Two Lucky

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.

With the exception of a small skin lesion on his scalp, the brain MRI came back clean today.

“It’s good, it’s good, it’s good,” Rusty and I muttered, our voices muffled under our hugs, between sobs. We cry freely and happily.

We had been waiting since this morning for the scan results.

If the melanoma had spread to the brain, we would be excluded from this treatment course, one of - if not the last - remaining options we have to fight this beast.

For this treatment, Rusty will receive one bag of Interleukine-2, infused via a picc line inserted surgically into his chest cavity, over 15 minutes, every eight hours. The complete schedule is 15 bags over the course of five days, but very few people have endured the full 15 bags due to the drug’s extreme toxicity.

Most stop after seven or eight, we are told.

“15 bags is the gold, my love. This is our marathon right here. I will be strong for the both of us,” I tell Rusty.

“We can do it. This is really it, baby,” he says.

We start the IL-2 tonight.

So many times throughout this ordeal I’ve asked, in various ways and to various gods: Why me? Why us? Even knowing there’s no good or real answer, I have not stopped asking.

These next few hours, weeks or months. What lies ahead? If Rusty’s scans come back tomorrow with damning results, for the first time the cancer will have outpaced us. We will not know what to do next. We will be without a plan. There may not be anything we can do.

And we have tried so hard. I have watched my lover suffer through almost two full years of back-to-back treatment.

He has had eight or nine surgeries, too many to count. Radiation burns cover his left axilla. He takes close to 40 pills every day. He has had his body poked and prodded by an endless stream of doctors and nurses. So much blood has been drawn from him into test tubes for testing. So many needles.

From hospital to hospital across the nation, I have watched this cancer cut him down from a healthy, virile marathon runner to a broken, weary man.

What do you want from us? We have prayed and prayed. I have offered arm and years of my life. I have done the very best I can. I have treated people well, been there for my family and friends. Where is my karmic restitution?

“There is still so much I want to do. We have to get married, have kids - I want us to have our own business, buy a place to live in, settle down. Keep me alive, baby. I can’t go yet.”

Our hands touch. My tears come quickly and easily. I smoke until I throw up. I cannot sleep. I want to reach out but what is there to say to another? The person I need the most faces his own terrible demons.

My grieving began two years ago. But two years is a short time.

Time does not heal wounds. Love does not dissipate. If Rusty dies, I would have learned only one thing, that watching your loved one suffer is a human being’s most profound pain. There is no respite in that lesson.

“It’s going to be risky,” said Dr Kaufman.

Interleukine-2, or IL-2, is our next step in the fight, and the expert in delivering this drug to melanoma patients is Dr Kaufman, who works at the uptown New York-Presbyterian Hospital.

Patients receiving this treatment will be hospitalized for five days and infused with one bag of IL-2 every 8 hours. The schedule for each round is 15 bags, but most patients receive only up to seven or eight. This drug is highly toxic. A few people have died resulting from drug-related complications or infections.

During our 10-minute consultation with him, Rusty is visibly moved but determined. “Please?” We chuckle uncomfortably.

Before we can move forward, Rusty will need a brain scan to determine if the cancer has spread to the brain. If so, that will exclude us from this treatment. The scan is scheduled for tomorrow at 8am.

Rusty likes to take his nap by the fireplace. This afternoon, he asked me to read by his side. I started with the first chapter of a new book I bought recently - Mortimer of the Maghreb, by Henry Shukman. I began energetically, then slowing down and lowering my voice as his body relaxed into the couch.

When he awoke 30 minutes later, he found me crying next to him, my hands on his arms. “Go ahead and cry, my love,” he whispered drowsily, “Go ahead and cry, it’s okay,” and stroked my hair as my book lay open on the floor.

How do you look across the table, and not try to record every detail in the face of your loved one?

It’s close to midnight, and we are having dinner at our favorite Japanese restaurant down the street, Kanoyama.

As we pour over the familiar menu, our dinner comes together: A fresh sashimi selection of amaebi (sweet shrimp), lobster, blue-fin toro (fatty tuna) and uni (sea urchin).

As we eat, it’s hard not to be thankful for everything we have. But at the same time, there is an anger that finds no answer. As we eat, we weep in spite of ourselves.

This afternoon, we saw our doctor at Memorial Sloan-Kettering to receive our latest scan results. The cancer has spread. It is now in Rusty’s lungs, liver and kidney. The clinical trial has failed us.

As a matter of course, we will need to seek new treatment. On Tuesday, we consult with Dr Kaufman from the Columbia-Presbyterian Medical Center.