When this is over, I’m going back to the West Coast. I’m going to find a cheap, humble house near the beach, get an old dog — maybe a retriever of some sort from the pound — and take long, thoughtful walks every morning at sunrise. I will have gray hair, never braided but messy from the wind and the moist ocean air. I will, on occasion, pick up a smooth stone from the sand and lick it just to taste Mother Ocean’s sexy saltiness, without caring what else I might inadvertently taste. And after those walks I’ll go back to my house, which will be small and untidy, full of books, seashells, pine cones, and pictures of people I love. I’ll drink strong coffee and eat marionberry jelly on rye toast with my lover — or I’ll eat alone, depending on how this all turns out.
So far it’s not turning out as I expected. I thought it would be more scientific, with all sorts of cutting-edge technology. And I thought it would be infinitely more compassionate, just like on television: a merging of high-tech solutions with empathetic care. Because even though I know that real life is not like television, I expect it to have at least as much go-for-broke, do-the-best-you-can effort.
When Kai first told me, in his evasive way, amid the cheerfulness of springtime daffodils, that he had cancer, “or something like that,” the announcement slipped down over my head like a cardboard box with the words NON-HODGKIN’S LARGE B-CELL LYMPHOMA written in day-glo letters inside. It’s the only thing I can see, the only thing I can think about.
Lymphoma: a word so common that spell-checker will fix it; a word with such deceptively soft syllables it sounds more like a cushy place to rest: “Honey, I’m going to lie down on the lymphoma and take a nap.”
With the box of Kai’s diagnosis impeding my senses, I reach out like a scared toddler and take my lover’s hand and trust the doctors to lead the way, to take us where we need to go, to take care of this man and, in turn, take care of me, because our lives are tangled up together like twisted sheets pushed to the bottom of the bed. When the doctors say Kai has “pretty good chances,” he and I leap over the imaginary fence into the lush pastures of remission, so hopefully verdant, dotted with daisies. Welcome to the land of pretty good chances, but listen for rattlesnakes.
Three weeks after Kai’s diagnosis, his mother (speaking through Kai’s older brother, who translates from Lao) asks me if I know of any herbs that might help her, because it hurts when she pees. I buy her some cranberry extract but advise her to make an appointment with a doctor, just to be sure. A week later she sees a doctor. Two weeks later, she’s skipped right over “pretty good chances” and gone straight to the final prognosis: a large, cancerous tumor will dictate how much time she has left among us.
The decision is made to move Kai’s mother from the home she has shared with her bachelor sons to the household of Kai’s sister. This is a good thing — they are better equipped to care for her at Kai’s sister’s — but the bachelor brothers now list through their days, having lost their rudder. They have to cook and clean for themselves, and there is no one prodding them to drink less, gamble less. They ask me when I think their mother will be back, when she will be better, even though we all know that she won’t be coming back. I am not willing to be the person who tells them this, so I just say I’m not sure. I say this also because I believe in the power of words to create reality, and I don’t want to hex any potential forthcoming miracles.
Now that the familial resources are spread thin by two cancer battles, I know that I will run the gauntlet with this man who has given me so much happiness and joy, and so much frustration and confusion, because love goes the distance. Besides, I have no other option. Communications will break down. Medical-speak is hard enough to comprehend if English is your native tongue, but for Kai and many of his family members and friends, English is their third or fourth language. I know how Kai will lie and say he understands, just to get the doctors to shut up so he can go back to whatever he’s doing. And I know how doctors will misunderstand him and just do whatever it is they want to do. The result: things will go awry.
So I will go the distance; I will do my best. I am thinking that we can have this cancer bagged and tagged in just a few months — hey, we live in the land of pretty good chances. My sister asks if my daughter can help her with child care during the summer, and my former husband offers to have my son stay with him, allowing me to focus fully on Kai’s cancer treatment and helping my mother get situated in a new house. I put everything in storage, quit my job, clear the bank account, and for all practical purposes my address becomes my 1989 Toyota 4Runner.
For four months, I commute between my filial obligations in one state and my commitment to my lover and his cancer treatment in the next. The all-day drive becomes onerous, and my ass spreads ever wider on the driver’s seat. I begin asking people in small towns along the way for suggestions on good places to camp where I can be alone. They give me directions to their favorite secret spots, and I make the turn up some dusty washboard track to spend the night alone in the mountains, to nod my head to elk and coyotes, hawks and owls, to beg and plead for some mercy and direction.
I make it to every doctor appointment. I sit beside Kai at the medical offices where he receives chemotherapy and hold his hand while the nurse misses his vein for the third (fucking) time, and he squeezes my hand so tight and hard that I can feel that needle ferreting around in my own arm. Then begins the slow drip from bags with unpronounceable labels. We cozy down for the duration with blind faith in those clear plastic bags and the medical personnel who prescribe and deliver them. As we sit there, we make plans for all the adventures we are going to have once we’ve swept this cancer thing off the front porch.
While Kai dozes, I imagine meeting his distant relatives in faraway places, sitting back and eating papayas and mangoes that grow right in the backyard, and swimming in warm Southeast Asian waters. My eyes wander the room, checking out the other people here for chemotherapy. I’ll say one thing for cancer: it is nondiscriminatory. This standing-room-only crowd is a picture of ethnic and socioeconomic diversity. The only group missing is the upper class. I suppose wealthy cancer patients go to private clinics with potted plants, soothing music, leather furniture, and a better selection of magazines.
One fiftyish man is always on his cellphone. He talks a little too loud, as though he wants people to hear his directives: trade this, buy that, dump those. Maybe he thinks that all this outside cellular activity will counteract the cellular activity going on inside him; that all this impressive jabber will make the cancer realize he is just too damn busy and important. There is also a youngish African American woman who is beyond beautiful. She sits in her chemo chair as if it were a throne. I am rooting for her because it would be a shame for the world to be deprived of all that regal attitude.
There are plenty of seniors here — not exactly the “golden years” they must have envisioned — but the real gut-wrencher is the young Latino, who can’t be more than eighteen or nineteen. He is athletic-looking, the picture of youthful health; you just know everyone was cheering for him last week at the big game. Looking at him reminds me of my own children. I think that’s the only thing that would be worse: if I were here with one of them instead of with the man I adore. My eyes fill with tears, but I get the better of them. I will not cry in front of all these people, who are being anything but crybabies. Nor will I cry at the ludicrous idea of fighting disease with poison. I will not cry over the fact that life has just gotten a little too real for me. And I will not cry at the thought of losing Kai, even though I am (selfishly, selfishly, selfishly) afraid of being alone.
Always, through every session, I am on the lookout for that flash of lightning, listening for that clap of thunder that will let us know that the cancer is on the run, that we’ve won the battle. I’m waiting for the moment when the nurse will sidle over with a big, mushy grin on her face and tell us, “Oh, no, you don’t need any more chemotherapy. Didn’t we tell you? Your cancer is in remission.”
It’s after the chemotherapy race has been run and the blood has been drawn and the results are in that reality, sly crapshoot that it is, not only does not offer the hoped-for remission, but stretches out a foot and trips me. And this is OK — actually, good — because reality knocks some sense into me. When I hit the ground, the diagnosis box comes flying off. Lying there blinking, feeling stung by the too-bright light, I fully realize the slim chances of finding a doctor who went into oncology not because it’s the highest-paid branch of the medical profession, but because he or she really wanted to help people.
Oh, to be one of those quick-thinking people, instead of the slow-thinking person I am: so many questions left unasked or never properly answered; so much time wasted being polite, following directions, showing up for appointments. All that poison, all that vomit and sweat, no more body hair (not even eyelashes). And the cancer remains.
I feel as stupid as when I was a trusting ten-year-old and that carny with the lazy eye conned me out of all my pocket money, assuring me that I would win the fabulously huge stuffed tiger by landing a basketball in the basket. (“Just trust me. Do it again. I’m sure you’ll get it this time.”) Not since then have I felt so completely inept, so tricked, so duped as I do now. No one ever broached the possibility that the poison might not kill what it was meant to kill. I blindly trusted them to serve up everything straight and neat as a shot of whiskey. In this appointment, I realize the full circle of possibilities has never been discussed, not all the cards have been revealed. Did I trick myself? Did I dupe myself, tying my own blindfold because I cannot accept the reality that maybe the death card, the big change, is what we’ve pulled? What I’m wishing is that one of these physicians could have taken the time and very candidly explained all the possibilities to us . . . and yeah, I do think it’s a responsibility that comes with the position.
Kai’s oncologist informs us that the plan now is to watch the cancer and then decide on the next procedure. This feels like watching the intruder in your house to see whether he’s going to make a move on your daughter’s room. I want to dial 911 now. I want law enforcement to show up, guns drawn, at the door. I want to leap across the room and grab this physician by his white medical lapels and shake him.
I look at this man and realize I have never really looked at him before — maybe because, as everyone knows, doctors are akin to gods, and looking at them fully might burn one’s eyeballs to a crisp. (But maybe that’s too angry a thing to say.) Of course, I don’t think he’s ever really looked at us, either. Maybe we make him uncomfortable: we do that to people sometimes; we’re a visually odd couple, like mismatched socks, the slight man and the too-tall, busty brunette with too many earrings, too much cleavage, and hairy legs. But all of a sudden, I want to know all about this oncologist. He’s tall, and younger than we are; like Kai, he is Asian — which made Kai somehow sure that he would be a much better doctor. Whatever it takes, I thought; whatever you think gives you the edge often does, merely by the thinking.
This oncologist moves in a gawky manner, like a teenage boy who woke up one morning in a man’s body and is not yet comfortable walking around in it. He has a thick gold wedding band. So he’s married — but to whom? And does he love his partner? I wonder, if the situation were reversed, and I were in the oncologist’s chair, slack-jawed and bored-looking, telling him to “wait and see” with his sweetheart’s cancer, what would he do? I want to know why he became an oncologist. I want to know what he thinks about on his way to work every day. I want to know if he ever wakes up in the middle of the night in a cold sweat, wondering if he prescribed the right medication for one of his patients. I want to know if he even gives us a second thought when we walk out the door.
I want to tell this doctor about my lover: that he is so much more than just another patient with cancer. I want to tell him how Kai is a son, father, brother, uncle, and friend, and will soon be a grandpa — an excellent, spoil-the-kid-rotten kind of grandpa. I want this doctor to know how Kai lived when he was traveling the Pacific Northwest, harvesting salal and bear grass to sell to floral companies, following the mushroom seasons, and how I met him and he moved me to remember the wonder of simply being alive. I want this oncologist to know about my lover’s poet heart and how, when our relationship was just beginning and I asked him when he would be moving on to the coast to pick winter mushrooms, he replied in his throaty, singer’s voice: “My heart is in the mountains now; I will stay to see you.” I want this doctor to know about how my sweetheart drove two hours through a snowstorm to get home because I said I was cold. I want to show him the nude portrait Kai drew of me: a big-boned goddess rising from a lotus. I want him to read the letters we wrote each other. I want him to see this man I love as a fellow human being.
Instead I ask the doctor about the next procedure, just what it might entail, and he gives me yet another answer that’s not an answer, vague talk about a possible bone-marrow transplant, the discussion capped off with “It will all depend on the progress of the cancer.” It’s so tricky to communicate with doctors, in their exalted position; you want them to be forthright with you, but you’re afraid you’ll piss them off if you press them. I feel a flush of anger, the back of my neck all prickly, but Kai puts his hand on my arm. It’s a message, like a gentle tug on a leash: Don’t bite the doctor. “Let’s go, honey,” he says. And so we do, after setting up the next appointment, one month away.
We go home and wait on the cancer and try to live our lives with these renegade cells, these houseguests that have overstayed their welcome. We hope that they’ll pack their bags and leave.
Instead an assassin infection kicks the door in, overwhelming Kai’s immune system, which is already staggering and punch-drunk from chemotherapy. The doctors and their glossy pamphlets say that “chemotherapy may impact your immune system.” What they should say is that it may impact your immune system the way a racist inner-city cop “may impact” a Haitian immigrant; the way a tornado “may impact” a mobile-home park; the way a board smacked against your skull “may impact” your ability to think clearly.
We get to the emergency room at midnight on a Friday night. The waiting area is chock-full, mostly with coughing and bleary-eyed kids, their parents as tired and crabby as they are. I won’t bring Kai in to sit with sick people and further endanger his impaired immune system. So I insist that he be brought straight to a private exam room, away from the sick and injured. I feel guilty, but I reason that everyone else here will probably be healed in a few days regardless, which isn’t the case with the man I love, who seems to be getting worse.
My pushy attitude peeves the front-desk people, but I do get what I want. We are whisked through to an examining room, where we wait . . . and wait . . . until a doctor arrives who agrees that Kai is very sick and should be immediately admitted to the hospital. Halle-fucking-lujah. “Immediately” stretches into five hours.
Eleven days in the hospital follow, ten of them marked by fevers that leave the bed soaked with sweat and headaches so awful that Kai does little but moan. I stay by his side because I cannot bear to leave him, because I’m afraid, and because he has asked me not to go away.
We are attended by a hospital staff that changes every day. Final tally: ten doctors, eleven nurses, and even more assistants, medical technicians, and so on, but it’s the housekeeping crews who are the most consistent in their treatment of us. They knock at the door softly, come in quietly, and tidy up, mopping up our footprints, emptying our garbage, going about their work tenderly and efficiently. Doctors should be so sensitive. One young man who comes to spiff up the hospital room is soft-spoken and very handsome. Kai turns on the television, and there is the news of yet another highly paid athlete accused of overstepping consensual boundaries. Watching the young man wring out the mop, I think to myself, We idolize the wrong people in this culture.
Based on what I’ve seen so far, there are many people who followed their hearts into the medical profession, but there are more who entered the arena for personal material gain and have no great desire to tend to sick people. And the difference between them is as obvious as the difference between high noon and midnight.
One problem we face is the “Who are you, his wife?” question. The people in the healthcare system do not understand that we live outside conventional categories: He is not my boyfriend; there is no letter jacket, no class ring on a gold chain. He is not my legal husband; there is no supporting documentation, no framed certificate. He is simply my lover, and has been longer than any other; I cannot remember when he was not there. He is my first thought in the morning, my last prayer before sleep. He is the reason I will curse these doctors every day for the rest of my life should they be so incompetent as to let him die.
Stupid things happen. A burly medical technician swaggers in to take vital signs as I’m changing Kai’s hospital gown and bedding for the umpteenth time. (To wait for the staff to do it means he gets cold and uncomfortable between fever swells. Housekeeping gave me a supply of gowns, blankets, and sheets so I can do it myself.) Seeing a tattoo of elephants on my lover’s arm, Mr. Med Tech, in an authoritative, I-watch-a-lot-of-crime-shows-on-TV tone, says, “So you’re from Thailand, right” — an assumption, not a question.
Kai does what he always does with people for whom he doesn’t have energy: he says, “Yeah, whatever.”
The med tech replies, “Yeah, I saw the elephant tattoo, and I knew you were from Thailand.” (I’m thinking that maybe the med tech can’t read, because right below the tattooed trinity of elephants are bold black letters that spell out “LAOS” — name of the mother country of my lover, site of CIA intrigues past, land of a million elephants.) Then the med tech makes a startling deduction: “And you’re a Buddhist monk, right” — again, an assumption, not a question.
And, once again, my lover replies, “Yeah, whatever.”
For three days following this exchange, Kai gets instant attention whenever we press the call button, and the staff serves him special noodles and curry and speaks in reverent tones. This is a welcome development, as it saves me the time and money I spend each day going to the Vietnamese restaurant or the Asian market to get food that Kai will eat. He’s just not culturally geared to eat mashed potatoes and gravy. But then, as all good things must, the special treatment comes to an end: someone must have actually read his chart and discovered that, no, he’s not in tight with the Dalai Lama; he’s just another bald cancer patient who speaks accented English and happens to be Asian.
On day seven, Kai’s youngest brother calls and tells us that their mom is now in this same hospital, on the third floor. I leave the fifth floor and go down to see her, the most gracious woman I have ever known, who, in spite of our inability to communicate verbally, has taught me much through her evenhanded generosity. When I arrive, she is sleeping; none of the family is there, which is strange, because they usually make sure that there is someone with her. As I step into the room, I watch a young med tech take hold of an IV needle in her arm and twist it into a different position. Then he removes a pillow from behind her head, causing her head to fall back: thump. I think, Thank the gods for morphine. But the med tech’s tender mercies must have hurt enough to wake her up, for she looks past the rough young man and pantomimes to me that she wants a drink. The man says she’s not allowed to drink, however, because she just got out of surgery, and she may not have any visitors yet, either.
I’ve been in this hospital too long; I opt for a little drama. I touch the med tech’s shoulder and motion toward the side of the room conspiratorially, leading him away from Kai’s mother. In a hushed voice, I tell him that this is not just some old woman, but a queen by birthright, and that if any of her people had seen what he did with that IV and then the pillow, the least he’d be out of would be his job. “Really, for your own sake,” I urge him, “be very careful in how you treat this woman. These people are very good people, but they are very protective of her because of who she is. Do you understand?” He nods his head, and I think I see a flicker of fear in his eyes. He thanks me for the warning, leaves the room, and in a minute is back with fresh water and instructs another assistant to be sure this patient gets water in twenty minutes, as soon as she’s in the safety zone for drinking after surgery.
Now Kai receives more visitors, overflow from the people who come to see his mother, a beloved, respected woman within the Lao community. They bring food and good wishes. This lifts his spirits, and he makes progress toward being almost well enough to leave. I go down to his mother’s room twice a day, and keep each informed of the other’s condition.
More stupid things happen. The bronchial specialist wants to do a bronchoscopy on Kai — the medical equivalent of a good ol’ boy wanting to see if his 4X4 will take the hill better with the three-inch lift. After this procedure finds nothing, he suggests a biopsy; I tell him the particular biopsy he’s proposing has already been done, and was uncomfortable enough the first time. This doctor also calls Kai — fierce, proud person that he is — “little man,” and actually pats him on the head, as if he were a cocker spaniel. Then he corners me in the corridor and asks just what my relationship is to his patient.
After nine days in this place that smells like plastic, piss, and disinfectant, my grip is a little slippery, and so, looking this doctor square in the eye, I say, “Oh, he’s my pimp, and we’re losing a lot of money being stuck here.”
Finally, on day eleven, the fever has retreated, and Kai insists on leaving. He is served discharge paperwork with lunch: sign here and here and here and here. I help him dress. He’s lost even more weight, and his belt is on the first notch. We make our shaky way to the elevator and stop by his mother’s room. Both mother and son are saddened to see each other in this place, and in this shape, but love puts on a good face anyway. A trio of Lao matriarchs, friends of Kai’s mother, show up laden with flowers and food, so we relinquish our seats and make our way to the car, squinting in the sunlight, breathing in the warm, thick air of this desert city. Like people who have just gotten out of jail, we are uncomfortable and grateful at the same time in all this light and air. We’re finally going home, back to where people know who we are and love us in spite of it. Finally going home to figure out what we are going to do when this is over.
Two months after this essay was written, the man I loved, the man who was more alive than any person I have ever known, died — not in his sleep in his own bed, but in a hospital bed during the starlight hours of early morning, losing the fight to hold on to life. Four days later his mother passed, taking some of the sweetness from everyday life, but leaving an example of how to live and love with kindness.
Left to myself, I would have curled up with my bitterness and sorrow and hibernated there, but the love and compassion of my children, my friends, and Kai’s family kept me from drowning in grief. During the two solid weeks of Buddhist funeral ritual, Kai’s relatives cried with me, gave me reasons to laugh, and pressed bowls of food into my hands. They gently led me to the shower or to bed and gave me small chores that kept me busy and made me feel included.
Though I will carry this craving for the company of both Kai and his mother for the remainder of my days, I will also carry the memories of the generosity of my lover’s family as we all moved through this deep sorrow: of watching hair fall to the ground as my lover’s brother had his head shaved in order to become a monk for his brother; of the monks leading the two funeral processions, bright orange robes flowing in the breeze; of the rhythmic chanted prayers that I did not understand but that comforted me nonetheless; of the good-luck money handed to me with best wishes, and so many people braving the language barrier to offer me words of hope and strength. While one cup is emptied, another is filled to overflowing.