Daniel Menaker

Onconversations XLI

Monday, November 26, 2012

(In the CT place for my third follow-up scan after Star Wars radiation treatment a year or so ago. )

TECHNICIAN: Please take off your sweater and shirt.
ME: I’m getting to know the drill.
TECH: You don’t have anything around your neck, right?
ME: Nope. Well, nothing physical.
TECH  (laughs, half-heartedly, but then says): Yeah, I asked a guy the same question earlier this week and he said, “Nah–I left my wife at home.”

(I climb on the slab, extend my arms over my head, getting ready to ride the ferry into the doughnut hole of the CT machine.  “Don’t breathe,” the mechanical voice says, sternly, and a green, Pac-Man-esque face appears on the narrow display over my head with his mouth closed, as whatever it is whirls around me. “Breathe”–just as sternly, and the little round face appears with its mouth open, looking very cheerful. The ceiling of this room has a kind of trellis of leaves and flowers painted on it.  It’s less cheerful than bizarre.

Then, I have to go to  another building to meet the radiologist and get the test results. I am not wildly anxious, but I melt a couple mgs. of Valium in my mouth, just to take the edge off the one-hour interval. My wife joins me in the second waiting room. After a while a nurse comes in to fetch us into the examination room.)

NURSE: How do you feel?
ME: Good. Except for this pain and skin sensitivity on my back and lower chest.
NURSE: That’s the radiation. How about your weight?
ME: I’ve put on a few pounds, if anything.
NURSE: Good.
ME: A rale or two from time to time.
NURSE: The radiation. Any difficulty swallowing?
ME: A little from time to time, but no more than I’ve had for some years–a side-effect of blood-pressure medication, I’ve been told.
NURSE: Right. Heartburn?
ME: As a matter of fact. yes, a little.
NURSE: That’s the radiation.  Your last bowel movement?
(Really?)
ME: This morning.
NURSE: OK. Please get up on the scale.
(I do.)
ME: Take six pounds off–I have a lot of junk in my pockets.
NURSE: _______
NURSE: OK, it will just be a few minutes and Dr. ______ will be in to see you to discuss the scan.
(Discuss the scan? I don’t like the sound of that. A few minutes pass.)

DR (enters and says immediately, as he bustles into the room, and with out really looking at me): The scan is good.  (So much for discussion.)
ME AND MY WIFE: Great!
DR: Now about this pain …
ME: It just went away.
DR: What?
ME: It’s really strange, but the pain just disappeared.
DR (getting it, although in fact the pain really did suddenly subside): Ah, the psyche is an extremely powerful organ. But seriously, tell me about the pain.
ME: It’s not a big deal. It’s right below my ribs on the left side, and you can feel a little swelling there. The only time it really bothers me is at night.
DR: Would you lift up your T-shirt?
(I do. Doctor examines my chest and stomach.)
DR: I don’t see or feel anything.
ME: It’s there– it really is. (I try to show him.)
DR (palpating the left and right sides of my lower chest): I can’t feel anything different.
ME: It doesn’t matter to me, now that I know the scan results. Nothing matters except that. But there is swelling there. But really, never mind.
(My wife suggests some possible remedies–a pillow like the one she uses for her back and some medication that she takes. Dr. ________ is skeptical.)
DR: What we can do is try some Lidocaine patches.  I’ll give you a prescription.
ME: If I keep feeling this way, I won’t need anything.
DR: Yes–I’m very pleased too.

(I keep hoping for a truly funny or otherwise bloggable moment, but it doesn’t happen.  Unless you count the fact that on the way home, the crowded crosstown bus–creeping along 66th Street toward Central Park and then Lincoln Center, this bus which would usually drive me nuts with New Yorker-type impatience [the wheelchairs, the walkers, the cell-phone conversations, the sanitation trucks blocking the way, the bulky clothes too early for the season, and so on]–this bus seems to me all jollity and energy and, well, life.)

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Onconversations XL

Tuesday, November 13, 2012

(With a couple of weeks to go before my next follow-up CT scan, I notice a slight swelling at the bottom of my rib cage on the left, and I have continuing pain in the middle of my back–both are sites where the stereotactic body radiation therapy beams were zapped through eight or nine months ago. The swelling is sore. I am on about four Advil/day, so this pain–which is expected and normal (if anything is normal in the cancer world)– is not severe, but the swelling is new, and I don’t like it. It feels like there’s a little cylindrical sponge under there. So I write an email about this development to my thoracic oncologist. He usually responds to emails, and I use this courtesy as sparingly as I can. I realize that it might be better to call my radiology oncologist, but sometimes when I call his number and the lovely-voiced assistant isn’t there to answer, the phone rings four or five times and then this voice comes on the phone and practically shouts out “Radiology!” The first two or maybe even three times I called that number, I thought it was a real if somewhat impatient human being. But it was Radiology’s version of an answering-machine message, and it left me a bit flummoxed. But guess what: My thoracic guy is out of the office, it seems, because I get no reply. So I call the Radiation number.)

PHONE (after four rings): Radiology!
ME: Um, hello? Oh. Yeah. Message. Well this message is for Dr. ________ This is Robert Menaker calling, You know, Dan Menaker. Robert Daniel Menaker. Well, Menaker is all I need to say, probably. Anyway, I have this sore swelling right under my rib cage and I wanted to ask Dr. ________ about it. Maybe he could call me back. (I give phone number.) Thank you.

(Later that afternoon, the thoracic guy’s nurse calls me back.)

TG’S NURSE: This is ________ from Dr. ________’s office. You emailed earlier today?
ME: Yes–thanks for calling back.
TG’S NURSE: Dr. ________ is out of town. Maybe I can help you.
ME: Well, I have this swelling at the bottom of my rib cage, and then there’s the pain in my chest and back, which I understand is normal.
TG’S NURSE: Can you describe the swelling?
ME: Yes, it’s like a little skinny mole or vole under my skin–soft and rounded.
TG’S NURSE: A mole or a what?
ME: Let’s just stick with “mole.”
TG’SNURSE: When did you notice it?
ME: A week or so ago. I finished my radiation treatments about eight months ago, and was told then that there would probably be pain, though it’s a little worse now. But it’s the swelling that’s new.
TG’S NURSE: Eight months ago?
ME: Yes–I think that’s a normal time lapse for the pain part.
TG’S NURSE: Really?
ME: Yes.
TG’S NURSE: Have you thought about calling Radoiology?
ME: Yes, I called and left a message.
TG’S NURSE: Well I know Dr. ________ will want to talk to you when he gets back, but in the meantime, I’m sure Radiology will call you back.
ME: OK, well, I’ll just wait.  I probably shouldn’t have bothered you. It’s just that their answering-machine message is sort of like a drill sergeant–a little daunting.
TG’S NURSE: What?
ME: Nothing. I’ll just wait.

(No more than half an hour later, the Radiation Oncology nurse calls me.)

RO NURSE (briskly): Is this, er, Menaker?
ME: Yes–Robert Menaker. Daniel, you know–
RO NURSE: Date of birth?
(I give it)
RO NURSE: Dr. ________ asked me to call you. What seems to be the problem?
ME: I have this new swelling right at the bottom of my rib cage, and this pain.
RO NURSE: The pain is normal–do you need anything stronger than OTC meds?
ME (tinily but still ludicrously proud of knowing what “OTC” means): No–just taking three or four Advil a day.
RO NURSE: That’s not so bad, considering how close the nodules were to the chest wall.
ME: But the swelling is new–it seems like a little soft roll under–
RO NURSE: Normal also.
ME (relieved): Really?
RRO NURSE: Yes.
ME: This late?
RO NURSE: Perfectly normal.
ME: Well, good. I mean, not good that I have the swelling, but–
RO NURSE: Yes, I know. Your next scan is on November __th.
ME: Right. Thank you.
RO NURSE: So don’t worry, OK?
ME: Easy for you to say.
RO NURSE (laughs): Right.

(The following Monday, the thoracic oncologist calls me.)

TO: So I hear you called about some swelling.
ME: Yes, but Dr. ________’s nurse got back to me and said it wasn’t anything to worry about.
TO: Right.
ME: I probably should have just called that office in the first place. But not to be a wuss or anything, but their answering-machine message is scary. Some autocrat yells out, “Radiology!”
TO (laughs hard): They’re more about protons than personality.
ME: You didn’t need to call back, but thank you.
TO: Don’t worry–I like to know what’s going on.
ME: I don’t want to be one of those patients who– Well, you know.
TO: You’re not. You’re an ideal patient.
ME (pleasantly taken aback): Really?
TO: Yes.
ME: Jeez, I’d like to put that in my blog, but how can I do it modestly?
TO: You can’t.

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Onconversations XXXIX

Sunday, November 04, 2012

FRIEND 1:  You know, my mother filled out all these DNR forms, but a lot of times in a hospital they don’t follow them.
ME: Doctors just take care of it all the time. They just do it.
1:  Not necessarily in hospitals. There are all these protocols and procedures.
ME: I think they just quietly usher the person out quite often.
FRIEND 2: It’s the nurses, a lot of times.  They’re the ones who make it harder. Especially if they’re very religious.
FRIEND 3:  My father died at home, and when he was going, the assistant nurse was new and she didn’t really know what she was doing. So somehow she gave him only ten percent of the morphine he should have been given.
ALL: (Groan, say “Oh, no,” then are silent, thinking of the unnecessary suffering.)
ME: I am determined to take care of this myself while I still can, or get the best, um, facilitator I can find.
2: Everybody says that, and most people end up having a harder time than they should.
3. I read somewhere–I think it was Philip Roth writing about his father–that dying is always hard work.
ME:  You know, you hear that about just about everything. Work is work, play often involves work, pets are work, kids are work, friendship is work, and you have to work on your marriage. It doesn’t seem fair that marriage is work.  Too much work. And now dying is work. Probably you have to work in Heaven too. Singing praise is probably work.  Hell might be better–you don’t really have to work on anything.
1 (looking at me, contritely): Oh, no, Dan. I hope we haven’t depressed you with all this talk.
ME: Why? Not at all. I like deathy conversations.
1: Well, you know–I was just thinking of your…situation…and I was thinking that this kind of talk might get you down, considering…you know. I’m sorry.
ME: Well, until this moment, it hadn’t occurred to me at all, but now I am depressed because you thought it would depress me.
1: Well, I’m sorry.
ME: I was joking. Sort of.

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Onconversations XXXVIII

Wednesday, October 10, 2012

(In Pokhara, Nepal, on a speaker’s tour for the U. S. State Department. Having dinner with my wife and the two young people–I will call them Amood and Laksmi–who have organized our schedule and who, among other things, run a library/cultural center in Kathmandu. We have been here for six or seven days, and have been going around to universities and receptions and dinners, and it is all fascinating but also exhausting. Now the official part of the trip is over. We are eating outside at a Thakkali restaurant–the ethnicities in Nepal are so varied and numerous that they’re hard to keep track of, but…well, but nothing. Except that everyone is very friendly and quite shy, generally. Often people want to ask me what it was like to work with Salman Rushdie–as I did, on his novel “Shalimar the Clown,” when I was at Random House. I tell them that Mr. Rushdie is a wonderful writer and was very sure about what he wanted and didn’t want in the way of editing, at one point telling me–about a modest suggestion or two for omitting certain passages–“Thanks, Dan, but my British editor thinks the book is fine just as it is.” So as we’re talking about Indian writers I tell them the following story.)

ME (in answer to Amood’s question, I think): Yes, I met Naipaul once, at some party at Columbia, I think, but only very briefly. I was told by a friend that earlier at that same party someone my friend knew–drunk, a troublemaker–said that Ved Mehta, another Indian writer, blind, was standing nearby. The troublemaker said, “I don’t believe he’s blind. I think he’s just making up. It’s just a way to be different. Watch this–I’m going to prove it.” He went over and made a sudden lunge forward and put out both hands toward the man’s face. The man didn’t move or respond in any way. Then the jerk did the same thing again, and someone else pulled him away and said, “What do you think you’re doing!” The drunken guy said, “That’s Ved Mehta and I wanted to prove that he’s not blind.” The other guy said, “That’s not Ved Mehta, you idiot–that’s V.S. Naipaul.” A little later that evening I talked to Naipaul briefly, and he was very grouchy. No wonder. Though I understand he’s generally pretty grouchy.

Amood and Laksmi: (laugh)

ME: So besides all those lectures and workshops and everything, is there anything else I can tell you about? I think maybe I’m talked out.

LAKSMI: Well, I’ve been reading your blog.  Um, about … cancer.

ME: Yes, well.

LAKSMI: But you are OK.

ME:  For the time being, it looks like.

LAKSMI: I have a … condition too.

ME: Sorry to hear it. I hope you’re OK.

LAKSMI (as I recall): Yes, it’s just something I have to watch.

ME: Good luck to us all. My next scan is in November. You know, I was reading in the paper that this guy from M. D. Anderson, the leading cancer center in the world, said that very soon many cancers will be much more treatable, because they are learning to target the molecular structure of an individual’s particular kind of cancer. It will be like going to a tailor for a suit—height, weight, inseam, arm length, shoulder width, and so on. Each person will have a different treatment. Or each group of cancer patients will have a custom-made treatment.  Maybe I can hang on long enough for that. One thing is for sure. In twenty-five years, the cancer treatments of today will look primitive.

MY WIFE: You know, Dan was told that this one particular drug, a very effective one, wouldn’t work for him, and then they did more molecular analysis and the doctor said it would be very effective for him after all.

ME: Yeah, he said, “By the way, Tarceva would be a good treatment for you after all.” And I said, “By the way”? And we both laughed. I keep telling this story, because the “by the way” was like finding a surprise present somewhere.

****

(Later, going through security at the Pokhara airport, to fly back to Kathmandu, the security officer–with very little English–looks through my tote bag and finds a plastic bag with quite a few bottles of prescription drugs. I am at that age. Or at least at that age with certain …. conditions.  Some pills for non-insulin-dependent diabetes, for nausea, a thyroid supplement, a beta blocker.  None have anything to do with cancer treatment. He opens one and shakes its contents a little. He seems concerned.)

ME: Yes—there are a lot of pills. I have some … conditions.

OFFICER: What for are these?

ME: Non-insulin-dependent diabetes. Diabetes. Do you know?

OFFICER (to older officer beside him): [Nepalese]  Dyerbits?

OLDER OFFICER: (Says what is obviously “No” in Nepalese.)

OFFICER: (Picks up another bottle, opens it, peers inside for five seconds, as if the bottle held deep secrets.)

ME: Blood pressure. (I put my hand around my wrist, like a blood-pressure cuff–or so I would like to think.)

OFFICER (clearly baffled by my gesture, consults with older officer, surveying the bottles of pills in general, with what looks like growing suspicion):  [Something in Nepalese.]

ME (growing a little desperate, wondering what the food is like in Nepal’s jails; drug laws and punishment for breaking them are draconian in Nepal): There are no bad drugs here. (Unless, I say to myself, you count a little Valium, for a fourteen-hour flight over the North Pole.)

OFFICER: Bad drugs.

ME: No—no bad drugs. I promise.

OFFICER (confers with older officer; they look as if they are going to take this matter further, because the older one puts his hand toward me as if to say “stay here” and turns away, maybe to get the police or something)

ME: I have cancer.

(Everything changes—the older officer turns back, the younger officer looks upset.)

OFFICER (in clear English): Cancer?

ME: Yes, cancer.

OFFICER: Very sorry.

ME: It’s OK. I am OK. For now, anyway. But thank you.

(The officer seals the bag with the bottles in it, gives a cursory look at the rest of my tote bag, zips it up for me when I go to zip it up.)

OFFICER: Luck to you, Sir. Namaste.

ME: (Pressing my hands together): Namaste. Thank you.

(So cancer, like a surprise present, may very occasionally be just what you need. God forbid.)

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Onconversations XXXVII

Thursday, August 16, 2012

(I talk to a friend a couple of weeks after a  CT scan showed good results six months after the completion of fancy radiation therapy)

FRIEND:  Well, that’s fantastic news!  I’m so glad to hear it. (With a little indignation) How come you didn’t tell me right away?
ME: I’m sorry. I tried to tell everyone who might care with a group email. I just went through the alphabet in the address bar and chose the names of people who I thought might not want to know.
FRIEND: What? “Might not want to know”?
ME: I mean, who I thought might want to know. Not “might not.” Sorry.
FRIEND: Interesting mistake.
ME: Oh, please.  Anyway, of course I should have included you. It’s not my fault if you have some weird email address that has nothing to do with your name.  Isn’t that for adolescents and stalkers and ranters and serial killers? I guess I just didn’t recognize it when it was autofilled.
FRIEND: It’s OK–I’m just having you on a little.  Now that you have good news, I feel like it’s easier to kid you. What’s next?
ME: Another scan in November. The guy says every three months for two years, then every six months.
FRIEND: Why?
ME: They must have some kind of statistical reason.
FRIEND:  I wonder. I mean, does it make sense that survival rates in a case like yours, say, would be significantly worse if it was like every four months?
ME: Hmm. That does seem pretty unlikely. Especially since my case is a little unusual, and since my guy put this second one off for almost three weeks because he was on vacation. It was nice to have a few  more weeks not to have to think about it, except insofar as you naturally have to think about it at least a little.
FRIEND: What does the guy think is going to happen?
ME: He hasn’t said. I haven’t asked. What’s the point?
FRIEND: Planning.
ME:  I’ll just go on trying to do what I want to do until I have to stop. Isn’t that what we all do anyway?
FRIEND: Not all of us have a life-threatening illness.  Well, except life itself.  I said that because I knew you were going to say it. Or something like it.
ME: Right– I would have.  It’s amazing how well the cliches serve you when you’re in situation that really calls for them. Make the most of every day. None of us get out of here alive. Stop and smell the roses.  They actually turn out to be useful and comforting.  And besides, I have actually done some planning–some financial
stuff–and I think it’s pretty much taken care of.
FRIEND: You mean, like your will.
ME: Among other things, yes. It’s interesting–in an earlier will I left a thousand dollars to a pretty random friend just to enjoy while I was alive thinking about the postmortem surprise he would experience.
FRIEND: That’s very weird.
ME: But this time everything was serious, befitting my age and condition, probably.
FRIEND: What are you leaving to me?
ME: A grown-up email address.

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Onconversations XXXVI

Wednesday, August 01, 2012

(Another follow-up CT scan, six months after the completion of two courses of stereotactic body radiation therapy–SBRT (http://radonc.ucla.edu/body.cfm?id=61).  Preceding the test, the usual nerves.  “Scan-to-scan anxiety is real,” my thoracic oncologist has written to me in an email. Thanks, Doc, I say to myself. The appointment for the scan is at 2:30 in the afternoon, for the consultation about the scan at 4.  Owing to amazing downtown-and-crosstown-bus luck, I get to the hospital at about 2. They take me in for the scan very quickly, and the scan itself is also very quick. The technician gives nothing away.  You try to read something into their “Have a good day”s and “Take care”s when the test is over, but they have become expert at hiding their knowledge of what the scan has or hasn’t shown. So I’m done with the scan before 3.  Will I have to wait until 4 to see the young radiation oncologist? No.  I’m taken into an exam room almost immediately.  There a nurse comes in with one of those rolling vitals poles and takes my vitals–white-coat effect pretty apparent.  Blood pressure 160/60 (weird!), pulse 110, but blood-oxygen level–the little clip they put on your finger; how does it know anything?–very good: 98%.  Weight 174 with clothes on–which is great because it means my weight is around 170.  It’s  great because I have spent the past week at the Southampton Writers Conference eating everything in sight and thought I must have put on five pounds but haven’t.  Then in comes a handsome young resident–they rotate through radiation oncology; this is the third one I’ve seen over the past year of chemotherapy and SBRT. [Don’t forget that my wife and I are still waiting for the results of a crucial CT scan all this while.]  He is thorough but very fast–heartstethosocopebreathingstethoscopechesttappingbacktappingunderarmlymphnodepalpitationnecklymphnodepalpitationmusclestrengthtestingreflextestingeyemovementtestingandsoforth, and as he’s being thorough and quick, we talk.  He says something about having lived in Boston for seven years.)

ME: You went to school there?
DR: Yes.
ME: Harvard? [What an idiot!]
DR: Boston University.
ME: Undergraduate and medical school?
DR:  Yes.
ME:  And you’re rotating through radiation oncology right now?
DR:  Yes. You’re in good shape.
ME: Thanks.
DR: Well, Dr. ________ is looking at the scan right now. I took a brief look before I came in to see you.
ME:  (Thinking, “And …?”)
DR:  He’ll be in to see you soon. We just have the preliminary report now.
ME:  (Thinking “AND …?”)
DR: Uh, he’ll tell you all about it. We won’t have the full report until a little later.
ME: OK.
DR: Do you work out?
ME: Yes–four or five times a week.
DR: What do you do?
ME: I do exercises for half an hour and then run for half an hour. Shuffle is more like it.  (A standard small joke. Very small.)
DR:  Very good.
ME: And do you work out?
DR: I wish.
ME: Your work here doesn’t allow it.
DR: Not usually.
ME: Well, that’s unfortunate.

(Here I make a comparison between the speed with which the resident went through the tests and the way our dog sort of does all his tricks in an efficient hurry in order to get his treats as soon as possible. The confession of this moronic and insulting comparison is bad enough–I wanted to bite my tongue in half even as I continued to slog through it.  But I can’t bear to set down the details.  The resident wore a look of indigestion while I went on.)

DR:  Hmm. Interesting. Well, good luck. It was good to meet you.

(A few minutes later the oncologist comes in to see me.)

DR: Well, the scan looks very good.
ME: Excellent!
DR: (seems very pleased with himself, more pleased than with the actual result–as he should be, since this whole course of treatment has been something of a gamble that we took together and he has been at least temporarily vindicated.) Yes—it’s just what we hoped.  The nodules appear to be gone. There are no new ones, and your lymph nodes show no evidence of spread.
ME: Excellent.
DR: This is just a preliminary finding. Someone else who is expert at reading scans will be looking the scan over very, very carefully soon, and we will let you know what he says.  Probably we’ll call you.
ME:  How annoying! Tell him not to bother.
DR: What?
ME: The expert–tell him he doesn’t need to look very carefully. I’m satisfied right now.
DR: (gravely)  I’m afraid I’m not at liberty to do that.
ME: I’m kidding. Just happy to hear this news.
DR: (faint smile) There is some scarring from the radiation, and it could be that the scarring is obscuring something, but I don’t think so.
ME: Well, this is great.
DR: I’d like to do another scan in another three months.
ME: Or four, maybe.
DR: (nods his head, not in agreement but in comprehension of my deranged mood)  Three months.

(At home, an hour later, the resident whose examination of me I compared to a dog doing tricks, calls.  “The final report confirms the good findings,” he says, hastily.  “Congratulations!” He gets off the phone as quickly as possible.)

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Onconversations XXXV

Monday, June 11, 2012

FRIEND (At dinner. He has had so-far-successful surgery for a sarcoma):   So, what’s going on?
ME:  Well, I have another follow-up CT scan in mid-July, which should say if and how well the radiation treatment worked.
FRIEND: You just had one in April.
ME: Yeah, my radiation oncologist guy does them every three months. Can you believe he has an M.D. degree, a Ph.D. in Physics, a Ph.D. in Radiology, and a Ph.D. in Radiological Oncology. And he looks like he can’t be more than thirty-five. Half my age. A fucking sprat.
FRIEND: That’s amazing. But why so soon–every three months?
ME: Well, that’s just how he does it, I guess. Don’t they do follow-ups with you?
FRIEND: They did, but I stopped having them after two years.
ME: Really?
FRIEND: Yes–they wanted me in every three months and then six months and then I just said no.
ME: Really! Well, do you think that’s a good idea?
FRIEND: Well, obviously.  I think everyone tests too much all the time.
ME: But isn’t a routine test how they diagnosed you in the first place?
FRIEND: Yes, and I have been lucky. But after a couple of years of negative results, thank God, I’ve had enough testing.
ME: ________
FRIEND:  I couldn’t stand the anxiety of those tests. Leading up to them, waiting for the results, going back so soon.  Unless I have symptoms, I’m not sure when I’ll have another follow-up examination.
ME: That seems pretty risky to me.
FRIEND: Life is risky.
ME: But let’s say you did the follow-ups and they found an early recurrence. Wouldn’t that give you  a better chance of survival or at least remission?
FRIEND: Maybe. But I just couldn’t live with that shadow coming back over me from a few months in the future. It takes over your life, and you live from one scan to another. I’ll take my chances.
ME:  Well, it’s true that I was surprised that it keeps on being every three months for a while.  I thought someone said three months and then six months.
FRIEND: See? It preys on your mind.
ME: Then the doctor said, “I like to do it every three months for a while.”
FRIEND: See what I mean? He likes to do it. Is he gathering data or taking care of his patient, do you think?
ME: You know, I almost said, “Let’s make it six months–what do you say?”
FRIEND: You should have.  Listen–everyone is testing too much all the time. Haven’t you noticed all the stories about pulling back on annual checkups and EKGs and PSA tests and so on? It has to do with money, charges, a whole industry. It’s not even statistically related to patients’ health.
ME: Well, all I know is that if I hadn’t had routine follow-up chest X-rays after the lobectomy, to say nothing of the chest X-ray that found the first tumor, the recurrence would have been found probably at a much later and less treatable stage. Don’t forget you’ve had two years of NED.
FRIEND: Ned?
ME: Yes, NED. Haven’t you met him. Wait–you have met him, for two whole years, and that’s what we’re talking about, and that’s the difference between you and me.
FRIEND: Who is Ned?
ME: I’m astonished you don’t know NED, especially, knock wood, since that’s what you have.
FRIEND: What?
ME: No Evidence of Disease. NED. May he continue to be your best friend and may I get to know him a little better in mid-July.

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Onconversations XXXIV

Friday, June 01, 2012

(A friend of mine–a person of great and wide-ranging intelligence–and I have an ongoing argument about the philosophical subject of Free Will. He kinda sorta believes in it, and I more or less don’t, though we now seem to have entered common upon ground. [See Oncoversations XXXIII.] The following is a redacted email exchange between him and me about this subject and, at least at the beginning,  how it’s related to my medical situation.)

FRIEND: … I love having opinions, as you know.

ME:  You are the person whose opinion I value most highly–often more highly than my own, as in this case, and as in the case where you may have helped to give me years of good quality of life with your brilliant skepticism about surgery for my lung nodules.

FRIEND: I can’t believe you’re giving me credit for that. I’m touched—and how wonderful if it were true. But man, that one’s on you.

ME: I certainly give you credit–which you must accept–for helping me by talking and thinking those things through with so much reason and logic.  If not for those conversations, I might well have made a different–and probably less intelligent–decision. Yes, the decision was on me, but you have to take credit for helping me toward it. And even if it turns out to be the wrong decision (which it actually can’t, since it’s the decision I made and we can’t know what would have happened if I’d made the other one), I will be grateful and give you credit for helping me think it through in new and different ways.  Now on the other hand, if you try to turn this conversation into some kind of exemplum of of free will, as I’m sure you must be tempted to do, I can tell you in advance that, genuine gratitude and credit notwithstanding, it won’t work.

FRIEND: You say, “Now on the other hand, if you try to turn this conversation into some kind of exemplum of of free will, as I’m sure you must be tempted to do, I can tell you in advance that, genuine gratitude and credit notwithstanding, it won’t work.”  How much of an a_____e would I have to be, to use your gracious words against you, to score some sort of cheap debating point? Besides, I think we had reached agreement.
It occurs to me—— and by the way, isn’t this a nice expression in English? “It occurs to me …” From your point of view, it reflects the fact that the conscious self is not very much in charge of its thoughts or anything else. The idea needs no help from the likes of us. I see this is an old expression, per the OED:  “1568  (1505)    R. Henryson Fables 886 in Poems (1906):  “I sall rehers a pairt of ewery kynd /Als far as now occurris to my mynd.”   From my point of view, what occurs to people’s minds is the meme, avant la lettre. Anyway, as I was about to say …
It occurs to me that one is more willing to credit the fact that other people can affect one’s decisions than the possibility that one’s conscious self can do that. Perhaps you noticed that I started emphasizing issues of persuasion as our debate marched on. In the case of other people, we don’t need to reach the question of what their conscious selves are up to. We can conveniently treat the other people (the persuaders) as integrated wholes; or as black boxes.
(Nice word, exemplum. It should be a fruit.)

ME: I was just skittering away from my own feelings–that’s all. I didn’t really think you would pick up my gratitude as a free-will cudgel.
I agree about “it occurs to me.”  About six times in the last 24 hours alone, I have tried to remember something–a name, a year something happened, etc. I failed, until the answer occurred to me. I could say that I thought about and finally came up with the answer, but that isn’t what it felt like. It felt like the name came out of nowhere (sort of a la Julian Jaynes). I just thought of one example. I was talking to_______ about New Yorker writers who were sort of created by the magazine, meaning that they couldn’t write at all but the “machine” sort of smoothed them out and made them presentable. I couldn’t think of the main example–the writer who we all thought didn’t actually exist but was kind of manufactured in the office. I couldn’t think of it and I couldn’t think of it, and then, BAM! there it was, in my mind. Joseph Wechsberg. The answer really did feel as though it had happened to me, not that I had generated it consciously.
I don’t understand “the meme, avant la lettre.”
About other people’s influence on decision-making: agree.
The answer really did feel as though it had happened to me, not that I had generated it consciously.

FRIEND: Sure. I agree that it did happen to you and that you did not generate it consciously.

ME: I don’t understand “the meme, avant la lettre.”

FRIEND:  From a book: “Ideas have retained some of the properties of organisms. Like them, they tend to perpetuate their structure and to breed; they too can fuse, recombine, segregate their content; indeed they too can evolve, and in this evolution selection must surely play an important role…. Ideas cause ideas and help evolve new ideas. They interact with each other and with other mental forces in the same brain, in neighboring brains, and thanks to global communication, in far distant, foreign brains…. Who’s in charge, according to this vision—we or our memes?”

ME: I remember reading the [wonderful] meme stuff (now), but “avant la lettre“?

FRIEND:  Ah. My favorite pretentious expression. Not that I have ever used it except in email. But I’m always looking for excuses.  You could look it up, but no one will ever explain it better—or produce better examples—than our friend Roy: “Means ‘before there was a name for [some quality or category].’ As in ‘My great uncle Llewelyn was a flower child avant la lettre….’ Or, to be really literal, ‘Snakes were making the s sound avant la lettre.’ ”

ME: But who is Roy?

FRIEND: Roy Blount, Jr.

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Onconversations XXXIII

Friday, May 18, 2012

(On a bench in Central Park on a beautiful May day.)

OLD FRIEND:  You look tired.
ME: You know, I’ve always thought that that is one of the worst things you can say to someone.
FRIEND: I meant to be sympathetic.
ME: All it does is make a vain person like me feel bad.
FRIEND: You’ve always been too sensitive.
ME: I have not!
FRIEND: See what I mean?
ME: Where do I look tired?
FRIEND: Under your eyes, and you also look pale.
ME: Great.
FRIEND: It’s because I care.
ME: Sure.
FRIEND: How was your lunch with ____________?
ME: Extremely interesting. We talked a lot about his father [a famous man, deceased].
FRIEND: And?
ME: And what?
FRIEND: Don’t fuck with me. And what did he say?
ME: He said his father, and I quote, “dug himself into a hole with his mistress and couldn’t get out.”
FRIEND: By all accounts she was a harridan.
ME: Yes. But I said to ________, “He could have gotten out, you know.” And ________ said, “What do you mean?” And I said, “Well, he could have gotten out—that’s all. If you aren’t an actual slave or tied up or something, you can get out.”
FRIEND: Aha!
ME: Aha what?
FRIEND: Aha, you have just shown me that despite all your fancy positions against free will, you actually believe in it.
ME: I showed you no such-a thing.
FRIEND: Yes you did. You said he could have gotten out.
ME: What I meant was–
FRIEND: Oh no you don’t! You said he could have gotten out, which means you think he could have made a decision to get out but chose not to.
ME: Look, I talk like everyone does on this social–
FRIEND: You believe in free will–it’s clear to me and you can’t wriggle away from it this time.
ME: Let me finish. I talk like everyone else on this social level–she could have not dyed her hair purple, he could have married Susie instead of Sally, my boss could have chosen to let me offer more for Atul Gawande’s first book.
FRIEND: Yeah–what happened there, anyway?
ME: I’ll tell you later. My point is that like everyone else, in ordinary conversation I talk the way people talk, as if people have real choices about what they do, agency independent of their physical brain’s neurological functioning. But I don’t actually believe it. We just use it as a model. I don’t actually believe that _________’s father could have gotten out of that hole. He stayed in it because that’s just the way he was. It was his brain that kept making his consciousness so-called “choose” to stay in the hole. In fact, I think that’s exactly what _______ and I were talking about: his father’s not being able to choose to get out of the hole.
FRIEND:  Oh, wriggle wriggle.
ME: OK, then–I choose to return to the subject of my looking tired.
FRIEND: What about it?
ME: Well, if you must know, I had a terrible night last night.
FRIEND: I’m sorry–what happened?
ME: I had this weird chest pain.
FRIND: And did you call the doctor this morning? You should have.
ME: No. I did freak out a little, I admit. When you have cancer you sort of automatically become a hypochondriac and also a rationalizer at the same time.
FRIEND: You have no choice.
ME: Get off it, OK?  I didn’t call the doctor, because it just didn’t feel like anything cardiac.
FRIEND:  Call the doctor.
ME: No, I really don’t think I have to. I think I figured it out.
FRIEND: _______
ME: So at first I was sure it was angina–my father had it.
FRIEND: What did it feel like?
ME: Just to the left of my sternum, this little bud of warm pain would blossom every four or five minutes and then sort of evaporate. It wasn’t severe but it kept me awake.
FRIEND: Call the doctor.
ME: So I got up and Googled angina and learned all about stable angina and unstable angina and so on. With stable angina, it says the patient can predict when it will occur. So at first I thought, Oh, well, I can predict this because it seemed to be coming and going regularly.
FRIEND: What time was this?
ME: It started at 2:30.
FRIEND: You got up and looked at your computer at 2:30? By the way, stable angina sounds like an equine disease, like dogs with kennel cough.
ME: Very funny. This is serious, So just to make sure, I went back and lay down and timed the pain buds–sure enough, every four to five minutes. So then I went back to the computer and looked more and found put that by “predictable” they meant that patients could predict like, well, after a stressful event or too much exercise, they knew they would have an angina attack.  They didn’t mean that it would occur at regular time intervals.
FRIEND: Well, of course not. Moron.
ME: What did you say?
FRIEND: Oh, nothing.
ME: You said “moron.”
FRIEND: No, I didn’t.
ME: Yes, you did. Anyway, so now I was really getting scared that I would have a heart attack. Now, you know I have gotten through all my cancer treatments without much in the way of hypochondria. Just simple, justifiable dread.
FRIEND:  You’ve handled this whole thing very well.
ME: Thanks.  But at this point, anyway, cancer actually came to my rescue.
FRIEND: Tell me.
ME: I realized that what I was experiencing was chest-wall pain. Which is a famous side effect of the the fancy radiation therapy I finished in the winter.
FRIEND: But that was months ago.
ME: That’s the fiendish thing about some radiation side effects–they can happen six months, a year later. And chest-wall pain and rib fracture can be among the most delayed. So I decided that’s what this was, took an Advil, and finally went back to sleep. But I was up from about 2:30 to 5 in the morning.
FRIEND: This is all to explain why you look tired?
ME: Exactly!
FRIEND: Very convincing.
ME: I’m sure that’s what it was.
FRIEND: Call the doctor.
ME: With Gawande’s first book, by the way–it was a collection of his pieces from The New Yorker, and my boss just had this reflexive reaction that collections of already-published pieces were a bad publishing bet. So I couldn’t match another publisher’s offer.

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Onconversations XXXII

Wednesday, May 09, 2012

(Since I started these Onconversations, about a year ago–with the recurrence of malignant nodules in what remained of my left lung after a lobectomy in 2008 for a 2.5 cm. adenocarcinoma–this site has gotten as many as a hundred and as few as zero clicks a day, according to Google Analytics.  Even a hundred is nanochicken-feed, I realize, so those of you who do stop by here for a few minutes every now and then, thank you, and please share the destination with others who might find it interesting or amusing and maybe even worthwhile. It’s by no means just a matter of raising Google-search numbers and seeing if there’s enough traction here to consider a book project for myself. Though it is partly those things, I confess.  It’s also a matter of being in touch with and creating a community of cancer patients, physicians, and those close to them who have some philosophy about and perspective on the illness–something beyond the usual [though useful and helpful] medical sites, professional and patient-generated. I’ve found that every instance of others’ intelligence, insight, humor, and candor about cancer has proved to be tonic in itself–and, paradoxically and most important, has proven antidotal to obsessing about it.

Small as the site’s visitor numbers may be, you-all have landed here from just about everywhere–Japan, Ukraine, Bangladesh, Finland, Brazil, Singapore, Croatia, India, Argentina, Canada, Germany, Malaysia, Norway, Pakistan, Mexico, Belgium, Brazil, Georgia, England, Papua-New Guinea, France, Colombia, Greece. Not Italy yet, as I recall. What’s up with that?  This is thrilling to me, not just out of self-regard but because it gives evidence of what kind of potential good–or at least pleasure and interest–a global globe can provide, even about cancer.

Anyway, I meet a friend and fellow-patient on the street very near my apartment. He has on a black jacket and his left arm is close to his side, his left hand in his pocket.)

ME: So, I take it you’ve had the surgery. (It was, as I recall, surgery for a recurrent tumor that would paralyze his arm.)
FRIEND: Yes. (He nods toward the arm). It’s now just decorative, I’m afraid.
ME:  You can’t use it at all?
FRIEND: Nope. Useless.
ME: Well, I’m sorry. But on the other hand–
FRIEND: Watch it!–
ME: It wasn’t deliberate, I swear. On the other hand, you’re well now.
FRIEND: From your lips to God’s evidently pretty deaf ear.
ME: You look well, anyway.
FRIEND: Thanks, but that’s about one-twentieth the battle, don’t you think?
ME: It depends on how vain you are, I guess.
FRIEND: And you?
ME: Finished radiation treatments–very fancy and futuristic–three months ago, and the last CT scan was encouraging.
FRIEND: Oh, yes–encouraging.
ME:  No, really! But I have another scan in July which will be more telling.
FRIEND: Good luck with that.
ME: What are you doing around here, anyway?
FRIEND: I’m taking part in a wall-to-wall Gertrude Stein thing at Symphony Space.
ME: A fellow-cancer patient.
FRIEND: Yes. Not so encouraging.
ME: You know, you are just too quick. You do two-upsmanship better than anyone else I know.
FRIEND: Well, you can find anything you want in Gertrude Stein to bolster whatever you are trying to bolster. In our situation, my favorite would be “Considering how dangerous everything is, nothing is really very frightening.”
ME: Excellent. I’ll keep it in mind as July approaches.
FRIEND: Are you going out to the Southampton conference this summer?
ME: Yes, but I’m not sure what I’ll be doing.
FRIEND: In our situation, getting there will be almost all the fun.

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