Two Lucky

I came to work this morning decidedly negative. It was one of those days, you know? You chug a cup of coffee, smoke a few cigarettes, hope that some jolt to your cerebral cortex will make things better, but it doesn’t. Maybe what I really need is a vicodin.

On these days, I wonder to myself what I’m doing here. It is clear to me where my priorities lie. I want to be with Rusty. But here I am, coming in to this office, every day, filing stories I am sure matter little in the cosmic scale of things. Love is what matters. If something untoward happens to him now, who will tend to him? How will I get over the guilt of being absent?

Rusty thinks differently. For him, this cancer has robbed him of almost every aspect of normal life. Once a marathon runner, his limbs can no longer be as impulsive, or dedicated. His daily schedule answers to doctors and nursing staff. Our lives are punctuated by scans and chemo protocols. I panic when he’s missed my calls more than twice.

So to him, my quotidian ritual is our way of standing up to the disease. He will not allow it to disrupt my life, too, and hold me hostage as it has him.

Every last night I spend with Rusty is surprisingly difficult. You would think that after six months of coming and going, we would fall into a habit. Tonight, as he sleeps, I sit up and hold his hand in mine. His fingers are longer, obviously, but his nails seem abnormally large to me.

It is quite a beautiful night, actually. Our bed is right by the window, which, stretching across the length of the wall, and only a few feet from the wood-panelled floor, provides a spectacular view.

With the exception of one or two tall buildings, the deep-purple night is brushed with thick trees that frame the streets below us. Mountains push up in peaks and dips in the background. A lonely Korean palace sits in the centre, quiet and regal. In the wee hours of the morning, it almost looks like a painting.

In the moonlight, Rusty’s skin seems to glow, even though I know it is pale from all the chemotherapy. There is a forgotten lash near his right eye. His bald head is like an infant’s. Not wanting to wake him, I resist the urge to stroke it. I do not know how long I stay like this, sitting next to him, watching him, watching the window. But soon, I fall asleep too.

Do you? By yomofo

Reaching out

I spent the day touring Johor Bahru, a Malaysian city north of Singapore. I was with 37 other deaf people, four of whom were volunteers like me, who organised today’s trip as part of the Singapore Deaf Association’s adult outreach programme.

The programme is a noble one. Started 21 years ago, it holds informal sessions with illiterate deaf adults every Saturday. During these sessions, volunteers teach them life skills, such as how to apply for jobs, manage their money, even how to read, write and sign.

Most of the early deaf immigrants who came to Singapore did not speak English, and used signs that originated from Shanghai. Others did not sign at all. They use what is known within the community as “home signs”. Simply, they are crude gestures that are not understood outside the family, since no standardised grammar system guides their expression.

Many of these deaf adults were left behind by an uncompromising government. When the government instituted English as the nation’s official language in the 60s, they failed to set up measures to help assimilate these deaf adults into mainstream society.

There were no schools to teach this new and strange language. There was no effort to help them acquire skills which, in time, could lead to industry expertise. The average age of the first generation of deaf people here educated in English is only 35.

Today, the situation of our deaf Singaporeans is not much better. Schools lack the government support to provide equal quality education. Interpreters, like myself, are mostly volunteers, untrained. Television programmes, including news broadcasts, are not captioned.

Every day, some basic right is ignored - and the relevant ministries’ official response is that demand has not yet reached a critical mass to justify the allocation of such resources.

Today, I looked into the faces of these people, and felt ashamed that I was the by-product of a government that took the sensible, economic decision to cultivate only the mainstream. For many of them, it was the first time they travelled out of Singapore. I saw many passports that were new, applied for in the last month. One of my biggest challenges today was to explain what was “foreign currency”, and why they couldn’t use Singapore money in the department store.

As my lover lay in a hospital halfway around the world, I sit in a cafe kicking back with a few beers and smoking my brains out. It helps that I am with friends. Conversation flows easily from one topic to the next. I talk, I listen, I laugh.

Once or twice, I think about him. I know the room he is in. In it, there is a TV that plays a few channels. The volume only goes up that high. I wonder if he is sleeping enough. I wonder if the nurses are making sure he has enough blankets.

But for most of the night, sitting by the ever-busy Orchard Road, I feel fine. In fact, I am better than fine. I was enjoying myself. This absence of mind is rare, but it does not strike me as odd. Normalcy in the face of terror is a basic instinct, a method of control.

Throughout this journey, there have been, and will continue to have moments of grieving, of anger, of hope. It is a journey because it is precisely that; there must be rest stops before we gather ourselves to start the climb anew.

Yesterday morning, Rusty received his first radiofrequency surgery. Using a CT-guided probe, Dr Banovic cut through Rusty’s back to reach the tumors in his right lung. The plan was to deliver a high dose of microwave energy to two tumors, killing them. If successful, he would treat the other two in a few weeks.

He only managed to do one and a half. An air leak developed while the second tumor was being zapped. The operation was stopped and Rusty stitched up. An hour out of the operating room, Rusty seemed fine. He was in high spirits that at least one of the four tumors were gone. We had a plan. At least, it seemed possible that by the end of this year, we would finally reach NED status. No Evidence of Disease. That would be the first step of our long journey towards remission.

But as it turns out, the day’s ordeal was not over. Almost 15 hours later, at midnight, Rusty reached for the emergency button. He couldn’t breathe. He clutched his chest in pain. What happened next was a blur. It seemed everything, every action was at the same time slower and faster. That was how his mother described it to me.

One chest X-ray, another scan and a liberal dose of morphine later, doctors found tiny pockets of air coating part of Rusty’s lung. “I could go in and take care of it, but it’s likely to resolve itself in a week,” said Dr Banovic. So for now, we wait until the bell rings for round two.

This morning, on the phone, Rusty’s voice has taken on a strange quality after the scare last night. It is slow, even languorous, and I cannot decide if it sounds more like a child’s, or an old man’s.

He tells me conspiratorially: “One of the doctors who came in last night was cute. He looks like me when I was younger.”

In the last six months, the largest tumor has doubled in size to 3.3cm. The rest have grown slightly: 1.2cm, 1.4cm and 2.1cm. No new tumors showed up in the scan. Next week, he starts his new treatment.

This morning Rusty drove for two hours to Georgetown for his CT scan, scheduled at 10am. It was 5am when he set out. “I didn’t want to be late,” he told me. This will be the first full body CT he has taken since December last year. In previous months, the doctors in Paris have ordered for him only chest X-rays.

The idea was to monitor the four small lesions in his right lung. As long as he reported no new symptons, there was no need for more tests. Next week, he will start a new therapy for his lung mets. Called radiofrequency ablation, the procedure will involve surgically inserting a needle into the tumor mass, whereupon it will release a high level of “radio-energy”. The tumor cooks, and is destroyed.

It all sounds very hopeful, but before we start the treatment, he must first take the scan. “We need to rule out the possibility of new tumors that may require more urgent attention,” Rusty is told.

Every scan day, we carry the same, weighty demons. We wait in fear, in hope, in humility, for that one phone call that may mark a sudden detour in our journey. It’s happened before, but it is not something you ever want to prepare for.

Writing an article on teenage depression leads me to consider my own journey with the disorder. Since I was a young boy, I had been told to hold my tears, to keep my emotions on the inside. Vulnerability was a personal affront to the family name. “Don’t embarrass me,” Dad used to say with his hand. I learnt quickly.

It is a curious thing, being asked not to feel - or at least, not to feel deeply. Of course, that wasn’t the point - I realised only much later that it was the display of emotion that irked him so. But to a nine year old, how could I have known the difference? These teens I talk to, most of them do not understand depression as a medical condition. I do not blame them. Until I experienced it myself, I too thought it was something you could just “snap” out of.

I know differently now. Only those who have personally encountered it can understand the crushing weight of darkness that depression can sometimes summon. There is nothing to snap out of. Indeed, there is nothing at all.

A new day

It’s been two days since Rusty and I parted ways at the airport. He’s now in Barcelona at a gay wedding, and in a day or two will be in Paris to visit Uncle Bernie and Aunt Marcia. The pain in his shoulder, he says, is bearable. Meanwhile, the radiation technicians at Georgetown University are readying for him to begin treatment on the 17th.

Here in Singapore, it feels good to be back in the newsroom. I’ve been away for six weeks, and it is taking a while to leap into the thick of things. Tomorrow, I start a fresh week, but there are already phone calls to make, people to interview, deadlines to meet.

A fresh week, a fresh start. We can all use more of these.