Two Lucky

Week in review 

It’s true what people say about a man dying. First, your appetite goes. Then, your body. It starts to shut down; the senses leave you. The heart stops.

I don’t remember a specific moment when I believed Rusty was going to die, though in retrospect that seems irresponsible. It was obvious to anyone who looked at him. In the last weeks, he had lost so much weight his face was carved bone. He was in a wheelchair. He couldn’t climb stairs.

But I never saw it. In my mind I kept waiting for the good news that would set us free from this disease. In my head I imagined how we would react when the doctors tell us the cancer had shrunk. We would hug, our crying heads buried in our bodies, then go on a long trip to celebrate. It would be a life suffused with new hope and expectancy. I imagine that’s what the phrase means, a new lease on life.

That never happened. Instead, with each monthly scan I saw my lover’s body slump into dejection, his spirit expiring. Hope waned as our numbers became increasingly dire.

But we kept what little hope we had close, and believed fervently in our future. After years of being terrorized with fear, all we wanted was a peaceful life together, away from the hospitals and their needles. So, we fought back. At each bad turn, we armed ourselves with research and resolve. We battled with vigilance and pride. Rusty and I were not used to losing. The core of our strength was our partnership, a mutual belief that having beaten the odds in our personal lives, we would be able to apply that principle to beating cancer. 

In fact, one might even argue the odds were in our favor. We had the intelligence to seek out the best doctors and weigh the effectiveness of different treatment options, the money to pay for them, and at the end of the day, love as our buoy in this sea of uncertainty.  

On the day he died, Rusty still wanted to live. He said to me at the hospital, “I’ll stay one more night, get better, and then we’ll go home, ok?” I nodded. “We’ll go home tomorrow,” I said.

I don’t think we ever stopped believing. In his last sleep, I think Rusty still expected to wake up. He would smile, wink his exaggerated wink at me, then ask if I would bring him some tea. We would go home. I would sit next to him while we held hands and watched TV. Soon, we would fall asleep. A new day would start.

I haven’t stopped believing. In my mind, I know he is dead. But in my heart, he is alive as he was the first day I met him. He is still my man. I still worry about him. I wonder if he’s thirsty, if anyone is bringing him his tea. In my sleep I call out for him. His toothbrush is still by the bathroom sink. His T-shirts have been cleaned, folded, and put in his closet. I feel him with me, inside me, when I am alone, or with friends.

My love is stronger with each passing day of his death. As I acquaint myself with grief, I discover new depths of our love. Now that the daily rituals of medicine are over, there is time to live in the thick of my sadness. My sadness began when he was diagnosed, became stronger as we loved each other. And now, I must learn to cherish this sadness as an expression of our love.

Week in review 

Since the surgery, Rusty’s condition has deteriorated. He is so weak, in fact, that Dr Kaufman has refused to continue with IL-2 therapy; he said the drug’s severe toxicity may actually kill him.

So today, we sought the opinion of another doctor, a colleague of Dr Kaufman’s, Dr Sherman. His prognosis, simply, is that the tumors in Rusty’s liver are growing too quickly.

“You’re carrying too much disease. Must be 10lbs in there,” he said.

We grasp at straws. “What about a liver resection?” Rusty asks. Dr Sherman shakes his head. I push on: “Abraxane? Avastin? Gleevac?”

“No, no, and definitely no.”

This cancer continues to pick at our lives like a vulture.

At home, Rusty is in constant discomfort. He eats like a bird, yet vomits bagfuls every night. Walking down a block is impossible. Whether in the day, or at night, he drifts in and out of sleep, in a cycle of painkillers. 

I wonder if there isn’t a moment that he wakes up, and for a few seconds, forgets that he is dying.

For the survivor, forgetting is a difficult conundrum. In wanting to capture every moment, what one recalls in searing detail only renders the loss more acute. Though love and pain make poor partners, each is inextricably twined with the other. Love gives pain comfort. The latter legitimizes the former.

How do we forget one without the other?

I cried hard today in the town car on the way back from the hospital. It did not last long, probably for less than a minute. The tears stopped as suddenly as they had come. It happened soon after we got into the car, when Rusty took my hand and said to me: “I am so happy to be with you.”

Week in review 

A friend recently pushed me to rediscover philosophy for answers. “Sometimes, it helps to look to others who have done the thinking for you,” he said.

And so I have, in the past weeks, read like a hurricane, with anticipation and keen reflection. I’ve finished three books: Discourse on Thinking, by Martin Heidegger; Nicomachean Ethics, by Aristotle; and Functions of Painting, by Frank Leger.

It’s a new perspective for me, to turn to philosophy when reality becomes too heavy to walk out of. Friends and family typically advise counselling or professional psychiatry, neither of which I’ve found to be completely fulfilling, or convincing.

I suppose I’d like to think there is an average intelligence such counselling is most suited for, but in truth intellect has very little to do with grief and its emotional aftermath. Our intelligent and emotional selves are always separate, and in competition, and that reality is perhaps what cuts most deeply - that I might fail to save Rusty, and fail to recover my sense of independent self when he dies, in spite of all my efforts, in spite of my mental ability.

Grief is a forcible, competent equalizer.

But while I am in the thick of living, Heidegger wants me to abandon my inclination towards calculative thinking, and aspire towards thought more meditatively. My frustrations, he says, comes from desire, the prospect of something, the waiting for. Yet it is not contentment he teaches. Instead, it is to learn patient desire, to live life with an openness to its mysteries, to remember that life goes on, independent of desire.

I haven’t written much because there hasn’t been much in terms of Rusty’s medical progress.

He is still weak from the surgery. He hasn’t walked outside in days. His appetite fluctuates. The vomitting seems to have stop, but the dry heaving isn’t better. We are waiting to hear back from Dr Kaufman when to go in for the next round of IL-2. In the meantime, we subsist by counting the hours.

Every day we wake in the night and sleep again when the sun is high. We eat sometimes, sometimes not at all. The minutes leak into hours, and the hours drift in and out of usefulness. We use time to tell when he’s ready for the next pill, when our favorite TV shows come on.

Otherwise, time is irrelevant as the sky.

Week in review 

In New York, Rusty and I were having a rough time together.

In the last couple of weeks, we barely spoke to each other, and when we did, it was rarely pleasant. Much of it had to do with the stress and pain that had built up in recent months, particularly during his last IL-2 therapy.

When it was over, I felt tired, depleted, and loveless. He felt cheated, sick, and abandoned. We were both angry with ourselves, and with each other.

So while a vacation away from New York seemed like the perfect solution to two stretched souls, it also seemed to me the worst thing we could do for our relationship.

I needed to be away from him, and all that he had come to represent in recent weeks: medical appointments, pills, IV tubes… to be on my own was what made sense to me. I sought decompression, craved solitude. In part, I knew I had to recover my identity other than a cancer patient´s care-giver. Going on a trip together, where I would still have to dole out his pills, watch for his safety, and keep emergency numbers handy; in other words, continue to be so close to the cancer, didn´t seem like it would help.

We have been away for almost a week now. Nothing, and everything, has changed. Nothing, because I know that deep down, I am still angry and terrified. Everything, because I have recovered my strength; I no longer feel tired. It is as if the world had suddenly righted itself, found its gravity again.

The turn was immediate, unexpected, and perfect in its ordinariness.

We were sitting in the lounge, on separate day beds, each with our own books. He was reading Sarah Dunant´s The Birth of Venus, and I On Writing Well by William Zinsser. After an hour, Rusty asked me to come sit by him. I agreed. It was not long after that we were both lying in a comfortable tangle of limbs - his legs stretched over mine, my arms wrapped around his thighs.

Resting so, we continued to read, my head slack on his stomach as his fingers caressed the side of my head. Once or twice, he catches me biting my nails, and smacks me disapprovingly, but gently. We continue to read like this for two uninterrupted, beatific hours.

Week in review

I haven’t slept very much these past days, though sleep has come in mere seconds. Standing up. Sitting down. Waiting for a drink to fill from the tap.

Most of the time, it is for minutes, an hour, maybe two. It’s been six days I’ve spent at the hospital, but it feels more like one very, very long day. Without sleep, the days and nights have lost their compass. There are too many hours, not enough minutes to go round. I stand. I sit on the toilet with a giddy cigarette. When I walk, my limbs are warm with the glimmer of consciousness.

This dizzying half-wakefulness.

In the last 24 hours, Rusty’s condition has deteriorated. Although his blood work came back satisfactory, the disorientation from the drug has intensified, cheating him of present reality.

Boxed in a hospital room at New York-Presbyterian, he thinks we are in North Carolina, at an elaborate, colorful circus show. There are land-angry Indians knocking at the door. He is begging me for another dose of IL-2. “I don’t want to die,” he pleads with the doctor. Minutes later, he is tugging at his IV tubes, struggling to stand, asking to go home.

My hero is stuck in a dream of demons, and while I cannot reach his mind, I do my best to nourish his body. There is always something to see to. Some event on the brink of emergency. Water he wants but cannot reach. The walk to the bathroom when his legs cannot hold his weight. The vomit, the stained sheets, uncleaned hands.

He is taking longer than usual to re-orientate because of the tumors in his liver. “His liver is in bad shape,” said Dr Kaufman. “It will take some time to metabolize all the bags we gave him. Let him sleep. We’ll keep him here for another night if we have to.”

While another night makes little difference to me, I am aching to go home.

I want no more tricks and fantasies, but the solid hearth of my lover’s chest, breathing into mine. I want sleep in its circadian comfort, days and nights that stay in their respective skies. Maybe that will be tomorrow.

Week in review

I lost my temper today while doing the dishes.

I had just made some fresh butternut squash soup for Rusty, and the counter-top was a mess. We ran out of paper towels. The floor was sticky with trash juice from too many days of collected household debris. I threw the remaining dishes into the sink, swung shut the kitchen cabinets with a dramatic bang. The utensils inside shuddered metallically. When Rusty asks if I am okay, I mutter yes and leave the apartment for a cigarette outside.

It’s been a week since Rusty’s third infusion of the anti-CTLA4 drug, Medarex. His fevers are now almost all-day long. On a good day, he has about three or four hours when he is able to walk outside for fresh air. The rest of the time he’s laid up on the couch, too tired to do anything else. Since the clinical trial started last month, he’s already lost 20lbs. Dr Wolchok wants Rusty to come in tomorrow for a blood transfusion, and to run some tests. We may have to stay overnight for a few days.

I am worried about a million different little things. It feels impossible to sort them out. I am not used to letting soiled cutlery upset me like this, but I understand my anger is a manifestation of these undercurrent anxieties. It pains me to see Rusty so weak and withdrawn. What use am I to him if I can’t even keep the kitchen clean?

Week in review

The apartment is slowly coming together. The wall is a lovely rich red, and each newly acquired piece of furniture is getting comfortable.

Yesterday the bowl of apples by the window-sill introduced himself to the new vintage armchair. The couch is less friendly. It appears to be of the strong, silent variety.

Rusty’s off to work this week and I am still trying to settle in. Above my head hovers a constellation of errand flies, telling me to get off my ass and start rooting myself in New York. There is a small drizzle outside. It’s almost 2pm, will I have time to make it to the bank?

By AcidWorkz

Week in review

Word is going around in the office about my imminent departure. What did I expect? This is a newsroom, after all. Every journalist worth his salt loves a delicious tale, and one such as this - of love, death, and decadent designer splurges - is bound to make its rounds. Here’s an update:

1. My leave of absence has been approved by management. I fly out from Singapore to New York on Friday, Dec 8. By that time Rusty would have just moved into our new apartment, and I will be in time to assist putting on the final decorating touches.

2. Also, Rusty received his first dose of Medarex last week. It was a 90-minute infusion. He walked out of the hospital, pain-free, but called later at 3am complaining of a nagging, physical discomfort. “I don’t know how to explain it,” he said, “I just want to crawl out of my skin.” The side effect lasted a few hours, and went away after our good friend MJ kicked in.

3. Plans have been made to spend this year’s Christmas in Paris. Translation: Lots of fine wine, fresh foie gras and sparkling conversation. We will stay with our favorite Uncle Bernie and Aunt Marcia. Then, back to New York on Dec 27 for a second infusion.

4. While on the topic of addictions, I’ve decided to quit smoking. I’ve decided this a fair number of times now. But this time, I’m putting it out there so anyone who sees me with a cigarette is entitled to kick me in the nuts. Or slap me on the ass, whichever gives you more pleasure.

5. And as far as nuts go, I am becoming such a girl. I don’t mean this in a secret-sex-change-operation-in-Thailand kind of way. It’s just that in recent days, I have missed Rusty so much all I want to do is snuggle in his chest and hear ourselves breathe, in synchrony.

Week in review 

In a few weeks, I will be back in Singapore to put an exit plan together. Even with all the drama that’s going on with the melanoma, we are making the best of our time together in New York. Here’s an update:

1. This week, Rusty and I got my editor, who was visiting, acquainted with some sweet wheat and whiskey, then took her to a gay club, Duvet, by walking 30 blocks from midtown. Which proves the old adages true: That there are just no cabs when you need one, and that Times Square does look bigger and brighter when you’re kickin’ it with Mary-Jane.

2. We also watched off-Broadway musical Altar Boyz with Uncle Bernie, who later took a photo with the cast. Uncle Bernie is celebrating his 70th birthday in New York. It is so good to see him again.

3. Since our decision to re-locate back to New York, Rusty and I have looked at 12,374 apartments in the East Village and lower Manhattan. The hunt continues.

4. We also had some beautiful lunches at the expense of Uncle Ernie, for his 70th birthday. We went to Le Bernardin and db Bistro Moderne. Though both are highly regarded restaurants in New York, I thought both fell below expectations. db Bistro’s signature dish - the sirloin burger stuffed with braised spare ribs and foie gras - was disappointing. I should have ordered the Coq Au Vin instead. Next time I will defer to Uncle Bernie.

5. The last two days we wandered around the city shopping for furniture for our new home in New York. Rusty wants to get a nice leather couch, a 42-inch plasma TV and a mosaic-tiled coffee table. I am in charge of the bed and lights. It is a great, new feeling to be putting a home together with Rusty to call our own.