Wednesday, March 7, 2012

If Only I Could

My coughing is coming back off and on. One thing that has not changed is the blood stain clots in the phlegm. Hope it will not get worst. This is to be expected since my cancer has spread to another part of the lung. I can't do anything now because my HIFU treatment has not healed yet. Starting another treatment is not recommended. I have contacted the hospital in China and the doctors say each patients reacts differently. They suggested that I get some pain killers to manage the pain. I feels like I am a sitting duck now. Helpless and in a hopeless situation.

Yesterday, a friend who is also a breast cancer survivor called me. She asked whether I am free around lunch time. She would like to take me to attend a lunch time stand up show. It's going to be hilarious and she thought that I would feel better after that. I thank her very much. Last two days, my abdominal pain has been acting up again. I told her it would be a bit difficult for me at this moment to enjoy the show and I suggested a future date instead. She said there will be only one show. What a shame that I have to give the show a miss.

I never thought I would write about this. But in life, never say never. Personally, while in China, the doctors have used very low dose chemotherapy and radiotherapy for my treatment. The TAE procedure is to inject a very low dose of chemotherapy directly into the blood vessels supplying blood to the kidney tumor to block the blood flow. I also had an IPT procedure where the doctors also injected very small doses of radioactive particles directly into the new right lung tumor.

This metronomic chemotherapy treatment was introduced to me by a reader from Hong Kong. Strangely, I wonder why some of our doctors back home does not know this treatment. Anyway, she has used it and reported that she managed to get rid of the lymph nodes and lung metastasis within three months of usage. I am encouraged by her success. I have also done some further reading and discovered something startling. How about some low dose chemotherapy that does not target cancer and normal cells, no side effects but yet more effective than high dose conventional chemotherapy?

Metronomic Chemotherapy
In 2000, two cancer research groups published a remarkable observation, in tumor-bearing rodents, low-dose chemotherapy, too low to evoke side effects or have a meaningful direct impact on tumor cells, when given on a daily or near-daily schedule, could markedly retard tumor growth.

This proved to be true even when the tumors were known to be resistant to the chemotherapeutic drugs employed. The solution to this riddle was that the chemotherapy was slowing or preventing angiogenesis. During angiogenesis, new endothelial cells are extremely fragile as they branch off from existing blood vessels, multiply, migrate into a tumor in response to chemical signals secreted by tumor cells, and eventually form themselves into tubular structures to give rise to new vessels. Whereas the endothelial cells lining established vessels only rarely multiply, are stabilized by growth factors provided by neighboring cells, and are rarely killed by clinically feasible doses of chemotherapy drugs. The endothelial cells engaged in angiogenesis are extremely sensitive to killing by these drugs, much more so than most cancer cells. Thus, when low-dose chemotherapy is administered on a daily schedule (known as "metronomic" because it is regular and even like the beat of a metronome) the continual death of endothelial cells attempting to form new blood vessels can substantially disrupt the angiogenic process, slowing it down notably.

One of the particular merits of this metronomic approach centers around cancer drug resistance. Whereas conventional, high-dose chemotherapy tends to select tumor cells that are resistant to the drugs used, metronomic chemotherapy targets normal endothelial cells that do not grow resistant to the drugs. In other words, metronomic chemotherapy keeps on working when conventional therapy fails. Tumors may be able to adapt to a degree by increasing their production of pro-angiogenic factors that promote endothelial cells survival. This explains why cancers, which initially regress in response to metronomic therapy sometimes grow back despite continuing therapy. The cancer confers this relative resistance; not the endothelial cells themselves.

Recently, a further benefit of metronomic chemotherapy has been established. It tends to selectively kill a population of immune cells, called "T-reg" cells, that function to suppress the activity of immune cells capable of attacking the tumor. These are the natural killer (NK) cells and T-cytotoxic cells. T-reg cells often congregate within tumors and secrete hormone-like factors that "turn off" the immune cells trying to attack the cancer. Thus, metronomic chemotherapy has emerged as a useful adjuvant to therapeutic strategies intended to boost the tumor-killing capacity of NK and T-cytotoxic cells.

The utility of treating rodent tumors, including transplanted human tumors, with metronomic chemotherapy has now been confirmed in a great many studies. In some of these studies, combining such chemotherapy with other measures attacking the angiogenic process has led to complete remissions of pre-existing aggressive tumors. Other studies also showed that metronomic chemotherapy can be useful when used in conjunction with conventional chemotherapy.

The most extensive published clinical experience with metronomic chemotherapy regimens has been provided by oncologists in Milan, who have documented the long-term responses of patients with metastatic breast cancer to a metronomic regimen involving daily cyclophosphamide (50mg) and two weekly doses of methotrexate (5mg per dose). From the patients using this regimen, 32% achieved either a complete or partial remission, or a stabilization of disease lasting at least 24 weeks. In about 16% of patients, no tumor progression was noted for over a year. Even in the patients in whom progression did occur, it seems likely that the therapy was often slowing the spread of the disease. The especially good news, since metronomic chemotherapy is intended for long-term use, is that this regimen was essentially free of annoying side effects. Only a mild suppression of white cell count was observed in a small minority of the treated patients.

Since metronomic therapy is directed against endothelial cells, not cancer cells, a metronomic regimen that works well with one type of cancer should work well with all types of cancer dependent on angiogenesis for growth.

Tuesday, March 6, 2012

You Only Live Once

Depressed or not, life has to go on. Ever since my China trip, I have been resting at home. My rests mainly consisting of either lying on the bed or sitting on the couch. And the main problem was that I was not able to sleep well at night. However, I noticed some changes lately. Since the last three days, I have been sleeping rather well. Able to sleep at night is very important. While cancer patients has been advised to rest more, I have also been thinking that sitting around resting is not very good for me. Now that my condition has improved, I feel it's time for me to be more active. To live life fuller instead of just sitting and lying around. Why make myself feel so pathetic? Life is short and literally applies to cancer patients. How many more 10 months do I have? To feel alive, I must live like as if I have no cancer. I must go out and meet friends and travel around too. Of course, I must bear in mind not to overstretch myself too much and also get sufficient rests. Yes, that's what I will do from now.

Every battle that takes place, whether within the body and mind or outside of it, is always a battle against oneself.
Zen Saying

The saying part is always easy. Even a three year old child can say it. But it's so difficult to put into action.

I am at the cross roads. The cancer spread signals a new path for me. It used be only one road but now has fork. I have been walking the old road now reaching the junction. I have a choice of continuing to walk on the old road or take the fork. My experience with the old road has been good but the results lately tells me that this road may lead to nowhere. Choosing the fork appears to be a natural selection under the circumstances but that fork road is uncharted. It's like selecting an appropriate therapy to deal with the cancer spread, not so straight forward and involves risks. There could be other options, each also having its own risks. On a day in August of 2006, while playing on the Redang beach, I was swept out into the sea by a strong wave together with two of my other colleagues. By far, I was swept the furthest away. Luckily one of my colleague managed to get back to shore and went for help. Meanwhile, I have used up all my energy trying to swim back onshore and I was so tired out in the process. I have been out in the sea for I think more than 15 minutes and I began to experience hypothermia. My skin started turning blue and before I knew it, I have lost control of my hands and feet. I closed my eyes and only the natural buoyancy was keeping me afloat. I told myself "so this is my last day on earth?" So I closed my eyes and waited for my life to end. Meanwhile, some seawater began to enter my mouth. I think only two of my sense faculties was working, touch and hearing. Just when I thought I was a gonner, I heard someone telling me it's OK. Got you! I felt her holding my hand as she pulled me all way back to the shore. Now, at the junction I am getting similar feelings. It's like having to experience dying again, only this time it will be terrifying.

I think I did not learned anything from the Redang near drowning experience. That was suppose to be a life changing experience. I was hospitalised and discharged the next day. I was walking and laughing. I went back to Redang Island. So I became egoistic. Didn't reflect on the incident and had a re-look at my life. A month earlier in July 2006, I went for full a medical check-up at a hospital. My lungs were clear. There was something not right in my blood test results. In those days, I depended on the doctor to read and interpret the results to me. Only one result was out of range, my GGT level and my doctor gave me clean bill of health. I am not blaming her now. The GGT level tells me that something could be wrong with my pancreas and liver. But I did not know that then. If I had investigated further, I would have probably discovered the kidney cancer then, most likely at Stage 1 or 2.

Monday, March 5, 2012

Keep Hanging On

Every where I look, its depressing. I have not been able to shake off my depression. At times I feel I have almost beaten it only to find myself sinking deeper in. It's like quicksand. The more you resist, the more you sink in. Living with cancer is already difficult and to find your cancer advancing is very depressing. Still it's a choice of how I make of it. Continue to indulge in self-pity or make the best out of it. But I am also very tired. Physically I am exhausted. Mentally, I have tried to cope as much as I can take. Perhaps being depressed is one way to help my mind cope with so much pain. I don't know how much longer I can maintain my sanity. I am just an ordinary person, no superman. Remaining positive is like swimming against the current. How much longer can I keep up? At times, I feel like trowing in the towel. Easy way out, like taking a holiday forever. Take a last glance at the world and close my eyes forever. As a Buddhist, I will take my chances on my next rebirth, whatever it maybe. My greatest regret is not having the courage to live the way I want, true to myself.

How do I contain those constantly felt negative feelings and depression? My best weapon is music, soothing and relaxing music. Next is to have someone to talk to. No, I don't want them to give me any advise, just be there for me and listen. When that is not possible, I go for walks. Why not meditation? The mind is agitated and the heart restless. Those negative emotions must be dealt with and not suppressed. Only then would relief come.

Yesterday after lunch, the pain on my abdominal area became more pronounced. Normally, the pain if it comes, are usually after dinner. As the day progressed, it became painful and I had to take the pain killer. Then I was awaken by the abdominal pain at about 5am. Woke up, made a hot oatmeal drink and then took another pain killer. I am monitoring the situation.

I think I need a holiday. I have decided not to go Sri Lanka in the middle of this month due to my abdominal pain. Perhaps later in the year. My friend Eddie from Ipoh has invited me to stay in his house for a few days. The last time when I was there, we spent so much time talking. He was my colleague from my banking days in the 80s. He is retired and so we get to talk for the whole day. When you get older, you reminisce the good old days. The best time we spent together was in 84, together with his colleagues, we stayed at Strawberry Park, Cameron Highlands. That was the first time I went to Cameron Highlands. I fell in love with the place immediately. It consists of verdant hills and valleys. We booked a one room apartment. The girls took the room and the guys had to sleep in the hall. Actually we did not sleep very much. We spent the whole night eating and talking. We got together at the fire place and sang out hearts out, especially the heart touching song We Are The World. Oh, how I missed those days. I have not decided whether to take up his offer. This is because he is such a good host, I don't want to trouble him. He would drive me around and this time he said, we could go to Cameron Highlands to stay for a day. Very tempting offer. I may just go to have a break in routine.

Think for a Moment

NEVER JUDGE ANYONE BECAUSE You never know how their life is or as to what is happening or what they’re going through. Just think ABOUT this moment.

-Author Unknown-

Sunday, March 4, 2012

A Breath of Air

I am breathing a sight of relief. I managed to sleep rather well yesterday, most of it undisturbed. I hope this would continue. The pain from my right abdomen has improved somewhat. I can sit and lie down without much problems. When I examine that abdominal area, I can feel the bulge around side of the abdomen. If I was not sick, I would probably think that it is the spare tire. Yesterday before bathing, I had a look at myself in the mirror, something I did not do for a long time. Still could not recognised my own cancer ravaged body. The visible ribs, absence of muscles and sickly skin. Looks like a seriously malnutrition person. Sigh.

The discovery of a new tumor on my right lung has made my breathing a little more difficult. I find that I can't breath hard. To escape the realities of illness, sometimes I bury myself listening to some old music. I like songs from the 70s, love those from the 80s and 90s. I don't understand most pop music made since the new millennium. I like to sing once in a while, however my voice is scratchy. I can't to seems to hold my breath and the voice always break up. Not that I am a good singer. My guitar is collecting dust. Now I can't even sing along my favorite songs. To borrow a line from ABBA (Thank you for your music), what would life be without a sound and a dance?

Yesterday, towards later in the afternoon, I began to cough again. Again, had a hard cough and noticed the phlegm had blood clots again. This time it was solid and darkish in color. Luckily the coughing stopped towards the evening.

As I was reading Bernard Khoo's blog, Zorro-unmasked, I saw something that I think is appropriate reminder to all the busy people out there. Of course for us cancer patients, it's even more urgent.

Sometimes we guard our feelings
when we should let them go
and tell the special people in our lives
that we care for them so.
One day without warning,
they may be gone,
At every opportunity,
tell those you love
that you care
before the day comes along
and they are no longer there.

Saturday, March 3, 2012

Dark Clouds Rolled In

Yesterday night, I managed to sleep without a sleeping aid. I believe this was due to my tiredness as I was not able to sleep the whole night the day before. I was awaken by a pain from my right abdominal area at about 5.30am, the same place where I had my HIFU procedure. It was painful for me to getup and sit on the bed. I think that could also be due to some internal bleeding. I noticed that my stools are rather red. I will take some samples and arrange for lab testing to check for traces of blood. Just then, I remembered my friend that was hospitalised in University Hospital (UH). I began to sent positive thoughts to her but was oblivious to the tears I was shedding. Then a thought suddenly occurred that maybe my life is also coming to an end too. I allow myself to indulge to get in touch with my emotions. There I was talking about no self-pity the day before and now overwhelmed with tears filled with self-pity. Hypocrisy at its best. I felt wonderfully sad. How ironic? I think I needed a good cry to soothe my bleeding heart. This was probably my subconscious mind putting my emotions back in order. Emotional cleansing if you will.

Last two days, my coughing frequency has increased. Yesterday I was coughing a little harder than usual and in one of my coughs, I notice blood stained clots. I also wanted to go for my IVC treatment in the afternoon but after discovery of the blood stained phlegm, I decided to postpone it to another day until I get my lab test results. As a precaution, I took some TCM pills Shui Feng Su He Wan to relief my coughing.

I have been meeting with my brother and sisters almost every week for quite sometime now. Prior to my cancer days, we don't meet so often. Each week, we have lunch together to catch-up. One of the usual question was "how I am doing?" I have been very upfront with my siblings and also my parents ever since they knew of my cancer. I try not to paint a good picture when it is not good, just to pacify them. I believe that by telling the truth, I would prepare them for my in-eventuality. But when it is easy telling your family the truth. In reality, I am also preparing myself for the acceptance. I tell them not to worry about me. I am doing all that are possible and the rest is not up to me. Until then, I will lead a very positive life and be as happy as I can. This does not mean that I have resigned to my present fate. I believe in changing destiny.

Last night, I went out to meet a friend at Taipan for a chat. It is a very busy commercial area and I was happy that I managed to find a parking space. After the meeting, I found myself stranded in the car park as I could not deactivate my car alarm. I called my neighbour who runs a car accessories shop for help. By the time he arrived, it was almost 12 midnight. Somehow, he heard me wrongly over the phone and went to another place to meet me. After checking, he said I forgot to switch off my car lights resulting in the car battery running flat.  Silly me. What was I thinking when I parked my car and not noticing the car lights was not switched off?

Friday, March 2, 2012

Still In The Groove

Dear friends and readers, due to lack of internet access while I was hospitalised in Chongqing, China, I was not able to read many of your comments, especially those written in December 2011 and January 2012. It is also not possible to access Blogspot.com in China. My apologies for not replying to you. After coming back from China, I was very weak and due to pain, I was lying down most of the time. I spent very little time on the PC and as a result, I still did not read any of the comments. Finally, I managed to read your comments last night. I am touched by all your comments and best wishes for me. The encouragement and support I get from all of you are so therapeutic and I shed tears of joy. I thank you from the bottom of my heart.

Having stage 4 end stage cancer is really terrifying. Everyday I look at death, not sure when it comes. Tears just fall, I am not in control. The heart is so sad, there are no events to compare it to. The emotions that goes through the mind are overwhelming. Clinging to my dear life, I pine for health, something that I take for granted that I have but suddenly taken away from me. No warning. I realised that my only chance of surviving is to turn the tables on sadness. No more self pity, no more feeling of helplessness, uselessness, no more all the no-nos, embracing each day as it comes. Traveling on a cancer journey then becomes an adventure. Everyday is a different experience. I learned the joy of sharing and thus this blog was born. It's incredible, you "meet" so many people from all over the world. People you don't know but encouraging you to strive on. Surely this is hope? From isolation of fighting this battle alone, I am now surrounded by so many well wishers. It's unbelievable. A friend told me that all I need to do is to reach out. Reach out I did. Surround yourself with happy people and you will be happy.

This journey is long. I am not sure how far I have traveled because I still can't see the road ahead. So for me, everyday I live is a bonus. I am so much happier now though there are occasionally bumps of sadness along the way. I met and made many new friends along the way. Some of them are also cancer patients and we stay in touch encouraging each other to strive on. The road is not always smooth riding. Sometimes, it's like traveling on a steep and winding road with a deep ravine by the side. Anything can happen. For example, yesterday I received an email from a cancer friend and this is what she wrote:

Sorry I am having short of breath yesterday afternoon, now in UH. If they can't solve the problem for me able to travel to Germany. I may have to say bye bye to all of you!

Immediately my heart sank and I shouted no! I just could not contain my tears. Not another please. I lost a friend in October 2011 last year, one in December and yesterday I received a email that read "I regret to inform you that my brother Winston has passed on and called home by the good lord. He passed away on Sunday 26 Feb." He was fine when I met him a couple of months ago. This is hard for me to take. I quickly composed myself and replied to her to be positive and not jump the gun. I am sure the hospital will do whatever they can to clear her breathing problems. I am sending positive thoughts to her.

Although I am a kidney cancer patient, I can really understand her problems because the tumors has spread to my lungs too. If I am not able to contain the tumors, they would grow and occupy my whole lungs and I was also die of breathing difficulties. She was doing quite OK and was planning to go to Germany with me in April. But all of a sudden, the situation changed. But I am still hoping that she can come along. Such is our lives.

Thursday, March 1, 2012

One Sided Affair

As I was listening to this very romantic number of Ray Parker Jr's One Sided Love Affair it gave me the idea to write about affairs.  After some serious writings in the past couple of weeks, I though I write something in a humorous way. I wrote this entire post while listening to that song. A loveless story, if you will. I am not good at it but I will try. I hope you will enjoy it. Entertainment magazines, especially those from Hong Kong have full of them, some real and probably most made to believe. Magazines like these sells like hot cakes. Somehow people are always interested to know about affairs. Right? So read on.

Many of us have been into love relationships. But this loveless relationship or affair if you want to call it, is between me and Ms Kidney Cancer. This is a one of a kind relationship, one that I am sure none of you want to be in. Unlike high school dating, you get to see your prospective partner and also have a right to accept or reject the partner. Then you hold each others hand and the relationship develops. Somehow I found out I am an unwilling partner in this relationship and till today I still don't know when this relationship started. It is safe to say all relationships does not happen overnight but over time. She has been eying me probably for the last 15 years. What a fool I am not to notice her interest in me. There were signs like always thirsty, blood in urine, chronic fatigue among others.  Ms Cancer, as I call her even thought I am in relationship with her, I don't know her well. In fact I don't even like her let alone love. This is a dry relationship. I have no emotional attachment towards her. I only knew that she was with me when she pinched my right kidney and I urinated blood. I remember in high school, the girl will pinch you if you ignore her when she is with you. So by the time I discover I am in relationship with Ms Cancer, it was too late. She is a sticker, in fact she love me so much that you can find her presence not only in my kidney but in my lungs and bones too. Once she sticks to me, I found out that it was so difficult to get her out of my life.

For a relationship to flourish, the partners agrees to a set of terms and conditions. An equal partnership. But in this relationship, I have no say. For example, the food I eat, she takes all the nutrients and only allows me to do the dirty work like flushing out the feces. She make me want to eat ice cream but she steals all the glucose from me. I do all the hard work of digesting. Then she puts on weight and I lose weight in the process. As she become strong, I become weaker. So it's better I break off this relationship that is one sided. For that, I had to take medication to lose her because like the elephant glue, she has become stuck all over me. The doctors recommend that I have three choices. Surgery, quick way to thin her down and maybe chemotherapy and radiotherapy to get rid of her completely. These treatment got some serious side effects though and I may also die in the process.

When you are in a relationship, your partner always care for you. They don't take advantage of you. OK, some jerks do. With Ms Cancer, she always take advantage of me. For example, she is active at night while I want to sleep and heal. She would not let me rest. The more meat I take, the more nutrients she steal from me. She could not care less if I had any. If I don't eat, she will take from my savings bank, my muscles. To control me, she gives me much pain to remind me that she is in control much like spouse abuse. And she becomes so greedy, she wants to take over my body and consume me whole. Little does she knows that she can't have the cake and eat it too. But such is her character.

By the time I discovered the relationship, she has taken quite a lot of control over me. In Chinese, they say Queen's Control. Sigh. I cannot negotiate separation with her. She knows if I take convention medication, it's like going for broke too. But she forgot I got still some other tricks on my hand. I can use alternative medication that she is not aware of. She forgot, I can become vegetarian and she will have no food to eat. She likes acids bath but I can take alkaline foods to deny her beauty bath. I must admit I let her control me for so long unknowingly, now it's a little difficult on my part to wrest control back.  Still I will continue to push to terminate this one sided affair that has no benefit to me but she is not budging.

This relationship is still on going and work in progress. Rest assured I will kick Ms Cancer out of my life for good. I just cut some part of her in December and will be getting rid of her for good in Apr/May. Stay tune for the next episode of One Sided Affair - Part 2.