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.

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.

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.

Pulling my hair out

     Figuratively, literally. 

     I'm going to miss the first hour or so of the debate tonight due to novel workshop. My money is on McCain raising the Ayers thing, using the same transparently flawed logic he has brazenly tried to advance for the last ten days: he'll claim he doesn't care about some "washed up old domestic terrorist" or Obama's gay Connecticut marriage to Ayers, blessed by that scary Rev. Wright who hates America, but that the American people of whom Obama is not one deserve to hear the truth and that it's a question of truthfulness and truthiness and truishness, which ryhmes with Jewishness, which reminds him, did you see that the socialist Obama's own Negro supporter, Jesse Jackson, is warning that the terrorist Obama administration will abolish Israel from the face of the earth, and every grandma and grandpa in the Sunshine State had better run for their lives? I'm just sayin.

     Elsewhere, from atop my head, my hair continues to flee. Trying as desperately as my man Joe Biden to sidestep the combover. I've asked M to let me know when it's too sketchy to ignore -- when the part is a bit too wide, too white -- so I can avoid embarrassing myself and everyone else and put a hat on already.

     Was all weepy and hurty yesterday. I think it must have something to do with the decimated blood cells... I felt tres fragile all day, and fussy last night. Keeping up with economic and campaign news didn't help, but I'm a junkie. Today's better, me-wise; the economy persists in sucking out loud.

     And the infant mortality rate is, shamefully, higher than that of 28 other countries.

     And the Dow is down 735 points.

     And we'll all be eating beanie-weenies and bark inside a month.

     But, yeah, come on, McCain. Tell me all about Bill Ayers.

Well, shit.

     Took a shower this morning, and after drying my hair, noticed it all over the bathroom. I'd like to report that I had the blower set 0n PowerBlast(tm), but that's not the problem.

     Why is this so upsetting? I've lost my hair too many times to count; each time I fall apart. I mean, of all the things to worry about...

     There are some things that distinguish this occurrence. First, I guess I was under the impression from my doctor and the infusion nurses that hair loss is not a sure thing with topotecan, that some people don't lose any hair at all. And because I always assume I am the exception to the rule (for whatever reason), it took me by great surprise to see it blown all over the floor. Second, I haven't told anyone at school about chemotherapy; I don't know how many people even know about the cancer (I was a skinny pixie with a close crop when I started last fall, but my hair had grown in to the point where it looked, I thought, like a fashion decision). Now I'm going to have to explain no hair. Without coming off totally self-absorbed. Fuck.

     Third and by far most important: A has been waiting for my hair to "grow long" for as long as she can remember. (She was only a year and a half old when I got sick again in 2004.) Her hair is down to her bottom, and wild. Naturally, she wants my hair to look like hers, wants to be able to braid and bow my hair, to use the same "products," as she calls conditioner (where do they pick up the jazzy lingo?). Now, at age 5, she will need me to explain to her why I am taking medicine so powerful it leaves my head quite bereft. And so we usher in the conversation about Mama being sick, again. Doublefuck.

     At the moment, my hair is chin-length. Crossing my fingers that I won't lose all of it -- that it will thin, but only to a point, and that I may be able to get away with a super-short boy-cut. And not have to explain anything to people at school. And when A asks why I cut my hair, I will tell her, gently, gently, that some new medicine is making my hair misbehave, so it's better that I keep it short for a while.

     I've never worn a wig, and won't. Baseball caps in summer, scarves in winter are my speed. Still, regardless of what I do, I look like the Kancer Kid. People treat me differently, look at me differently. Know more about me (or think they do) than anyone has a right to know. It's not the loss of hair, it's the loss of privacy that is so upsetting, no matter how many times it happens.

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!

Pickin' my poison! (This is not a post about Palin'.)

     Gosh, it's time to decide which chemo to try! 

     

In this corner, we have Cisplatin, a quiet, light-on-its-feet option that is deceptively powerful. The pros:

• Worked wizz-bang to take down a big fat bellyrat not once but twice (aaaaaahhhhh... and the crowd goes wild)
• Most side effects minimal; a little joint pain, a little hair pulling, nothing you wouldn't expect in a match like this

     The cons:

• I last engaged Cisplatin to work its quiet magic 11 months ago; does it have the wherewithal to thwap again with the same intensity and smooth efficiency, or has the sly, shape-shifting Chimera that is the tumor become inured to Cisplatin's many charms?
• It's a nerve-beater; my tingly little fingers and toes are already numb... can they withstand more punishment?

And in this corner, that clumsy old monster, the Cyclops-like Carboplatin. Nothing subtle about this big galute, a first-line footsoldier weilding a mace and a pack of Marlboro reds. The pros:

• I'm checking with my friend Amy on this (who somehow, over the years, has committed to memory every surgery, treatment, dosage, and side effect I've ever endured... and in the right order) but I don't think I've mixed it up with Carboplatin since I was first diagnosed in 1997. That bodes well for effectiveness.
• I'm sure there's another plus to this heavyweight, but I can't think of it at the moment.

     The cons:

• Oy, with the side effects. This thing attacks the cancer and, for good measure, rips out every white cell and platelet in my tired little bloodstream. Exhaustion. Loss of appetite. Not to mention baldy-bald-bald-bald. 
• I don't want to be a conspicuous cancer patient, i.e. skinny, bald. I've done that too many times to count. I always gain weight; the hair always grows back. I always hate it. 
• I just spent A's college tuition on my hair.
• Did I mention I don't want to lose my hair?
• Also, more importantly, the low blood count thing means hypersensitivity/proclivity to infection. "Stay away from people with colds," the guidelines say. I'm a graduate student with a kindergartner at home. All I can do is laugh at that advice and cross my fingers that I'll be able to finish the semester, keep up with A, and die of something other than cancer or a head cold many, many years from now.

     M and I are going in to talk with Dr. J on Thursday, and in the meantime, I am mindfully thankful that I have options. 

Memory for shit

     One of the most insidious side effects of cancer therapy is "chemo brain." It may mean different things to different people. To me, it means:

• Scattered attention
  
• Inability to recall short- or long-term experiences, including (mercifully, perhaps) details of past therapies, names of drugs, treatment regimens, surgeries
• Inability to remember (unmercifully) whether I liked what I ate for breakfast yesterday enough to order it again, where I read that really interesting article about caregiver fatigue, who was on John Stewart last night, and what I've done with my car keys
• Failure to recall what I'm writing

     That last is a real pickle. Just try drafting a novel when, each morning, you have to reintroduce your characters to yourself. Fucking hell.

     I blame it on chemo, but maybe my brain is atrophying early. Maybe I have early onset dementia. I'm only 46; maybe I just don't pay attention.

     Or maybe it's my psyche's clumsy effort at sifting too many mindbending stimuli. Like the idea that I'm mortal. That I can't vanquish the disease by force of will. That there are things beyond my control. That the therapies, for all their apparent sophistication, are really just barbarous shots in the dark. Let's cut it out. No? Let's put some poison on it. Oops. Looks like that was maybe a little too much.

     Feh.

     I have class tonight. I'll have to bring every thought I've ever had about this novel, in writing, so I can explain what I'm doing with this book. So I can remember. So I can live.