Crap month

Been a long time. When I started this blog, my intention was to write as honestly as I could, every day or two, about my experience with cancer, writing, mothering, wife-ing, etc. I especially thought that writing about cancer would help... someone... maybe me, maybe someone else. I was inspired by that friend of Ted Koppel's whose name I cannot recall*, who was sick and blogged and then died, just a day or two before I started this journal. Anyway, I figured if he could write something every day up until the end, maybe I could, too. 

Obviously, I can't. Things got so dicey this month that I went head-down. At one point, when I asked Dr. J if we could get more aggressive in treatment, he asked, "What do you want me to do?" To which I responded, in my head, "I want you to save my fucking life again, idiot."

I had my first treatment in a month yesterday. For various, hideous reasons, we had to postpone, and postpone. Today I feel better than I have in a good while, surely because I've psyched myself into thinking that the medicine will be a blockade if not a backhoe. 

Curiously, I got a lot of work done on the novel. And I got a lit paper written and turned in.

My friend Bloglily inspired the next post. Thanks, BL.

*Leroy Sievers is his name. Blogged on NPR.org.

One week to build up strength

     After four weeks spent mostly in bed, I am suddenly feeling better -- feeling like being downstairs, looking forward to going someplace -- anyplace -- other than the hospital. Relieved that the advice the infusion nurse gave me (blame discomfort on the medication, not on the cancer) seems to be apt: the side effects of the last chemo I had, on Dec. 26, apparently are dissipating. It's not the fentanyl that's had me down, or even the tumor. Now that I have causality, I can plan around it and not worry (so much) about it. 

     What's different is hard to quantify. I am still terribly weak, from being in bed and not eating well. (Lost a couple more pounds in the last four weeks, which made Dr. J frown.) But my stomach does not feel knotted up and I can eat two scrambled eggs without a terrible gurgling, full sensation. Yesterday I ate breakfast; took a shower without feeling lightheaded; tidied up the front parlor; got dressed (including earrings and lipstick); hosted my lifelong friend KK and her sweetheart, who stopped through town on their way somewhere else; ate some salmon M had smoked; played with A; ate a normal amount of salad; had ice cream for dessert; watched a movie with M; and didn't go back upstairs until a reasonable adult time (11:00). In other words, if you discount the two-hour nap after breakfast, pretty fucking close to normal. 

     Classes start a week from tomorrow. My goals are to write fiction every day, and to build up my strength enough to get my ass to campus, park, walk, and be in class from 5:15 - 9:40 (two classes back-to-back on Mondays). 

     Me me me. Yawn. M just walked in sans A (who went to lunch at a friend's house) and with the Sunday NYT. There's a nice afternoon unfolding in front of us, and perhaps I'll have something to say about a subject besides my own damn self in the next post. 

     Here's to 2009.

Book, film, fentanyl, parent tricks!

     I'm reading Revolutionary Road by Richard Yates. It made my wish list because of my writing workshop instructor's high recommendation (he characterized Yates as a major 20th C. post-war literary novelist who has gone largely unnoticed and unheralded). I'm about three-quarters through it, and I love it, both for what it does to me as a reader, and for me as a writer. The story is so compelling, yet not much really happens outside the characters' own heads. All about suburban ennui, middle class angst, the search for greater meaning in work and family life, means justifying ends, and traditional vs. progressive roles of men and women as viewed in the fifties. (If a woman doesn't want children, might she be insane?) Pretty bland stuff. But Yates does the trick of energizing a story that in lesser hands would be a yawnfest by infusing the characters with such specific motivations and actions and flaws that there's instant empathy and, therefore, interest. Even the summary narrative and quasi-scenes sing. Describing the worries of two young children who are, compared to the main characters, only roughly sketched in, Yates puts us in their heads just before they drift off to sleep, "as their toes reach for a cooler place in the sheets." Ah! What a great and telling detail (it's warm in the plain little tract house, they've been in bed long enough to be restless, their worries make them tense) -- a clearly human gesture, so commonplace that the mere expression of it is startling. Beautiful.

     Another point of admiration is pacing and structure. Each character has a rather complex backstory, but somehow Yates slips it in almost between the lines of the forward action. There's very little "flashback" -- a lot of it comes about as summary narrative in the form of in-the-moment thoughts. So tricky, so seamless. I can't express how much I love this book.

     Another inspiration that came my way via Hopie and Andy -- and Netflix -- is the film "Starting Out in the Evening." I hadn't read the novel, but there are many moments in the movie that I am certain come directly from the book, particularly some odd gestures like the graduate student suddenly kissing the old writer's hand; smearing honey on his face; the way they lie side by side, crosswise, on the bed, like corpses. These bits, strung together, pull the characters to life, but it's their motivations -- again, specific, particular, complicated -- that create understanding and empathy. And like Revolutionary Road, nearly all of the "action" is interior: what choices will each person make, and why? How will they respond to each other in light of new information? How will their relationships change? How will they change? 

     I'm a sucker for complicated characters in ordinary situations, and writing that elevates them to individual human status. I haven't written a lick in two weeks, but because of these two influences, the book and the film, I'm jazzed about picking up the next scene of my novel. Not bad.

     Saw Dr. J yesterday, who upped me to 50 mcg fentanyl patches and suggested we take off a couple of weeks before going back for another round of chemo. OK. 

     After five and a half years, I still feel very much a rookie at this parenting business. However, occasionally I stumble onto something that works and makes me feel like a genius. Therefore, I hereby present a Parent Trick:

     M took A to work with him this morning -- she is excited because she will get to sit in on two meetings, which makes her feel very grown up, since "meeting" is the euphemism M and I use when we go somewhere she is not invited. "Miss Amanda is coming over tonight to hang out with you." "Why?" "Mama and Papa have to go to a meeting." Worked for my parents, and so far, it's working for me and M.

     Off to read and, perhaps, write.

     Rough week, physically; fentanyl has already lost its magic -- the infusion nurse says my previous use of it probably has something to do with the speedy resistance -- and it's getting harder to eat. Pain is pretty constant, a matter of degrees. 

     Christmas was nice, although we never did finish decorating that damn tree. Hopie and Andy were with us. Santa brought a microphone for A. Lots of books all around. 

     I'm waking up at night, twirling. Worried about everything, but specifically:

• Getting sicker, and options narrowing
• Finances -- if I'm unable to continue with school in a few weeks, I'll lose my stipend, and then what?
• How my increasing reliance on bed is affecting A
• The mounting pressure on M

     A is tucked in, and I'm going to try to watch a movie with M. The treatment I had on Friday has put me under the clouds the last couple of days, so this will be a test of attention. I hope it's a good flick.

Up and not so running

     M and A dragged our Christmas tree home a week ago. M wrestled it into the stand and stood it upright without my help. (A relative term; typically my help comprises holding the trunk with two fingers while he squirms on the floor, tightening and loosening screws, asking, "Is is straight now?") He strung it with big fat colored lights. Two nights later he unstrung the colored lights, which were shorting out periodically, and replaced them with those tiny white lights that everyone decided during the Reagan Eighties were somehow less tacky than the lights of our youth. That's when tinsel took a mortal hit, too, I think.

     Now, we have a beautiful tree with lights but no ornaments. Strangely, A hasn't been begging to decorate the tree. She's excited about Christmas, but she's not nutzo like Hopie and I were at her age. On the other hand, she's always been able to entertain herself, to be satisfied, with what's right in front of her. Can't find both shoes she wants to wear? No worries, these others will do nicely, and there are two. That's just how she rolls. Nice little presence in our house. 

     I, like the tree, am up but not exactly good to go. Treatment yesterday took everything out of me; we got home at 1:30, I went to sleep and woke up six hours later. Last night I slept 12 hours. I still feel groggy, and there is so much I want to do for Christmas. A should have presents gathering under the tree (right now there are Amazon boxes and, I believe, a screwdriver or two). Hopie and I should be conspiring about brunch Christmas morning -- bagels and lox? Something sweet? Who will provide the champagne for mimosas? Or should we get M to mix a batch of bloodys? Which night would Hopie like to bring over some A gifts, so she and Andy don't have to schlepp everything Christmas morning? So far, none of that. I haven't even hung the excellent, sparkly, and very likely magical kissing ball A made in pre-K last year. It really is stunning. Glitter.

     M's parents are driving to Atlanta to celebrate their new grandson's first Christmas. He will be almost five months old. He is an excellent baby. M and A are at his folks' house right now, about a half-hour down the road, dropping off goodies for the Atlanta contingent. What's weird about that: I had nothing, but nothing to do with those presents. Not even the wrapping. I don't know what M is sending beyond a little something he carved from wood and painted. (M is a talented artist, imaginative and patient.) I ordered a treat for the baby off the Interwebs and had it sent directly. That's it. I feel like I've dropped off the face of Christmastown. Makes me sad.

     Tonight we have our annual secret gift exchange with friends. (I was unsure I'd be up for it, until I went to workshop on Wednesday night, which was at the professor's house and featured chili and lots of wine. It didn't deplete me at all, so I have confidence about tonight.) I'm almost completely unprepared, and have relied on M for help selecting and acquiring the thing. It's 1:30 Saturday afternoon, the babysitter comes at 7:00, and there's still one more element to the present I have to get done before wrapping. Maybe a nap first. 

     So, in summary: Sloggy sleep, white lights, lots to do, lots foregone, lovely children, just a bit more sleep, please.

     Doesn't seem so different from most Christmases, now that I think of it.

Medicine and magic

     The Fentanyl is definitely helping blunt the pain. The cost is full consciousness. Hard to tell yet if part of why I'm sleeping so much is that I'm finally comfortable, or if it's 100% drug-induced. There are other side effects that haven't kicked in yet: all narcotics affect appetite and motility, but apparently there is a new wonder-treatment for that, in the form of an injection. Cause I can't get me enough needles.

     Also saw that the CA125 is, finally, going in the right direction. (That's a blood marker that tends to rise with malignancies, though not reliably. Normal is 0-30. Mine was 60-ish a few months ago, and up to 125 several weeks ago. Yesterday it was back down to 75.) I have been willfully not looking at my CA125, but Dr. J mentioned it on Thursday, and so I peeked at the paperwork after the blood draw yesterday, and even though it is notoriously unreliable -- I mean, like, they tell you not to pay attention to it at all after you've had one round of chemo, and I've had, um, I have no idea how many rounds I've had, ten, maybe? -- it's a spirit-lifter when it's on the way toward normal, like a rainbow, elevating but not substantive, but still, why would they bother counting it if it has no bearing at all? 

     Run-on sentence much?

     A and M are downstairs having an earnest conversation about Christmas tree lights. A keeps using the word "magical," not the schmaltzy kind, but the real-live fairy kind, as in, "I bet those lights are magical." M agrees. I love their voices. 

     

Pain mania

     The psychiatric definition of mania is "profuse and rapidly changing ideas... irritability, and decreased sleep" (Random House Unabridged, 2006). It doesn't mention anything about emotional instability; it seems to do more with cognitive misfirings.

     In any event, I am concerned to the point of sleeplessness (would that be overly concerned?) about my prescriptions for nerve pills and pain medication running out. The more I hurt, the worse it is, predictably. Not only did I awaken several times last night frantic that I wouldn't have enough pills to get me through today, but I dreamt I had run out of pain medication. The label says to take a pill every four hours as needed. Lately, I've been living in four hour increments, with the goal of waiting perhaps four and a half hours, even five -- to prove to myself and Dr. J that I am not yet at the point of needing the ghastly Fentanyl.

     Cancer presents all manner of choices. Would I prefer to be needled in the arm, or in the chest catheter? Would I like to lose my appetite due to chemo or disease progression? Would I rather be incapacitated by pain or by narcotics? The answers are not as clear as you might expect. Catheter-chemo-narcotics seems logical, until you consider what you're giving up. When the nurse draws blood from the catheter, you are very much, undeniably, for all to see, a cancer patient. When you lose your appetite due to chemo, your strength is depleted exponentially -- not only are you unable to eat enough to sustain your body, but the chemo is making its own caloric and nutritional demands, so it's just freaking impossible to keep up, and you start looking like wasted Cancer Girl (or, in my case, Cancer Boy, as my figure is gone and my britches are all satchel-ass). Narcotics relieve the pain, but they also relieve you of the capacity to think, to write, to recall, and to stay awake for stretches longer than the average three month old baby. Driving is out of the question. Wine. Reading a story to A.

     The trick, see, is to hold the need for these choices at bay for as long as possible. Resistance may be futile, but so is drooling one's way through the day.

     My friend Amy (my very wise therapist) reminds me that pain is in itself stressful, and crazy-making. Relieve the pain, she says. 

     I'll pop a nerve pill and consider it. And in the meantime, I will be willfully grateful that I still have choices.

Conundrum

     Ooph. No chemo yesterday due to a fever I didn't realize I had. Also, I had a pretty intense meltdown and called an audible just as Elaine-the-best-infusion-nurse-ever leaned down to access my port (for the uninitiated, which I hope you are, that means just as she was about to stick the IV needle into the catheter in my chest to draw blood for lab work). "Do we have to do this today," I asked. The answer was no, absolutely not, good call, way to take control, take a week off and feel better, we'll re-do the schedule, going to call your doctor, be right back.

     Well, here's the thing: because of escalating symptoms, I am scared the chemo is not working. Yet the nurses and my doctor tell me I haven't been on it long enough for it to do its thing; I have yet to complete a three-week cycle. So, while I'm afraid it isn't working and we're wasting valuable time, I'm also afraid to skip it, and frustrated that my body finds ways to confound our best efforts. First my blood counts crashed, now a sudden fever. And I keep getting sicker.

     Cancer Blows, Reason #973: BORING. The world folds in on itself. All I talk about, think about, write about, is me. My body, my illness, my pain, my blood, my cells. Cancer snares me in a self-perpetuating web of self-involvement, and bores the everliving shit out of me. 

What were we thinking?

     Off to Week Three of the new chemo regimen, and hoping my blood counts aren't too shot to get the medicine. M is taking me to the infusion center, and my friend Amy will meet us there and hang out with me so M can run a thousand errands. His brother is flying in this afternoon to surprise their father for his seventieth birthday, and for the sake of ease, we somehow planned to have dinner here tonight. M has made a birthday cake and hired Chef Bill to whip up a fabulous dinner... but M still has to run to the airport to pick up his brother, pick up the food, get the table set, pick up A from school, etc. How is this easier than going to a restaurant? Obviously we were out of our minds when we planned this. Shit, we still haven't entirely cleared the table of Thanksgiving linens and assorted utensils. Brother is spending the night with us tomorrow night, which calls for some attention to the guest room. I bet he'd like sheets.

     My aim, if I'm feeling up to it, is to help M as much as I can, and possibly do some thinking on that "ideal reader" issue a commenter raised a couple of days ago, and post here later this afternoon. 

     Or maybe a nap.

My body not my body

     Sometimes it's hard to determine if I'm following my body's signals or creating them. It's become a struggle, in the last two to three weeks, to keep a normal schedule. Each day I am a bit more exhausted and uncomfortable than the day before, so I limit my outings, do less, lose stamina, and can handle even less the next day. It's not sleep I crave, it's oxygen, nutrients -- fortification. Something substantial to give me weight, to anchor me to the ground. The sensation I have is that my body is a shell, hard-edged but hollow, and drifting.

     M skipped his own class tonight, left A at home with her sitter, and took me to school. He hung out for three hours while I was in novel workshop, then drove me home. By the time we walked in the door, I felt completely spent: lightheaded, empty, aching. I did nothing all day, literally, in an attempt to store up energy. Marking up manuscripts and writing workshop letters was just ridiculously difficult, draining. I took a shower and had to rest for fifteen minutes before getting dressed -- then had to rest again.

     I catch my image in the bathroom mirror these days and see a woman receding: drawn face, whispy hair, pale eyes. I look sick. I look old and hunkered. I am not old. I wonder if this is how elderly people feel -- is cancer as withering as aging, or more, or less?

     Everyone knows how depleting chemotherapy is. I'd argue, though, that illness itself is the most challenging, the most damaging. It's impossible to feel like the medicine is working when the medicine is making you feel like shit. Or is it the cancer that's beating you up? Is the persistent pain a sign the chemo is not checking the tumor at all, or that the disease is progressing, or possibly both? Fuck all, you see the dilemma.

     Still, fighting through penetrating exhaustion -- there should be a word for this kind of tired -- to do normal things, like going to class, ultimately helps me feel stronger by giving me the illusion of control. Which is all any of us has to begin with.

     Thank God for M.

Steroid psychosis

     What a week. I had chemo on Friday morning, then gave a reading Friday evening. The reading went exceptionally well -- I felt calm, comfortable, and the story was well-received by the 75 or so people in the audience. Very energizing. Then I came home and slept, hard. M's parents came by yesterday and, unlike the immediate aftermath of most Topo Gigio treatments, I was perky enough to hang out with them for a couple of hours. That's major progress.

     You'd think the fact that I'm getting a slightly lower dose of chemo than before (which actually adds up to a higher amount over three weeks) is what made the difference, but you'd be wrong! We also ditched the Decadron, a steroid that helps quell nausea and, incidentally, didn't anyone tell you this?, just a little tip, can bring on the batshit crazies in some huge percentage of patients. When I told Dr. J a couple of weeks ago that for three days after chemo, the world seemed about to end, he immediately suggested we drop the Decadron. But it was the infusion nurse who snapped it into perspective for me and M on Friday: "Steroid psychosis! We see it all the time with Decadron. Google it when you get home." 

     So. While I'm thrilled to know that the source of my... how you say... emotional delicacy was a pre-med, and apparently a non-essential one at that (no horking at all without it, phew!), I find myself in a familiar state of dismay over having lost all that time to crying; over freaking out my family; over assuming, as I often do, that nothing can be done and I must take my lumps. A long-term cumulative effect of sliding health, trauma and chemo -- and I've had "a helluva lot," as Dr. J never fails to remind me -- is fuzzy memory. So I don't recall being out of my mind with Decadron when I was on Gemzar or cisplatin (or whatever it was) last year. M does remember it; when he googled "steroid psychosis" this morning, he said it all looks very familiar, and I am not alone.

     One of my favorite shows on the teevee is "House," as I've mentioned before. Part of what I love about it, aside from the consistently complex characters, is that the medical cases always present the physician's paradox: how to save the patient without killing the patient? I guess the fish an oncologist is frying really are that big; the smaller ones (what's a little psychosis in the grand scheme of things?) don't seem worth mentioning.

     The week overall: a net gain.

New plan

     I had a good appointment with Dr. J today. Good in that he was all, Sure, let's try that! Sounds good! I told him I thought the blood counts crashing a few weeks ago was an anomaly and he agreed to an accelerated chemo schedule. Instead of every other week, we're going for three weeks on, one week off (which apparently is the protocol for Topo Gigio). Cutting back on the Decadron (steroid) to try to smooth out my crazies. And the physical exam was OK, i.e. soft, smooth belly, no apparent -- what? -- lumps? Yik. Anyway, I am more confident when we're aggressive.

     I'm still in pretty persistent pain but my outlook is more hopeful. And I got a swell birthday card from A today, with drawings and declarations of love for Mama. And a cool, original Modern Library edition of Absalom, Absalom! from my sweetheart M, an appropriately Southern gothic choice under the circumstances. And cards and calls and treats from friends and family. Nice day.

Chemo today

     M is going with me this morning for what I hope will be an efficient infusion. My faith in this drug continues to wane because I am not feeling better, I'm feeling worse. Pain is more of a constant than an incidental, and eating reliably causes increasing discomfort. I'm getting to the point where I just don't feel like doing much of anything; going to campus is a major deal even though it's only ten blocks away. Just getting myself into the shower and walking a block to Starbuck's is now something I negotiate with myself every morning. Unless my feet are out in front of me, I'm uncomfortable, so staying in bed seems reasonable. That's not good.

     Next Thursday we meet with Dr. J to see where we are and make adjustments. A year ago when we saw him on Nov. 13, he made the glorious suggestion that we stop the cisplatin, as it seemed to have done its thing. Much celebrating. Next week, I'm afraid he's going to come at me with Fentanyl patches and the news that we've exhausted our chemo options. 

     I'm nowhere near ready to hear that.

So over it

     I haven't written as regularly in the last week or so for several reasons. The Republicans have jumped the shark -- or, more precisely, continue to jump the shark, over and over again, day after day. Just when you think it cannot possibly get more shrill or ridiculous, out comes some random asshole suggesting Palin's big shopping accident is somehow eclipsed by Obama's use of his campaign plane to fly to Hawaii to visit one of the two most important women in his life, the grandmother who raised him, who is on the verge of death. And look, over there is Nancy Pfuckinpooter insisting that oh I can't even tell what evil she is trying to weave on MSNBC today, I'm too weary and disgusted to follow along with these desperate blowhards. Not to mention the candidates, one of whom (and she shall remain nameless) cannot define "preconditions" in the context of international relations or, shit, anything else, and who thinks elitist refers to "anybody who thinks they're better than anyone else." GAH. I am ready for the circular firing squad to commence. Please, God, let the Earth spin off its axis just long enough to create a 12-day rip in the time-space continuum; I'll gladly forfeit the next two weeks if it'll spare the nation this stinking nonsense. Really, am I the only one who could use a nice long nap? Not even my vast supply of nerve pills, generously dispensed, seems to be helping.

     The other thing is that I feel like crap most days, which is not conducive to writing about feeling like crap. I have a chemo scheduled for tomorrow, and I have to say -- bring it on. Very anxious about this week on, week off pattern. As in politics, two weeks is an eternity and the bastards may just have enough time to get the best of us. So, scared.

     We're throwing a birthday party for A on Sunday afternoon, for which I am trying to gather, or at least conserve, energy. For reasons unknown to me or M, she has taken to calling herself "Hip-hop," so the sheet cake we ordered (M usually makes the birthday cake, but we're going low-effort this year) will feature a festive pink Hello Kitty motif and the message, "Happy Birthday, Hip-hop!" I adore my almost-six-year-old girl.

Welcome to the Not So Great Depression

     Oh, I was all set to write funny, but then I turned on the TV and watched the whole goddamn economy crumble in, like, an hour, and now I'm in no mood.

     Brothers and sisters all over the world are in a blind spastic panic, unloading their investments and driving down the markets. Cashing out their bank accounts. Stuffing bills under mattresses. Opening wide to tweezer gold fillings into little cups. Pilfering their own copper pipes. Jesus.

     Rumor at school is that SaPa is coming to our little hamlet for a Hate-a-Thon sometime in the next week. I'm still waiting for her to explain (or be asked -- psssst, Couric: HINT) how Obama will "diminish the prestige of the presidency," while the close association of her own snowbilly lapdog Tard (Todd?) with the AIP will somehow elevate the reputation that W has methodically shredded in the last eight years. Grumpy Old McCain is back at it with the Ayers crap in a shameless effort to salvage a Straight Talk Express whose wheels came off weeks ago and whose smoldering carcass is still stinking up the bottom of the canyon. 

     None of this is enough to really do me in today -- I'm feeling like a shiny new nickel after the bloodsucking a couple days ago. But the cumulative effect, combined with the attempt to demonize, otherize, that one-ize, didja know he's black, wink? the honorable, patriotic, classy Obamas is so far beyond despicable I can't really get my head around it. I've been politically aware since about 1968, and I've never, never been so saddened by overt ugliness such as the McCain camp is launching, and its rabid supporters lapping up like blood-starved hounds. It's gone beyond insinuation to straight-up racism and fear-mongering. [This links to an elegant articulation by Seth Abramson of the real danger and potential legal implications of Palin's inflammatory rhetoric. An informative -- and chilling -- read.]

     Please, Mrs. Palin, explain how this elevates the prestige of the presidency. 

     Sickening.

     Chemo is on for tomorrow; we're going to try alternating weeks and begging the insurance gods to pay for Procrit. 

In the tank

     Well, I have nothing much to say about the VP debate that hasn't been said better by smart people all over the Interwebs. The dum-dums weren't listening last night, they were cooing; I have no use for them. Call me in the tank for Obama, if you must -- the genesis of that suddenly ubiquitous phrase is a mystery to me --  but at least I'm swimming with funny, bright people. 

     M offered to forward to me a Time snippet about why "women dislike Sarah" -- including fallacies such as "she's too pretty," "they're afraid she'll make them look bad," etc. Infuckingfuriating. I can't stand Sarah Palin for the same reason I turned against Susan Allen, long-suffering wife of Republican legislative delegate turned governor turned congressman turned senator turned "rising star" on the national stage who shot himself out of a canon and landed in Macacaland just a couple of years ago. Anyway, as a journalist twenty years ago, I covered his hijinx and caught on but quick that not only is he inauthentic in presenting himself as an "aw, shucks" tobacco-spitting, cowboy hat-wearing Southerner (???), but his wife is equally inauthentic in presenting herself as a button-nosed cutesy nitwit who defers to dumb men. (Not even smart men; dumb men.) It turns my stomach, the winking, the gee-whizzing, the flirting. It turns my stomach because, as a baby reporter with zero experience and blonde hair, I used those same tactics to try to get dumb men -- in my case, the peabrains in the police and sheriff's offices in Chattanooga, TN in 1984 -- to give me the information I needed to file stories. I wasn't asking for scoops; I just wanted the same access the boy reporters got. And every time I ran up against a brick wall, which was daily, sometimes hourly, I resorted to the only thing I knew how to do: I smiled, I flirted, I ingratiated myself. Sometimes it worked, mostly it didn't. I got pulled off "general assignment reporting" and promoted to anchoring (this was at a piss-poor CBS-affiliate TV station; I was 22; it did not escape my understanding that they'd have pulled a monkey off the street to anchor those newscasts, so low were the pay and the expectations). I hated myself for playing the game. I had slimed myself; had betrayed my gender and my mother's example and feminism and was caving to the most insidious kind of sexism. I may as well have slept with the fuckers in return for basic facts of a crime or court case. And now, I feel a twisting deep in my gut -- that old familiar, visceral stomach-turning -- every time I see The Two Faces of Sarah. Tough and confident? You betcha. Fine. Pandering and flirtatious? Wink! "Gee willikers, can ya help me out here? I just don't understand you big strong men from Warshin'ton, DeeCee!" Wink!

     Puke.

     An apt segue to what happened at the infusion center today, or didn't happen. No chemotherapy for me, so in the tank are my red blood cells and platelets. Fuck. First time I've ever been turned away. I have to have a blood transfusion. They scheduled it for Tuesday. I feel like poo.

     And I'm scared I'm not going to be able to tolerate Topo Gigio, and then what?

     Maybe I can summon that witch doctor dude from up there in Alaska to come pray over me.

Upbeat or else

     The New York Times runs an article today about Vitamin C and cancer. It's so confoundingly paradoxical -- and obvious -- that it infuriates me: some new study finds that taking large doses of C to boost the immune system, both to ward against infection while on chemo and to engage the body in attacking cancer cells, makes cancer cells stronger. 

     No shit. The reason this disease is so obscene is that it is literally the body turning against itself. What's bad for the cancer cells, chemo, is also bad for the healthy cells -- so of course it follows that what boosts healthy cells also strengthens and lengthens the life of the fucking cancer cells. How many hundreds of thousands of dollars went into the research that concluded that water is wet? Jesus.

     My oncologist once said to me and M, "Oh, we can cure cancer. What we haven't figured out is how to keep the patient alive while we do it."

     Anyway, reading that article brought me to another NYT article/public discussion about the expected emotional response to cancer, and how damaging those expectations are. I knew when I posted the other night that I am not alone in feeling pinched by this myth that a good attitude is paramount, and reading this article, and especially the back-and-forth of the public comments, shows it's on a lot of other minds, too.

House of Pain

     Something else I had put out of my mind is a rhythm my family falls into when the stress of chemotherapy gets at us: A gets a cold, M catches it and it turns into something big and feverish. This happens almost like clockwork, usually when I'm just starting a new therapy, and it happened this weekend. 

     So far for me, the direct effects of Topo Gigio are minor compared to, say, Gemzar or Carboplatin. I had the crazies, as I reported earlier, and have been sleepy all weekend, but the most curious consequence is hunger. I'm ravenous, mostly for comfort food like M's homemade bread and split pea soup. As with other drugs, certain foods are so unappetizing I can't mention them, but bland things like crackers with butter, potatoes, rice... make way. I've been remarkably clear-headed since the mini-breakdown Friday night, which is unusual and, of course, welcome. Yes, I sleep a lot, but in between, at least I'm not fuzzy or dotty. That I know of.

     All that to say: of the three of us, I'm probably feeling perkiest. A is overcoming like children do, but still not her usual self, and M is stoic and miserable. 

     And so the ill effects of my illness spiral outward, knocking down the people closest to me. For me, this domino effect causes the most distress: the most worry, the most fear, the most sadness. Goddamn it all.

Some things I'd forgotten about chemo

     Went in yesterday, after a nice, calming cranial-sacral massage from my friend Julia. Just walking into her studio makes me feel like I'm being taken care of: she always has yummy-smelling oils going, and puts on my favorite music without asking. It's very soothing and centering. Julia and Amy are part of my ad hoc E-Team; without them, I know things would be very different, probably intolerable. Their presence in our lives and in our home when we'd fallen into the darkest trenches last year -- it was a light, a dependable rhythm. I wouldn't be here without them.

     So then, it was off to the infusion center, where our favorite nurse (and friend) Elaine took good care of me. All the nurses came in to give hugs and say, awkwardly but plainly, that they were glad to see us, though were sorry I was back. Everyone asked about A and we will be kicked out of the place next week if we fail to bring pictures.

     It was a little disconcerting to be such an oldtimer that I knew the routine; it was almost like I hadn't gotten a ten month break. Everything was familiar and expected. Tapping the port, hoping for a decent blood return to indicate it's not clotted, and to draw blood for the CBC. After the numbers come back, it's showtime, with premeds: Zofran for nausea, Dekadron for I don't know what (it's a steroid). The Zofran makes me lose my mind, which manifests later in the day... I had forgotten what a crazy-making drug that is for me. After some hydration, the tiny packet of topotecan is hung above my head and drips for thirty minutes. No allergic reaction, thank God (was allergic to Taxol my first time out -- nurses were calling for the crash cart before someone yanked the line out of my arm -- yikes!). Then we were done. In and out in less than three hours. Not bad. My friend Amy brought me home, and I slept until about 7:00. 

     That's when the fun began. I woke up with a horrendous headache, weeping uncontrollably, over nothin'. M sent my sister upstairs and, as always, she soothed me and reminded me it was the medicine. She rubbed my head and nerve pilled me and we watched Chris Matthews screeching at anyone who could a word in edgewise, and I started to feel better by the time A came up to get ready for bed. She reeeeeally wanted to sleep in our bed again (second night; Amy says a second round of separation anxiety is typical when they start kindergarten and are staring down the barrel of being six) but M got her into her room and read her a story, Don't Let The Chicken Ride The Bus!, and they were done: heavy breathing, not a peep, weeee! She's still, Saturday morning, wearing the giant Mama sleep-shirt I loaned her so she could feel like I was in the room with her. I adore her, and often consider eating her.

     Today I'm planning to be quiet and listen for side effects. That, or go to brunch with my sister and some friends followed by a political rally. That sounds reasonable, right? 

Topo Gigio

     And the winner is... topotecan! Yes, it was a late entry into the lineup, a definite dark horse, a come-from-behind, an upset. To flog the flimsy metaphor until it wimpers, the wimpy little has-been outpaced the rest of the pack to win decisively in the final stretch.

     We start tomorrow.

     Let's think about topotecan. It's been around forever, forever comprising my direct experience: at least eleven years. (Before me, beyond me, there was nothing.) Its side effects are said to be relatively minimal. It attacks cells by interfering with their growth; they don't grow, they die. It whacks out the blood counts, but I don't know of a drug that doesn't. And its most appealing feature is that it is a quick infusion of thirty minutes -- none of that hours-long Gemzar nonsense -- meaning I should be out of the infusion center in a few hours tops (it all depends on how quickly the lab can do the CBC, which varies wildly at the hospital where the party happens.) Three weeks on, one week off, restart. 

     The bad news is that I have an illogical (I'm sure) regard for topotecan as a lightweight, last-ditch, ineffective hail mary that only gets pulled out when it's pouring rain under the stadium lights, the fans have left the bleachers, and the coach from the visiting team refuses to just run out the clock so we can go the fuck home already.  

     In my head it's the... wait for it... Sarah Palin of chemotherapy.

     Why? How can I have such a strong opinion and weak expectation of a drug with which I've never rumbled? It originates with the very, very bad idea (for us) to attend a cancer support group/information session in March 1997 at the hospital. You know who goes to those things? People who've just been diagnosed, and people who are on their way out the door. I'd had surgery on Valentine's Day; I don't even think my hair had left me yet. Anyway, M and I were young -- I was 35, he was only 26 -- and we didn't realize how fresh we were into this thing. Compared to us, everyone else looked old, sick, scared, and angry as hell. 

     I remember this woman sitting next to me, fiftyish, having been through the fuggin' mill, skin blotchy and hair thin, who was firing questions at the doctor as though it were a private consultation the rest of us were being allowed to sit in on. She wanted to know about intraperitoneal chemotherapy (the "bellywash" where they skip the veins and put the weed killer directly into the abdomen, yik, never had that done), she wanted to know about why her CA125 wouldn't come down below 62 (I remember this very clearly, curiously), she wanted to know how she could lose the extra sixteen pounds she'd put on, and she wanted to know how long the topotecan would work. I remember the oncologists' answers: it's not appropriate for the type of tumor you have; I don't know; eat better and get exercise; I don't know. There was another woman, there with her husband, the two of them looked desperate in different ways, she impossibly thin, with waxy skin and wide sunken eyes, he with twitches and stutters and a voice so soft it didn't matter, in the purest sense, that he was asking questions. "Topotecan. We're moving in that direction. It's the last thing we're going to try; it's our last option. What are the chances?" Meaning what were her chances. 

     These are questions I will never ask; statements I will never make. I know now what I didn't know then -- that the white coats are just for show. Oncologists are alchemists, fooling around with beakers and calculations and elements and hoping they don't blow up the lab. They don't have any way of knowing, so why ask? Why let someone else plant the idea in my head that I have some percentage of life left in me? They don't know. It's a good thing I know they don't know.

     So, yes. Topotecan. Henceforth to be thought of and referred to in our house as Topo Gigio, everyone's favorite imp of an Italian clown. See his antics? What a scamp!