Two Lucky

The minute I uttered the words, “blood pressure,” I felt a balloon burst in me. It was more like an implosion; air was sucked out of my lungs, replaced by something wet-like. It happened in less than a second. My eyes filled with water. I had to look away.

My reaction caught me by surprise because I wasn’t even thinking about Rusty at the time. The words I said bore no context to the cancer; I was lamenting to a friend at a bar how the dearth of cabs in Singapore would one day surely lead me to seek medical attention for elevated blood levels.

But in that second, those words took me back to that little white room at New York-Presbyterian Hospital, where “blood pressure” was the arbiter of Rusty’s survival. Every other hour we monitored his numbers to see if his body would endure another dose of chemotherapy. That was three months before he died.

I shook under the weight of the two words, and as my mind wandered, more came: insurance forms, contrast solution, doctor’s appointment, platelets, subcutaneous tumors, initialise here, dehydration, clinical trial, scans, nurse practitioner, response rates, alcohol swabs, refills, bags of blood, emergency room, do-not-resuscitate.

These were the words that defined a lifetime for me, the words that forced themselves into my common experience, the words that my tongue reluctantly became familiar with.

In the last two months, I haven’t said, or heard much of these words. Rusty’s death not only released him from his suffering, it released me too. Grief may be my new imprisoner, but I know it will not stand up to love. In claiming back the words of everyday life, I piece back a little of myself, and with each new piece in place, I feel more solid, more clear-headed about my feelings and what to do with them.

Though I still live each day on the edge of water, I give thanks every morning for being onshore. The sea, once menacing, threatens me no more. When I wade, I am not afraid. I look out into the distance and see the sun on the horizon, beginning to rise. Its light is simple, magnificent.

I say to myself, “If only you could see this, Rusty,” and immediately I know he does.

Red berries, by Mark Payton

Everyday love

As a matter of course, when you’re faced with a challenging prognosis, it almost seems imperative to make every moment somehow more meaningful. Ordinary, everyday activities like doing the laundry, grocery shopping and paying bills fall by the wayside. There is an impulse to go with a bang, as it were.

Rusty and I have no such bangs to covet. All we want is a quiet home, no more doctors, needles and scans. We want to go for walks, watch Comedy Central, grow some hallucinogenic herbs we might occasionally use in our diet. If anything, it would be best if we could forget about the cancer and have conversations like this every day:

Me: Good morning my handsome

Rusty: Good morning my blak laka

Me: Good morning my cream cannoli

Rusty: Good morning my berries with red curry

Me: Ewww.

Anniversary special

I am gearing up to leave in two weeks. There are air tickets to confirm, bags to pack, but it seems impossible to get anything done with so much work in the way. At the end of the day, this is what matters to me: That after a difficult year apart, Rusty and I are finally going to live together. This life ahead of us, at least for the next six months, will be everything we’ve worked towards in these short two years. The New York apartment we put our names to will be our first, real home.

I emphatically reject the tyranny of this cancer. In this new life, I don’t want any more sleepless nights. What fear I have, I must learn to replace with hope. I must remember that this journey is a marathon, and that when I am weary, I can ride on love to keep going.

A year ago, I said:

Let our love guide you through these times, Rusty. 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.

Soundtrack

I’ve got my love to keep me warm, by Ella Fitzgerald and Louis Armstrong

Anniversary special

Two years ago, Rusty and I met at cafe French Roast in New York. We had exchanged e-mails online and had been chatting for two weeks. At that time, I was cruising through my dating career. I changed boys more often than I changed shirts. Hell, I think I even wore the same shirt to three dates that week.

My point is, it was beginning to become a chore and I almost wasn’t going to show that night. But Renee had an idea to jazz up the evening. Turns out she also had a date she was thinking of blowing off. So, just for kicks, we arranged to meet our dates at the same cafe. Mutual support, she said.

As our men arrived, Renee and I sat at different tables, but positioned ourselves so that we could scout out each other’s suitor. I saw a tall Swede in his early 30s sit down next to her. He wore glasses that made him look older than he was. He may even have been slightly bald. Rusty, on the other hand, looked dapper in a T-shirt and vintage jacket. Brash, blonde, and avoiding carbs - as far as I was concerned - I had the better cut of meat that night.

Reaching Shadow, by thepres6

Quiet life

After a very green week in Amsterdam, Rusty returns to New York today. Meanwhile, I continue to bide my time here in Singapore, waiting for my departure, our reunion. Work is difficult. I am distracted and honestly, not terribly interested. With each day, I worry more about how he’s doing. After two years of fighting this disease, I know how easily things can take a turn for the worse.

For now, the fevers and chills are gone, but the lump is still there. We do not want to jump to conclusions. It’s possible it is just an inflamed lymph node. Rusty will see Dr Wolchok about it on Wednesday. He receives his second infusion of Medarex in about two weeks.

Apart from all the cancer talk, I am excited about this imminent six-month move back to New York. All this time it’s been my wish to settle down with Rusty without all the extensive flying we’ve been doing. Under these circumstances, the old adage: Be careful what you wish for, seems appropriate. But I do not forget that even so, what a blessing it is to have a chance at a quiet life together again.

A new lump surfaced on Rusty’s leg yesterday. We are not entirely convinced that it is cancerous, but it is possible. Also in the last week, Rusty has been experiencing intermittent low-grade fevers and chills at night. Nothing a couple Tylenols can’t help, he joked over the phone. But I can tell he is worried.

By AcidWorkz

Week in review

Word is going around in the office about my imminent departure. What did I expect? This is a newsroom, after all. Every journalist worth his salt loves a delicious tale, and one such as this - of love, death, and decadent designer splurges - is bound to make its rounds. Here’s an update:

1. My leave of absence has been approved by management. I fly out from Singapore to New York on Friday, Dec 8. By that time Rusty would have just moved into our new apartment, and I will be in time to assist putting on the final decorating touches.

2. Also, Rusty received his first dose of Medarex last week. It was a 90-minute infusion. He walked out of the hospital, pain-free, but called later at 3am complaining of a nagging, physical discomfort. “I don’t know how to explain it,” he said, “I just want to crawl out of my skin.” The side effect lasted a few hours, and went away after our good friend MJ kicked in.

3. Plans have been made to spend this year’s Christmas in Paris. Translation: Lots of fine wine, fresh foie gras and sparkling conversation. We will stay with our favorite Uncle Bernie and Aunt Marcia. Then, back to New York on Dec 27 for a second infusion.

4. While on the topic of addictions, I’ve decided to quit smoking. I’ve decided this a fair number of times now. But this time, I’m putting it out there so anyone who sees me with a cigarette is entitled to kick me in the nuts. Or slap me on the ass, whichever gives you more pleasure.

5. And as far as nuts go, I am becoming such a girl. I don’t mean this in a secret-sex-change-operation-in-Thailand kind of way. It’s just that in recent days, I have missed Rusty so much all I want to do is snuggle in his chest and hear ourselves breathe, in synchrony.

If not for this bond, I could move to New York with Rusty and look after him there. For now, this is not an immediate concern. In a few days, my company will likely approve my application for a six-month leave of absence. But what after that? In recent weeks, discussions between Rusty and myself to find creative ways out of this financial impasse have turned more serious. Certainly, it is a sensitive and complicated subject. Is $500,000 worth what time is left to spend with your loved one?

Our objective is simple enough: We work towards a life together in New York as soon as feasible. But whether or not we proceed, if and when we are financially able to do so, almost seems a separate matter. As far as I am concerned, this is something that gives him a reason to fight and live. Money may not buy happiness, but it can buy time. For the countless people who are sick and cannot afford medicine, tests and specialist doctors, money is - at the very least - their best shot at happiness for the time being.

There are not enough answers for the questions that lie ahead. It is not so much that I am afraid of leaving here, but of what is to come. Every day, I wake and convince myself that I am strong enough to take this on. But I am not so persuasive all the time.

By bitzi

3 times a charm

Doctor Wolchok from Memorial Sloan-Kettering hospital wrote this morning to say that Rusty has been accepted into its Phase 2 clinical trial for melanoma. This is a huge relief. After almost a month of waiting, we were beginning to worry we’d have to look for an alternative treatment. Rusty begins his first infusion tomorrow in New York.

Before a drug gets sold on the market in the US, it needs to be approved by the country’s Food and Drug Administration (FDA). To get FDA-approval, there are three phases of testing.

The first phase is to test the drug’s toxicity: What are the patients’ medical risks and side effects of taking it? Phase 2 tests the drug’s effectiveness by measuring its results against placebos: Does it really work?

In the last phase, the drug is tested again in different populations and protocols to determine its most ideal dosage. In phase 3, the patient size is also the largest, typically ranging from several hundred to about 3,000.