Two Lucky

Things seem a little less dire than they did a few weeks ago. Jesse’s latest PET scan results came in today, and there is much to give thanks for. First, it is Dr Kim’s opinion that what is causing his left axilla to swell up is lymphedema, and not cancer.

Lymphedema, to put simply, is what happens when after extensive surgery, due to missing lymph nodes, fluid accumulates in your body. It causes pain, swelling and loss of full-range movement. Lymph nodes are typically found in your neck, armpits, chest, and groin.

So, it is not a big surprise. In less than a year, Jesse has had about five surgeries and four weeks of high-frac radiation to his left axilla. His left back, shoulder and arm are now red, blistered, misshapen. Still, the news that it is not cancer brings tears to my eyes.

Second, with regard to lung involvement, the nodular clusters in his left lung have been classified as benign. The four nodules in his right lung, however, have been confirmed as melanoma metastases. I suppose when you are asking for very little, every little piece of good news is triumphant. But some days, it is difficult to shake off this anger: Why him? Why us?

I am thankful for this little reprieve. Very little is needed to fuel hope, to keep the spirit going. But the journey seems so vast, our goal so remote. What I really want now is a solid, unqualified piece of fucking awesome news.

In every true relationship, there comes a moment when the love you feel for a person becomes apparant. Contrary to popularised media, it is usually not a consequence of some dramatic action.

You do not realise you love someone while dropping copious amounts of cash. It does not happen in physical intimacy. Sometimes, it does not happen even when you find yourself ready to say these words: I love you.

It is usually something much simpler. It can be a look in his eyes, the way he searches for your hand even while he’s sleeping. The smell of his soap. For me, it happened one night when I was on the phone.

It was late, and he was drifting off to sleep, and right before we hung up, he said “good night” to me - so tenderly, almost accidentally - that I realised how deeply I felt for this man. I was terrified that I may soon never hear him say that again.

In that instant, I knew I would give up anything (take what extra, useless years I had) for him. And to feel that sentiment so honestly, so simply - as an immutable fact - was when my love became clear as a bell.

Sometimes we find ourselves in abusive relationships because we are too afraid to step out on our own. We turn towards the familiar, a space where good memories give comfort. We tell ourselves that whatever is happening now, that whatever has changed between us must be temporary.

Because if it is not, then where would we go from here?

Even after being left in the cold, we long so much for the hearth of old feelings that we do not see the great, bright fire in front of us.

The question: What is left here for us? Brittle trust, cautious hope - he needs only to wield the knife once, for anyone to see simply that he is capable of doing so.

Some great news from one of the drug companies. They have approved our request and will give us free three months’ worth of Nexavar for Rusty’s treatment. Each month we were racking up $5,000 for this one drug. So, this is great news. Thank you Bayer-Onyx Pharmaceuticals.

Today marked my initiation into covering politics. I spent the day listening in on the Budget Debate in Parliament, and to my own benefit, it made an important shift in my views of our governance here.

Before, I had spent most of my political life sympathising with the Opposition. They were politically down-trodden, hopelessly under-funded, and had little voice in our state-regulated media to garner any real support.

But today I realised how much of my sentiment had been misdirected. It wasn’t that I objected to any real policies put forth by the Opposition. It was that I recognised that I am part of the liberal left, and there is no such party here.

I have much respect and admiration for our ruling party. Each politician that spoke today displayed so much prudence, foresight, and depth of thought, that I could not imagine putting the country in safer hands, or finer minds.

Yet, who among the party members, speak for me? I want a more robust, transparent and competitive media. I want more freedom of speech, equal rights for all.

I want all deaf people to be able to at least be able to understand news on TV. I want all schools, shopping malls, and subway stations to be equipped with wheel-chair ramps. Most of all, I want the freedom from social and political judgment to be able to hold my gay lover’s hand in public. I want to be able to marry Jesse here. I want my government to tell me there’s nothing wrong in wanting the things I want.

In wanting the best for everyone, many of our society’s minorities fall by the wayside of policy-planning. Singapore is obviously not a failed political system. Even by other standards - economic, social, cultural - it is anything but.

But more attention, more representation, more care - and consequently more power - must be given to minority groups to allow their message in mainstream media. Most of us are not asking for much. We are not trying to be better. We are trying to be who we are. Political representation, in one form or another, would merely be a truer, and to an extent, a more meaningful and complete reflection of the needs of society.

It feels good to be back at work. Time finds a sense of purpose. Two more hours to the deadline, one more hour till lunch. After work, I hit the gym and run a resolute 4km.

2am. This is the time of night when everything congeals, feels sluggish. The weight of the day hangs on your neck, it’s time to go to bed. And tomorrow, everything begins again. From zero, from the first light, from the moment you open your eyes.

Jesse is feeling much better today, and that makes me happy. It is a little achievement in this epic of pain, one small step in the right direction. We hope to hear some news from the insurance company tomorrow. Or from the National Cancer Institute (NCI) in Bethesda. This week and the next, the pieces that make up our next few months will start forming the jigsaw. Slowly we try and search for the missing pieces.