Welcome 2013! We survive End of The World!

Hello to everybody! Yinsan asks me to help her publish her updates on the blog. I feel honored and happy to fulfill her wish. So here below I transcribe Yinsan's message to all of you. 
And also my very best wishes for everybody for New Year 2013!
Elisabet.
--------------
 (Yinsan speaking):
I am now using the wheel chair to move around for the first time in my life, (which my friends call it my Mercedes Benz for my Christmas present). I am mentally strong and spiritually high and in good hands.

Now, I have a 24-hour helper and a nurse who comes in every morning. I went for 10 times radiotherapy to help solve my double vision problem, but has not recovered yet.

I am on alternative treatment, for example, taking Chinese traditional medicine, juicing, brushing, head combing and Zapping! instead of chemotherapy.

Happy New Year to all!

Fundraising for cancer (by Elisabet)

Note: I decide to write with bigger font size, so it's easier for YS to read, as she is having some problem with her vision, as she said in her comment two posts before. 

Every year by mid-December the Catalan public TV shows a 15-hour programme called Marató (Marathon) on a Sunday to raise funds to fight against an illness. Many volunteers answer the hundreds of phones installed for the purpose to attend the many people who call to make their donations. Simultaneously, all kinds of events take place in many villages and cities all over Catalonia: singing, dancing, theatre performances, cooking, races, all kinds of sports... popular activities open to everybody in which children, adults, old people, whole families take part. All the money gathered from the tickets sold goes entirely for the cause. Even a CD and a book are published, where the singers and writers participate without receiving any money. Again, all the money coming from the selling of the CDs and the books goes entirely for the cause.

This year the aim was the fight against cancer, all types of cancer; all the money going entirely for biomedical research so that research centers and hospitals can start new projects to know more about the behavior of tumors and, therefore, be able to develop new medicines and specific treatments for each type of tumor, to make drugs more effective and with less side effects. It's what nowadays is called "personalized treatments" and the aim is to prevent metastases from happening and, in case they happen, turn them into chronic diseases.

What's been really amazing is that after 20 years doing this fundraising programme this has been the record year. Never before so much money had been raised. Taking into account that most of the donations come from the anonymous population and given the present context of economic crisis with such high unemployment rates, the effort made by the people and the solidarity derived from such effort is something really touching, deeply moving and admirable.
The amount raised to date is 10.113.152 Euro and, as donations can be made until end of March 2013, it can get even higher.

This gives us who suffer from this terrible illness big doses of hope, but also for those who will come after us; for my hope and my wish is that the people who suffer from cancer in future have much more chances of healing and that they don't have to bear so many side effects. So, less physical and psychological suffering.

Another positive aspect is that nowadays it doesn't matter where the research is being done: when the results come they will be shared by doctors and hospitals all over the world, so the new treatments will reach more and more people.

Things like these reinforce my trust in humanity, in society, and I'm happy to know that when it comes to serious matters, such important human values as solidarity are still there, like beautiful stars shining bright with the light of generosity.

A quote (by Elisabet)

I wish to share the following quote about optimism which I find inspiring. I'm translating it from a translation; my apologies if some words are not the same as in the original, but I'm sure the meaning is fully conveyed:

" No pessimist has ever discovered the secret of the stars, or has sailed accross unknown seas, or has opened a new door to the human spirit."
                                                  Helen Keller


In case someone wants to know more about her:
http://en.wikipedia.org/wiki/Helen_Keller

Sizes and statistics (by Elisabet)

When I was diagnosed with metastasis of my breast cancer two years ago I was told by my oncologist that the most threatening were my liver lesions. I was told that I had to undergo a long-term chemo treatment because the toxicity produced by the tumors in my liver might go to my brain and cause sudden death. Luckily, that didn't happen. It was only some months later (when the lesions had reduced more than 50% their size) when the doctor told me the initial size of my 2 liver lesions: 45 mm. and almost 60 mm. diameter. They were really big, so big they even touched each other and melted into each other. Of course I was frightened, but then I said to myself that I was not going to worry about sizes.

The same applies for statistics. I simply don't care about them. Of course they are useful to doctors, to science... useful for further research. So that's good, statistics need to be taken into account by the professionals in these areas, but not by me. As a cancer patient, I leave this task to the doctors and researchers. My job is to focus on myself, body and mind, my job is to keep alive, to try to wake up everyday with a smile... my job is to take the prescribed drugs (I'm on oral chemo now), to undergo the necessary tests and scans, and to just live.

One of the many things that make me feel alive is to write and, to my surprise, writing in this blog has become therapeutic for me. I write not only to express myself, but also in the hope that at least some of my writings can inspire and be of some help for those who read them with patience and understanding. I also write out of deep friendship for the creator of this blog, who is one of my best companions in this journey and whose courage and optimism are so inspiring and so important to me.

mri date 14/11/2012

They hv a new MRI machine.  But it still sounded like war zone despite thir efffort to play music and covered my ears with headset.

Impression: " mutltiple cerebral and carebellar metastases in patient with known breast carcinoma with no significant change in the size of the metatases compared with recent c.t. scan of the bra9n, however, the smaller metastases are not appreciating on the previous c.t.scan"

Ambiguous?  Detail reports showed I hv several tumors, the largest being 29x10mm on the right cerebellum.  Anyway, these r just nembers.

Life definitely has its own way of teaching us lessons and having brain tumors has become part of it.

A song about small things (by Elisabet)

Music is a good therapy. I came accross this song (I quote my favourite verses below and give the link in case someone is interested in listening to it; no video).

I was watching a TV documentary about a mountaineer running on the Alps, surrounded by stunning landscapes and the song could be heard on the background... Wow!
What is it that makes a song sound beautiful to the listener's ears? The melody? The lyrics? The context? The listener's mood? Probably a mixture of everything.


"If there's one thing that I've noticed
Out of all the things I've seen
Is that you can leave a footprint
In a place you've never been...
....
If there's one thing that I'm keeping
Out of all the things I've found
Is that the best way to be heard sometimes
Is not to make a sound...
....
If there's one thing that I'm sure of
Out of all the things I know
Is that you can keep on going fast
I'll still be going slow"...
...

From:
"Small Things" (The Audreys)

To listen to the song click on the words: "Listen while you read!"
http://www.songlyrics.com/the-audreys/small-things-lyrics/

Uphill with Hope (by Elisabet)

I am re-reading a book which I had read many years ago. There's a short sentence on one of its pages that didn't pass unnoticed back then, as I had drawn a thin line with a pencil on the side of the paragraph. It goes like this:
"If life is a journey, it is always a journey uphill."

We all have our own fights and certainly life tends to get complicated as years go by. Now that I have less health and more time, I sometimes indulge in my own thoughts and it occurred to me that there should be a reason for life being uphill. If we rush through life we may soon get tired, as it is tiresome to rush uphill. Maybe life is trying to teach us something: to slow down. In doing so we may be able to see beautiful small things to which we barely paid attention before. It's not necessary to suffer from an illness to put this into practice; we can do it in our busy daily lives... to slow down just a little every day. Every little drop counts and, even though life will continue to be a journey uphill, we will have learnt to stop and stare, to take deep breaths from time to time, and to continue walking uphill feeling invigorated, stronger, and full of hope. In doing so, in the long run we may improve our life as well as the lives of those around us.

It also occurred to me that I feel like an alchemist lately. It's not easy, it requires constant efforts, it's a hard task to turn the negative experiences (in this case related to cancer) into something positive or, at least, not so negative. But it can be done. It's just a question of keeping on trying, of never giving up, of never losing hope. So I keep trying, like an alchemist trying to turn lead into gold.

Welcome to our blog

Let me officially introduce Elisabet, who has been the guest author in this blog for a while now, and accept the co-authorship of this blog from here on.  We met through a common friend some years ago, and reconnected - we had rather similar metastases, except I now also have tumors in my brain.

Throughout the journey, I have met many friends, some new, some old, some reconnected and so far all of you have been most supportive.  Allow me to take a moment to ackowlege all of you who travel this journey with me.

Each of us have our life journey to complete(according to a teaching, one reincarnates and return to learn in future if one misses the lesson) and am very grateful to hv your support in this journey.

Some colour (by Elisabet)

A few days ago I had a scan done on my pelvis and left femur for the doctors to determine the exact area where I will need radiotherapy.
I was in the tubular scan machine and I could see the wall in front of me, 4 or 5 meters away. There was a window through which I could see the computers, the doctor, and the nurse. A big grey rocket was painted on the wall in such a way that the window had become the window of the rocket, the background was dark blue, there was a planet painted on the left upper corner of the wall and below, by the side of the rocket, there was a green extraterrestrial being with funnels as ears, antennas on its head, and a smiling face.

Once the scan was over I told the nurse who was helping me stand up that I liked the painting. She said that it was made by volunteer people and it was meant for children, so that they are not so afraid when put into such a machine. But she added that it had an even more positive effect on adults. I said I totally agree.

I had some fun during the uncomfortable scan test. I imagined I was travelling in outer space, in my own spacecraft, when I came across that rocket (busy traffic, up there!) and through its window I could see the crew and some of their machines. I could see them and they could see me, as if we were all floating on space.

That painting on the wall added some colour to my day. Thank you to the anonymous people who make hospitals more friendly places for all.

Everyday is a gift (by Elisabet)

(transfered here from previous comment by Elisabet to my previous blog entry)

Why are tumors so stubborn that they keep coming uninvited?
It's been about two years now since my metastases started and I'm still here, too, to share this difficult journey with you.

In my case, when it started it was liver and right hip bones mets. My treatment worked, but now it's liver again, left hip and left femur, a spot on a rib, a spot on both humerus and a node somewhere in my thorax. I'm going to be given new drugs, too and I may need radio on my left femur at some point, as it's starting to hurt.
In the meantime I keep counting the blessings and being thankful to... to what? Life, yes, that's it! I'm thankful to life for all the good things, moments, experiences that has given me in the past and also thankful to life now to still be able to walk, to breathe, to enjoy food, to wake up every day and see the sun, the rain, the clouds... the little surprises.

I think that the more complicated our illness gets, the more we treasure the simple things.

If this is the journey that life had in store for us at least we can share it and fight it together. Life gave us the gift of our connection. Let's keep seeing every single day as a gift...

Scan Result 31/10/2012

My CT Scan yesterday last paragraph
"Impression:"
"Previous left mastectomy for breast carcinoma with increased size of brain metastases, but no evidence in the chest, abdomen or pelvis"
"Stable bony lesions at L1 and L5 vertebrae."
It means that my other parts are clear execept brain. I still have multiple lesions/tumors in the brain to sort out. In short, I am well so not to worry. If I could survive 3 years, I could last few more at least. my oncologist not happy with the result and he will give me chemo, maintain old drugs and prescribe new one. This time, no disagreement from me, so I just did chemo today.

Time to eat. Its a blessing that I found this vegetarian caterer (behind B-suite hotel) and dad will cook some fish or organic chicken to ensure I have some meat. 

Also thanks to friends who show concern about scan result. 

Physio therapy

Started physiotherapy, and has been working on it everyday. Lucky that I have a great personal therapist, my dad, who spends time assisting me to perform my routine exercise. So far, so good. I still limped but I know to swift my body weight to the left to strenthen it. i still have problem with left hand but by next week hopely i get strainer on the wrist to straighten it. Baby step. I'm sure babies progress faster on average but I'm now learning tricks to "unlearn" and "relearn" ways to control my motor functions. It's always fun to learn new things, or to learn old things(simple thing like walking) in a new way!

Time (by Elisabet)

Time (by Elisabet) I am beginning to think that living until the age of 40 and above is a miracle. Life-threatening diseases, natural disasters, road accidents, mountain accidents... take along with them so many young lives! A meteorologist, good person, good colleague, good professional, who had been working at the Catalan TV channel, TV3, for 16 years passed away at the beginning of July at the age of 40 due to a mountain accident, overnight. It was not an especially difficult hike, but a series of misfortunes wanted him to end his days on his beloved mountains. I didn't know him personally, but we were used to his presence in our homes, through the TV, while having lunch or dinner. He was someone so familiar, so enthusiastic, who would come often to update us about the weather; big issue, the ever-changing weather, in an area where we enjoy (and suffer!) the four seasons. Some days before this took place I had read the article on this blog dated June 22, 2012, where that nice comparison was made between mountain hikes and radiotherapy. My mind went immediately to it. While things like this happen we continue living. Cancer is a very strange illness; except for the most unfortunate cases in which the diagnosis takes place too late and the end comes too soon, it is an illness that gives us something we always longed for, or used to complain we never had enough, or we usually ran out of: time. Even with metastases we have learnt the hard way that there's still time ahead of us and we treasure it more than ever. We feel we are “buying time”, indeed. Cancer has given me a different perception of time, a way to discern what's really important from what's not. There's been a change in priorities and I stopped doing long-term planning. Now I do short-term and mid-term planning (short-term meaning tomorrow; mid-term meaning next week, next month). Not that I don't think about next year and the following years; I do it with hope, but not with the urgency to plan on anything. Cancer has taught me to slow down and at the same time to stop postponing things I had been wanting to do. They may be simple things such as watching that film, or reading that book, or bigger things provided my present situation allows me to do them. The meteorologist couldn't “buy” any extra time. Of course he was spared from the physical and psychological burden that an illness like cancer implies, but while he's already gone we are still here to share our thoughts and experiences, our stories, our side effects... here to enjoy life, to experience happiness in different ways that can be unexpectedly highly rewarding... here to fight, here to keep holding on to life like climbers holding on to the rocky mountain walls.

Free and Busy

When asked, what do you do with your free time? My answer could be "I don't have free time." or another way of interpreting could be "I am free all the time". Free time usually refers to time after work, free slots without fixed appointment. From the usual understanding, anyone who has no "fixed work" probably have lots of free time. More than ever, my time is spent living and healing, consciously deciding how i would spend my "free time", which is now. "Life is what happens to you when you are busy making other plans" - my favourite verse from a song. I am now using my free time to blog and to let everyone know that I'm happy to still be alive! I am now busy blogging to thank everyone for the encouragements and loves that fill up my live.

ct scan post whole brain radiotherapy

Well, CT scan showed "lesions in both cellebellar hemisphere are not measureable, appearing as poorly defined enhancing lesions." So, at least it's good news for now. Even though I am now getting slight numbness on my right fingers and toes, still working on recovering my motor skills, and most important of all, my constipation, at least it's comforting to know that there's no new lesion. Thank you for all your prayers, wishes, supports and encouragements!

How are you?

A very simple question, with kind intention, but very tricky to answer, especially via sms. Firstly I have to guess the intent of this querer - does he or she know about my recent metastases? What replies should I give? If I answer with the standard, "fine, thank you," it seems ingenuine to close ones, but if I reply with details, there are simply too many things to say. So, for those who just ask once in a while, I might say, "Thx for thinking of me. Coping well, n hope you are well." Here are just a few one liners that pop up for those who know my recent situation. "I finished radiotherapy with no apparrent progress but surviving." "I now walk with a stick." "My left fingers can't function so I type with right hand only." "Spiritually strong but phyisically challenged." "Still on chemo, n surviving." But none of these comfort my friends who probably just want to convey that they remember me, so maybe the best reply is "how are you?" which to me is just too polite. So, often I choose to just leave the message unreplied. So, thank you for your concerns and well wishes - I just thought it's easier for me not to reply without replying properly. It's great to be remembered but maybe I preferred to be remembered also about my other dimensions in life apart from my cancer journey?

Survived 15 whole brain radiotherapy sessions

Completed all 15 sessions. Even though my motor function has worsen compared to the beginning of treatment, at aleast I survived, with no obvious brain side effects like memory loss- i remember my passwords! The doctor says it takes time to allow my nerve to rebuild/reconnect and it's left to be seen how much I would improve, in time. Only a scan could tell how the tumor(s) responded to the treatment but this should have controlled the growth. In fact I have been thinking that this is less demanding than the hiking tours I did - in unpredictable weather condition that included hail storm, blizzard, exposed to environmental risk in a foreign land - and I survived. This treatment put me in controlled environment, with side effects like fatique, mild diarrhea, and hair loss, but these all happen in the luxurious home environment where i have access to comfortable bed, food and care, at any time. This is very different from the high risk environment out in the wild, with physical and muscular exhaustion after hours of hiking, not knowing what awaits ahead, but simply immersed in the presence of unknown. For me, I would rather do the hiking circuits hundred times over to avoid 1 treatment which only lasts a few minutes but guess the treatment was not all that demanding when put under a simple comparison.

Finish 10 radio sessions

Still weak after 10 sessions so they probably give me bonus doses.

Did 5 sessions, 5 more to go

Am at the half way mark of scheduled radiotherapy but with no improvement seen. Patience. At least 5 more to go -they might give some booster dose after the 10th. So wait, shall we?

Fr hospital

My first attempt to blog with iPhone apps fr the hospital. Arrived at 2pm to a full room of patients. Lets hope this wont take too long. As I already did radio at 9-ish n blood test in the morning.

Sleepless n hyper active brain

I think my brain is in hyperactive mode after first radio session. It lasted only few minutes. There were rays beaming on my brain(could feel it with my eyes closed). The positive thought - i was being blessed with super power on the star trek space ship. The neutral thought - those radio wave will penetrate and kill some cells, good and bad cells indiscriminately, after that, i shall be fine. The negative thought - i was fixed on a flat table with a mask and bombarded with "bullets". Thoughts can be very powerful, so I now hold the believe that everything is going well, and my brain is just being activated by the therapy.

start whole brain radiotherapy tomorrow

Finally I decided to go for it. The regression in my motor function is apparent so let's hope this will work out fine. At least 10 course of whole brain radiotherapy. Side effects? Hair loss and also tiredness. The fun has just begun.

The milestones

It suddenly occured to me that I have been on treatment most of the time in the past 2.5 years, and the only time when I was off treatment was when I went away to Japan and the Philippnies, for a little shy of a year. It started with surgery in 2009, then chemo and radio in 2010, and I was lucky to have a break before returning to second round of chemo and Herceptinin in May 2011, and while I am still on Herceptin, here I am on 3rd round of chemo in May 2012 with possible whole brain radiotherapy. There were many criticism of me breaking off to Japan. Had I continued with Herceptin, maybe I would fair better. Well, nobody knows but I'm glad I did take those time off, as I had made great friends and experiences. The short duration away was one of the best times in my life. And my friend Annie who did Herceptin right from the start, had her metastasis as well, was joking that we are just "buying time" with whatever treatment available, and we need more than one hand to count the involvement of cancer - breast, lymph nodes, few spots in the liver, bones, and multiple spots in the brain. So, metastasis happens when we are busy living anyway, might as well live well. It also just occured to me that cancer has occupied so much of me that it took away any space of mid life crisis that might have happened to me. There's no need for decision on second career or to redefine what to do with the rests of my life. When staying alive becomes a day to day reality, the question of "what do you do in your free time" sounds rather absurd. I am forced to live in the present moment, and to be aware of every little detail in life, including the simple daily task like walking(my friends gave me a walking stick on standby), lifting my left index finger(now I type with only right hand as it will be much faster and taking less effort), buttoning up(maybe in my next life I could be a fashion designer for those who are physically or functionally challenged) and all these happen when I still have my right limbs fuctioning well! How many more cycles will thechemo be? How long more will this last? I have since learnt that these are not the appropriote questions to ask, at aleast not to my oncologist, as there will be no answers to these questions except when there comes a time when the cells in my body could give those answers.

Navelbine Day 8

Had my chemo today, the second one after a week, so it's day 8, and then i have 1 week rest next week before starting another cycle. The good news is tha my white blood count is sufficient so I didn't need the jab/booster to help boost my blood count. However, there's some bone pain/sore on the right wrisk or arm which is probably the effect of chemo, but those are just very minor things to worry about in the larger context of cancer management. The immediate threat is still about the growth and affects of brain tumor, and also the damage caused by it to the nerves. Today the oncologist said something very profound, at least to me, coming from the top oncologist. He said that we should get in touch with the heart, and not the mind or the intellect, if we are tired, then we need rest, if we are hungry, we need to eat. It's my rephrased of words, but that was his message. He actually suggested that our body know best, and to pay attention and listen to our body instead of all other "noises". And today, we stopped Herceptin, after being on it for about a year now. And I'm on Tykerb 5 tablets, and Dexa 0.5 bds, which means twice daily so 1 mg a day. Things are going alright, and the option for radiotherapy is still there, hopefully to shrink the tumors.

started 3rd round of chemo

Started chemo again on 21 May, about a year after I started the 2nd round last year. On Navelbine again as it was working for me the last time. This time I felt tired, and slept a lot. Probably also effects of Zometa, which was added into my list. Anyway, the good news is, the MRI on Monday showed that the tumor shrank so there's no need to rush into radiotherapy yet. The bad news is, my motor function keeps getting weaker- now I could hardly type with left fingers(or can type with huge effort), and had a limp as I walk. There are 2 new spots in my bonne from PET/CT on 18 May but those are not of immediate threat. One is in my left rib, where I banged on the wall while trying to catch the basketball, another spot on the spine, on L5. Things are under control, I hope and I'm enjoying myelf with the visit from Elisabet. It is such a joy to have great supports and companies from those who understand, and to know that we are not alone in this journey.

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.

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.

Simple things

The picture was taken using my handphone camera about 2 metres from the bird, which I believe is a king fisher. That was in Youth Park some months back. Sometimes, simple things and encounters like that just add colour into life. It's time to stop and listen to the details. Just focus on each moment.

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!

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.

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.

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...

Started Lapatinib/Tykerb

I've been put on oral chemo called Tykerb which is indicated for those with HER2+ metastatic breast cancer, starting today. Hope this works.

Ordain

Listening to the rain, feeling the breeze from the window, finding the pain.
I would rather die in Spain
than to despair in vain
while life tease me once again.

will start oral chemo again

Looks like I'll be on oral chemo called Lapatinip, indicated for cases where Herceptin fails (Apparently Herceptin doesn't reach the brain cells because it cannot get through the membrane, or something like that) so I'll be on new drug, but the good news and bad news is, this is oral treatment, which means I don't have to go through the drip process but it's three times daily so I need to be discipline to eat... I'm so hopeless in this so far so a good training...

Anyway, after 2 stressful day, today's CT scan showed that the nodes are smaller than in MRI taken 2 days ago - not sure why, probably because of the dexamethasone given since last night. Anyway, will see how. So far so good.

Cerebral metastases

In case this term is unknown to you, cerebral metastases means the cancer has spread to my brain. My treatment has worked but Herceptin, the targeted treatment does not get to the brain, so the MRI yesterday showed a few nodules in the brain. The treatment ordered by doctor is radio therapy and further chemo.
Well, life is such. Just when I was planning my trip to Spain, this has to happen. Maybe it's my mother watching over me, maybe its the Allah, as my oncologist say - we can only do our best and the rest depends on ??? God, jesus, guanyin, buddha, Allah, whoever we call...
To me, its fine, as I've lived, and still learning to live...
Please don't be alarmed, and please don't call me, as I'll be in hibernation again.

Just to know that I'm still well, and still healthy(except for the scan or whatever medical records).

LIVING IS MUSIC! (by Elisabet)

There is a "before" and an "after" in cancer, as in many other serious diseases. However, I feel like I am more the "before" person. Cancer doesn't define who I am. In fact, I don't talk much about it in my everyday life and don't even think about it most of the time. Cancer sometimes is just a small, unfortunate anecdote in my life. My mind is busy with so many other things and my body is ready to go for a walk, to take a deep breath... and both mind and body are ready to enjoy friends and family gatherings, and to do whatever activity is possible to do. I don't push myself too hard, I am not so demanding about myself. I don't indulge in self-pity and I try not to feel sad about the things I cannot do and, instead, feel happiness and gratefulness for all the things I can do. I've even discovered I can do new things that would have never crossed my mind. I also enjoy the still moments, the time to rest, the time when I am all by myself and may choose to read a book, to write, or to take a nap.

I would like to thank all of you who read this blog and hope that at least part of what I write is meaningful to you or may even help some of you, somehow. I would also like to express my most sincere thanks to Yin San, who encouraged me to write when one day I expressed my wish to write a comment on one of her articles. As soon as I started writing a rough copy at my desk, I realised it was not just a comment, but an article on its own. And she encouraged me to publish it. This is my 4th article and today I can say that writing in this blog has turned out to be a very rewarding experience, and Yin San has become one of my best companions in this journey.

I live in Catalonia, the North-Eastern region of Spain, bathed by the Mediterranean sea and with mountains as high as 2.500 to 3.000 metres above sea level. We are bilingual, as we speak Spanish and Catalan. However, Catalan is our mother tongue and the language we use every day, everywhere. Catalan is more widely spoken than Norwegian or Danish (just to give you two examples). It's a Romance language (from Latin origin) like Spanish, Portuguese, French, Italian, or Rumanian. Catalan literature dates as far back as the Middle Ages. There was a Catalan doctor and poet, Màrius Torres, who lived between 1910 and 1942. He died when he was only 32 of tuberculosis, a common disease at that time. He wrote most of his beautiful poems while fighting against his illness. He loved life as much as I do and he was very fond of music, too. I want to share the last part of one of his poems celebrating life:

"Life might be like an out of tune musical instrument sometimes
and yet living is music!"

P.S. In case you want to know more about Catalan you can check this interesting website :
http://wikitravel.org/en/Catalan_phrasebook

Celebrate each day

Tomorrow is the 15th day of Chinese New Year and the last day of celebration. This is the first time ever that I celebrate new year to the fullest, without having to go to work, nor to worry about hospital.

There were parties, gatherings, reunions, Jade Emporer's birthday, karaoke, friends and relatives. Just enjoying every moment. Today I bought a new 42" plasma TV so that I could use the blue-ray DVD player hijacked from dad's, and my friend said 1 inch for every year. However, in the Kuan Yin temple yesterday, the person told me I am already 43, according to the Chinese age! How time flies!

Few days ago, a friend wrote that her sister, a breast cancer survivor of 10 years passed away. I started counting the many people who died in recent years. Just few weeks ago, a friend lost her mum, someone else lost her grandma. There were streams of news about friends, former teachers, or some known people leaving us. Where have they gone? Would their energy still be lingering around, based on the law of physics that energy cannot be created nor destroyed, but only transformed? So, how has the energy of the deads been transformed? How about energy of the livings? Surely these are all part of the larger system, and inter-connected.

While there are many things we haven't figured out, the best we could do is to celebrate each day, and make sure we transform our own energy into something positive.

Off chemo today, still on targeted therapy til nex scan

Spent the whole day in the hospital - 9 hours!
Doctor saw the PET/CT scan, discussed with me that he will cut the chemo and retained Herceptin.
Next scan March, and hopefully I'll be off treatment if the scan remains clear!