* * *
After Leviathan
“Look,” Jex says earnestly to Joe, looking him right in the eye. “Dr. Cohen is one of the best cancer doctors in the world and Cedars-Sinai has the best cancer resources in the world. Like I said. If Dr. Cohen says his treatment is the only realistic treatment, I have no doubt he is right.”
“Yeah,” Joe says with resignation. “I know that.”
Jex continues. “There is definitely nothing I’ve seen in your file to suggest some other remedy that can help you. There are all kinds of alternative treatments and things, maybe they work, I don’t really know. I can’t really give you any direction on that. But I believe in science and Dr. Cohen is a true scientist. What he says makes sense.” There is empathy in Jex’s tone, but also an air of certainty.
Sam sighs and grunts and for a moment it seems that maybe he is about to engage in another outburst. But he keeps his cool and just looks down at his feet. Joe shrugs. “It didn’t make sense until you spelled it out.” He pauses. “But you’re not telling us anything we haven’t already heard, Dr. Jex, so don’t worry about it,” he says with a smile that seems somewhere between forced and natural. “You just say it in a way that we understand. And we appreciate it.”
“True dat,” says one of the two other guys.
“So, that’s that. We get it. Thanks a lot for coming,” Joe says, his voice firm, a touch of despair inside the resignation.
“Well,” Jex says, “hold on maybe just a minute. Just because treatment is unlikely to be successful, doesn’t mean you have to fritter your last days away in a hospital bed, moping and doping.”
Joe’s eyebrows raise for the first time. Sam’s head is up and he is suddenly focused on Jex like a laser beam. “What do you mean,” Sam asks. “I thought you said that treatment was the only option, and it wasn’t going to work anyways.”
“No,” Jex counters. “I said the treatment Dr. Cohen put together is the only treatment, not the only option. Did Dr. Cohen talk to you at all about palliative care?”
Joe curls up his brow. “What kind of care?”
“Look,” Jex explains. “You said earlier that the cancer is making you sick in all these kinds of ways. That’s not literally true. When you go through chemotherapy treatment, it kills off white blood cells in your body – including these cells called neutrophils. They protect your body normally but when the chemo kicks in, they are seriously reduced so you’re not protected as much . It’s called neutropenia. And so you get sick the way normal people do – the flu, things like that – but you get it a lot easier and you get it a lot worse.”
“So,” Sam says with disgust. “It’s the treatment that is getting him sick, not the cancer.”
“It’s a trade-off,” Jex clarifies. “If the chemo works, the cancer goes away, goes into remission. If it doesn’t, at least you tried.”
“So wait a second,” Joe stops her. “So what if I don’t get anymore treatment? Do these cells grow back?”
“Yeah,” Jex confirms. “They should. Neutropenia reverses itself pretty quickly. In other words, the number of white blood cells goes up again. See, there’s a difference between symptoms and side effects. You know, symptoms are things that show you things about the disease – like pain in your stomach can indicate a tumor in your abdomen. That’s a symptom. But things like losing your hair, reduced white blood cells... those are side effects. A lot of that goes away after you stop treatment for a couple weeks. So, like the nausea or diarrhea I saw on your chart. That stuff would go away if you stopped doing treatment.”
“Heh-heh, diarrhea,” murmurs one of the two other guys. Jex ignores him. “And I saw you’re anemic now. You had to get two blood transfusions, right?”
Joe groans just a little under his breath. “Yeah,” he says. There is a pause for a moment, and then Joe continues. “Hey, this tingling in my fingers, is that a symptom or a side effect?”
“Yeah,” Jex nods. “That’s called peripheral neuropathy. It can be mild or it can be pretty bad.
Joes seems pained as he responds. “It’s bad. It makes it hard to play guitar. That’s the worst part. By far.”
Jex nods again. “Yeah, that’s a side effect of the treatment. It’s not a symptom of the cancer itself. It should theoretically go away within a few weeks if treatment were to stop.”
“No shit,” Joe asks incredulously.
“Well, no guarantees, but I’ve read a lot of articles on that. Peripheral neuropathy… that tingling, it should recede in just a bit if treatment stopped.”
There is a sudden hint of glow in Joe’s eyes glow for the first time since Jex walked into the room. “That’s rad. I thought that was permanent.”
“No,” Jex says, shaking her head. “It shouldn’t be at all.”
Joe takes a moment and takes that information in. The room is quiet. Sam looks out the window. He sees a flock of blackbirds fly by. “So, wait a second,” Joe says after a moment, breaking the silence. “If I stop treatment altogether, I’ll feel better. But if I do this treatment that Dr. Cohen wants me to do, I’ll keep feeling sick, catching a bunch of diseases. Puking and shitting everywhere?”
Jex nods slowly. “At least until after the treatment is complete. If you got those side-effects the last time, it’s likely you’ll get them this time, too. They can treat some of them, like with anti-nausea pills, but yeah, you’ll probably get sick.”
Sam chimes in. “and if we stop doing anything, he’ll be fine?”
“No,” Jex quickly responds. “He won’t be fine at all. He has a very advanced form of sarcoma. Like Dr. Cohen said, if he doesn’t begin a treatment, it will spread more and it will quickly be fatal.” She lets that sink in for a moment, her words hanging in the air like a jury verdict. “But he will feel better, for awhile at least. He would probably have to take some meds to fight off some symptoms, but for a little while, at least, he’ll feel better.”
“What’s a little while?” Joe asks, putting the obvious question out there. Jex just shakes her head.
“I really can’t say. It typically ranges to a few months before the cancer itself starts to make you really sick in a way that the symptoms can’t be treated any more. But sometimes, a lot less or a little more.”
There is another pause before Sam asks, “could he play gigs?”
Jex shrugs. “I don’t see why not, but that’s something Dr. Cohen would have to talk to you about.”
“Well,” Joe says firmly. “I want to talk about it. Talk about it at least. Shit man, I don’t want to stew away my last days in this fucking bed.”
Sam quickly agrees. “Let’s at least talk about it. Maybe we could do a final tour.” He pauses and then raises both hands in devil forks. “The Sarcoma Diarrhea tour,” he announces proudly, sticking his tongue out. The two other guys snicker their Beavis and Butthead snicker. Jex holds her hands out.
“Well, hold on a second. How about if I see if I can go find Dr. Cohen and chat with him first. He can come in and talk to you about it. And, who knows, maybe I’m a complete idiot and got your hopes up over nothing.” She scrunches her nose up. “So, you know, don’t get your hopes up.”
“We won’t,” Sam and Joe both say in unison, hope in their voices. They laugh at each other. “But we trust you, Dr. Jex!” Joe proclaims.
“It’s just Jex,” she corrects again. “And I’m not so sure I’m worth your trust. I’ve just read a bunch of books. Let me go see if I can talk to Dr. Cohen.”
“Go girl,” Sam urged, a smile on his face. As Jex leaves the room to find Dr. Cohen, she hears an excited Sam whisper to the rest of his band. “Sarcoma diarrhea!” There is laughter as the door shuts behind Jex. She can’t help but smile a little bit.
* * *
It is twenty minutes later. Jex has finally tracked down Dr. Cohen. “Well, Ms. Blackwell,” Dr. Cohen greets her in his Harley Street British accent, a slight bemusement in his tone. “It is delightful to see you in our hallways, as always. What sor
t of mischief are you finding yourself in these days?”
“Hi Dr. Cohen,” Jex responds brightly. “I trust you are doing well,” somehow painting her words with the precise degree of bemusement with which Dr. Cohen greeted her. He smiles in recognition of this fact. “Quite well, Ms. Blackwell. I trust you are the same.”
“Quite,” she responds with her own smile.
“Have you decided which university you will be attending?”
She shrugs, suddenly uncomfortable. “Well, I haven’t even decided whether I will be attending college.”
Dr. Cohen’s smile turns coy. “Tough life, indeed, with the range of choices you have. A perfect SAT score is quite a nice thing to have in your back pocket, no?”
Jex sighs and shrugs again. “It’s never bought me a meal.”
“Someday soon it will, trust me on that.”
She has no response to that and looks away, out into nowhere. Sensing, perhaps, that he is pushing too far, Dr. Cohen pivots away from the clear tenderness of the subject. “So, Ms. Blackwell. Are you in our hospital saying hello to old friends, or is there something we can do for you?”
Jex immediately brightens, grateful for the reprieve from having to actually talk about herself. “Actually, Doctor, yes. I do have a couple of questions for you.”
Dr. Cohen chuckles. “Why does this not surprise me?”
“Yeah,” Jex says, kind of looking to the side and smiling. “Just a couple quick questions. So, I have some friends whose friend is Joseph Foster, and I was just speaking to them about what he’s going through and what, maybe, some of what his options are.”
Dr. Cohen’s face quickly turns dark. “Some of what his options are? And what exactly might his options be?”
“Well, I looked through his charts, and I see he has been diagnosed a PNET, and I know that is super rare but has a decent survival rate in some circumstances, but Joe’s …”
“Ms. Blackwell,” Dr. Cohen abruptly interrupts. “You are fully aware, I am certain, that I cannot discuss a patient’s ongoing treatment…”
“Not without his express consent,” Jex just as abruptly interrupts. “I understand that. I am sure he would give that to you, but I am not asking you to discuss it with me right now. I just want you to listen to me. That should be OK under any reasonable interpretation of the AMA’s ethics guidelines.”
Dr. Cohen studies Jex’s face up and down. “You,” he says with a note of snarkiness in his voice, “have been spending entirely too much time with Dr. Stephens, haven’t you. You are both two clicks too clever for your own good.”
“No, it’s just that I read of lot of books. And I’m right, aren’t I?”
Dr. Cohen sighs just a little bit. “Please proceed, Ms. Blackwell. If you must.”
“I must,” she responds cheerfully but stubbornly. “So, he has PNET and a category of T3 N1 M1b. That’s pretty bad in and of itself. PNET is super rare, which is probably how a guy like Joe managed to get himself treated at Cedars-Sinai. Too unique a research opportunity for a hospital to pass up, right?”
Dr. Cohen glares at her but says nothing.
“Anyways,” she continues, not waiting to see if an awkward silence might melt into a response. “It originated in the abdomen but like all determined soft tissue sarcoma, it spread quickly. His latest lab results show it spread well past the sentinel lymph node, got itself into other regional lymph nodes and is now attacking the liver and lungs. At that stage, both you and I know there is nothing really left to be done. Joe doesn’t say it straight out, but he knows it, too.”
“What, Ms. Blackwell, is your point, exactly?”
“Well, Joe is lead guitarist in a band, they’re called Water of Chaos. They’re like totally metal and say they’re punk but really they’re just metal. I checked them out on bandcamp. Anyways, their music is not really my cup of tea, but they all seem like decent guys. Joe’s parents are both dead and he doesn’t have any other family. The band is kind of it for him.”
Dr. Cohen lets out something between a sigh and a grimace, but doesn’t otherwise respond.
“Anyways, so I’m not sure how much time he has, I’m sure you have a decent prediction. But I bet it’s not too long, even with that treatment. None of them want to see him go through that procedure, get sick again. He can’t even really play guitar right now because of the peripheral neuropathy. All they are dreaming about is a last tour. One more time to get together on a stage and play to an audience. It seems to me that with the way Joe’s cancer has spread, and where it has spread to, and how quickly it spread, maybe it makes sense to help him do that, and, maybe, I don’t know, worry less about treatments that almost certainly won’t work.”
“You are suggesting,” Dr. Cohen says softly, somewhere between a sneer and a sigh, “palliation as a treatment path for a man as young as Mr. Foster? You don’t think he should have a little bit of hope that the current treatment we have proposed might actually work?”
“Look, Dr. Cohen, I know it would be awesome if he was treated with the state-of-the-art processes Cedars-Sinai, but medicine is about reality, not Vegas-odd of success, right? I’ve read Huxtable. I’ve read Jeffrey. Shouldn’t he at least have the choice to do that, if he wants? He’s an adult. He’s competent, and so he’s autonomous, right? In any event, he’s pretty smart and level-headed.” She pauses for a moment. “Even for a waxhead-metalhead.”
Dr. Cohen strokes his chin and his sneer evolves slowly into a slight sort of smile that wobbles between amusement and bemusement. “You really have been spending too much time with Dr. Stephens.”
Jex shrugs. “You’re the doctor, but I spoke for a while to all those guys. They get it. I mean, you were talking about medical ethics just a minute ago. Didn’t Huijer and Van Leeuwen say that a patient’s treatment has to be considered in the context of the patient himself, and not just clinical evidence. He wants to spend his last time with his band, playing music. Maybe it’s time to discuss palliative care. “
“Is it, indeed?” he queries rhetorically, his crooked smirk struggling not to show itself.
“Well, maybe. I mean, Cicely Saunders said it’s just as important to focus on the quality of the remaining life and a good death, not just solely on clinical stuff. There’s nothing in his chart to suggest he isn’t competent or autonomous. But, I mean, he’s your patient.”
“Indeed he is. Thank you for recognizing that.”
“Well, there you go.” Jex concludes. “I’ve spoken my mind. If you don’t think it makes sense, you’re the doctor.”
“Yes,” Dr. Cohen agrees, looking pensively away from her. “Indeed I am.”
A long pause passes. Dr. Cohen says nothing else and Jex doesn’t try to interfere with his thoughts. He pulls a pen out of his pocket and plays with the tip for a moment. He looks back out into nowhere. Finally, he breaks the silence.
“Very well, Ms. Blackwell.” He turns without further comment. He walks towards Joe’s room without having to look at his notes to identify where it is. Jex hesitates for just a moment and then turns and follows Dr. Cohen. She gets to the door just before it closes and she slinkers in without touching the door, allowing it to shut naturally. Joe and Sam and the two other guys were talking loudly in a semi-circle around Joe’s bed but stop instantly when Dr. Cohen walks in.
“So,” Dr. Cohen states, instantly in control of the room. “I understand you have all been speaking to my friend, Ms. Blackwell, correct?”
We know Dr. Jex, for sure,” Joe affirms.
“Like I said before,” Jex interrupts, almost defensively. “It’s just Jex.”
“Just Jex,” Joe agrees. “Anyways, she’s helped us make a lot of sense of whatever it is you told me,” realizing as soon as he says it that it sounds a lot more snarky than intended. “I mean she just speaks our language. No offense intended.”
Dr. Cohen smiles his gruff smile. “No offense taken. Ms. Blackwell has quite a special way of making herself understood.”
�
��That’s for sure,” Joe agrees.
“In any event, Mr. Foster, I would be quite grateful if you and I could have just a couple of minutes alone, without your … carers and Ms. Blackwell, so we can have a quick discussion about your options. And then, perhaps,” his thin smile grows slightly wider, but just slightly. “And then perhaps we can have a discussion about . . .” his last words dripping with an odd kind of disdain that probably tracks back to childhood, “heavy metal.”
* * *
It is three weeks later on a Tuesday. It is the Whiskey on Sunset and Waters of Chaos is on stage, playing louder than hell and having a hell of a time doing it. There are maybe forty metalheads on the floor and maybe ten or fifteen in the balcony. In the defense of the band, most of the heads are banging. Jex is at stage right, taking in the scene with mild bemusement. As she said to Dr. Cohen, the music is not exactly her style Still, the passion is real on stage and the crowd seems into it, so who was Jex to judge anyways?
The set is lively. Jex is genuinely enjoying Sam playing to the crowd, and Joe shredding his Flying V like there is no tomorrow, inside knowing there might not be too many more tomorrows. The other two guys are the rhythm section and, again, though not Jex’s favorite genre, she can’t help but enjoy the musicianship and the passion.
“OK,” Sam screams into the microphone. “This is our last song of the night. Thank you all for coming tonight, to see us on our Sarcoma Diarrhea tour, whoop!!”
Jex shakes her head but smiles bemusedly at that line.
“I’d like to dedicate this song, this is a new one, to Joe here,” pointing to Joe and his Flying V. “He is the baddest mother fucker out there and his guitar has saved my life. Playing in a band with him is the best experience in my life, and I am grateful everyday for him. Love all your brothers like they are brothers, motherfuckers. And live for today. This one’s called ‘Lucifer is My Fuck Buddy.’ Thank you L.A. Thank you Whiskey. Metal, always,” he concludes, his right hand raised in a fist. The final song begins. It is fast and hard and is played by four men in love with music. It’s not Macedonian punk, thinks Jex, but tonight, on the Whiskey’s tiny stage, it is the best band in the world. For the band, at least. And her.
Jex Blackwell Saves the World Page 15