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.

Getting Closer

I have been traveling on this cancer journey for almost 34 months now. However, my experience with cancer pain only started in the last four months or so. In fact, it started after my HIFU treatment in China and I believe it has to do with the dead tumor tissues inside my right abdominal area and also the healing wounds of the tissues and blood vessels after the HIFU treatment. At the same time, I am also learning about the pain from the bone tumors. Dealing with cancer pain is not just about popping in painkiller tablets. Some cancer patients like me are very sensitive to opioid based painkillers. The side effects is as deadly as the pain itself as I found out. So managing the side effects is the key for a happier life, at least for me.

I defied my doctors again. Instead of taking in 40mg of oxycodone hydrochloride every 12 hours as recommended by my doctors, I am reducing the dosage to 20mg for every 12 hours or 40mg every 24 hours. The Untracet painkiller consists of about 8mg of oxycodone equivalent potency and taking 4 tables a day would mean 32mg of oxycodone. The pain score is 3. Also, in the 20mg oxycodone tablet, it consist of 18mg of  oxycodone only and 2mg of it comprises others such as lactose, hypromellose, titanium oxide, iron oxide, macrogol and sorbic acid. So the 40mg oxycodone tablet is actually only 36mg of oxycodone. That's how I came about the dosage of 20mg per 12 hours or 40mg per 24 hours. I started yesterday night and based on my pain experience today, the pain score based on this new dosage is 2. The pain score if based on the recommended dosage of 40mg per 12 hours is 0.5. So, I think to reduce my pain, I would take 25mg of oxycodone every 12 hours. This should be sufficient. Why all these calculation? This is because of the side effects of the oxycodone drug. The lesser the drug, the lesser the side effects and hence the calculation to determine the optimum dosage. Oh, this also translate to RM800 (US$250) a month on painkillers and laxatives at 40mg every 12 hours.

Now the drug dosage has been computed, what about the actual side effects, namely constipation, nausea and vomiting? I managed to move my bowel yesterday but at a price. I was trying too hard and I got piles! My GP told me to just push it back in and gave me some ointment to apply. Sorry for the graphic description. Yesterday evening, I vomited after my dinner. Again this afternoon, I vomited my breakfast. I skipped lunch and went to bed to rest instead. Taking in water even seems to trigger the feeling of vomiting. So, I sort of fasted. In the evening, I took some light noodle soup and so far so good. I am still taking in 40ml lactulose (twice a day) and plenty of fruits. Hopefully, I would be able to have bowel movement tomorrow without much problems. I may have to take in forlax just in case. And not forgetting the prune juice as well. I just hope to be able to settle on the right dosage of laxatives and move on.

Wednesday Blues

What a tiring afternoon. I left home at about 1.30pm for University Hospital (UH). The traffic was smooth and I reached the hospital at about 2pm. Finding a parking space at UH is a nightmare but I managed to find a parking lot on the forth floor towards the Eastern end of the hospital. The car park was not equipped with lifts and so you can imaging how difficult it is for me to use the stairs case. Then I have to walk almost half a kilometer back to the main block where the Palliative Care Unit (PCU) is located. Some nurses gave me the wrong direction and by the time I reached PCU, I was almost half dead. After some administrative procedures, I met the doctor, a young but friendly doctor. I updated her on my pain management regime that was prescribed to me by Hospis Malaysia. I also told them I have been off opioid painkillers for about four days now. I am using Ultracet for pain management which gives me no constipation problem. A tablet every six hours and after taking Ultracet, pain score is about 3. For the Hospis pain management regime, my pain score after taking the opioid painkillers is 1. The Hospis pain management regime is more effective than my own. But there is a serious drawback on using opioid painkillers for me. I have constipation problems. There last three days were almost hell for me. My stomach was bloating as if waiting to explode and at the same time, I had bowel movement problems. I was also hungry but could not eat! I took a coffee enema to resolve the problem and thereafter stopped the opioid painkillers for four days, my system cleared up and I was able to have bowel movement. However, the pain scored increased to between 3 and 4, disrupting my sleep and general well being because Ultracet is not effective for moderate to severe pain. I have been on a fruits diet and most days, skipping lunch to give my stomach a rest and to recover. I also discovered I have edema on both my legs.

Anyway, the doctor at UH was later joined by another more senior doctor who told me that only opioid based painkillers are effective for cancer pain. So the main concern now is to managed my constipation. The senior doctor recommended that I continue with the Hospis pain management regime but gave me stronger doses of laxatives such as Lactulose, Forlac and Senna. So my choices are now either to take non opioid based painkillers which will not have constipation problems but suffer more pain OR take opioid based painkillers which will have constipation problems but suffer no pain. The obvious choice is the latter and manage the constipation problem with laxatives. Both the doctors were very friendly and frank. I really enjoyed talking to them for about 45 minutes. I took the opportunity to talk a little about alternative medication and also introduce my blog to them. UH is no longer cheap. Except for the consulting fee, all expensive medications are no longer supplied free by the Government and cancer medications are expensive. A weird thing I observed is that I have to buy my medications from three pharmacies namely the UH pharmacy, the privatised UH pharmacy and an external pharmacy.

I am going to start this new pain management regime tomorrow and monitor the dosage of the laxatives over the next few days to find the optimum dosage which is suitable for me. My doctor has given me an open appointment but will call me in a week's time to check on my progress.

I would like to thank you all for your support and also those who take time to comment on my blog. I would like to inform you that the pageviews of this blog has now exceeded 200,000 as of yesterday.

Leaving The Pain Behind

For the last few days I have been plagued with constipation, indigestion and vomiting problems. It all started from the change of painkillers by Hospis Malaysia. Please don't be mistaken that I am blaming Hospis for my problems. This problem will happen to whomever is using the painkillers because it is a side effect of the painkiller, not who dispenses the painkillers. In view of the side effects, I was also given additional medication such as metoclopramide, senokot tablets, rantidine tablets and lactulose to manage the constipation, nausea and vomiting problems. I started with the new pain medication last Monday and since then, I have been experiencing vomiting sensation everyday and finally, had vomited on Tuesday afternoon. Meanwhile, no bowel movement too and by Thursday, I started my coffee enema to help out my constipation problems. My bowel movement did not improveme and this morning, I took another coffee enema to ease my constipation problem again. Since Friday, I have been having vomiting feeling also and finally vomited yesterday evening and also later in the evening. I have also been drinking a lot of water and looks bloated and I can't seem to take even my daily food. Today, I was waiting for the vomiting to take place but did not. I was feeling uncomfortable the whole day. Besides being tired, I also feel a little feverish. I spoke to the nurse at Hospis last Friday and was told to continue my medication and it will take sometime for my body to adjust to the side effects of the painkiller drugs. But as the day progressed when my condition did not improved, I took the liberty to stop taking the painkillers for 12 hours and since this morning, totally no painkillers. Not a single painkiller. Was there pain? There were some around the right abdominal area and when the pain becomes unbearable, I will resort to my old painkillers until I can speak with the doctors again on Monday.

WHO has developed a three step "ladder" for cancer pain relief. According to WHO's website, when pain occurs, there should be prompt oral administration of drugs in the following order: Level 1: nonopioids (aspirin and paracetamol); then Level 2:, as necessary, mild opioids (codeine); then Level 3: strong opioids such as morphine, until the patient is free of pain. To calm fears and anxiety, additional drugs – “adjuvants” – should be used. To maintain freedom from pain, drugs should be given “by the clock”, that is every 3-6 hours, rather than “on demand” This three-step approach of administering the right drug in the right dose at the right time is inexpensive and 80-90% effective.

My own pain management regime can be described as Level 1 in WHO's pain relief ladder while Hospis's pain management regime can be described as Level 2 in WHO's pain relief ladder. The prescription given by my urologist can be described as Level 3 in WHO's pain relief ladder. So, which is the right one to follow? Like I said earlier, different doctors have their own methods of pain management but for me personally, I prefer to follow WHO's guide in pain management. My case can also be described as slightly different from other normal cancer cases. The pain on my right abdominal area is due mainly to the healing reaction from the HIFU treatment. When the doctors in China performed the HIFU procedure, a substantial portion of my kidney tumors were "burned" to death inside the abdominal area. After the procedure, no attempts were made to drain or take out the dead tissues lingering inside the abdominal area. So, the pain on my abdominal may be a result of the dead tumors or it could also mean new tumors growing inside of it (unlikely at the moment). In fact, the doctors in China expect the pain to disappear overtime when the body has sufficiently remove the dead tumor tissues in the abdominal area. Furthermore, I am now undergoing intensive IVC (IV Vitamin C) therapy and this therapy is very effective in detoxifying toxins from the body. What this means is that even if I do not take the painkillers, there are good possibilities the pain will go away by itself when the wounds inside the abdominal area heals and the body drain dead tissues from the body through detoxification.

Anyway, at the moment, these are possible explanations and since I am off the painkillers, I hope to get a better understanding what's going inside my right abdominal area. Currently, there are some swelling around the area, much worst than that before the HIFU treatment. I suspect the swelling could be due to the inflammation of the wounds during healing. When there are inflammation, there will be pain. According to the CT scans, necrotic tissues can be seen in the scan.

Turn For The Better

Yesterday, I wanted to post but I had some problems. On Monday afternoon, a doctor from Hospis visited me and put me on a new pain management regime. This doctor's way of going about it is very professional. She asked me how I took my painkillers previously. And looking at the painkillers that I took, she made some calculations to convert the strength of the painkillers into "amount of morphine per mg". She then prescribed the new painkillers which basically consist of oxycodone hydrochloride prolonged release tablets for the based pain management and 10mg oxycodone hydrochloride immediate release capsule for breakthrough pain. I was to take 40mg prolonged release tablets twice a day for base pain management. I think I am not used to taking such high dosage of the painkillers at a time. As a result, I suffered from nausea and vomiting feelings which are the side effects. I was also given metoclophamide tablet to manage any nausea and vomiting that I may experienced. I also felt drowsy and went to bed early and but woke up at around 1am as I wanted to vomit. I then took the metoclophamide tablet and then went back to bed. On Tuesday morning, the vomiting feeling came back and it was bad. I was also feeling very drowsy and after breakfast, I took another metoclophamide tablet and went to bed. The whole of Tuesday I was feeling so uncomfortable. By 5pm, the vomiting finally took place. I felt better after that but no sooner than two hours later, that feeling came back. Sigh. In between, I spoke to the doctor at Hospis and she told me that some patients will have such reactions and advised me to continue to take the anti-vomiting tables.

This morning, I work feeling slightly better. What I can say is that the control of the pain was very good. The pain level now is about 1. I hope by another day or two, I would get used to the dosage. Later this morning, when I felt better, I went for my IV vitamin C therapy. Today, I met another pancreatic cancer patient and he was also one of those people who went to Germany for hyperthermia treatment. His next treatment is scheduled to be in July 2012. His wife told me that he will be going to Germany for at least six hyperthermia sessions. She has only good things to say about hyperthermia and the clinic in Germany. I am glad to report that he is in very good shape now. Prior to this, he went to USA, Singapore and China for treatment and spent over RM1 million (US$313K) but without much success. My doctor also told me last week, three of his breast cancer patients died within days of each other, including the one who was in the palliative care unit. I was told they condition suddenly turn for the worst.

Now that my pain management is under controlled, my weight is still an issue. I have not gain weight and may in fact lost some weight. This is because of my ingestion and loss of appetite. Anyway, I am eating a little much lesser now to allow my stomach to recover. I believe once my indigestion problem has been resolved, I should be able to gain back some weight.

I would like to share a piece of good news. My nephew's wife gave birth to a health baby boy today. A new baby is like an unrepeatable miracle. Congratulations to both of you. Thousands of blesses for the new family. I am really happy for the both of you.