Trusting My Instinct

It's good to be back home after spending 2 days and 2 nights at the hospital. Originally, I planned to get admitted to KL General on Monday morning but on Sunday night as I was going up to my room to sleep, I felt shortness of breath. I was feeling half dead. I got uneasy as if something bad was going to happen to me and I spoke to my wife and mother about checking in to a hospital on that very night itself. Finally, after some discussion, I decided to go Tung Shun Hospital for better service and cut the waiting time for treatment. Upon arrival at the hospital at about 1.30am, I was wheeled into the observation room and the nurse amount other things took an immediate blood test. It was found out that my hemoglobin count was at a low of 6.3 and contacted the specialist doctor who immediately ordered 2 pints of blood for transfusion. The transfusion started at 5am and ended about 2pm later the day. Come to think back, my fatigue and unclear mind that I have been experiencing was due to the lack of blood. Last Saturday, I was crawling on my bed when my hands suddenly became powerless and I collapse on my bed faced down. A day after the blood transfusion, I felt like a new person, so much more energy, less tiring and the fatigue that has been haunting me seems to have gone! I have been monitoring my blood levels regularly but I did not expect such a drastic deterioration in July itself.

Anyway, there are some good, bad news and an important lesson that I learned from this episode. In my next post, I will give you more details. As for now, the nurse managed to draw out about 3 liters of water from my abdominal area. I am so relieved of the pressure from my abdominal area. Suddenly, I can eat without obstruction, no incidence of vomiting and no indigestion though constipation is still a problem. I am much more alive now but wait, there are still so many more things I need to do.

There Is Hope

I would like to thank my friends for coming to visit me during the last week or so. In particular, thanks to Jasmine for bringing the lovely organic porridge. One of the best I tasted in a long time and also to Yeong and Khadijah for bring me some Koren made organic nutritional cereals drink to supplement my liquid diet.

My doctor has started me on liquid morphine as the new painkiller. Liquid morphine taste like cough syrup and is very effective for immediate pain relief. Theoretically, each dose of 2.5ml which supplies up to 5mg of morphine is set to last 4 hours but in my case, it can only last 2 hours. The plan was to take 10ml (20mg of morphine) during the daytime and 5ml (10mg of morphine) during the night and in total, 15ml should be sufficient for my whole day needs. However, I needed to almost double the dosage to get the relief. In particular at night, I am awaken by the pain and then have to take another dose. This is quite disruptive. More that that, I think I may actually end up taking up to 30ml (or 60mg of morphine) to manage my pain. This amount of morphine intake is more that what my body can bear and I believe the side effects will be as bad if not worst than what I am experiencing. So, just after trying for half a day on liquid morphine, I have to stop and revert back to morphine sulfate instead. At least at 40mg, I can get reasonable pain management throughout the day and occasionally supplement it with tramadol to ease breakthrough pain. At this dosage, I can tolerate the side effects and have a decent meal with minimal vomiting.

Earlier, I thought I had stomach bloating but it's more than that. It's abdominal distension with the complication of tumors. Or more correctly called Ascites, which is a gastroenterological term for an accumulation of fluid in the peritoneal cavity. So, I am planning to be hospitalised this coming Monday at the KL General Hospital to undergo direct removal of the fluid by needle or paracentesis (which may also be therapeutic). My brother has been pestering me to undergo this procedure when the symptoms started appearing but I wanted to try other less invasive methods of treatment first. Strangely enough, none of the urologist and gastroenterologist that I consulted proposed this procedure.

A Proud and Happy Moment For Me

Today, I will do a short post and write something positive and happy. I always wonder if I am able to see my daughter, Wai Yee graduate from college and the good news is that I will be able to see her graduate this September.

She could have taken any other course which will be so much easier for her (and my pocket) because she given full scholarship. But she wanted to do digital animation and due to her good results, a number of colleges has offered her partial scholarship in digital animation. But the best animation school in the country and one of the best in Asia (The One Academy) did not offer anything (tuition fees also 20% higher) and I decided to give her the best I could afford back in March 2009, a few months before I was diagnosed with kidney cancer. Cancer or not, I will still finance her for this course. I also spent a fortune buying high powered IT hardware, DSLR digital camera and other supporting materials like art paper and few hundred different types of drawing pencils and pens. I think I made a right decision. Many of her classmates dropped out from the course. It's a three year course and because she have so much assignments to do, I think she only slept a few hours a day for the last three years. I have seen her work and I am impressed by the quality of the animation.

My eldest daughter has finally completed her six months final year project. Her group of three students will presenting their 30 minutes of a digital animated film which they co-wrote, designed, animated, produced and filmed. I was told nine companies in the industry will be present to see the class of 2012 presenting their project work. Unfortunately, I will be not able to go and watch the movie at the college, only my wife will be there to give her full support. Instead, I will be watching at home later.

Well, this is a proud moment for me as a father to see my daughter completing such a tough course. I wish some of the companies in the industry will take note of her group's project work and hope that she will find employment in a good animation company to begin her career. I wish her all the best in today's presentation and I am very proud of her.

A Turnaround?

Last Saturday Dr Chong, my hypnotherapist who is also an allopathic trained doctor paid me a visit. She was concerned about my current problems that I have been facing because of the side effects of the painkillers. After understanding the pain management regiment that I was taking, she also gave me her opinion and also gave me two documentation on palliative care management for me to read. Usually, I would have no problems reading those documentation but now, I am really in no mood to sit down and read anything at all. This is because of the pain that I am experiencing. To manage these additional/breakthrough pain, I am taking tramadol and paracetamol.

If you are wondering why I am still having pain whilst taking the painkillers, this is because I am on the minimum dose of painkillers. For example, I have changed my painkillers from 20mg oxycordone (2 times a day) to 20mg of morphine sulfate (also 2 times a day). However, morphine sulfate does not perform as well as oxycordone and so I am getting some pain even when both drugs are at the same grammage. But the good thing is that I get my appetite back and have lower incidence of vomiting. So, it's a trade-off. This morning, I increased my morphine sulfate to 30mg to reduce the pain but I had two other problems which I did not experienced at the lower dosage of 20mg. I was having nausea, vomiting and indigestion problems. After breakfast this morning, I could eat no further. Any food that I take seems to get stuck in the throat and I had to skip lunch. So I could only take the Milo beverage as replacement. By 5pm, the indigestion problem was not only not improving, I vomited. All my food that I took earlier the day came out!

I found my optimum tolerance level is 20mg of the painkillers and if I take anything higher, it will impair my stomach functions to the extent that I can't eat and digest any food. Anyway, I will be talking with my doctor again tomorrow to review my pain management regime. I would try something new like liquid morphine, morphine sulfate and fentanyl patch. The pain is localized in the right abdominal area and I wonder if fentanyl patch would help to control the pain. This is what the doctors gave me while I was hospitalised in China. Bearing in mind, fentanyl patch can cause hallucinations and also make the mind drowsy. I remember spending most of my time sleeping in the hospital bed when I was in China.

Many a times, I felt that I was at the end of my journey. The are also pain from the stomach bloating, not able to eat and digest, not able to have constipation, as well as from the pain from the edema. The swelling on my legs makes it very painful and tiring to walk. I felt like in a end game rehearsal, immbolised and lying in bed depending on my caregivers, who are my mother to do things for me like bring food and water to me while my father acts as my pair of legs going to buy stuffs for me from the shops nearby. I will talk about this experience in a later post.

Grinding To a Halt

My plan to write a follow-up post for today in relation to Gary's comments will not materialise. It will have to wait for another day. I have been tweaking with my painkiller dosage for the past week and so far, whatever combination that I take that does not include oxycordone  just does not work very well. The pain is just too much to bear. So, I have decided that oxycordone will be part of my painkiller arsenal and I started taking 20mg every 12 hours for a start since yesterday.

Today, the pain has come down tremendously but I have to deal with one of the side effects. Nausea and vomiting. I have been vomiting for the whole day. After I brushed my teeth morning and took a cup of water this morning, less than 5 minutes later, I started to vomit. Of course, there is nothing but water to vomit. And for the past one week, I have been vomiting the first meal of the day. But for today, it was bad because I could not eat any solid food as it will surely trigger vomiting. So, I have to drink some Milo a bit at a time to gain back some energy because I really feel very weak. At the time of writing this post, I only managed to take in about three scoops of porridge for my lunch without triggering the vomiting. And if I am not careful, I will vomit whatever I have eaten for the day. The drug metroclopramide is not very helpful in preventing the vomiting. My gastroenterologist said this is the painkiller side effect and other than the anti-vomiting drug, there is nothing much else I can do. So now, I am eating very small portions throughout the day. I just hope to eat enough of calories to sustain my body for the day.

I have turned to my TCM practitioner for help to deal with the edema. She has prescribed some herbs that has been grinded into powdery form. She said the medication is toxic and should help to flush out the excess water in my body. So far the flush has not taken place but the medication did caused me to have stomach ache and irritation. I believe it's helping because my stomach does not feel so full. I will complete the first course of the medication tomorrow and hope to see some improvements.

Painkiller Blues

My plan to rollback the use of the opioid background painkillers to tramadol (Ultracet) was carried out over the last three days. Although I managed to do it, the results was rather painful. I think the pain was rather bad and unbearable at times, especially at night. Ultracet just could not keep the pain levels down and sometimes, I have to double my dosage to get the effect. Currently, this is what I am doing, doubling the dosage of Ultracet. The side effects also came down and I was able to have bowel movement without the aid of laxatives. My stomach bloating, nausea and vomiting improved slightly and I managed to gain back some appetite. But there is still some level of pain. The edema is not improving and even taking 80mg of frusemide to help to drain the excess fluids is not effective.

The pain is getting worst and even after consulting specialist doctors, there are not much help that I can get because the problem is my sensitivity to the side effects of the medications.  I solve one problem but the medication creates another side effect problem. Sometimes, I think I have come to a dead-end again, like sort of an end game. And when it comes to painkillers, do I have other natural choices? Last night, the pain was quite bad and so I took 20mg prolonged released opioid oxycodone painkiller. The pain came down almost immediately like magic. Yesterday, it was the first time I felt happy after taking the painkiller. I was high on drugs! I could not sleep and my mind was floating but happy. It was really a weird experience. The price I paid for taking the painkiller was very dry throat so much so I have to get up few times in the night to drink a lots of water and the bloating became worst. I also developed this vomiting feeling in the morning!

A Circle Game

Things has been on the down side for me for the last one month or ever since I started the new pain management regime. I just came back from the hospital again. Yes, besides my own home, I think the hospitals and clinics have been my most frequent places of visit. I had a consultation with a Gastroenterologist to diagnose my current gastrointestinal problems. The final analysis as this gastroenterologist put it down to is the side effects of the oxycodone hydrochloride painkillers that I am taking. It's not a mechanical problem like a blockage. My doctor says there are two options to go about it. Option one is to continue with the oxycodone painkillers that I am currently taking. To manage the side effects, he will put me on Ondansetron Hydrochloride (Zofran), a strong drug used to prevent nausea and vomiting caused by surgery or cancer medicines. However, he warned me that besides being expensive, this drug also has side effects and his own experience with this drug is not good and would not recommend it. The second option is to go back to my old pain management regime of Ultracet since my problem only started when I changed the painkillers. 

As you can see, I have been going round in circles. This constipation-bloating-nausea-vomiting is giving me a lot of problems. I can't even eat decently because every time I do, I would vomit almost immediately afterwards. Although I have metoclophamide drug to manage the vomiting, it has not been very effective. As a result, I am continuing to lose weight. I have been thinking for a while now, whether I should abandon my new pain management regime? After trying the new pain management regimen for almost a month now and with all the problems I am experiencing, I think it's time to do a rollback to the point before all these problems started.

After consulting so many specialist doctors and receiving so many recommendations, this is what I will do. To cease taking opioid based painkillers like onxcodone as the background painkiller. Revert back to Ultracet (tramadol and paracetamol), one tablet every 6 hourly or 4 tablets a day. My doctors said I can increase the dosage up to 8 tablets a day. I will monitor my pain level from there and keep some oxycodone immediate release for breakthrough pain.

I would like to thank Yeong and Khadijah for presenting me a book called The Pain Chronicles by Melanie Thernstorm. As I understand, it's not a mere self help manual on pain management but a elegantly compiled treatise.

Are We Forgetting Something?

The last three days or so, I have been rather tired. I though I write a short update in case some of you are wondering what happened to me. Plagued with the same old problems, I have been trying to understand these constipation-bloating-vomiting-edema problem of mine. How come, the medicines that I have taken have not been helpful? Is there another area of problem that I am forgetting to look at? My doctors are also puzzled. I also read that many medical websites have included cancer as one of the causes. But attributing it on the cancer won't help me.

Yesterday afternoon, I finally visited my dentist, something I should have done three months ago but I have been postponing. The reason being that he is too far away, the other part of town. Actually, the plain reason is I am just lazy. After exchanging greetings, he asked me how I was doing and I told him about my current problems. Anyway, I complained to my dentist about two teeth that needs filling. There is one that has been giving me the pain for a while now. He examined that tooth and said it is preferable that the tooth be extracted because it is damaged. I can also tell from the from the mirror as part of the tooth is already blacken. He said each of the tooth is connected to a different part of the organ of the body and in my case, this tooth could be sustaining the bloating problem. He cleaned the tooth and the did some filling but said to come back in six weeks time for an extraction. Meantime, he said my stomach bloating should improve as he removed quite a lot of bacteria before filling up the tooth. After completing the dental work, my dentist took me to see a chart about the tooth-organ connection.

The diagram you see on the left (taken from http://www.poschneider.com/) shows the connection between the different tooth and organs of the body. Whether I believe it or not OR whether is was my mind playing tricks on me, my stomach bloating has actually improved since my tooth filling! I am beginning to eat better since last night.

According to the Center for Natural Dentistry , "Unfortunately, holistic dentistry and looking into the mouth is typically the 'last resort' approach to treating chronic illnesses. We at the Center For Natural Dentistry will gladly help people achieve health, though we prefer people come to us first BEFORE problems or symptoms persist." Sometimes, we forget the amalgam cancer link.

Milestone Turning to a Tombstone

In early June I was invited by a local cancer group to share my cancer experience despite I am not in remission. I told the organisers that I will speak on two topics, namely Milestones and Self Treatment. The sharing session took place last Saturday, 30 June 2012. Anyway, a few days earlier on Tuesday, 26 June 2012, I received a call from someone I nearly forgotten for I have not heard from him for almost a year. I have written about this young person in my blog and you can read his story here. Now, almost 11 months later, he called me to tell me that he has undertaken chemotherapy and the cancer has spread all over his stomach. And from our conversation, I gather that there is not much the doctors can do for him anymore. I can sense his desperateness of don't know what to do. He was sort of wanting to hear from me under the circumstances, what other therapies are available to him. I did suggest a few therapies that he can read up and possibly do. I then asked him about his finances and he said it's not good.

So what is this story have to do with the talk about milestones? If you can recall in two of my long ago posts, I said that every terminal cancer patient will one day come to realisation that he/she has reached to end of the road in terms of treatment. A milestone is a marking of a significant event or journey. When I was diagnosed with cancer, the doctors says there are no conventional treatments that are available to me. My milestone then was the end of the road and for many, this milestone later became their tombstone. Then I said I will create my own path using the alternative treatment or approach. I can tell you that when I reached the end of the road milestone, it's a very difficult situation to handle, much like when the doctor first tells you of your cancer. I can tell that this young person who called me on Tuesday, he was very emotional and just wanted to hear some news from me about an extension to the end of the road. I told him that when we are at the end of the road milestone, we must now create our new path. I know it's difficult because we have to read and find out what are the suitable treatment that we can do. He gave me loads of excuses (like he's not fluent in English and not well educated) which I soon broke it down for him. I think he expected me to be his doctor and just tell him what to do. That unfortunately, is what I am unable to do for many reasons. I did however, point him to some available therapies that he can consider in the hope to jump start his searching. I also suggested books, those written in Mandarin which he is fluent in.

In my next post, I will share with you my experience on how I select what therapy or therapies that are suitable for me. There are many books written about alternative cancer therapies and what's the difference them and my approach? I will explain that as well. In dealing with cancer, I believe you need to find the "extra edge" that therapy A offers over therapy B and why is the "extra edge" is important in cancer healing. I will offer some clinical evidence where possible to support my believe.

Sharing Is Therapeutic

I was feeling slightly better when I went for my Vitamin C therapy this morning. There I met two other patients whom we have become friends. We were all happy to see each other and sharing our journey and also of the therapies we are taking. It really makes me feel good when I see other cancer patients are responding to treatment. Last Saturday, I received a call from my doctor and he asked whether I could spare some painkillers for one of his patient who will be running out of the painkillers by Sunday. For some logistics reasons, my doctor could not get the supply on time and today I found out that the reason was that the drug company did not give priority to such small orders.  I gladly told my doctor I would be pleased to spare his patient some of my painkillers which I just bought a few days ago. What I don't understand is that the drug company knows how painful a cancer patient will be without the painkillers but it showed no compassion. It's just business. The lesson for patients is to keep more stocks.

My constipation is under control now and I attribute that to the lowering of the painkiller's dosage. At the lower dosage, I still feel a little painful but at least my daily routine can move on. The nausea and vomiting feeling are still there and I find it frustrating that even drinking water triggers the vomiting. And I need to drink a lot more water! In early June, after receiving my blood test results, I suspected that I was bleeding after I discovered very yellowish/brownish urine. I stopped taking cyclophosphamide to begin the drug elimination process. My urine analysis results last week showed that there were no traced of blood in urine and later, I attributed the yellowish/brownish urine to the oxycodone drug. This was compounded by the fact that I wasn't drinking enough water. So I though what is the best way (other than through IV which my doctor suggested) to increase my water intake without triggering the vomiting? I found a simple temporary solution. I just mixed 400ml of isotonic drink with 600ml of water. That did the trick. I did tried to lace the water with lemon but it did not work. It did work with cranberry juice but leaves a strong bitter aftertaste. For long term use, cranberry juices would be a better choice. With this water problem solved, I will restart taking cyclophosphamide, a drug which also requires me to drink a lots of water. I will also monitor any signs of bleeding. Since I stopped taking cyclophosphamide, I noticed the pain on my right leg is coming back, particularly when I get up from my seat.

One other problem still outstanding is edema. At first it was confined to my legs but now, its at my stomach as well. My stomach is bloated and after being examined by my doctors, it is basically water. The University Hospital doctors told me that for people with abdominal problems and/or kidney disease, edema is common and suggested that I rest my legs on two pillows when I lie down to sleep. This should help to eliminate the water and it did. However, it would not move the water from my stomach. My blood test showed that my albumin is at normal levels. The next option is to try diuretic medications. I just want to ease my situation quickly. For longer term, I would prefer to take TCM herbs which are known to be quite effective for edema. Keeping my fingers crossed.

The Joy of Dying in Peace

Last week while I was at the University Hospital, almost towards the end of my visit the senior doctor asked me a question. It's an unexpected question but it has been in my thoughts for a long while. The doctor asked "What if at the end, you find what you are doing is not working? What will your do?" I know the day will come and when that happens, I am prepared to call it a day. While, I would certainly like to find a cure for my cancer, there comes a time I will recognised that it's no good. I have tried all that I know (of course, you can say there are many more I have not tried) which I think will work for kidney cancer. I am satisfied with my actions and prepared to move on.

You know, sometimes when I wake up in the middle of the night due to pain, I will ask myself, with every new day that I survive, I am also subjecting myself to another day of pain. With every new day, I also present myself a chance to better my own condition. But so far, what I have seen from my treatment; it's sustaining but the cancer is also progressing slowly. So, it's going to be a slow painful death in the end. That is one possibility. The other possibility is that I will survive. This is a bonus or like some of you said, a miracle. A very well known oncologist from Singapore once said, curing cancer is like striking a jackpot. So there is so much physical therapy one can take or do. There comes a time, it's better to accept the end is near and then prepare for it. For me, I will not cling to this body of mine any longer.

I have the opportunity to speak to a number of cancer patients, a few days before they passed away. What I noticed are that these people are not prepared to die. It's due to many reasons and one of them is acceptance. They still cannot accept the fact that they have cancer and why it happen to them. They feel pitiful and that the world or life has been unfair to them. They are really in a miserable state. I take a different view. I am actually preparing for this day so that I can die peacefully. To this end, my doctor loaned me a book called The Joy of Living and Dying in Peace by His Holiness, The Dalai Lama. To approach death without fear or regret and welcome our passage of death. To live peacefully you must also learn to die peacefully.

I have said at the beginning of this year that this year will be a difficult year for me. Half a year has already passed and it was painful so far. The second half of the year will be more painful and challenging and but still I hope to survive it.