Thursday, January 26, 2012
(Right after I finish the last radiation treatment, I have an appointment to see the radiologist who has overseen the process. He’s the guy who shattered my dream of having heroically weathered the long, lie-there-stock-still sessions with only a small dose of Valium by telling me that it wasn’t “that small.” But he is a pleasant and eager young man, obviously a precision nut, and who else but a precision nut would you want aiming 96 Gys–http://en.wikipedia.org/wiki/Gray_(unit)–of radiation just below your heart?)
DOCTOR: You did very well.
ME: Thanks again. I feel like I should get a diploma.
DOCTOR: Not a bad idea–at least in cases like this!
ME: Cases like this?
DOCTOR: Where the outlook is more hopeful.
ME: Can’t hear that often enough. Yes, there was a guy in the locker room who seemed pretty grim.
DOCTOR: We can do more everyone these days, but for all of us it’s a matter of time.
ME: Right. You just don’t want to hear the clock actually ticking.
ME: So I’m seeing you four weeks from now–I already have the appointment.
ME: But the side effects usually start about two weeks after the end of the treatment.
ME: Very clever –you see me when they’ve already begun to subside, with any luck.
DOCTOR: Exactly. Unless something severe happens, in which case you should call.
DOCTOR: If you’re pretty fatigued and short of breath, we figure you don’t necessarily want to be running over here to be told that you’re pretty fatigued and short of breath.
ME (pleased to hear this note of humor): Right. Why does it take two weeks to start?
DOCTOR: Because there’s a delayed reaction to the treatment.
ME: Right. Why is the reaction delayed?
DOCTOR: Because it takes time for the side effects to become apparent.
ME: OK, but why does it take time?
DOCTOR: Well, your body doesn’t react to the radiation in a way that you can notice for a little while.
ME: OK, but why? I mean, if I burn myself or break my leg, I feel it right away.
DOCTOR: But in the case of radiation, the reactions take a longer time.
(I give up. Later I will go home and search online and in vain for an explanation of the delay in radiation-treatment side effects. I still don’t know. I imagine that the body somehow has to work to clean up after the treatments and that it starts out vigorously and cheerfully but then gets tired as the cleanup process continues, as one does with any long cleanup job.)
ME: All right, thanks.
DOCTOR: Don’t forget the skin lotion–it’s really important.
ME: I won’t forget.
DOCTOR: Every morning and every evening.
DOCTOR: If we’re lucky, you won’t have any skin reaction, but the problem with that is you might be tempted to stop. Don’t.
ME: I’ll do it for the rest of my life, I swear.
DOCTOR: Mild soap, short showers, better not to have baths, probably.
ME: Got it.
DOCTOR: Rest whenever you feel like you need to.
ME: Tell me to avoid writing.
ME: Tell me I should avoid writing.
DOCTOR: At all costs, avoid writing.
ME: Don’t worry–I never have any trouble with that.
Thursday, January 19, 2012
(I go into the treatment room with its black slab for lying on, the body mold that was made for me a couple of months ago and that I’d like to take with me and “install” as an artwork somewhere, and the white Varian Truebeam radiation behemoth–http://singularityhub.com/wp-content/uploads/2010/05/varian-medical-systems-truebeam.jpg–that will be rotating around me and focusing its beams to within one millimeter on the malignant lung nodule it’s aimed at. One of today’s technicians was there during my first and second treatment. He shakes hands with me.)
TECHNICIAN: Well, Mr. Menaker–this is your last one.
ME: Yep–just when I was getting accustomed to it.
ME: I feel like I’m graduating when people say that.
TECH: Well in a way you are. But you’ve done very well.
ME: Well, thanks, though it’s not like I had much choice.
TECH: Oh, some patients have a much harder time, believe me. What graduation music would you like?
ME: You always use Pandora, right?
ME: Well, make a new station for me–type in “Hank Williams.” Nothing I’ve asked for before has really worked out. Especially do-wopp.
TECH: I was here for that. There was a long delay, right?
ME: Right. Something about the machine going on the blink.
TECH: Yeah–the renovation here sometimes reduces the power and the machine’s cooling system doesn’t work well enough and the machine shuts itself down.
ME: Well, that’s comforting.
TECH: That it shuts down?
ME: No, I was being sarcastic about its heating up in the first place. Lucky I didn’t come out toasted. The do-wopp somehow seemed maddening for those twenty minutes of waiting. Maybe because it was the dance music of my youth. Agitating.
TECH: No danger of toasting, I promise. So: Hank Williams.
ME: Yes–it’s country music. A little embarrassing.
TECH: As long as you’re happy.
ME: “Happy” may be going too far. I was happy yesterday, when the Giants beat the Falcons. That’s happiness.
TECH: Great game! That Victor Cruz is something. He seems like he fires up the whole team.
(A young white-coated resident comes into the room. She stops and looks at the identity-check photograph of me on a small screen on the wall in front of the machine . My name is underneath the picture.)
RESIDENT: Oh good–you are Mr. Menaker.
RESIDENT: I’m _______–maybe you remember me. I was just looking for you to tell you that you didn’t qualify for our research project. Remember? We asked your consent to take some extra scans depending on the way you breathed during these treatments.
ME: Oh, yes. I do remember.
RESIDENT: Well, our measurements showed that you didn’t qualify.
ME: So I’m not graduating after all. I have failed!
RESIDENT: On the contrary, you breathed so evenly that we couldn’t have learned anything from further research in your case. You did too well, in a way.
ME: Well, that’s nice, I guess. I had forgotten about signing the consent forms.
RESIDENT: You can forget about the whole thing. Congratulations.
(She shakes my hand and leaves. I feel like I should be wearing a mortarboard. I lie down. The technician and his partner line me up–part of this consists of some cryptic measurement announcements and part of raising the slab or moving it slightly to the left or right and, sometimes, as if from Middle Ages, shifting my body this way or that manually. They retreat. The machine goes into action, swiveling around me as if it were an alien puzzling out the anatomy of an earthling. Hank Williams’ “I’m So Lonesome I Could Die”–perfect!–blasts onto the speaker system. )
ME: Can you turn it down?
TECH (from a mike in his control booth) What?
ME (laughing): Can you turn it down a little?
(The music is turned down to the right level. Despite the song’s unfortunate lyrics, I instantly realize that this is the kind of music I should have chosen from the start–elemental, mournful, tuneful, simple. The high whine of the treatment begins, almost like a member of the band. The next song is Johnny Cash’s “I Walk the Line.” It too, seems just right, in a less direct way. There’s something fitting about the semi-mechanical skiffle rhythm, the movement–like a refocusing–of the melody from one tonic chord to another, the second being the subdominant of the first, the fourth, in which Cash cannot quite hit the lowest note, the dominant of the first. Even the idea of walking the line is appropriate, as I lie on the literal straight and narrow and behave myself. Then there is an ad. Then comes Ralph Stanley singing, a-capella, as a perfect comment on my situation, a gorgeous old gloomy/triumphant modal version of a British folk-hymn, “In the Old Churchyard.” It obviously made the journey across the ocean to Appalachia.
When I go home, after more congratulations from the doctor himself, I try to find the song on YouTube. I don’t find it by Dr. Stanley–as he loves to call himself, owing to his honorary Ph.D. from Lincoln Memorial University, in Harrogate, Tennessee. But I do find this, less eldritch version, by The Watersons. The singer is looking forward to joining those who have gone before in the graveyard of a church. “Why weep for those who will weep no more?” he asks. I got chills from that line at home, as I had lying on the black slab, where I mistakenly attributed it to the coolness of the room. http://www.youtube.com/watch?v=Ow6fG82oZdM.
Oh, wait!: I did just now find it by Dr. Stanley. Imagine hearing this in that situation: http://gloriousgrace.net/churchyard/churchyard.htm)
Tuesday, January 17, 2012
(I go into the small waiting room–I think of it as the radiation greenroom–after putting on the gown for my last treatment. There I find the Thin Man again, waiting for his treatment, and I sit down next to him–there are only the two chairs.)
THIN MAN: We have to stop meeting like this. People will talk.
ME: I’d rather be meeting for a drink.
THIN MAN: Except I don’t drink–remember?
ME: You can have ginger ale.
THIN MAN: I don’t even drink soda–messes with the blood sugar. People will talk even more because we’re both wearing gowns. You know what I mean?
ME (I laugh): Yeah. I told you to wear something different this time. Jeez.
THIN MAN (laughs): Yeah, right–I forgot. If we’re scheduled at the same time, we must be in a different situation to each other.
ME: Mine is a real mouthful–it’s called stereotactic body radiation therapy.
THIN MAN: I don’t know what mine is. I don’t really like to look into these things. I figure they know what they’re doing.
ME: I hope so–it takes long enough lying there.
THIN MAN: I know–right? I think mine is, like, regular radiation. I had surgery before.
ME: Me too–about four years ago. They took out one lobe of my left lung. Now there’s a recurrence–several small nodules in what’s left of that lung.
THIN MAN: You’re lucky.
ME: I’m not feeling very lucky.
THIN MAN: In reference to me, you are. I had surgery before too.
ME: Then we’re in the same boat.
THIN MAN: No. The surgeon–she opened me up and closed me right up again. This was just a few months ago.
ME: Dr. ________, I bet.
THIN MAN: Yeah–that’s the one.
ME: I talked to her too. Why did she close you up?
THIN MAN: Because they found that the cancer had gone beyond the lung–it was in my spine.
ME: That’s really too bad–I’m sorry. They couldn’t tell that from the scans beforehand?
THIN MAN: I guess not. I didn’t ask about that.
ME: But you did have a CT scan and a PET scan before the surgery, I would think.
THIN MAN: I had something like that–yeah.
ME: I guess they can’t see everything with these scans. In fact they told me that.
THIN MAN: I mean, the tumor had, like put down roots in my backbone. It was kind of tangled up.
ME: That sounds rough. I’m sorry.
THIN MAN: But they tell me these treatments should really help.
ME: I hope so.
THIN MAN: You know a lot about your condition and all that–right?
ME: I’ve done a lot of reading online and talking to people–yes.
THIN MAN: I started to do some of that, but then I figured how the fuck is this going to help me? It just scared me more.
(Technician comes in and takes the Thin Man away. I notice for the first time how carefully and slowly the thin man moves, and how frail he looks in the gown draped around him. A minute or two later, another technician comes in to get me.)
Thursday, January 12, 2012
(In the Men’s Dressing Room, I’m putting on OATB, P, MM [Open At The Back, Please, Mr, Menaker] gown in preparation for the last of eight SBRT treatments–http://radonc.ucla.edu/body.cfm?id=61–for the malignant nodules in the lower lobe of my left lung. The upper lobe was removed laparascopically almost four years ago, when a 2.5 centimeter adenocarcinoma was discovered there by a routine chest X-ray. Feeling bold, I put the gown on OATF, because I know I’ll just be taking it off altogether before I lie down on the treatment slab The key I picked up from the receptionist, dangling from a long clear plastic rectangle–the key, not the receptionist–is for locker No. 10. A thin, pale man, furtive-looking man is changing into his gown at locker No. 8, so I have to squeeze past him.)
THIN MAN: I’ll be done here in a minute.
ME: It’s OK–I think I can get to my locker.
THIN MAN: It’s busy here.
ME: Yes, unfortunately–they do a good business here.
THIN MAN: Next generation, I’m betting they’ll be less busy.
ME: I hope so.
THIN MAN: They will be. It’s different with us. So much we didn’t know.
ME: That’s true.
THIN MAN: And they’ll develop a lot of new things, too.
ME: It’s happening right now.
THIN MAN: Is it the lung, for you?
THIN MAN: Me, too. You know, it can happen to anyone. Not only people who smoked.
ME: I know.
THIN MAN: I know a guy who just died at over ninety. Smoked like crazy, one after another, his whole life, died of a stroke.
THIN MAN: Another guy I know, he died of this, but not until he was more than ninety.
ME: I’d take that.
THIN MAN: Me, too. But I didn’t tell you–this guy worked with asbestos his whole life. Every day. He never wore a mask and he smoked a cigar all the time.
THIN MAN: I know–right?
ME: Well, a lot of it is luck, I guess.
THIN MAN: But then he got it when he was like eighty-five.
ME: That’s already a long life. I remember when a doctor asked me when my parents died and I said both in their late eighties, and on this sheet of paper he was writing on he just made two like dash marks–it looked like it indicated that their ages didn’t figure into my evaluation or something.
THIN MAN: Right–makes sense. But anyway, this guy I was talking about? They opened him up and found asbestos all over inside his chest.
THIN MAN: They could fucking peel layers of asbestos away.
ME: Jesus!–that’s awful. Why did they do surgery?
THIN MAN: They couldn’t tell what was going on–this was in his mid-eighties. And it turns out he had very little cancer, just this asbestos, and they kept him alive for another five years.
ME: That’s unbelievable!
THIN MAN: I know–right? You know, there’s only one thing about these treatments I don’t like. I got this arthtritis in my shoulder and it hurts like hell after I’ve been lying there with my arms over my head for twenty minutes or more.
ME: I have the same thing, but it’s much easier if you take an Advil or something before.
THIN MAN: Not me. I don’t take anything.
ME: Why not? It really helps.
MAN: I don’t smoke anymore, I don’t drink, I don’t take any of that stuff.
ME: Well, Advil isn’t going to hurt you.
THIN MAN: I know–that’s what they say. But I like to stay just myself for this fight.
ME: OK, but I’m just saying that it’s so much easier.
THIN MAN: You ever been in combat?
ME: No. But I take it you have.
THIN MAN: You said it.
ME: Where, if I may ask?
(At this point another man comes into the locker room, just to drop off his gown, it seems. Did he change back in public? In any case, the thin man looks over his shoulder suspiciously, nervously.)
THIN MAN: In …. well. You know. I was over in …. I’d rather not say.
(He looks over his shoulder again, and the other man is leaving.)
ME: I can guess, but I understand if you don’t want to say. I’m guessing Vietnam.
THIN MAN: But my point is this: When I had a mission, I never once worried about dying. Never. There were only two things I worried about.
THIN MAN: Accomplishing that mission was the first thing.
ME: (after a few seconds) And the second?
THIN MAN: Getting the fuck out of there, wherever it might be, as fast as I could. (He laughs.)
ME: Sounds like a good strategy. But it also sounds like you were a little worried about getting hurt. (I feel like an idiot, chopping logic with this man. But he laughs again.)
THIN MAN: You’re right there, I guess. I never thought of it that way. Anyway, that’s the way I look at this.
ME: What way?
THIN MAN:Get in, get out, don’t take chances with the rest of my body by taking any of that stuff.
Thursday, January 05, 2012
(Having completed five out of eight image-guided-radiation-therapy treatments for the small lesions in my left lung, I develop a rash on my side, chest, and stomach. This is to be expected–the little image-guided-radiation-therapy booklet they give you actually says, “A red and often itchy skin rash develops in the area exposed to the radiation after the fourth or fifth treatment.” What it should add is “Sometimes the itches involved are so torturous and numerous–yes, you can itch in more than one place at the same time, it turns out; how about nine places?–that sleep becomes impossible. And when the patient does sleep, he may dream of metal charcoal-grill brushes scouring his chest or F-18-scale mosquitoes feasting on his blood.” It also really does say that if the itching becomes serious to call the “hotline” and talk to a nurse or the radiologist on call. I call, on Monday, January 2nd, a holiday)
OPERATOR: Hello — ______ hotline.
ME: My name is Robert Menaker and I’m calling to get some advice about how to treat a bad skin rash that I have after five radiation sessions. [I use my middle name, Daniel, professionally.]
OPERATOR: Your name, please?
ME: Robert Menaker.
OPERATOR: Can you spell that for me?
ME (ever the adolescent, tempted to say “t-h-a-t”): M-e-n-a-k-e-r.
OPERATOR: Sorry–I didn’t catch that.
OPERATOR (accompanied by glacial keyboard clicking): M-a-n–
OPERATOR (clicking): M-e-n-a-what?
OPERATOR (clicking with more confidence): M-e-n-a-a-k-e-r.
ME: No–just one “a”. M-e-n-a-k-e-r.
OPERATOR: First name?
ME: Robert–spelled the usual way.
OPERATOR: Spelled how?
ME: You know–just Robert.
OPERATOR: Robert Menaker.
OPERATOR: Date of birth?
ME: Nine seventeen nineteen forty-one.
OPERATOR (clicking): oh-nine….seven-…..teen ….. one nine four … one.
OPERATOR: OK–here you are.
OPERATOR: Can you hold for a minute?
(Classical hold music begins–a violin scurrying around in front of a full orchestra and looking for a place to rest)
OPERATOR: I’m sorry for the delay. Is this Robert?
ME: Yes, Robert Menaker.
OPERATOR: OK–I’ve got you on the screen.
OPERATOR: Your doctor’s name?
ME: Hamnar. [made up]
OPERATOR: Can you spell that for me?
OPERATOR (clicking slowly): H-a-m-m–
ME: No, H-a-m-N-a-r.
OPERATOR: Oh, yes–Dr. Hamnar. Another patient of his called today.
OPERATOR: What are you calling in reference to?
ME: This rash I mentioned.
OPERATOR: You have a skin rash.
ME: Yes. It’s keeping me from sleeping.
OPERATOR: Oh, that’s awful. I hate that. My husband has eczema.
ME: Yeah, I hate it too, as it turns out. So I was wondering if I could talk to someone about it–maybe see if it’s OK to use cortisone–you know.
OPERATOR: Sleep is so important!
OPERATOR: Well, Dr. Hamnar isn’t available….
ME: Well, I know that. But I was given this number in case a problem came up. Now, this isn’t an emergency–
OPERATOR: Listen, if you can’t sleep, I consider that serious.
ME: To be honest, I do too, and that’s why I’m calling.
OPERATOR: Let me connect you to the radiologist on call.
ME: Permission granted.
ME: Nothing. Thank you very much for your help.
OPERATOR: Good luck. If they recommend an oatmeal bath, make sure the water is tepid, not hot. That’s very important.
Monday, January 02, 2012
(I am meeting with the radiation oncologist after my fifth–of-eight SBRTs. Stereotactic body radiation treatments. Here is the machine they
use–http://bit.ly/vLsIrQ— although “machine” seems inadequate to the hulking but sleek white, rotating behemoth you lie beneath. Or semi-within. They offer you music while you lie stock still for 45-60 minutes. I have tried Bach–too agitated. Mozart–I don’t know; the volume wasn’t high enough. Beethoven–too stormy. I think, if it’s Pandora they’re using, as it seems to be, I’ll try do-wopp next time.)
DOCTOR: How is it going?
ME: Well, fine, I guess. You tell me.
DOCTOR: Any side effects?
ME: Not yet–you said they would be noticeable a couple of weeks after the end of the treatments.
DOCTOR: Right. But sometimes people react more quickly.
ME: Well, I am itching on the left side of my chest and side, quite a bit, but it doesn’t seem major.
DOCTOR: That’s not unusual. Are you using a moisturizer?
ME: Yes–one of the ones mentioned in the little image-guided-radiation-therapy pamphlet the nurse gave me. There’s this blank that she or someone else could fill in, in the side-effects section, and it said, in handwriting, “chest-wall pain” and “fractured rib.” Something to look forward to.
DOCTOR: I doubt this will happen to you.
ME: And there’s always pneumonitis.
DOCTOR: Again, unlikely, but you never know.
ME: How do you know? You start coughing blood, right?
DOCTOR: No–you feel crummy.
DOCTOR: You feel crummy and short of breath. But don’t worry–again, it’s unlikely, and we can treat it.
ME: Well, good. In the meantime, is it OK for me to do my exercises and running, if I feel up to it? I should have asked before.
DOCTOR: It’s OK–just don’t overdo it.
ME: “Listen to your body!”
ME: Well, that has gotten me into trouble in the past.
DOCTOR (smiles in a neutral fashion)
ME: Everything in moderation.
ME: Except moderation.
DOCTOR (actually laughs)
ME: I stole that, I have to admit.
ME: A teacher at the George School. It’s this boarding school in Bucks County where I taught for a year and the headmaster was this very temperate Quaker and when someone on the faculty got exercised about something, he said, “Now, now–everything in moderation.” And the teacher muttered, “Yeah, except moderation.”
DOCTOR: Well, the technicians say you’re an ideal patient.
DOCTOR: You stay very still.
ME: Well, I’m glad to hear it. But I have to admit that the two milligrams of Valium don’t hurt. It’s a very small dose but it helps.
DOCTOR (somewhat rudely in my opinion, but, then, it’s his profession, not mine): No it’s not.
ME: What’s not what?
DOCTOR: Two milligrams of Valium isn’t a small dose.
ME (as in a sandbox exchange): Is too.
DOCTOR: No, it really isn’t.
ME: It’s practically homeopathic.
DOCTOR: That much Valium would put me to sleep. Why do you think they score it down the middle? So you can make it into one milligram, which is a fairly small dose.
ME (both of us still in the sandbox, apparently): Correspondingly, I wonder why they make it in 5 and 10-milligram pills? I guess for NBA players and elephants, or something.
DOCTOR: (smiles in a humoring sort of way)
ME: Well, thanks for shattering my heroic illusions.
DOCTOR: It doesn’t matter–the important thing is that you’re handling it all very well. What kind of moisturizer are you using?
ME: One of those kinds in the pamphlet.
DOCTOR (pen poised): Right. Good. But do you remember which kind?
ME: Eucerin–a very small amount, almost homeopathic.
DOCTOR (evidently writing “Eucerin” down): It doesn’t matter which one, but I like to make a note anyway.