Two Lucky

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.

It’s a fresh day here at Big Ruby’s. The sun is high, the breeze is cool, and overhead Ella is singing the blues. It feels great to be sitting outside with my bare feet, shorts and a tall glass of OJ. Even with so little, I feel I have everything I need.

After a rough day yesterday, Rusty is feeling better this morning.

He’d had a bowl of bran cereal for breakfast, and some fruit. “I’m so glad I’m feeling somewhat normal today,” he said, eyes open with gratitude. “I feel like I’ve been let out of my jail cell for a while.” The day is just beginning. We’re off to a good start.

To prepare ourselves for the next round of therapy, and to escape the winter, Rusty and I decided to go on a short, one-week holiday.

We arrived in Key West, Florida, this afternoon. We will stay for three days, and then fly to Mexico for another four days of rest at a resort 20 miles south of Cancun.

As I step off the tiny plane into the sun, I feel immediately more relaxed. The locks fly open, my heart fills with the openness of the sky.

It is not long before we check into Big Ruby’s Guesthouse and find ourselves ensconced in the breezy comfort of the Conch Republic.

On the city’s bustling Duval Street, youth is spent like easy currency under the balmy sun. Shacks spill laughs, live music, breasts, and tout day-long Happy Hour, conch fritters, fish tacos and other colorful Caribbean flair, all in the same breathless stupor.

When night breezes in, one inroad off Duval has been cordoned off for an impromptu Oscar Night party. As golden statues get handed out on TV, college students trade iconic, rainbow-colored Mardi Gras beads on the streets.

Two doors down, a homeless Albert Einstein lookalike serenades passers-by with a broken, inelegant violin.

Here at Key West, my trained New York sense of self-important busyness is exposed discombobulated, sunless and naked. Slow down, stop, and have a mojito (”Or two - we have 24 different flavors,” our waitresses chime together).

In the end, we finally take our place on the island when we sit down on the steps of a Kohr Bros frozen custard shoppe. Holding a cone of old-fashioned vanilla custard between our hands, we take turns and eat in silence, like two well-schooled children.

In that moment, I briefly forgot my anger and smiled at Rusty. In that moment, sweetened by the rarity of street dessert, the same light that first revealed his face to me, shone in my heart again.

Inside my skin, there is this space.
It twists and turns, it bleeds and aches.

Inside my heart, there’s an empty room.

It’s waiting for lightning, it’s waiting for you.
And I am wanting; I am needing you here inside the absence of fear.

Muscle and sinew, velvet and stone;
this vessel is haunted, it creaks and moans.

My bones call to you in their separate skin;
I make myself translucent to let you in.

There is this hunger, this restlessness inside of me.
It knows that you’re no stranger; you’re my gravity.

Soundtrack

Absence Of Fear, by Jewel

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.

When I rouse from my sleep next to Rusty’s hospital bed this morning, he is already awake.

“Happy Valentine’s Day, my love,” I lean across and kiss him on the cheek. “What day is it?” he asks. “Wednesday.” I look at the clock on the wall. 6am. I’ve slept for five hours. I immediately feel grateful.

For the next 10 minutes, we chat a little in the dark.

He is full of questions, gaining strength in lucid conversation. His eyes come alert. He’s finally turning the corner, I think to myself. In the window, shadows peel away. A band of mauve is on the horizon. It is almost daylight.

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.