Saturday, May 12, 2012
Radiotherapy to solve my motor function?
It's been a month since the diagnosis. I survived without radiotherapy and I could feel my nerves giving in to the tumors. From numbness to stiffness to weakness... it is slowly showing in my movements. My fingers still function but now typing with difficulties on my left fingers.
So, it's a matter of time, I guess, for the next step, which is radiotherapy. Let's see how it goes, as I am buying time, and enjoying the moments with my new body - I'm grateful for all the functions that still work.
I remember Mr Tatsuya in Japan from the English speech class in PARC Freedom school. He was a true inspiration. He attended the speech class with difficulties in some of his muscular functions including speaking clearly. He often said "pass" when it's his turn to speak, as he takes a long time to compose his words and express himself. However, on the last class, when everyone was to give their final presentation, he prepared well, and delivered his speech. The teacher said, "we respect his intelligence", when I mentioned that it was empowering to even have him in the class. The speech class itself was challenging enough for most Japanese, as the participants have to do public speaking in their second language, English, but Mr Tatsuya showed us the possibilities. Possibly the only limiting factor is our own selves.
Saturday, May 5, 2012
Knowing and not knowing
How do we know when we really know? There was really a huge difference between the BEFORE DIAGNOSIS, and AFTER.
Are we to accept knowledge or to question? Just because the scan show that I have tumors, why has everything changed? Is it because of the knowledge that brain metastases is dangerous, life threatening? To me, emotion or the non physical aspect takes up at least 50% of this journey. It's not a battle for cancer, but it's a journey to explore the truth, as it presents. As most people have their own believe systems, and versions of truth, which they will try to share and influence others, out of good intention. However, whose version is right, and how are we to judge?
2 weeks ago, I went to a herbal specialist. He is well published, and has done ample research on cancer. He started asking about my records, and criticising about the treatment I have been taking, citing cases of deaths, as a results of the treatment. While I do not question his good intention, I doubt his confidence in his own herbs/medication. Surely, he has some failures, as he has his successes with patients. It is not that I do not believe in him, but still I questioned(in my heart) the version of truth that he knows.
My friends took me to Taiping to look for Mr Liew who initiated the Sabah Snake Grass. It's a plant which save lots of cancer patients. Again, I do not doubt the truths behind those stories. I have been told to consume some 300 leaves daily with green apple- something I read since a year ago, and have intermittently tried. It's a green drink which will cleanse the system and shrink the tumor. Again, I am sure it has worked for many, and I have had it for about 2 weeks now. In the past 2 weeks, I have felt better than when I first started my treatment but how do I know if it has worked?
My doctor is happy with my "progress" or non deteriorating state. I'm happy that I do not need radiotherapy(which demands for daily visit to hospital). While patients are told there's no or minimal side effects, why risk?
What I know now that I didn't know before, was that I get a lot of attentions and loves from family member, friends and relatives! It's amazing how others would be extra nice. I also know that I do not know many things, like how long we will live, and if there is after life. It does not matter if I do not know, but just be thankful for everyday.
Maybe at my dying bed, I will find the truth, or maybe I won't. It does not matter.
Tuesday, April 24, 2012
Simple things
Saturday, April 21, 2012
Beautiful Sunday
After 2 weeks, I've regained life back, at least am back to the same high spirit me 2 weeks ago! The brain tumors no longer bother me, even though they probably still living somewhere! It's really psychological, the "before" and "after" the news. There are clear physical signs but more importantly it is the physiology of bodies- how the different part of body system works, up to the cellular level.
Life is just great, with or without cancer!
Thursday, April 19, 2012
10 days
10 days ago.
Last Monday, 9 April, I woke up on a beautiful morning, had breakfast by the balcony just planning my day when I saw the missed calls and an urgent message from the hospital. Upon calling back, an urgent MRI has been scheduled. That's when the nightmare started.
That was a long story. When I last saw the oncologist on the 31 March, he mentioned the need for MRI following my complaint about the numbness which started on my left feet. That got me very alarmed and anxious. The numbness barely started for a few days and was so mild that it hardly bothered me. He placed a call to the Neurologist who had already left as it was a Saturday. Subsequent Monday I just couldn’t bring myself to the hospital-anticipating the wait on a Monday morning. I went on Tuesday and got number 2025, the first 2 digits 20 being the room number and the last 2 digit being the queue number but after waiting for about an hour or til past noon, the number called was at 2007 and I decided to move on with life. I went again on Wednesday and got the number 2015. This time I decided to drive home rather than wait in the hospital. To my surprise, I got a call just around noon that it’s already my turn. Informing the assistant that I’ll be on my way there, I rushed into the hospital and to my delight, they waited for me.
Slightly feeling guilty of holding up the other patients, the examination began. It was such a casual examination. The Neurologist started by asking me about my symptoms, then going through my files, and finally examining the functions of my fingers and toes. Her verdict was that it’s a side effect of chemotherapy(without effort to differentiate Herceptin as a targeted treatment, or antibody rather than chemo), even though I told her that I’ve been on the same drug for almost a year. I mentioned to her about MRI to which she dismissed but saying that she’ll keep my files opened for future. I asked her what kind of the symptoms I should look out for before the next visit. She smiled and said she didn’t want to put thoughts in my mind. So, with a relief, I informed the oncologist of the findings of Neurologist and went off.
Well, I continued to have numbed fingers and toes for the next few days, and a suspicious mind. It was a text message which came in on Saturday morning which started the whole fiasco. It was just from Esther, a friend who invited Annie and myself to an event, to which I declined and replied with thanks. They are both my cancer support friends, that I met 2 years back in Relay For Life in Youth Park. From Esther, I found out that Annie just suffered from a relapse. When I finally got hold of Annie, and found out about her brain metastases, I knew I had to call my oncologist. Annie spoke of the same symptom as myself- numbed fingers, which lead to a semi-stroke episode. Thanks to her alert, the MRI was finally scheduled on 9 April, about 9 days after the first mention of MRI by the oncologists. Of course he was furious for the delay, but back then the symptoms were just so negligible.
If it were divine interventions, I had got it 3 times. First, it was before my original diagnosis, second, the discovery about my liver metastasis, and now the third, and more drastic discovery than before.
My first discovery was just a regular breast health check. On the way to a writing session with Amy, I saw this banner outside the hospital and decided to just take the number. Little did I know that the regular checkup would change my life. At 39 years old, I was even told that I didn’t need a mammogram, until I told the nurse about my family history, that my mum died of cancer.
My second discovery was in the Philippines. It happened about a year ago, just around Easter celebration, which was huge in the Philippines. The whole incident also happened like a movie drama. Firstly, I went to the doctor Dr Merced who was recommended by Susanna, and I saw her just declared about myself. “I have cancer, but otherwise, I am well.” She ran some tests and loaded me with vitamins, etc. Upon examination, she sent me to repeat my liver function test, as I told her my ALT was marginally high when last tested in Japan, November 2010. By the time I got the test result which showed an abnormally high reading, I was ready to fly off to Mindanao for Easter break, exactly a year ago! In that trip, I was feeling suspicious, but it was such a wonderful trip that I even broke my fast to eat a few pieces of roast pork(Jaspers’ family ordered a barbequed pig and took it with them to picnic site- the enchanted river). Upon returning from the trip, I checked in the next day to Miriam College for a 1 week workshop, so it was only until a moment of awakening that I knew I had to skip the workshop and attend to myself. The lecturer, Saskia, was saying, as activist, you need to first take care of your health. So, I called the doctor immediately for an appointment, to which she sent me for ultra sound of my abdomen and breast. It didn’t end there, as I to find out about how to do both the abdomen and breast scan without going to 2 different departments, so another 2 weeks went by before I located a lab, which was just walking distance to my apartment!
The scan showed nodules on the liver, and sent me right back to Dr Merced, who suggested a series of intensive treatment, including B17, etc. Somehow, I didn’t opt for that and went for liver specialist and oncologist for second opinion, and I was back home on 19 May, the exact anniversary date of my previous CT scan which said I was clear. Maybe it’s predestined. I was meant to come back to deal with my own illness, which I am learning to embrace. 11 months past.
Today April 19 2012. Brain metastases had been confirmed last week. Since then everything changed. 10 days ago, I was well, and ready to take on the world. I had a workshop and Europe trip scheduled, and I was feeling great about life. Now, after doses of drugs and medications, my left limbs continued to be numbed and stiff. My spirit hampered. Is it really about the tumors growing in the brain, or the effect of the drug, or the belief that my tumors are taking over me?
At times, I continued to sit by the balcony, and enjoyed the scenery as I used to. At times, I just wonder how all these would end. I am writing my own encounter, and I do believe there is a message to all these, that I am to live and write, and tell my own stories, until I could no longer write. At this point, it stops bothering me. Whether I am having numbness, or fatigue, whether I get to go to the workshop or make my dream trip. Maybe that’s what I am to acknowledge. To accept things as they come, without any plan.
Am I a fatalist? Or am I fatal? What does it mean anyway? I have been forced to learn things and accept life as it comes, and just surrender.
Last Monday, 9 April, I woke up on a beautiful morning, had breakfast by the balcony just planning my day when I saw the missed calls and an urgent message from the hospital. Upon calling back, an urgent MRI has been scheduled. That's when the nightmare started.
That was a long story. When I last saw the oncologist on the 31 March, he mentioned the need for MRI following my complaint about the numbness which started on my left feet. That got me very alarmed and anxious. The numbness barely started for a few days and was so mild that it hardly bothered me. He placed a call to the Neurologist who had already left as it was a Saturday. Subsequent Monday I just couldn’t bring myself to the hospital-anticipating the wait on a Monday morning. I went on Tuesday and got number 2025, the first 2 digits 20 being the room number and the last 2 digit being the queue number but after waiting for about an hour or til past noon, the number called was at 2007 and I decided to move on with life. I went again on Wednesday and got the number 2015. This time I decided to drive home rather than wait in the hospital. To my surprise, I got a call just around noon that it’s already my turn. Informing the assistant that I’ll be on my way there, I rushed into the hospital and to my delight, they waited for me.
Slightly feeling guilty of holding up the other patients, the examination began. It was such a casual examination. The Neurologist started by asking me about my symptoms, then going through my files, and finally examining the functions of my fingers and toes. Her verdict was that it’s a side effect of chemotherapy(without effort to differentiate Herceptin as a targeted treatment, or antibody rather than chemo), even though I told her that I’ve been on the same drug for almost a year. I mentioned to her about MRI to which she dismissed but saying that she’ll keep my files opened for future. I asked her what kind of the symptoms I should look out for before the next visit. She smiled and said she didn’t want to put thoughts in my mind. So, with a relief, I informed the oncologist of the findings of Neurologist and went off.
Well, I continued to have numbed fingers and toes for the next few days, and a suspicious mind. It was a text message which came in on Saturday morning which started the whole fiasco. It was just from Esther, a friend who invited Annie and myself to an event, to which I declined and replied with thanks. They are both my cancer support friends, that I met 2 years back in Relay For Life in Youth Park. From Esther, I found out that Annie just suffered from a relapse. When I finally got hold of Annie, and found out about her brain metastases, I knew I had to call my oncologist. Annie spoke of the same symptom as myself- numbed fingers, which lead to a semi-stroke episode. Thanks to her alert, the MRI was finally scheduled on 9 April, about 9 days after the first mention of MRI by the oncologists. Of course he was furious for the delay, but back then the symptoms were just so negligible.
If it were divine interventions, I had got it 3 times. First, it was before my original diagnosis, second, the discovery about my liver metastasis, and now the third, and more drastic discovery than before.
My first discovery was just a regular breast health check. On the way to a writing session with Amy, I saw this banner outside the hospital and decided to just take the number. Little did I know that the regular checkup would change my life. At 39 years old, I was even told that I didn’t need a mammogram, until I told the nurse about my family history, that my mum died of cancer.
My second discovery was in the Philippines. It happened about a year ago, just around Easter celebration, which was huge in the Philippines. The whole incident also happened like a movie drama. Firstly, I went to the doctor Dr Merced who was recommended by Susanna, and I saw her just declared about myself. “I have cancer, but otherwise, I am well.” She ran some tests and loaded me with vitamins, etc. Upon examination, she sent me to repeat my liver function test, as I told her my ALT was marginally high when last tested in Japan, November 2010. By the time I got the test result which showed an abnormally high reading, I was ready to fly off to Mindanao for Easter break, exactly a year ago! In that trip, I was feeling suspicious, but it was such a wonderful trip that I even broke my fast to eat a few pieces of roast pork(Jaspers’ family ordered a barbequed pig and took it with them to picnic site- the enchanted river). Upon returning from the trip, I checked in the next day to Miriam College for a 1 week workshop, so it was only until a moment of awakening that I knew I had to skip the workshop and attend to myself. The lecturer, Saskia, was saying, as activist, you need to first take care of your health. So, I called the doctor immediately for an appointment, to which she sent me for ultra sound of my abdomen and breast. It didn’t end there, as I to find out about how to do both the abdomen and breast scan without going to 2 different departments, so another 2 weeks went by before I located a lab, which was just walking distance to my apartment!
The scan showed nodules on the liver, and sent me right back to Dr Merced, who suggested a series of intensive treatment, including B17, etc. Somehow, I didn’t opt for that and went for liver specialist and oncologist for second opinion, and I was back home on 19 May, the exact anniversary date of my previous CT scan which said I was clear. Maybe it’s predestined. I was meant to come back to deal with my own illness, which I am learning to embrace. 11 months past.
Today April 19 2012. Brain metastases had been confirmed last week. Since then everything changed. 10 days ago, I was well, and ready to take on the world. I had a workshop and Europe trip scheduled, and I was feeling great about life. Now, after doses of drugs and medications, my left limbs continued to be numbed and stiff. My spirit hampered. Is it really about the tumors growing in the brain, or the effect of the drug, or the belief that my tumors are taking over me?
At times, I continued to sit by the balcony, and enjoyed the scenery as I used to. At times, I just wonder how all these would end. I am writing my own encounter, and I do believe there is a message to all these, that I am to live and write, and tell my own stories, until I could no longer write. At this point, it stops bothering me. Whether I am having numbness, or fatigue, whether I get to go to the workshop or make my dream trip. Maybe that’s what I am to acknowledge. To accept things as they come, without any plan.
Am I a fatalist? Or am I fatal? What does it mean anyway? I have been forced to learn things and accept life as it comes, and just surrender.
Monday, April 16, 2012
Chemo and drugs
So, after a week of scans and consultations, here's the prescription:
I was started on dexamethasone 2mg on Wednesday to help shrink the water around my tumor.
Then I was given Lapatinip 75mg on Friday to control the brain tumor.
Today I continued with Herceptin which has been going on since last May.
Doctor gave me Neurontine to helped release the pain on my nerve.
My left fingers are numbed and now I experience stiffness as I type.
My left legs also is numbed but with sensation.
We'll monitor this and see if the drug works before deciding on futher steps, possibly radiotherapy.
I was started on dexamethasone 2mg on Wednesday to help shrink the water around my tumor.
Then I was given Lapatinip 75mg on Friday to control the brain tumor.
Today I continued with Herceptin which has been going on since last May.
Doctor gave me Neurontine to helped release the pain on my nerve.
My left fingers are numbed and now I experience stiffness as I type.
My left legs also is numbed but with sensation.
We'll monitor this and see if the drug works before deciding on futher steps, possibly radiotherapy.
Saturday, April 14, 2012
Symptoms for past 2 months
Now that I think back, there were 3 obvious symptoms:
1. My numbed left fingers which started about 10 weeks ago, which I've conveyed to the oncologist, It's natural to relate this to side effects of chemo and previous surgical removal of lymph nodes and left breast. Until I started feeling the numbness on my left leg/toes 2 weeks ago, and I told the oncologist on 31 march which he immediately warned me of the possibility of involvement of the brain. I was shaken but didn't quite believe him, as the symptoms were really mild. He referred me to a Neurologist, who examined me, and said it's probably side effects of chemo, so the MRI suggested by my oncologist has not been pursued.
2. There's constipation for the past 1-2 months, which got me worried as my bowel pattern has been so consistent before. Noticing that toxicity must be accumulating in my body, I even started warm water aenema, and did twice over a week's time, as I was still skeptical about the drastic effect of flushing my colon/intestine, etc.
3. My menstruation cycle which was consistent until end of January just stopped in both February and March, and returned a few days ago on 10 April.
The major changes in my treatment were that
1. the oncologist stopped Navelbine(chemo) in January after seeing the result of PET/CT scan, to which I was really pleased about
2. A week of delay in getting Herceptin as I went to Seoul in January
Otherwise, everything else were going great, as I was able to get back life without so many hospital visits/waits just to check the level of blood before/after each chemo.
In fact, I started to associate the numbness of my left hand to holding/using of iphone for the past 2 months. So, maybe I should change phone again.
If indeed my PET/CT end of Dec was indeed clear, and if it could detect up tumor to 0.5 cm, the growth rate of my brain tumor must be really aggressive, doubling every 30 days or so, to grow to the current 2.8 cm within 100 days.
So, what should I do now apart from taking drugs?
- communicate with my body and ask, what went wrong? There must have been cells which have been neglected all these while, when I'm busy making new traveling plans.
- restart a routine which allow me to monitor every little response of my body, and device a checklist to plot the progression/regression
- watch my diet and nutritious intakes,
- regular exercise (qi gong, and not the games like ping pong, basketball, etc)
- reduce phone/internet time
In the past 2 months, there were also 2 episodes which were associated with my tumor"
1. I banged my left chest against the wall while trying to rescue the basketball from falling over the chest level height wall, and as a result, I suffered physical pain for at least 3 weeks, and that was dated end of February.
2. There was an episode of suspected chicken pox, as I discovered rashes on my body. The oncologist smiled and just gave me some medicine and cream. The rashes, believed to be side effect of chemo subside within the next 2-3 days.
So, I believe every little jigsaw pieces is related, but just not sure how...
1. My numbed left fingers which started about 10 weeks ago, which I've conveyed to the oncologist, It's natural to relate this to side effects of chemo and previous surgical removal of lymph nodes and left breast. Until I started feeling the numbness on my left leg/toes 2 weeks ago, and I told the oncologist on 31 march which he immediately warned me of the possibility of involvement of the brain. I was shaken but didn't quite believe him, as the symptoms were really mild. He referred me to a Neurologist, who examined me, and said it's probably side effects of chemo, so the MRI suggested by my oncologist has not been pursued.
2. There's constipation for the past 1-2 months, which got me worried as my bowel pattern has been so consistent before. Noticing that toxicity must be accumulating in my body, I even started warm water aenema, and did twice over a week's time, as I was still skeptical about the drastic effect of flushing my colon/intestine, etc.
3. My menstruation cycle which was consistent until end of January just stopped in both February and March, and returned a few days ago on 10 April.
The major changes in my treatment were that
1. the oncologist stopped Navelbine(chemo) in January after seeing the result of PET/CT scan, to which I was really pleased about
2. A week of delay in getting Herceptin as I went to Seoul in January
Otherwise, everything else were going great, as I was able to get back life without so many hospital visits/waits just to check the level of blood before/after each chemo.
In fact, I started to associate the numbness of my left hand to holding/using of iphone for the past 2 months. So, maybe I should change phone again.
If indeed my PET/CT end of Dec was indeed clear, and if it could detect up tumor to 0.5 cm, the growth rate of my brain tumor must be really aggressive, doubling every 30 days or so, to grow to the current 2.8 cm within 100 days.
So, what should I do now apart from taking drugs?
- communicate with my body and ask, what went wrong? There must have been cells which have been neglected all these while, when I'm busy making new traveling plans.
- restart a routine which allow me to monitor every little response of my body, and device a checklist to plot the progression/regression
- watch my diet and nutritious intakes,
- regular exercise (qi gong, and not the games like ping pong, basketball, etc)
- reduce phone/internet time
In the past 2 months, there were also 2 episodes which were associated with my tumor"
1. I banged my left chest against the wall while trying to rescue the basketball from falling over the chest level height wall, and as a result, I suffered physical pain for at least 3 weeks, and that was dated end of February.
2. There was an episode of suspected chicken pox, as I discovered rashes on my body. The oncologist smiled and just gave me some medicine and cream. The rashes, believed to be side effect of chemo subside within the next 2-3 days.
So, I believe every little jigsaw pieces is related, but just not sure how...
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