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.