Sumiko was diagnosed with stage four cancer in September of 2001 – – 36 years old. She died on April 7, 2004.
For two years and seven months I was by default reporting all day, every day in every nook and cranny of health care.
If I look at it bluntly, now in retrospect, it was probably the worst kind of participatory, immersion journalism – – partly because when it was over I didn’t want to think about any of it again, couldn’t look at anything related to my wife, pictures, diaries, memories, do follow-up interviews. But all I could do was think about it.
What I have now amounts to basically a catalogue of suffering, some grace, and first hand reportorial experience with EMS, hospice, doctors, pain specialists, the insurance industry.
Some of what follows I wrote a month or two before Sumiko died, then I went back and revised it – – some was written after she died. The tense is not consistent so bear with me.
Sumi is in a home hospice program now — Cabrini — and we got really just lucky and got assigned a good nurse — smart, compassionate, good. The home health care aides would literally hurt Sumi, repeatedly, even in front of me — they’re untrained, unable, unwilling. The Visiting Nurse Service of NY is also terribly lacking and ridiculous but their television commercials are heartfelt.
We’ve got a hospital bed in our apartment now, oxygen tanks and breathing machines, hypodermics, and drugs. Drugs, here are drugs heavy handed with-holding DEA; and here are drugs every-too-scared-to-prescribe-more- than-12-acetaminophen-heavy-hydrocodone-pills-doctor; and here are drugs every talking head crying about script abuse and NY Post gossip screaming so and so “ABUSED POWERFUL PAINKILLERS.” We had liquid morphine, zyprexa, fentanyl patches, haldol, ambien, ativan, oxycontin, percocet, medical marijuana, and all manner of steroids. And they didn’t do a damn thing – – girl was still writhing and howling in pain. So please have the decency to shut up until you’re they’re and you’ve heard the screaming.
She’s waiting for a new drug to be approved – Avastin – – she’s already exhausted all that’s out there – – writhing in pain on the sofa, waiting to be picked in a drug lottery, to get chosen – – lotteries for life saving drugs. She’s now losing lucidity a little – – she’s started calling me okasan, okasan, okasan , all the time — okasan means mother in Japanese – – she only talks in Japanese now, though she’s never done that with me before.
I think she’s on the verge of dying. She is on the verge of dying. If it happens tomorrow, I’m at peace — honestly though, if it goes on for weeks, months it would be hellish. There is a tremendous amount of suffering, crying, pain, need, fear.
The cancer has metastasized to her bones and she has bed sores that look like shot gun blasts because her metabolism is so out of whack that there is no nutritional, healing process going on. I have to log roll her, inch by inch because it hurts so much to even move her a bit, to slightly adjust her position. We go to the hospital once a week to get her stomach tapped — it would swell to the size of an 8 month pregnant woman — they’d drain 7 liters of liquid out of her — the cancer went to her brain for the third time — cancer is in her liver, all over her stomach, her lungs. I can’t even carry her from the bed to the portable commode — so it’s diapers and she asks me like a little girl if it’s really alright to go, is it really alright to go, can I go like this, she’ll ask.
I read everything I could on cancer, or rather how to provide medical care for all the cancer related problems – – everything goes wrong — at the end she was incontinent, she was bald, she weighed — God knows, bone protruding weight, 50 pounds, 40 pounds, 70 pounds. She stood in front of a mirror once, her whole torso back and front covered with some horrible red rash, origin unknown, skin cracked, stomach protruding, and she said matter of factly, not self-pitying but acknowledging how ridiculous this disease was, “This is not a human being’s body, I don’t look like a human being.”
For me it was like watching a decent, caring, good person literally being tortured over and over again for almost three years. What do you say when someone you love is in a hospital bed and she says she thinks she’s going to die, that she doesn’t want to die and then her face screws up starting to cry a little but holding it back – – she hides her face because she doesn’t want to be pitied and she doesn’t want to think about it, she wants to shake it off, out of her mind that she’s going to die because she says she’s to young, she’s not ready to.
I kissed her enough, I massaged her enough – – but now I think not enough.
One night before she died — Sumi’s peacefully sleeping now. I hope I have the endurance for this to end okay.
There is one image I have of her the one night she spent in actual hospice — so comfortable in bed, unselfconsciously wearing a blue diaper above the covers, unselfconsciously bald — she would only be like that with me or family for 2 years and 7 months — but the image: she was smiling, she was happy, she was drinking a frappucino — I bought it with me in the ambulance that day, she yelled out to me from a stretcher to bring it for her – – I was shocked.
I should also mention that today Sumi still smiled a few times and gave me a thumbs up a few times – – because of the crushed ice and fruit pops I gave her. She’d also give me a thumbs up when I’d squirt juice into her mouth with a pet shop bought syringe because she was too weak to use a straw – – thumbs up for new sipping cup I bought her – – she’s completely a good sport — she got a kick out of the cute teddy bear on the baby wipes container that I bought; so it’s not all dark.
I once thought she was in a semi-coma because they tell me that she’s probably going to go into a coma (though they’re so wrong about so many things it’s absurd) and she had been out so long — so I held her hand and told her many things, things I think I’ve told her in the past just in e-mails or letters, not so much aloud. Then I started crying a little — I’ve never cried in front of her ever and she grunted, moaned, snapped out of it; made me smile right away for some reason and I said I thought you were sleeping. I think that was the end of that but at least for thirty seconds I thought something beautiful and comforting happened — she didn’t want me to cry.
You can imagine how much I cried when I wrote this.
She can’t read now – – has to wear an eye patch – – torture for someone who loves to read — I think from the tumor in her brain, she can’t talk, or it’s so faint – – she tries to say something and me or whoever is around her has to say I’m sorry,say it again, say it again, and she starts to cry with frustration and says why can’t anyone understand what I’m saying – -scared because why couldn’t she talk now, what was the matter now, with her hearing, her voice.
I shoot her up with morphine around the clock, 1000 milligrams a day, nothing they give her stops the pain or the moaning ( I asked for anything – – later, after she died, a doctor told me there were barbiturates that maybe would’ve done it). I climb in the hospital bed with her so many times, wedge my hands between the mattress and her body to ease the pressure on the bed sores – – I’m on a mission now and when the hospice nurse says I don’t think we’re equipped to handle her level of pain, that we should move her to an inpatient hospice in the Bronx, because her hospice, she says, to be frank, is not that great, I say no – – Sumi doesn’t want to go, begs me not send her, to keep her at home and I will. The nurse calls me later that night and says she’s not giving up on her, she didn’t want me to think that. I thank her.
I tried everything and gave everything at the end, which was horrific in ways but relatively easier than coping with the idea that she could be chronically ill for years and I’d have to be a caregiver – – it was a sprint – – all the doctors gave up on her – – she was so scared to die and I didn’t know what to say; just…
I gave Sumi a shot of morphine around 3 a.m I think – – I was out in the living room talking to a friend, Wei, who had been helping out. I went in to check on Sumi and saw what looked like her mouth stretched open and some kind of froth coming out – -I immediately grabbed her and turned her on her side – – I thought I should resuscitate her a little to make the dying easier, (don’t even know if that’s possible) but I didn’t want her drowning, gasping for air.
I stuck my fingers in her mouth to try to open her jaws; they’re locked; unbelievable tight mouth — – I use all my strength to pry her teeth apart, finally able to do it, she was breathing, her heart was beating –– I was hoping so badly this wouldn’t go on for hours — because there’s nobody to call — she’s in hospice, she’s supposed to die, not be helped or resuscitated. I turned the oxygen on, picked up a mask, then just dropped it, I saw her lips, her lower lip turning blue — I knew a long time ago that when it happened I didn’t want a picture in my head ever of Sumi’s face dead — I only wanted to remember her alive.
I put a stethoscope on her back and front over and over, kept on checking and rechecking for carotid pulse. I called hospice and was cradling the phone between my neck and my shoulder. The hospice nurse has no idea what to do, she had an attitude, she was sarcastic, 5 minutes into the conversation she asks if I want my wife admitted to the hospital; she asks my name for the fifth time, she asks if I want EMS to come. Screaming, cursing, they put me on hold and I had to listen to Muzak, EMS workers came and joked around, small talked with the hospice nurse on my phone — nobody knew what to do, it dragged on for a while – – it’s recorded but I can’t bring myself to listen to the tapes.
Wei and I undressed her, put her in beautiful clothes, put her in the body bag when the funeral home workers came.
I went to sleep and she walked in the door the next morning – – ghost or her.
For a few months after she died that image of her when I walked in the room would break me up — I would think how scared she must have been while it was happening, maybe all of a sudden gasping for air, feeling herself drowning — that drove me crazy for a while. Doctors told me that wasn’t likely the case, she likely didn’t feel it like I imagined.
She was in some kind of coma-like state for the last day or so, didn’t speak, not sure if she recognized me or recognized anything, so I gradually lost her, before I completely lost her — that made it a little easier.
After she was gone I didn’t know what exactly to do, to assuage the guilt, to thank her for things, to apologize for things – – I took her ashes to Japan, got an urn where the lid can be propped open because she hated being in closed spaces and she never wanted to be buried (her family promised me they’ll keep the lid open all the time), I prayed to her or to god, talked to her, kissed the urn holding her ashes, put out a cup of Gatorade for her next to the urn; tattooed 43 words on my arm to mark myself so no one will ever be with me and not know about Sumi.
At first there was relief; then catharsis, crying a lot; then I used her leftover morphine to numb myself, then trauma flashbacks, different images of her suffering coming back at me and breaking me up. Then really bad loneliness.
It took five years before I could physically look at pictures of her; see them as beautiful pictures and not heart wrenching.
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Thank you so much Rosalynn Carter Center; the Journalism Fellowship, the support