Two Lucky

Anniversary special

Dear Jesse, it’s almost 11pm now and I can’t get to bed. My mind is full of you and it is like a fever. 15 months ago we met today at cafe French Roast in New York. Every month this time I think back to the day we met and consider how far we’ve come, both as individuals, and as a couple.

15 months is not a long time, but it feel as if we’ve been together much longer. I have come to think of us as partners. How can we not be, after all we’ve been through? I know you feel the same way. This is our fight: For our future, we must battle every day for a life together.

In the last few months we have received setback after setback. This month is a little different. We now know that the lung mets are responding to the new drug, Nexavar. If you are able to keep to this protocol, there is a high chance you will respond even better with more chemotherapy.

I know the pain is difficult to bear, but remember that this is not for the long term. We deal with the lung mets, we get them out and fight for NED. Whatever we need to do to get ourselves there, we do it. I know it is not easy for you to go through this. It has been a year of never-ending treatment. Chances are, there will be more to come. It fills me with sadness, but I am also proud that you are fighting this hard for us. You are my hero, and every day I wish I could take on some of your burden.

Let our love guide you through these times, Jesse. Draw from me the strength you need to press on. Look into the future and know that there exists for us a beautiful life together. Take my hand and walk with me. I love you too.

Bring on the Taxotere, by Phil and Pam

A quiet evening

It’s not easy getting chemotherapy in a country where you barely speak the language. But this is the best decision for now. If Jesse quits his job, he will lose his insurance. If I quit mine, I will be in debt for nearly half a million dollars.

There is a lot of truth in what people say about money. It is freedom.

From 8am till 4pm, I stay with Jesse in the ambulatory outpatient unit of the hospital in Paris. It is like the old bio-chemo times at the hospital of UPenn, but much easier. No puking, no chills, no fever. The nurses warn us that that may kick in later but so far, so good. Jesse is unimpressed, my dear boy.

Dinner is light. We eat at home, a simple spread of multi-grain bread with grapes, cheese and prosciutto. No wine, but sparkling water with fresh lemon. Entertainment? Our favorite comedy TV show, Saturday Night Live. “I hope Debby Downer comes on tonight,” Jesse says.

It is so comforting to be sated simply, to know that it takes only this much to feel loved, to feel fulfilled. Why did it have to take such particular hardship for us to find our way?

What a day. I landed in Paris a little after 6am, and after some walking, finally found the bus that would take me to Jesse’s apartment. He opens the door for me, and without missing a beat, I am in bed with him.

It is still early, around 8am by the time I get to his place. Looking at his barely woken face, lying next to him, I feel like I have been watching him the whole night.

The morning goes by quickly. It’s 11am and we’re at the hospital. Without further tests we don’t know what’s wrong with his shoulder. Dr Kim orders a PET scan and we visit another oncologist to schedule chemotherapy.

Tomorrow, 8:30am. We start on chemo buddies Taxol and Carboplatin. Dr Kim warns that the hair will go and increased muscle pain will require regular painkillers. Jesse is unimpressed, my dear boy.

The big issue now is his insurance. Over lunch, Jesse decides that if he can keep his insurance and disability, he may move down to Singapore. We talk with his company insurance department. They say it is unclear if he will get to keep his benefits if he goes on extended sick leave.

Apart from all the chemo talk, it is just like old times.

We sit on the couch, drink Orangina and watch silly movies. Mrs Doubtfire just ended and Dodgeball is coming on. As usual, Jesse tries to educate me on the finer points on American culture during the movie.

The phone rings, I stand up to get another drink. We are almost out of soy milk for breakfast tomorrow. It’s Uncle Ernie on the phone. I turn down the TV. Jesse puts his feet up on the coffee table (”Someone needs to take a bathy!”).

I am flying off to Paris tonight. This will be the fifth time I’m going over to see Jesse. This morning he is on a flight back to Paris from a business meeting in Thailand.

All this flying around!

I wonder what it would feel like for us finally to have a place of our own, and to settle down in one city. We would get up in the morning, have breakfast, read the papers, go to work, and finally, at the end of the day, come home to each other. How peaceful would that be!

I wrote sometime ago that the human heart can only hold so much drama. There comes a point when you’re just too tired, your heart stretched too far to carry all that you feel. It’s a point that you leave, and come back to, back and forth, every once in a while. That is how it has been with this disease. You oscillate between moments of intense depression and quiet hope. You hold on to whatever you have. You ask for a bone.

We don’t know very much yet. All we have is the preliminary report, but it looks like a mixed bag. The good news is: It looks like the four nodules in his right lung have stabilized in the last 10 weeks. They range from 6 to 21 mm.

The bad news is: The radiologists suspect melanoma infiltration of the muscles on his left shoulder and back. Jesse’s been in a lot of pain in that area, so we don’t know what to think, yet. The only way to confirm this is to have an open biopsy. That means we cut him open and look with a microscope.

There were also nodular clusters in his left lung, which came back inconclusive. No evidence for spread in liver, kidneys and abdomen.

I had prepared myself for worse results, so this is relatively mild to bear. It’s still a lot of guesswork at this point, so the doctors will have to take a close look at the actual scan films to see if they can learn anything new.

Jesse thinks it’s time to leave France and return to the US for treatment. There’s another new drug there he can take, and I think that helps to keep hope afloat. I think the move will be good for him and his mother. The past few months have been hard on Margie too. Being in the US, she sees him even less often than I do.

Jesse, don’t be sad. We’ll be okay. We deal with it like we’ve done always. We have a plan, and we do our utmost best to stick to it. I love you.

In spite of overwhelming fatigue, I’ve triumphantly navigated the airspace of Internet travel and purchased a round-trip ticket to Seoul to see Rusty this weekend. It will have been almost a month since I last saw him. I remember how we separated at Singapore’s Changi airport in January earlier this year.

By far, it was one of the most difficult. Because my parents were also at the airport, I couldn’t even take his hand. We parted. I cried all the way home in the car.

Jesse called me crying on his way home. He had been out for dinner with Vance and Fred and the talk of their upcoming wedding (Barcelona!) made him sad about us.

“I sat there laughing as they joked about how the preparations have been a nightmare, but all I could think about was how you weren’t sitting right here next to me.”

I think about that all the time, Jesse. But for some reason I didn’t say that - couldn’t say it - and instead kept quiet on the phone until he calmed down. These past few weeks have been too intense for me. There’s too much drama, too many feelings that continue unrequited because of this distance between us. The uncertainty of what the next week - even the next day - will bring makes it difficult to make sense of why we have to spend every day apart in different cities.

If only somehow we knew it would turn out all OK, this distance would be that much easier to bear. “Why don’t you give me a call when you get home? Or if you’re tired, I’ll give you a call in the morning.” And with that, I let my lover go.

Jesse looks at Vance and Fred and thinks about the life we might be living, if not for this cancer. his health. We have a dream. We want to move back to New York someday. I’ll write for The New York Times and he’ll be the vice president of Sony’s US regional headquarters. We’ll put down a payment for a small townhouse apartment and live there till we’re a couple of 80-year-old queens.

There are days I can’t tell if this tightness in my chest comes from loving him so much, or from my fear that time is running out for us. The grieving process - the imminent possibility of it, the fear of it - how do you prepare to lose someone you love?

It was a great day at the gym today. After my 5km run, I lay on the exercise mat and stayed there for a long time.

It’s rare to have a quiet moment to yourself these days. And I don’t mean just being by yourself physically, but real quietude. A sense of close proximity with yourself. It’s that feeling of a moment when you feel your thoughts and body come together that’s not usually felt in the humdrum of everyday life.

15 minutes of laying there, I started to move. It was as if my body had suddenly re-discovered its natural freedom. I was dancing. I looked at my fingers and toes with new gratitude. It was as if they had left me and had found their way back. It didn’t take me long to realize that it was I who had forgotten them.

Running has always been a metaphor for me. You can run towards something as surely as you can run away from something. This life, haven’t we always called it a marathon, Jesse?

It’s common knowledge that running helps to release endorphins that simulate feelings of happiness. But it is also a cathartic expression of individual empowerment. Whether towards or away from something, it is an act of movement, an act of non-stasis. It is, in fact, an act of life.