I think this is the first time I took a good look at Ah Ma since her health got worse.

Her face got so thin that her cheek bones are so visible. Due to her deteriorating liver, she looks yellowish.

Seeing her in such suffering state, I couldn’t help but feeling sad. I tried my best to held my tears back as I didn’t want both her and Ah Gong see me.

Listening is an Act of Love

Listening openly, patiently, and attentively is one of the most significant expressions of love.

There isn’t a lot of people that is willing to listen to our problems.

There are days when we would feel a big boulder crashing our chest.

At times like this, what we are seeking if not advise but someone is willing to listen. I always call them ‘tree hole’. It’s like a hole made by woodpecker. I would throw everything into this tree hole, and it will fall down through the hollow tree trunk. That is a huge weight off my chest, and probably what I needed more than a sound advice.

But at the same times, being a worrisome me, I would always worried that I may burden this ‘tree hole’ by unloading my problems onto them, although they may say, “Don’t worry, just go on. You are not burdening me.” I have always said that people are not obligated to listen to us, but they did.

There is not enough of thank yous that I can say. Grateful.

‘New Disease’

Another MRI result.

The original white patch is at C4-C6 of my spine. it is a little enhanced, and extended further down to T1, as well as the nerve root.

This means the disease is still very active. It also means this is a new disease which the doc doesn’t know what it is yet or what caused it since all my blood tests came back negative.

The chest pain? It may be due to to either the steroid, the immunosuppressant, or because of this ‘new disease’.

I don’t like the word ‘disease’.

And… I am getting another new medication again. This time, it’s called neurontin, a nerve medication. Don’t know what is its function. Just eat then.

May the best of today be the worst of tomorrow

May you be as fascinating as a slap bracelet
May you keep the chaos and the clutter off your desk
May you have unquestionable health and less stress
Having no possessions though immeasurable wealth
May you get a gold star on your next test
May your educated guesses always be correct
And may you win prizes shining like diamonds
May you really own it each moment to the next
And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow

Steroid’s New Buddy

About today’s visit – doc said there is a possibility it can develop into a brain tumor, and affect functions like speech, swallowing, etc. But it’s still too early to tell.

At least one good news – steroid got reduced from 60 mg to 40 mg.

Happy? Nah…. too soon.

Steroid got reduced, but she is giving me another new medication.

It’s called CellCept, to suppress my immune system.

Guess it’s too strong until it attacks my own body.

Don’t get too comfortable.

Same as steroid, do your work and get out of my way as soon as possible.

Off to the Beach!

Not that breezy and fun beach, and not that I like beach much.

Today’s the day I am meeting this neurologist+researcher at Pantai Hospital KL.

Yeah, that ‘beach’. Literally.

Brought all my past scans, and test results.

She showed her powerpoint slides with details of similar illness, and past patients.

It’s like some business presentation.

So, this Dr Shanthi actually based in HKL but has a clinic here at Pantai on every Saturday. She flipped through all my test results, peeked at my past MRI scans.

Her summary – the symptoms I am having are considered mild but it may progress rapidly. The nerve inflammation may spread up to the brain. She suggested to redo all the tests.

The treatment? Steroid! For LIFE!

It won’t completely cure it but steroid will control it so that it won’t get worse.