Category Archives: non-hodgkins lymphoma
Posted by andy nicastro
Two months after we return from Maui, I am sitting in my office on the Universal lot when the phone rings. It is Mike, calling from Rochester, New York, having flown there a few days ago to visit his friend Sharon. His voice, usually boisterous, sounds so small and scared I don’t recognize it at first.
“I need a favor,” he says.
“What is it?”
“I need you to go to the Gay and Lesbian Center and get the results of my AIDS test.”
Fuck. Fuck. Fuck.
Last month, Patrick and I had gone with Mike to a fourth of July party at Chris Kattan’s house in the valley. Mike had seemed a little subdued, and I kept asking him if he was okay, my constant insecurity causing me to think that maybe I had offended him somehow. He just wasn’t acting like the gregarious Mike I’d always known.
“My shoulder’s been hurting,” he explained.
I gave him a massage, sitting on the lawn, surrounded by Groundlings, but it only seemed to make it worse. He hadn’t gone to the doctor, he said, because he didn’t have insurance and couldn’t afford the visit. I told him I’d pay for the visit, and that he just needed to go, but he brushed it off and refused to talk about it any more.
I find out later that a few days after the party the pain had grown so intense he had driven down to the county hospital at USC. There, the doctor had asked him if he was part of a “high risk” group. Upon learning that he was, the doctor suggested that he be tested for AIDS before they do any other expensive tests. Mike balked at having the test done “on the record,” so he went to the Gay and Lesbian Center and got tested anonymously. They had given him a number that he was to bring back with him when the results were ready. Before he got the results, though, he had made the already scheduled trip back to New York.
While there, he had collapsed in a restaurant, and an ambulance had taken him to the emergency room.
Now, Mike is calling from his hospital bed.
“I’ve got cancer,” he says matter of factly.
I’m stunned, and for a moment I assume he is joking. But he stays silent, and I start feeling scared.
Cancer? If he has cancer, why do I have to go get his AIDS test results? It makes no sense.
“What?” I ask, confused.
“It’s lymphoma. But they don’t know if it’s AIDS-related or not, and the test they did here will take a few days. My results are already in at the center, so if you could go find out we’ll know sooner.”
He reads a number to me, which I transcribe onto a sheet of legal paper and fold up and put in my wallet.
I don’t know what to say. I never know the right thing to say in these situations, and this time is no exception. I start to say one thing, change direction midsentence, say another thing, and it just makes no sense. I grab onto myself mentally and give a shake, and say firmly:
“I’m on it, Mike. I’m going now.”
He gives me the phone number for Rochester General, I tell him I love him and hang up, needing to get this done, now. My friend is sick and I feel totally helpless. It’s the middle of the workday, but I find my boss Michael and tell him what’s up. Fortunately, Michael is a good man with an enormous heart, and he lets me leave, even though we’re overwhelmed with the enormity of this project. I drive to the Gay and Lesbian Center in Hollywood, where I sit in a waiting room, nervous as fuck before I am called into a small office and a counselor gives me the news that I….or, actually Mike…is HIV negative.
I am thoroughly relieved, but still shaking from the pent-up anxiety of awaiting confirmation of what I had assumed would be bad news. The counselor thinks, of course, that my emotional reaction is about my own health, and I want to tell him that I have never taken an AIDS test, that I’m way too big a pussy to even risk getting that kind of bad news. I want to tell him that these results are actually for my friend who is in New York with cancer, and that I always use rubbers…but of course I don’t and sit almost twitching with impatience has he walks me through a refresher course on safe-sex guidelines and compiles a stack of pamphlets to hand to me.
It is still the pre-cell phone era, and I drive quickly back to Silver Lake to fill Patrick in and to phone Mike with the good news. There is also no internet, no google, none of the research tools that will be commonly available in a year or two, so I can’t be certain, but it seems pretty damned likely to me that regular lymphoma has got to be a whole lot better thing to have, a much more curable thing to have, than AIDS related lymphoma. It is 1994, and the word AIDS still has the smell of certain death about it.
I call Mike, and give him the news. He seems relieved as well. I want to talk to him more, to find out more about how he is feeling, but he is tired, and he mentions a morphine drip, which actually reassures me a little because it explains the listless tone of his voice.
The next day, Patrick and I book a redeye flight to Rochester, and check into a small inn near the hospital. Upon arriving at the hospital, we find Mike in a private room, sleeping. His sister Julia is there, and she looks exhausted. She’s only been back in Los Angeles for a brief time after her run on Saturday Night Live, and she is currently weathering the scathing advance reviews of her movie “It’s Pat.” Although Julia and I have always been friendly towards each other, we are not close. Patrick, having been in the Groundlings Main Company with her, knows her better than I do.
“Is that woman still out there?” is the first thing she asks.
Patrick and I are perplexed, and I poke my head back into the hall.
“Just some nurses,” I say.
“Oh, good,” she says, sounding relieved, and explains that an ardent fan had recognized her. “She’s very sweet,” Julia explains, “but I’m just not up for it right now.”
I look at Mike, sleeping with his mouth open, snoring. That, at least, is familiar and thus reassuring. He looks pretty good, despite the IV lines and scary-ass medical equipment surrounding him, and my sigh of relief is audible.
“So how is he?,” Patrick and I ask at the same time. Pinch, poke.
Julia has a slightly nasal, adorable quality to her voice that is common to all the Sweeney children, but even that doesn’t lessen the impact of her next words.
“It’s not good. It’s Non-Hodgkins Lymphoma, and it’s stage four.”
Hodgkin’s? The shaky-head Katharine Hepburn disease? Wait, no.., that’s Parkinsons. I look to Patrick, hoping to see some recognition of these words in his face. But he seems as perplexed as I am.
“What does Stage Four mean?” we again ask simultaneously. We exchange annoyed looks with each other.
“Well….” Julia struggles to find a way to say what she has to say. “Basically, the doctor said that Stage Five means you’re dead.”
The next day, I’m alone in the room with Mike, who is still drifting in and out of consciousness, and I take on the task of hitting his morphine drip button whenever the machine decides it’s time for him to have some more. He seems happy to see me, but emotional enthusiasm has never been Mike’s thing, acerbic and wry being his two brightest colors.
“You didn’t have to come all the way out here, you know,” he slurs.
“Shut up. Of course I did.”
“I really thought I had AIDS, you know.”
“Well, you don’t have AIDS. And thank god, because they can’t fix that. This… they can fix” I say, trying to convince myself as much as I’m trying to convince him.
Mike, never demonstrative, reaches out and grabs my hand, surprising me, and I look away as I feel tears start to well up. We sit there in silence, and I continue to hold his hand long after the next wave of morphine has pulled him back under.
Over the next couple of days, Mike begins to regain some of his strength. I don’t know if it’s simply the rest, or if it’s the chemicals they’re putting into him, but his cantankerous nature begins to reassert itself. The doctors and nurses who are treating him are finally introduced to the real Mike. I suspect they like the weakened version of him better.
It might be because Mike, always a bit of a control freak, has decided to regain some of that control by demanding a business card from every doctor that stops by his bedside to impart information to him.
Before the doctor has barely uttered the words “hello, Mike,” he immediately interrupts them by saying, tersely, “Do I have your card yet?”
“Do I have your business card yet?”
If the answer is no, Mike demands one. He reads the name on it aloud, and asks if he is pronouncing it correctly. Once he has the pronunciation down, He takes a pencil from his nightstand and transcribes basic notes in tiny writing on the back of the card about what the doctor has come to tell him about his condition or treatment, often asking the doctor to pause or slow down so he can get it all down accurately.
If the doctor has already provided a card on a previous visit, Mike pulls the rapidly growing stack from the nightstand drawer, asks the doctor’s name, and then searches for the correct card from the stack he has arranged alphabetically.
“Ah, here you are,” he says, and quickly peruses the notes on the back to refresh his memory before he allows the doctor to continue.
The reactions of the doctors and the multitude of specialists ranges from smirking bemusement to blatant annoyance.
“Michael, I was just here this morning, we spoke for twenty minutes. You remember me.”
Mike doesn’t give a shit, though. This is his illness, these people are working for him, and goddamnit, he’s going to keep it all straight in his head. This flood of information would be confusing enough for someone not being given intravenous morphine. No patronizing medical professional will be playing God in Mike Sweeney’s hospital room, not now, and not ever. I blush red when this scene goes down, and it does almost hourly, but I’m glad to see Mike’s feistiness manifest itself again.
I begin to suspect that all these doctors have been informed that Mike is the brother of a celebrity, and perhaps this explains why each of them, to a one, bow to this slightly humiliating ritual on a continuing basis. Celebrity is a funny thing, and even in my short time with Patrick I’ve experienced the benefits of being next to it. Being seated at restaurants before others who have been waiting, free drinks at bars, all sorts of odd little unexpected perks, including my own lush, private suite at Cedars Sinai when I was admitted for kidney stone surgery earlier in the summer. I know it’s all bullshit, and I feel a little guilty about it at times, particularly since I’m really only an adjunct, but I still take those free drinks. And now, if being the brother of a celebrity means Mike is going to get more attention paid to him, then I’m grateful for it. I demand that Patrick, who has just begun what would turn out to be a four-year stint on “Ellen,” remove his baseball cap while we’re in Mike’s room, hoping the doctors will recognize him. Double the celebrity, double the attention? I hope so. Or at the very least, double the tolerance for Mike’s irritating card-game.
Patrick and I return to Los Angeles a few days later, and a few days after that Mike comes home to begin chemo and radiation treatments. He has no health insurance, so Julia organizes a benefit screening of “It’s Pat” to help defray some of the costs. Mike is an extra in a party scene in the film, and already I notice the difference between the Mike who was filmed a year before and the Mike sitting next to me in the theater. He’s only been back in town for a couple of weeks and he’s already lost a considerable amount of weight, which he is happy about, but his hair has also begun to fall out, which he is not happy about at all. The photos we take together at the event show him dressed in a sports coat and dress shirt and wearing a baseball cap.
Unlike me, Mike’s appearance has never conveyed any foolish preoccupation with vanity, he’s always projected an unconcerned affability that is usually associated more with straight men. In fact, people are usually taken aback when they find out that Mike is gay. He doesn’t hide it, he isn’t closeted, it just isn’t the most obvious part of his often bigger-than-life presentation. Still, I know he does care about his appearance, and the hair loss bothers him until he comes up with a solution. He shaves his head and adopts a pseudo-goth look, trading in his usual baseball shirts and baggy shorts for jeans, rocker t-shirts and leather jacket. His normally pudgy face has new angles suddenly, and I think that for this moment in time he is actually happier with his appearance than he’s ever been. His lack of eyebrows is still bothersome to him, and at one point I convince him to let me try to draw some on with an eyebrow pencil, but it looks ridiculous and the effort is abandoned.
Mike’s treatments leave him incredibly weak, and by October he has moved into Julia’s home in the Larchmont District. He keeps his converted garage apartment on Sierra Bonita in the Fairfax neighborhood, even though this will require Julia to pay the rent on it for him. But he demands this, because being Mike, he’s not comfortable not having a place to retreat to in case he feels a sudden need for solitude. Mike loves his family, but he’s always valued his privacy. As a child, he once installed both a deadbolt and a doorbell on his bedroom door, something his mother once told me and I found absolutely hilarious. I admire Julia for stepping up to the plate and putting her life on hold to care for her brother, who, to put it mildly, can be trying. At one point, Julia makes a business trip back to New York, and while she is gone Mike heats her swimming pool to what I jokingly call “second mortgage” setting, and every night that she is gone great fluffy billows of steam waft out of her backyard and over the neighbor’s fence. He knows she’ll be furious when she gets her gas bill, but, lying on a blue pool raft drinking a beer at midnight…in October, he simply says, “What is she gonna do to me? I’ve already got cancer.”
For the most part, Mike deals with the hand he’s been dealt bravely and with his trademark black humor. When he’s up to it, we go shopping at the Beverly Center, and when he asks the clerk at Nordstrom if the store offers a cancer discount, I can only shake my head and smile. The clerk’s spluttering response is priceless, and Mike enjoys it so much the question becomes part of his standard routine every time he has to pay for something. If the clerk says no, Mike parries back with, “It’s stage FOUR cancer. I’m a stage away from being dead. Maybe you could check with your manager.”
When I’m available to take him to UCLA for his chemo treatments, he insists on stopping at El Coyote for margaritas on the way home. This doesn’t seem wise to me, and I hate the parental tone in my voice when I suggest we take a pass. He angrily insists, and we eat chips and salsa and drink margaritas until we’re shitfaced. He usually has several hours before the waves of nausea hit, and he spends those nights on his knees on the mission tile floor of Julia’s guest bathroom. I know he’s sick, yet he still seems indestructible, somehow, even with the weight loss and the nausea and the irritating thrush he’s developed in his mouth and throat. His humor, his personality is still so manifest that it is able to dull my worries a bit, most of the time.
Six months in, the Spielberg job is also taking up much of my time, and this holocaust project has turned out to be much more complex than a simple documentary. We’re in the midst of opening offices all over the world, training interviewers in multiple languages, translating documents, hiring camera crews, and the days are much longer than they’d been at my 9 to 5 corporate job at ABC. I love the work, however, and it keeps me distracted from Mike’s situation. Unfortunately, it is also keeping me distracted from my relationship with Patrick, and I sense a growing emotional distance between us during those times that we actually do manage to spend together. There is just too much to think about, and in my chaotic mind holocaust survivors and cancer patients are accorded top priority.
Christmas time rolls around, and because my parents are still in the middle of a messy divorce, I opt to stay in Los Angeles, alone. I don’t know Patrick’s family very well at this point, and frankly, don’t feel the desire to be around a functional, intact domestic unit. Mike is flying home to spend the holiday with his family in Spokane, and around two o’clock in the afternoon on Christmas Eve, not long after Patrick has departed for Joshua Tree, a yellow cab pulls up in front of our little Silver Lake house.
Through the front window, I see Mike get out of the backseat, and I open the front door.
He has made an extensive detour on the way to the airport to wish me a merry Christmas and to give me a gift, a small white envelope. I feel guilty because I haven’t bought a gift for him, though I make it clear to him I haven’t bought gifts for anyone this shitty holiday season.
He’s running late, so he can’t come in, but we hug each other, and as always I’m grateful for it. Hugs from Mike mean a lot to me, because he has never been very physically demonstrative with anyone.
After he’s gone, I open the envelope and pull out a note that says “Thanks for being such a great friend. Have a Merry Christmas.” There is a P.S.: “These should help.” At the bottom of the envelope are four Dilaudid tablets.
The sole benefit of Mike’s cancer has been the sheer quantities of painkillers he’s been provided, more than he actually needs at this point, I’m pretty sure. He was thrilled to be prescribed Marinol, a pill version of marijuana, but after trying it we agree that it can’t hold a candle to smoking the real stuff (which we do, often, from his leaky red plastic bong). Soon, Mike realizes that as a stage four cancer patient, his doctors will provide him with pretty much any pain medication he requests, and over the past couple of months, when Mike is up to it, and I’m not working, we’ve been getting messed up on morphine, Demerol, and now this amazing Dilaudid.
I consider taking one of the pills, but decide to save them for tomorrow, already feeling an advance wave of depression creeping over me. I’m pretty sure tomorrow is going to suck. I’m already feeling sorry for myself, what with my being alone (even if it’s by choice,) my cancer-ridden best friend, and my suddenly demented parents and their soap opera crazy bullshit.
I sleep in on Christmas morning, and after lunch I pop two of the tablets. Soon, I am floating on a hazy, happy cloud. I put on an Andrews Sisters Christmas CD and sit cross-legged on the living room floor playing Sonic the Hedgehog for hours. It turns out to be one of my favorite Christmases ever, courtesy of Mike Sweeney.
Upon returning to LA after the holidays, Mike takes a sudden turn for the worse. Now, he is not just thin, but skeletal. The yeast in his throat, a result of the chemo weakening his immune system, makes speaking difficult. He is over-medicating himself, so it’s often hard to tell if it’s the disease that is causing the stupor or if it’s the drugs, which are now being administered intravenously through a port that’s been put in his chest. Then, suddenly, everything goes from bad to really, really bad. Julia is diagnosed with cervical cancer, and must undergo a radical hysterectomy. The absolute unfairness of this, the sheer cruelty of the universe, makes everything seem, suddenly, even more surreal than it had already been. Mike, voice slurred, takes to answering the phone at her house by saying, “Hello, house of cancer, how may I help you?”
Julia’s parents move to Julia’s guestroom to help take care of both their kids. I feel terrible for them, and try to assist as much as possible, as do all of Mike and Julia’s friends. At one point, Mike becomes so frustrated by this sudden influx of the family – which he loves dearly, but that he’s spent his life trying to individuate himself from – that he insists on moving back into his apartment on Sierra Bonita. It’s a bad idea, but Mike, as always, is inflexible.
Cheri, who has left her music business job at A&M and is now pursuing an acting career (she is still six months away from landing “Saturday Night Live”) is temping, so when she’s not working she’s taking care of Mike. I spend as many nights on his couch as I can, and the bond the three of us formed in Hawaii grows even deeper. One night, Mike, in a near stupor, is sitting in the chair in his small living room. Cheri is standing behind him, gently rubbing his shoulders. Mike begins to cough, then to choke, a terrifying rasping rattling sound. Suddenly, a great wad of mucous frees itself from his throat, and lands on Cheri’s right hand. Mike, so far gone, is oblivious. I almost gag at the sight, but Cheri betrays no reaction to the sticky mess on her hand and continues to stroke Mike’s shoulders until the coughing has subsided. Only then does she give him a kiss on the top of his head and move to the kitchen to wash the gunk from her hand. I’ve liked Cheri from the moment we’ve met, but this small act of kindness to my friend, her refusal to cause him any possible embarrassment – even in the state he’s in – endears her to me further. Of course, being naturally hilarious – which Mike and I have long known, and the world will soon discover – she still manages to get Mike to crack a drugged-out smile several times that evening, despite his discomfort.
This is the last night we all spend in Mike’s apartment together. The next day, he is back in the hospital. He slips away slowly, so slowly that it is almost impossible to detect the line between drugged consciousness and coma. It comes as a surprise to me when his nurse tells me this, and when she tells me he probably won’t wake up again, I don’t know what to feel. I don’t want to lose him, but I don’t want him suffering. I climb into his bed and spend the night sleeping next to him, the sickly sweet smell of the yeast in his mouth and throat hovering in the air around my head.
Mike’s family doesn’t come to visit often now, with the exception of his younger brother Jim, who has always seemed to worship his big brother. It’s not because they don’t care, because they do – intensely – but because the Sweeney’s are now in triage mode, horrified and stunned by the imminent loss of one child and brother and focusing their energies on saving another child and sister. I can’t even bring myself to think about what they must be going through.
It’s late March, and Cheri and I are sitting at Mike’s bedside. Though deep in coma, his face bears an expression of concern that is disconcerting to me, and causes me to whisper repeatedly in his ear, “it’s okay, Mike.” Sometimes, his lips will move, and we convince ourselves that he can still hear us. We tell him funny stories, we play music for him on a portable CD player. The Breeders, Dionne Warwick, and his most recent favorite, The Crash Test Dummies. When we begin reminiscing about Hawaii, I get an idea. I drive to a record store in Westwood and buy a nature CD of ocean wave sounds. We play the sounds of the surf, extend his arm so it’s dangling off the bed, and place his hand in a small plastic tub of warm water on the adjacent chair. We then grab onto opposite corners of his mattress and attempt to replicate the rolling motions of the ocean. We talk about our trip to the nude beach, that day he loved so much, the day he floated naked on the inflatable raft in the warm waters of Little Makena Beach while Cheri and I huddled on the shore both fully dressed and totally embarrassed. Perhaps it’s only because we want to see it, but his face seems to relax – not quite a smile – but the strange, agitated look has definitely subsided a bit.
The next day, I talk to one of his nurses and she tells me that Mike’s problem is that while his body has been shutting down, he still has the heart of a 31-year-old, and it is refusing to stop beating. I think it’s more than that. I think it’s because Mike, who has never done anything he didn’t want to do, has never accepted the fact that he is dying. For all the time we’ve spent together, we’ve never discussed it, and now I am ashamed of myself for not having had the courage to broach the subject, even when it had become clear to everyone that the cancer was winning. I explain to the nurse what my suspicions are, and I half expect her to laugh at my theory. Instead, she stands next to mike and starts talking to him.
“Mike, I want to you picture yourself on a trapeze, swinging through the air. Back and forth. You have to let go. Just let go and trust that the next trapeze with be there. Let go, sweetie.”
She continues to whisper that to him for a few minutes while I stand there holding his hand. It is less than an hour later when I notice that the pauses in between his breaths are growing longer and longer. I find the nurse and let her know, and she comes in and examines him. “It’ll be soon,” she says.
I panic, because Mike’s brother Jim had arrived earlier and I told him there had been no real change in Mike’s condition, so he had decided to head down to the cafeteria before settling in for his visit. I’m freaking out, asking the nurse to please page Jim Sweeney, when our friend Mary Jo walks in the door. “He’s going,” I almost shriek. “Stay with him, I have to find Jim!”
I finally locate him exiting the elevator on Mike’s floor, and we hurry back to the bedside. I call Cheri at Disney, where she is temping today, and tell her to get here as soon as possible.
The three of us line Mike’s bedside, holding his hands, his feet, silent, as his breathing slows, then seems to stop. We look at each other. Is it over? Another ragged breath answers the question. It goes on for almost fifteen minutes before he slips away, and I swear to god, this God I swear I don’t believe in, that I can feel his soul leaving his body. The nurse checks his vitals, and confirms that he is gone.
I look at the clock on his bedside table, and the digital numbers read 3:33.
Three thirty three.
3:33 PM is the time on my birth certificate, and 3:33 PM will be the time on the death certificate of one of the few truly close friends I have ever had. I bend over, tears dripping from my cheeks, and place a kiss on his already-cooling forehead. “I love you,” I try to whisper, but the “you” ends in a ragged gasp as my throat clenches tight.
Cheri arrives about ten minutes later, and when she discovers Mike has already passed, she lets out a low keening moan, and I move to put my arms around her. We stand there holding each other for a long time, until our friend is covered with a sheet and wheeled from the room. After a few phone calls are made, those of us present hug and console each other for a bit, and finally Cheri follows me in her car back to the little cottage in Silver Lake. There, we lay in silence, holding hands, on top of the comforter in my bed. Soon, the sunlight begins to drain from the room, and we fall asleep.