Two Lucky

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.

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.

We checked into the Urgent Care department of Memorial Sloan-Kettering hospital an hour ago. Right now, Rusty is going through his second bag of fluid. He is visibly better - color has returned to his cheeks. For the rest of the night, he will get one more bag of fluid and two bags of blood. By that time, it will be past 1am. Then, we go home and snuggle. I hope Sunday will be good to us.

Hi Dr Wolchok,

I’m sorry to be bothering you so late on a Friday night.

Since 9am, Rusty has had a debilitating, sharp pain in his right abdomen, below his ribcage, extending into his groin area. He can’t even sit up. He has been in bed the whole day.

This type of pain isn’t new. We discussed briefly about the liver getting “angry” in our last visit. But does this seem a little excessive?

When he is lying down, his liver is visibly palpable on his right side. It feels soft, not hard. Other than this pain, he is completely lucid and coherent.

In the last few hours, I have been keeping him hydrated with Pedialyte. He has taken one liter so far and we will continue with two more tonight.

I should point out that yesterday Rusty was in top form all day. We went out for lunch, shopped around in the afternoon and even made it to a show at night.

We decided to write to see if this has been observed in other patients, and if we should seek urgent medical attention.

Please contact us if you can.

Thank you.

Medarex, or MDX-010

Rusty had his fourth and final infusion last Thursday. The side effects of the drug are cumulative. In the last few days, he is more tired, more dehydrated and despite my care, still losing weight.

The pain in his right abdominal area also seems to be getting worse. Dr Wolchok said this is due to his liver being inflamed. “The liver gets angry. It’s not an uncommon reaction among other trial patients.

“It could either indicate tumor progression, or the tumors may be shrinking.” I sit up, but he is reluctant to give an opinion as to which is more likely.

For now, we wait to take scans. That will shed some light on what’s going on. Of all of Rusty’s scans, these next ones are possibly the most significant. I have learned not to ask for much, just a sign that we can still beat this.

What’s next?

Rusty and I cried together last night. He’s having some pain in his right abdominal area, and we think it may be due to the melanoma. Our worries are not unfounded. About a month ago, the radiology report observed new, multiple tumors in his liver. Measuring 1 to 2cm each, they were small, but growing.

This is an aspect of our lives we cannot ignore: When living with active disease, every bodily pain, ache and discomfort is judged with heightened sensitivity. At this late stage of our treatment protocol, it is not easy to keep at bay the questions we yet have answers for: Is the drug working? Are the tumors getting bigger?

It has been a while since we let ourselves be emotional about the road ahead. Huddled in the dark, against the lambent flames from the fire-place, I held his hand until he grew still, and fell asleep.

Fever and fatigue

My days are punctuated by the beepings of the thermometer.

To keep the fevers at bay, we rotate between Percocet, Motrin and Tylenol at timed intervals. I am also making more stops at the laundromat. Every night, Rusty goes through at least four T-shirts because of his night sweats. On the sleeper couch, towels are set on his side to prevent drenching the microfibre. We haven’t slept in the bedroom for weeks. This Thursday, we go in for our final infusion. Then, we wait for scans.