Two Lucky

Photo by Yen Feng

Rusty’s second post 

Hello all, it’s been ages since I have written anything on my Yenny’s blog, so here goes.

Lately, I’ve been feeling pretty weak and tired, but honestly, I can’t complain. Mornings are the best - Yen makes me breakfast while I watch black trannies tear at each others’ wigs on Jerry Springer (My staple of trashy US morning TV, though I do flip to the BBC to come up for oxygen on occasion). Coffee and rice krispies cereal crisping in cold soya bean milk from Chinatown - you just can’t beat it.

For the last couple of weeks, I’ve been going to the hospital three times a week to get blood, and on these mornings, it’s a long 45-minute trek from our apartment in the East Village to New York-Presbyterian Hospital on the UWS.

By the time I make it back home, it’s already past 4pm. I am normally so exhausted from the chemo, or from the blood transfusions, that just making it up the one short flight of stairs to the apartment takes an eternity.

By the time I make it to the door, I feel like I’ve been beaten half-dead by a very heavy stick.

While I’ve been gone, Yen’s been busy transforming the apartment into a five-star resort.

When I step into the room, I smell faint jasmine. Incense is burning on the window-sill. I hear calm, musical voices in the background. There are fresh rainbow-colored tulips on the coffee table. A plate of cool celery and keen carrots.

What? A tall, icy drink of pina colada? (Virgin, my Yenny smiles.)

What Yen does to this place sets my soul at ease. I am now ready to take a nice, long afternoon nap. This apartment, this home, it’s my castle of comfort, my paradise.

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.”

“Water,” Rusty mouths to me, his eyes fading in and out of focus. I turn to retrieve my water bottle, but the nurse stops me. “Not yet. Let him wait a while longer. We don’t want him puking right out of surgery.”

The two-hour operation was performed this morning by Dr Susman of New York-Presbyterian Hospital, a surgical radiologist who was specially brought in by Dr Kaufman to treat Rusty’s liver metastases.

Using a needle surgically inserted through Rusty’s back, Dr Susman was able to target the largest tumor in Rusty’s liver by delivering chemotherapy agents directly into the cancer. At the same time, he disconnected multiple arteries that were feeding the tumors and causing them to grow.

The procedure is a two-prong attack; even if it doesn’t destroy the cancer completely, it would weaken it substantially, making it more vulnerable to subsequent IL-2 therapy.

This is an uncommon treatment in the relatively new field of interventional radiology, since it uses a mix of radio-frequency ablation, or RFA, and liver embolism, the severing of arteries that feed cancerous tumors. Typically, RFA and embolism procedures are performed separately.

The surgery went smoothly, according to Dr Susman, who was happy that he was able to inject all of the chemo into the tumor, without complication. “Most patients don’t get the full dose,” he said.

In a few minutes, Rusty falls asleep in the recovery room. In a few hours, he will be transferred to the general floor, where he will stay overnight to be observed for any post-surgical distress: infection, pain, bleeding.

This is Rusty’s 10th surgery in the last two years.

I feel my eyes well up as I stand next to his bed, unable to salve even his most basic need - thirst. When he is asleep, I walk outside for a cigarette, and for a few short minutes, let my wet eyes fade in and out of focus too.

Hello all of Yen’s blog readers. This is Rusty. I figured I would write at least one entry on here - we’ll see if he lets me write any future ones.

To be honest, although I have of course known about Yen’s blog for the past few years, I have not visited the site, since I was worried that some of the material on here might make me sad.

Yen is such a gifted poet, and I know that having read many of his poems, most of them have me a bit downbeat. Even though they are so well written, so many of them are about death, and graves, and well, you get the picture.

I am writing from the Florida Keys. Yen and I are here at an extremely gay Bed & Breakfast, and my father is in visiting for a few days from Mississippi. It’s been a while since I last saw him. With his hairy chest and beer belly, I think he actually fits in better here than Yen and I do, since this is really more of a 40+ bear crowd.

I’ve been feeling so-so since we got here. I was sick all day yesterday and as a result, just sort of sat there during dinner, only able to eat half the bowl of potato soup I ordered.

This once again is contributing to Yen becoming more and more frustrated about everything.

Hell, if I can’t even enjoy a decent meal with him, then it’s like he’s taking care of an invalid, isn’t it? I am just hoping this surgery that I have coming up in about 10 days will take out a lot of tumor and make me feel better.

Everyone keep your fingers crossed!

Thanks to everyone who reads Yen’s blog. He’s such an amazing person that I wish everyone of you could meet him in person. I’m so proud to have him as my boyfriend.

After more than a week of rest at home, Rusty has recovered almost completely from the IL-2 therapy.

He is his usual self, loving and already focused on getting stronger for the next round. Most of his activities are limited to a few minutes of walking outside every day. For the most part, we spend our hours taking naps, reading, and watching TV on the couch.

I’ve hesitated to write because there is really not much to tell. Every day is an exercise in patient living. I attend to his needs: blanket, pillow, water, a peck on the cheek, a hug.

Despite our best efforts, he’s still losing too much weight, hovering at a slender 140lbs for his 6′1in-tall frame. Our diet has whittled down to occasional meals, shared Chinese take-out, ramen, sushi sometimes. He has developed a liking for fresh watermelon, which I try to procure diligently.

I miss the days of our courtship, when we walked without consequence, without time. Even in the early months of Rusty’s diagnosis, our hope was still athletic, vigorous. Times are different now.

When hope to rekindle memories starts to wane, when your lover is changing, deteriorating, it becomes a challenge to keep loving. Every day is a lesson in patient loving. Every day you relearn how to love again.

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.

There are two numbers that doctors watch before approving each additional dose of IL-2: The patient’s blood pressure and urine output.

One critical side effect of IL-2 is that it can cause blood pressure to fall quickly and - if it is too low - lead to decreased blood supply to the brain, causing dizziness, weakness and fainting.

Another is kidney failure, which is why the hospital checks if the patient is peeing. Part of the urinary system, the kidneys filter waste and excrete them, along with water, as urine. When the kidneys stop working, there’s no urine.

By 10am - almost 14 hours after his sixth dose last night - Rusty’s BP had fallen to 70 mmHg, and there was no urine to collect. His liver and kidneys were beginning to falter. He was unable to sit up. He had also become very confused. “Why aren’t we home? I don’t know what’s going on,” he said to me, fighting back tears.

The doctors decided it was time to stop.

Even though we were disappointed, there were encouraging words from the doctors and nurses who dropped in to check on Rusty.

In the last three years, only two people have completed the full 15 doses. According to our nurse, the chemotherapy floor sees about five or six patients for IL-2 every week. That’s two out of potentially 780 patients, which works out to be 0.25 per cent of patients who withstood the entire treatment course.

Most healthy, adult patients average seven or eight doses.

Also, from Dr Taback, one of our treating physicians: “I think you’re done very well. You’ve exceeded the whole team’s expectations. Due to your condition, we were very hesitant about treating you in the first place. It was a risky call. We didn’t think you’d be able to tolerate more than one or two doses, three max.

“Now it’s time for you to get better.”

Unlike standard chemotherapy, IL-2 patients tend to bounce back faster. The side effects from the drug typically wear off in 24 hours. The hospital staff will continue to monitor Rusty during this time. If his numbers are good, we go home tomorrow.

Most patients receiving IL-2 start to do badly after the 5th dose.

By “do badly”, we understand that many patients’ blood pressure begins to fall. Also, liquid can start to accumulate in the body. There is a risk of capillary leaks - fluid can route into the lungs, and the patient is wheeled to the ER.

By the 5th dose this morning, Rusty’s blood pressure had fallen below 80 mmHg, and was at risk of having the next dose stopped, or at least, postponed.

Typical values for a resting, healthy adult human are approximately 120 mmHg systolic and 80 mmHg diastolic (written as 120/80 mmHg, and spoken as “one twenty over eighty”). To continue receiving treatment, we needed to kick his BP up to at least 95 mmHg and above.

The most common and immediate way to do this is to hydrate the patient. So began hours of persuading him to drink, even though he was disorientated, feeling poorly and would rather be sleeping.

He had said to me earlier: “Be tough on me. Don’t let me give up. Do whatever you need to do to ensure I take the full 15 doses.”

So I was, and did. It is too early in the game to give up. Even though in the last two hours, he’s puked up nothing but water four times, we made the cut. His latest BP reading clocked in at 98 mmHg.

The sixth dose is scheduled for 8pm.

Not 10 minutes into Rusty’s second dose of IL-2, he had already puked up half his breakfast.

So far, the side effects are minimal - slight nausea, disorientation and dehydration. But the doctors are concerned. Rather than give him a bag every eight hours, they have decided to dose him every 12 instead.

“It’s better to try and give his body more time to process the chemo - so we can still give it to him at full-strength. I don’t want to have to dilute the drug, or worse, have him stop prematurely because his body can’t take it.”

We will be spending the next four or five days at the hospital. His next bag will be given at 9pm tonight.

I want to thank everyone - WD, Lilian, Katrina, Helen, Zyn, Cesar - everyone who in the last few days and weeks have spent time thinking of us and giving us your prayers. Please keep it up and help us fight this beast.