Thursday, December 29, 2011
(In the men’s dressing room, right outside the treatment areas with their huge, white, sleek machines that go tock when they are about to move their arms and tock-tock after they stop. And chime twice in an electronic-sounding way when the actual rays begin and once when they end. There’s another guy here, also getting dressed after a session under the Rayguns. He’s about my age, solid-looking, bald, glasses, genial.)
ME: It’s always good to get that over with.
GUY: Well, for today, anyway.
ME: Yeah–I have more, too. Lung?
GUY: Yes. There’s this one tiny spot….
ME: I have a few. But also tiny.
GUY: I was being treated up in Connecticut, but they couldn’t seem to get rid of it. They biopsied it and it’s malignant, but it’s not growing at all.
ME: Pretty much the same with me. The small and not-growing part. I had a lobectomy for a 2.5 centimeter adenocarcinoma three and a half years ago, and this recurrence–if that’s what it is–was diagnosed last March.
GUY: Hey! We are twins. I’ve had two lobectomies, and now there’s just this one spot. They don’t have these machines up there in Connecticut, so they sent me down here.
ME: That must be quite a trek for regular treatments.
GUY: They kept on asking me to come down here for the CT scans and I kept asking them why I couldn’t have them done up there–just the scans. They have the equipment for that and can send the images down here electronically.
ME: They can be very proprietary here.
GUY: Well, this was ridiculous. I finally insisted.
ME: And did they give in?
ME: Two lobectomies?
GUY: Yes–I have three-fifths of my original lung capacity left.
ME: And I have four-fifths, for now. Do you feel the difference?
GUY: Well, I mow the lawn and walk around and work out on a treadmill, but yes, I feel the difference. Definitely get short of breath more easily.
ME: Well, I’m not sure I like it when people keep telling me I look well, almost in a disappointed way, like “Can’t you look less well, for God’s sake?” but I have to say you do look very well.
GUY: I feel good, except for the stamina business.
ME: Somehow I relate “You do look very well” to compliments my dog gets when I’m walking him. People say, “What a great-looking dog!” and I say “Thank you,” as if I had something to do with it.
GUY: I don’t get it–the connection.
ME: Neither do I, really. I’d have to think about it.
GUY: But I know what you mean about people’s comments. There’s no formula, I guess–like regular condolences or congratulations or something like that. You have to sympathize with the way they’re awkward sometimes.
ME: Absolutely. You end up reassuring them, a lot of times. I always try to steer the conversation toward more objective subjects, even if they’re related. My favorite is to ask people if they know or can guess why there are three lobes of the right lung and only two of the left.
GUY: The heart needs room! Of course. Well, my heart has plenty of room now, I guess.
Monday, December 26, 2011
(Mercifully, I am fetched into the treatment room just after the dismal exchange with the Dour Man. The place has a huge, pure-white bloated-spider-looking machine with three or four arms, each with a different business end–white rectangle, something that looks like the metal eye of a Transformer, something else, and something else– behind a hard, narrow black table on which the body mold made for me beckons like an alligator’s maw open at 170 degrees. I lie down. The radiotherapists want to put some kind of markers on my stomach to keep track of my breathing. There ensues another struggle with The Gown–finally, I just take it off altogether.)
ME (on first entering): Holy mackerel!
RADIOTHERAPIST (a short, compact black man with a pencil mustache and a faint Cockney accent) : Yeah, my friend–pretty impressive, eh?
ME: I’ll say.
RT: OK–so just lie down there, my young friend.
ME: Get out of here with the “young” stuff.
RT: I’m getting up there myself, you know.
ME: You aren’t even half my age.
RT: I’m catching up fast, sorry to say. Do you want some music? We should have you out of ‘ere in less than an hour.
ME: No, thanks.
RT: First there will be some scans and measurements and maybe some millimeter-size adjustments of the table, and then we’ll do the treatment, when Dr. _____ and the physicists give the OK. The treatment itself takes about ten minutes.
ME (to myself) A new rock band–Dr. _____ an the Physicists. (aloud): All right.
(The process begins. The arms of the machine glide into position over me. They rotate this way and that. One, the eye, comes down toward my chest–or the table is raised up to it–as if it were about to stamp me. But it hovers four or five inches away. This turns out to be–I think–the main Raygun. When they start the actual treatment, I hear a serious whine, like your car when the battery is so low that the engine won’t turn over at all, or like a basso-profundo mosquito. May arm itches. My shoulder itches. The back of me head itches. My elbow is resting against something that over the forty-five minutes goes from feeling like the arm of a minimally upholstered chair to the arm of an un-upholstered granite chair. But it’s not so difficult after all. And then I’m done. The radiotherapists come back into the room. They do this thing, which I’m now used to, of putting their forearm arms up and out, like a kind of girder, for you to hoist yourself up with.)
ME: Thanks. No matter how old you are or aren’t, you look like an athlete. (I never learn, but he really does.) Do you play soccer?
RT: ‘ow did you know?
ME: Well, I did too.
RT: Where, then?
ME: High school and college.
RT: Where in college?
ME: Pennsylvania, a long time ago. But there has always been a lot of soccer in the mid-Atlantic states.
RT: Yes, I know.
ME: In fact, I was captain of my team.
ME: Thanks, but there’s only one trouble
RT: What was that, then?
ME: We were 1 and 10.
RT: That’s all right, then. My team was 4 and 5 last season. Room for improvement.
ME: But respectable. It’s a league?
RT: Yes–Metro Soccer. We have a three-quarter pitch, and there’s no offside. And eight to a team.
ME: You can just linger by the goal?
RT: Yes. And I don’t mind doing that. I’m about to be forty-seven, my friend. I told you I was catching up.
ME: I don’t believe that.
RT: Yes, I am. And if we have anything to do with it, you’ll be nearly one ‘undred when I am your age.
Thursday, December 22, 2011
(My first SBRT treatment is about to take place, finally, after many delays. I get to the place ten minutes ahead of schedule, am told to go to the fourth floor, a familiar haunt by now, and I check in with the receptionist, who talks a mile a minute in a kind of phoneme-stingy way. “Ls nay? “Frs nay?” “Day f br?” I am told to check in with the receptionist in the inner waiting area. I do so, and this receptionist, from Ireland, with short, dark, straight hair, is an old friend. We go through the same routine. She says that Dr. _______ will see me before the treatment. “And that’s good,” she adds, “because it means you won’t have to see him afterward. It will save time” This is one of the few instances in which the institution has indicated any interest in husbanding this commodity on my behalf. But that’s why patients are called “patients,” I suppose. Then she tell me to go back to the outside waiting area, and I feel like an immigrant being shunted to steerage. The inner waiting area is empty and serene, but not for me, evidently. I go back outside and a nurse comes out and talks to a thin man with white high-top sneakers who looks extremely dour. His wife is with him. The nurse is asking him questions, and all I can hear, every now and then, is the word “basketball.” Oh– wait. I just remembered something else from their conversation.)
DOUR MAN: No, I didn’t take them before.
NURSE: Well, they really will help with the pain.,
DOUR MAN: I didn’t take them.
NURSE: I can give three of them to you now, before the treatment, but they would be more effective if you took them at home, an hour before the appointment time.
DOUR MAN: OK.
(I end up in the men’s changing room with Dour Man, waiting to submit to what I now am calling to myself the Ronald Rayguns. Before I sit down next to him, I put The Gown on and then try to use the bathroom and somehow end up with The Gown bunched up here and there and tied under one arm and have to take the whole thing off over my head and start all over again.)
ME (idiotically): I heard something about basketball. Do you play?
DOUR MAN: Yes.
ME (more idiotically): I played in high school.
DOUR MAN: _______
ME (content with the same level of idiocy): Is it a league?
DOUR MAN: No. (Very long, martyred pause.) I just play with some guys at work.
ME: (at the idiocy pinnacle): They do that on “The Good Wife”–all the lawyers. You know?
DOUR MAN: _______
ME: But they do business deals and behind-the-scenes stuff on the court too.
DOUR MAN (even longer pause, and looking straight ahead): We don’t do that. We just play.
Sunday, December 18, 2011
ME: (in a Pain Quotidien on Broadway, a chain of semi-communal-table breakfast-and-lunch restaurants which some call “Everyday Pain”): Oh no–you’re here! I thought we said 3:15. How long have you been here?
FRIEND (looking up, with the most beautiful gray-blue eyes in the world, from her iPad): About a half an hour. I emailed you to say I might be early.
ME: I’m sorry–I guess I didn’t see the email.
FRIEND: It’s OK–it gave me a chance to read this. Look at this: they think they may have found the Higgs boson.
ME: Is that the piece that was in the Times this morning?
ME: I read it too–it’s exciting. Do you understand it all?
FRIEND: Not really.
ME: Do you think they understand it?
ME: The scientists. I don’t think they do. I mean, OK–the Higgs boson will explain why everything has the mass it does. But why is there anything to start with, anyway? We don’t know and never will.
FRIEND : So speaking of subatomic particles, when does the radiation start?
ME: Monday, the 19th. Then the 21st, 23rd, and 27th. Then there’s a second course, but I’m not sure what the interval is, or even if there is one. Anyway, great Christmas, huh?
FRIEND: And what is it, again?
ME: S-B-R-T–stereotactic body radiation therapy. The delay makes me want to call it G-O-D-O-T. But evidently no harm done, as there seems to have been no progression of these nodules. Do you want me to tell you how it works? You have no choice. They “mapped” me last time I was there–I have seven pinpoint tattoos on my chest and side which they use to help them focus exactly on the nodules they’re aiming for. They use two recent CT scans as guides for the focussing. The way I understand it they couldn’t use this kind of radiation treatment for lesions in the lung or the gut until quite recently, like a few years ago. Only tumors in places that aren’t moving all. Like if you had a leg tumor–a legoma–they could use it for that. But not in the gut or the lung, because your insides are always churning around, and of course you breathe, so lesions in the lung move some, too. But now they’ve figured out how to make the radiation beams move with the tumor–instant feedback, sort of. Like a videogame. Actually, someone else just made that comparison. I don’t get it, but it’s fun to say it. But they have a word for this moving-target technology–“conformal.”
FRIEND: What a great word!
ME: Yes, it really is. Though I’m not sure it makes the strictest sense. In fact, I know the word “conformal” is used, but, as I understand it, it may have to do with the fact that the shape of the beam when it hits the lesion is the same shape as the lesion. Anyway, I know the rays move exactly in time with whatever they’re aimed at.
FRIEND: That’s pretty amazing!
ME: Yes. The hope is for a full remission, but the approach is so new and my case is pretty unusual and so they don’t have any statistics for it, really. I mean, you can’t have five-year survival rates when a treatment hasn’t even been used for five years. But some of the literature online seems to be saying that radiologists hope that the results for lung cancer will be comparable to surgery, if not better. Anyway, the hope is for a full remission, of course. They hardly ever use the word “cure” anymore. I mean someone has breast cancer and she is treated and it recurs after fifteen or twenty years. Hard to say exactly what that is–not a cure, exactly. When you get really close to this stuff, you find out that the more they know, the less they know.
FRIEND: And it was your decision not to have surgery?
ME: It was sort of a group decision, I think–the surgeon, the oncologist, and the radiologist. But is it the right decision? We’ll never know. It’s Frostian.
ME: You know–the road not taken. You can’t know. The ending is completely ambiguous–it might have been the right road, it might have been the wrong road.
FRIEND: Oh, I don’t think so–the ending strongly implies it was the right road.
FRIEND: Think about it–“And that has made all the difference”–taking “the one “less traveled by.” Don’t you think that sounds positive? “And that has made all the difference.” Almost triumphant, right?
ME: Maybe. Well, if it is, and if the poem really does apply to my situation, I hope you’re right. I mean Frost is.
Thursday, December 08, 2011
(After I’ve waited in a kind of Times Square-busy receiving room on the first floor for almost four hours, a hospital escort finally takes me upstairs to the radiation oncology area and shows me to a small changing/waiting area. Everything everywhere is under renovation–it reminds me of the movie “Brazil.” I put on the gown, OATB, as I now think of “open at the back,” as everything everywhere here also has an abbreviation. The treatment I’m going to get, one of these years, is called SBRT–stereotactic body radiation therapy. It seems also to be called IMGRT–image-guided radiation therapy. Best radiation-treatment moniker I’ve heard of is “gamma knife,” which as far as I know has no abbreviation and should be wielded by Darth Vader. There is also: NSAID, NPO, H/H, and my favorite HEENT–head, ears, eyes, nose, throat. HO–history of–is also nice. Here, for the completists: http://www.globalrph.com/abbrev.htm. Today’s appointment is for the “simulation” for that treatment–mapping me, tattooing me, taking a couple of scans to make sure that when they irradiate me, they irradiate straight and true and sharply focused on the lesions. After another POT–period of time–the radiology oncologist comes in.)
DOCTOR: I’m extremely sorry about the long wait. We had a very complicated simulation which ended up taking far more time than we thought it would. It was also part of a research project, and there were five doctors here, milling around.
ME: It’s OK. I figured you weren’t exactly twiddling your thumbs.
DOCTOR: Right. Well, we’ll be ready to go in just a few minutes.
DOCTOR: Truly. The patient before you is nearly finished.
DOCTOR: Again, I do apologize for the delay. But we still have the body mold that we made of you last time.
ME: I guess I should tell you that I’ve gained thirty pounds since then.
DOCTOR (knits brows in concern)
ME: I’m just kidding–can’t you see I’m the same as I was? Or wait! Why should you remember every patient’s poundage, come to think of it?
DOCTOR (smiles wanly): So the scans will show if the pleural effusion is gone or small enough for us to proceed.
ME (sadly): I didn’t know that was in doubt.
DOCTOR: I’m sure it will be OK, but we have to make sure.
(An assistant takes me into the CT room, just across the hall from the little warren where I have been waiting.)
ASSISTANT: Oh, so we meet again, but you don’t remember me.
ME: Who could ever forget you?
ASSISTANT: Uh-oh! Deja vu. OK, so take off the gown and lie on the table, and fit yourself into the mold. We are going to do two CTs and then the therapists will map you for treatment. Try to lie as still as you can, even when you come out of the machine.
(I recognize one of these therapists–the guy who was whistling “Tommy” the last time.)
(They shuttle me slowly into the tube. The whirring starts and the little window where you can see little ball-esque things rotating goes into action. Then I wait. A long time. But not as long as the life-sentence PET scan. Then another CT scan. Then they ferry me out. The doctor comes into the room.)
DOCTOR: OK, now don’t move, please.
ME: OK–I wasn’t going to.
DOCTOR: Really, stay in this exact position as much as possible.
ME: I understand–I really do.
DOCTOR: It’s really important.
ME: Got it, I promise.
DOCTOR: Well, the pleural effusion is almost entirely gone. We can go ahead.
ME: Whew! Great! Hey–did you think I was going to jump all around–that’s why you told me not to move a few times?
DOCTOR: Yes–exactly. Sometimes patients react physically to this kind of news.
ME: But when they do, the mapping can’t go forward, right?
ME: I mean, nobody wants to zap my spleen, right?
DOCTOR: Right. Why spleen?
DOCTOR: Why did you say spleen?
ME: I don’t know–it’s one of my favorite organs and words, even though I have no idea what it does. I could have just as easily said left testicle.
DOCTOR: I was just curious about why you chose spleen.
(Doctor begins to walk away.)
ME: Wait! If I were a psychoanalyst, I might suggest that the choice had something to do with the long wait.
DOCTOR (looks back at me): What would an analyst say about the second choice?
Tuesday, December 06, 2011
(My appointment time for a CT scan and possible “mapping” for stereotactic body radiation therapy for the malignant nodules in my left lung is at 1 PM. I arrive at 12:45. “Possible,” because if the fluid around that lung has recurred after it was drained the week before, then the mapping and SBRT can’t go forward, because the nodules need to be in a fixed position and the fluid “deforms” the lung and makes the nodules wander, even if only slightly.)
RECEPTIONIST: OK, you’re all checked in. If you’ll have a seat in the waiting area, they’ll come for you soon.
ME (after going to the waiting area): There’s no room.
RECEPTIONIST (getting up and walking down the hall): Here’s another place you can wait.
ME: OK–thanks. (To myself) Oh, no–are they this backed up?
(An hour passes. I go back down the hall to use the bathroom, and the receptionist assumes I’m checking to see what’s going on.)
RECEPTIONIST: Don’t worry–they know you’re here. It won’t be long.
ME: Oh, I was just going to use the bathroom.
(Another hour passes. I go down the hall to make sure I’m checked in.)
ME (to receptionist): Are you sure I’m checked in?
RECEPTIONIST: Don’t worry, you’re all checked in. They’ll be down for you soon. Sorry about the delay
(Another hour passes. I write a long letter of grievance which I know I’m not going to send. I read. I fume just a little. I go down to the receptionist again.)
ME: Can you see if they have any idea when they might take me up for the appointment?
RECEPTIONIST: Not really–they are running late today, it seems.
ME (to myself): No duh. (To receptionist) OK–well, I won’t bother you again.
RECEPTIONIST: Oh it’s all right, sir. Don’t worry about me.
(Another hour passes. I doze. In a kind of trance, I finish the Times Sunday crossword puzzle. I never finish the Times Sunday crossword puzzle. And, even more surprising, there’s only one word in it that may not be quite right: “tfyrp.” Then I write another never-to-be-sent letter of grievance to a former boss about all the mistakes she made in working with me, particularly her criticism of my taste in fiction. I scrawl it sloppily on the backs of a four-page printout of an article from Psychology Today about the evolutionary value of humor.)
ME (out loud, without realizing it): She criticized my taste in fiction? My taste? (The two other patients left in the waiting area glance at at me, warily.) Oh–sorry. Heh heh.
(I go back down to the receptionist.)
RECEPTIONIST: I know, sir, and I’m very sorry, but they do know you’re here and they will see you. Don’t worry.
ME: I’m not exactly worried.
RECEPTIONIST: I understand, sir. Just have a seat, and they’ll have to call you soon, because hours are almost over.
ME: Couldn’t someone have just called me at home and told me to come in later?
RECEPTIONIST: I’ve always wondered about that myself, but it’s not in my hands.
(Fifteen minutes later, an escort arrives to take me up to the radiology offices and treatment rooms.)
ESCORT: I guess you’ve been waiting a while.
ME: A good guess.
ESCORT: Now, now.
ME: More like later, later.