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.
Where we hang out
In the last days, we’ve invited more furniture to join us at home. There is Juan, the Mexican yucca cane plant we picked up at Home Depot. The two handsewn tibetan pillow twins from down the street, and From Red, a multi-media print (my anniversary gift to Rusty) we’ve hung above the couch who, by the way, is really starting to loosen up.
Our latest - and most fortuitous - addition to the family is the deep walnut coffee table you see set in the middle of the room. He was abandoned by the road, in front of a church across the street from our block. The poor dear even suffered the ignominy of having a plastic-chrome work desk piled on top of it. A stray dog witnessed this injustice as it pee-ed on a nearby fire hydrant.
I was near the end of a run when I noticed him. Immediately I called Rusty. “I think I may have finally found our coffee table,” I whispered excitedly. In a matter of minutes, he was rescued from the cold and sitting in our living room, wiped down, warmed up and gleaming with gratitude. So were we.
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.
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?
Good things come in threes
You know you’re eating at an authentic Italian restaurant when the Mafia is slurping down ravioli at the next table.
Tonight, Rusty and I had dinner at Piccolo Angolo, one of our favorite restaurants in the city. Located on the corner of Jane and Hudson Street, this West Village eatery is notorious for being difficult to get in. Restaurant owner Renato Migliorini runs a tight ship. It’s closed on Mondays and doesn’t do delivery. Tip? Go early.
Is it worth it? Three-time Emmy award winning actor James Gandolfini seems to think so. Better known as Tony Soprano on the HBO hit series The Sopranos, Mr G walks into the tiny restaurant just as Rusty and I start tearing away at our antipasti, a delicious medley of Italian meats and cheeses dotted with thinly sliced roasted peppers and sun-dried tomatoes.
The first thing you notice about the New Jersey-born Gandolfini is his stature.
Unlike most Hollywood A-listers, Mr G is a big man. His size may be intimidating, but the smile he puts on for his son, seven-year-old Michael Gandolfini, is disarming. At one point, the ruddy-cheeked younger Gandolfini even sits on his father’s lap as the two discuss sports and his performance in school. They later share a cozy dinner of penne and ravioli, a picture perfectly complementing the restaurant’s trademark familial atmosphere.
When our entrees arrive, Rusty and I tuck in and leave the Gandolfinis alone. When set before you plates of steaming jumbo shrimp in tomato sauce and lobster cannelloni, it’s easy to ignore the Mafia.
Soundtrack
Big Spender, by Shirley Bassey