sometime massaging it. After breakfast, I took an OxyNorm capsule. The pain went away quickly but I was also feeling very sleepy after that. I am also feeling a little sick and feverish. After lunch, I felt even sleepier. So I took a nap to rest.

I went to the medical supply shop to buy a walking stick. I feel kind of funny and clumsy when I first used it. My right feet keep bumping onto the walking stick. I struggled a bit when I was climbing up and walking down the stairs. I think there are some practicing I need to do on how to walk properly with the walking stick.

Later in the afternoon, I paid a visit to my friend, Yeong. We spoke about some cancer patients and I also updated him about my upcoming plans. He suggested I continue to take the CA herbs for bone cancer and pain in the meantime.  He told me of two recent interesting cases, one a 79 year bachelor who was just diagnosed with colon cancer that has spread to his liver. The doctor gave him only three months to live and if he did surgery, he can increase his life span by about another three months. He rejected the recommendation and went for alternative treatment. He asked my friend whether he can smoke his cigar and drink whiskey, at least for his coming birthday after that he will stop. My friend just smiled. In another case, the man was diagnosed with lung cancer at aged 100. Despite having cancer, he still continues to ride his motorcycle until one day he fell into the drain. Of course, he is now grounded by his family. A lot of people are getting cancer at a later age.

No Luxury of Time

Despite leaving for town early in the morning at 6.40am today, we were caught in a traffic jam along the Federal Highway which at one point threatened to turn into a car park. I directed my brother who drove me to the hospital to use the NP Expressway to get to town. We arrived just past 7.20am. The clinic opens at 8.30am, so we had a drink nearby to kill time. Anyway, after examining my back, pelvic area and legs, my doctor told me that the pain is not caused by the lumbar spine or slip disc problem. Instead he suspected it has to do with the tumors and immediately sent me for an x-ray on pelvic bone area. True enough, the x-ray revealed a serious intrusion in the pelvic bone by the tumors.  He added that the tumors are pressing against the nerves thereby causing the pain. Nothing can be done except to take pain killers. He then prescribed the stronger pain killer called OxyNorm 5mg. I took a tablet after dinner and I must say it quite effective against the pain. When my condition deteriorates, I will not only get more pain but I will be wheelchair bound as well as I will not be able to walk. Meanwhile, he advised me to get a walking stick.

I felt sad after hearing what the doctor said but I was able to snap out of the negative thoughts quickly. No tears. I am not in denial, only that I have accepted my condition. It's just a piece of bad news. My mind is very positive despite this development. On the way back, I had a discussion with my brother on some of my options that are available in view of this development.

I wrote to my friend in Hong Kong telling her of my current condition and my thoughts. She is of the view that hyperthermia is very sound. She was very encouraging and also shared part of her cancer journey experience with me. I am encouraged by her experience and also gave me the confidence to go Germany alone. Something she wrote is so relevant: "Years before, I always held the thought that I should try the treatments one by one so I could see which one worked and which didn't, only to realize that I really didn't have that luxury of time. Then I started to take all treatments I could get hold of, be it conventional or alternative or supplements, together. Ended up I didn't really know which one worked or did they ever work, but I believe one or some of them have slowed down the progress of disease. The only definite improvement was seen a few months after the metronomic chemo."

It looks like I have to develop Option B now. The most viable option is to go to Germany for Hyperthermia treatment. I will probably stay there for two months, the second month is for a follow-up hyperthermia treatment, two treatments all together. I will most likely go there on my own. My wife will probably accompany me for the first week after which she will leave for home to resume work and look after the children. Two of my daughters are still young and school going. I have one worry less when she is at home with the children. I have learned some practical tips of what to do from my friend whose wife in now in Germany for the follow-up hyperthermia treatment. She went alone this time. I think its doable. Furthermore, the time is now because later I may be wheelchair bound and not be able to travel alone.

I have developed Option C too. Option C is not mutually exclusive with Option B meaning I can do Option C as well. In this option, I will be traveling to China for the IL-2 (Interleukin-2) immune therapy. I will have to get more information by taking to a friend whose uncle took this therapy some years ago. She will introduce her uncle to me so that I can get some basic information and then do further research. When I do this therapy, it will have to be before winter in China, so likely to around September 2012.

Here and Now

This morning, I woke up to some pain on my right leg. I think the pain killer I took last night have weared off. The pain on my right leg seems a little unbearable. Now just during walking but even while resting. I feel like as if the cold winter wind is blowing against my leg and I feel the cold to the bone! It's painful and uncomfortable. I have to spent time massaging my leg.

I have an appointment to see an orthopedic surgeon at Tung Shin Hospital tomorrow morning to get a second opinion about the spinal surgery. Pain, the precursor to negative thoughts are having a better grip of my mind lately. I am preparing myself to accept surgery. The pain has won part of the battle. Add in the pain from my abdominal area, pain elimination is right for the picking.

I have been practicing this positive thoughts that create abundance thingy after following a series of lectures of Dr Wayne Dyer from his audio book, Inner Wisdom. I find it very helpful as I am able to manage my day to day activities and also keeping myself smiling most of the time. I am also visualizing more. It has not become second nature to me but I am working very hard towards it. But at times, even the positive thoughts department goes on holiday. The devils reign free like today. Rambo is on sabbatical leave, revealing half the man I am now.

Do you know where you're going to?
Do you like the things that life is showing you?
Where are you going to? do you know?
Do you get what you're hoping for?
When you look behind you there's no open door
What are you hoping for? do you know?

 Diana Ross, Do You Know Where You Are Going To?

Take A Chance on Hope

Although my trip to Southern Thailand was short, nevertheless it was fun. My friends, Chin Aik, Ong and Kenny were very considerate always putting my comfort and safety first. I really appreciate it and thank you guys! I am not sure when we will have another outing together as I understand most of them are very busy.

I think I have have found one of the pain problem on my right abdomen. Last Friday, I decided to stop taking the night tablet of cimetidine and also for the next two days while I was in Thailand. The pain which usually exists just below my right rib cage area disappeared overnight! After additional reading of cimetidime, I found out in some occasions, it causes internal bleeding. The pain also started around the time I started taking cimetidime. Since my abdominal area is healing, taking of cimetidine can easily cause bleeding around that area. I can now only resume taking cimetidine after my abdominal area is healed. There are still some healing pain in my abdominal area.

I have been thinking about my lumbar spine/right leg pain problem. My current orthopedic surgeon said the only way out is surgery.. The pain killer has been partially effective. I am making arrangement to meet another orthopedic surgeon at Tung Shin Hospital to get a second opinion on the surgery. I have also been reading about the spinal surgery. I am quite open to either of the two common types of spine surgery decompression procedures: microdiscectomy (or microdecompression) or a lumbar laminectomy (or open decompression). I thought since I am about to start the metronomic chemotherapy soon, I am thinking of giving this therapy a four month trial period. Towards July or August, I would like to take the Hyperthermia therapy in Germany. So meanwhile, I can opt for the spinal surgery if I want. Why are all the therapies clustered together? This is because I do not know what's in store in the future. All I know is what I can do now. I recently lost a cancer friend when she tried to postpone her treatment to a later date which was supported by very valid reasons.

Greetings From Betong, Thailand

It was a hectic two days trip to Betong, Southern Thailand. We (my friend, Chin Aik and two other gentlemen) left Subang Jaya at about 6.30am yesterday. The traffic was very smooth for North bound traffic on the North South Highway (NSH). We exited at the Tanjung Malim interchange and headed straight into town. Went a to small cafe and had our breakfast before continuing our journey on the  old road to Bidor. We resume joining NSH at Bidor and continued heading North until we reached the Kuala Kangsar interchange. After we exited the interchanged, we drove straight for Gerik. We did not stop halfway at Leggong town along the Gerik highway but instead proceeded to Pengkalan Hulu, the border town for a coffee stop and also to top up fuel. We decided to drive all the way into Thailand.

After we crossed the Malaysian Immigration, we then realised we forgot to refuel and reminded each other to top up in Betong itself. The Thailand Immigration Office spots a new building, otherwise nothing has changed much in terms of procedures. It's really easy to drive into Thailand. For the Malaysian side, you just need to bring the car registration card. At the Thai side, we just fill up a simple form and that's it. There are no requirements to buy additional Thai Insurance nor having to make a car registration number written in Thai script. After reaching the town, we proceeded straight for lunch. I had a simple rice noodle soup while the rest of the gang had Chicken rice. After scouting for a suitable hotel, we decided to stay at the Grand Mandarin Hotel. It's quite a new hotel with better facilities. At BTH1,380 per night, twin sharing, we thought not too bad, plus complementary breakfast. The room is clean which is very important to me but I can't stand the foul smell of the cigarettes! Chin Aik who speaks a little Thai made a complaint to Housekeeping and wondered if we could change room. But after checking other rooms, they are all smelly. So we had the cleaners open the windows of the room to let out the foul smell and freshen the room up while we went out for a tour of some the local sites.

We headed out for the former communist camp and we had a stop at the Betong  Hot Spring en-route. The place is in bad state of repairs, with algae growing all over the pond. The smell of sulfur was strong. We left after just spending 5 minutes there. While continuing the journey, we chatted happily and suddenly the driver noticed a flash of reserve petrol indicator. Oh Oh. We were running out of petrol. We decided to turn back and at about 4km to the town, we ran out of fuel. Here are four elderly gentlemen with 130 years of driving experience between them running out of fuel in a foreign country in outskirts of town! The Thai people are really friendly. Another friend who speaks some Thai managed to flag down a motorcyclist who offered to help us buy petrol. The picture on your left is the manual style of pumping petrol. We wasted over two hours all in and decided not to proceed with the tour to the former communist camp. As were were all tired and went for a massage instead. I had a foot massage while  my friend decided to give it a miss. The other two friends chose the Thai ancient oil massage. As my massage was short, Chin Aik and I left the massage center for the temples.

The first temple we visited was Wat Puttthathiwat formerly Wat Betong, founded in 1917. This temple is big and nice. There is a golden stupa at the rear end of the temple. That's me spotting a new hair style. On the ground floor of the stupa complex houses a mausoleum which has strong echos. I proceeded to recite by paying Homage to the Buddha and then to the Three Jewels in Pali. Because of the echos, it felt like there are many of us chanting and I felt serene during chanting. After that we went to look for the resident monk for water blessing.

We then proceeded to the Goddess of Mercy temple founded in 1965 where I offered some prayers and lighted oil lamps. We decided to drive around town since this is the first time we are driving there and thought we could get to see more of the local surroundings. For the first time, I managed to see a Caucasian, a rare sight in Betong. I think about 30% of the cars in town belong to Malaysians, especially on weekends. I think it's fair to say 90% of the tourists are Malaysians.

I was tired and we had a simple Thai dinner. After dinner, I went back to hotel to rest while the gang visited the pubs for a drink. I was feeling really cold in the room and switched off the air-condition before proceeding to sleep at about half past nine. I heard the door opening much later but did not wake up to talk to Chin Aik and just continued my sleep.

This morning, we woke up about past 8am and after our morning bath we went for breakfast. The food offerings were reasonable. Then we checked out and went for another temple visit as two the other friends did not get to visit the temples yesterday. After the temple visit, we left for home. Passing through the immigrations of both countries was a breeze at noon. Reached home just past 5.30pm. Only one lunch stop at Leggong where we had the famous fish balls. I must admit I have not been at this place for a very long time and how the size of the fish balls have shrunk.

Some more photos.

The lobby of the Grand Mandarin hotel.

A view of part of Betong town from my hotel room. Noticed the beautiful rolling hills in the background.












Some photos of Wat Puttthathiwat

The place we found ourselves running out of fuel. 4km to the town.

Betong Hot Spring. It's a shame that they didn't build bathing facilities. Bathing in the hot spring water has a relaxing and refreshing effect. In the hot spring water, although the curative effect of the hot springs varies, it's therapeutic.









One unexpected sight while taking a tour of the town in front of the Betong market.

The place where we had lunch today. The restaurant the serves the fish balls. We had fried fish balls, steam fish in soy sauce, stir fried wild ferns in garlic sauce and bitter-gourd with fried eggs. I had my bowl of rice noodle vegetables soup.