Sunday, May 21, 2006


This experience has made me a whole lot more interested in Terror Management Theory. This is a psychological theory that argues that humans are motivated by a fundamental existential anxiety--basically, the fear of death. And all sorts of processes, both good and bad, might reflect the influence of this fear. So, we strive for higher self-esteem as a buffer against death; we denigrate other groups of people as a buffer against death; we seek status as a buffer against death.

In the first days after my diagnosis, I would tell you that I wasn't thinking I would die. But I was hard-core into terror management anyway. My identity became really important to me--when I'd go into the doctors' offices, I'd want to be dressed for work, and I preferred reading journal articles to more mindless, comforting fare. I'd want to be dealt with as a professor, not just as a patient. It made me feel more protected, in some ways; it made me feel less helpless. And I really think that it was fundamentally an existential concern. Just as, throughout life, we accumulate possessions and positions that seem to cocoon us from danger, in my early days of grappling with a new, unwanted identity as "cancer patient," I clung to the trappings of strength and status.

And in more recent days? Well, I can't say that the desire to be seen as "professor" over "patient" has lessened, but when I go to the hospital for treatment, my priorities are comfort and distraction. I dress in my most comfortable sweats, bring along DVDs of kids' movies (Harry Potter--thanks, Alison!, Ice Age, Finding Nemo, The Incredibles), and eat popsicles. It's not that I'm any happier with the identity I didn't ask for, but having poisons pumped through a needle into my veins has pushed me closer to the raw state of existence. Many of the terror managing strategies have dropped away.

Am I less concerned with self esteem, less likely to derogate other groups? Well, I'm not sure about that--I worry about my (fake) hair looking good and I still resent Republicans. On the other hand, I just can't care too much about comparing my appearance or accomplishments to others' right now, and though gossip is a fun distraction, some kinds of derision just seem too trivial to bother.

The fact of mortality has become much more salient, even though I do think I'll be cured. And with that fact comes an awareness of the laughability of our little efforts to be Safe. I think all of American society is designed to make us feel invulnerable (think gated communities, Hummers, resistance to oil conservation...hell, boob jobs and Sephora), and we've evolved a psychology to match. But something like this reminds you that all the protections meant nothing. Ultimately, none of us will be Safe. Money and status are ways of distancing ourselves from that fact, but (so far, at least) even these buffers haven't proved effective in the end.

Saturday, May 20, 2006

Hair obsession

Really, this is just the most traumatic part of the whole thing in a sense, so forgive my fixation on every minute progression in the hair process. Here's the buzz cut we gave me yesterday. I still have this much--it's hanging on pretty well, though I wore a scarf to the beach today and the wig to dinner with friends. Anyway--more butchy than I would choose for myself, but not as bad as I'd feared. Yet.

Friday, May 19, 2006

It kinda hurts coming out

Remember a time when you've had a really bad sunburn on the top of your head. If you don't have thin hair, like mine, you may have lucked out of this experience. But if you've had it, then remember what it was like to pull a comb through your hair--how every little strand tugged at your burned, achy scalp, and you got a whole chorus of complaint when you tried to shift locks from one side to another. Remember that? That's what it feels like when chemo kills your follicles, and some of the hair is giving up and throwing itself overboard, and the rest is hanging on with nails dug in, refusing to go yet. Maybe it helps to ease things a bit--it'll be a relief when my hair isn't so painful anymore.

Shit hits fan

So yes, maybe I'm one of the lucky ones, but that apparently doesn't translate to a "get out of jail free" card throughout chemotherapy.

Yesterday at dawn I woke up from a very pleasant sleep, toddled to the bathroom, climbed back in bed--and was hit by a wave of nausea that threatened to send me running back to said bathroom with great urgency. I sat up, and my stomach settled a bit, but clearly I wasn't going to be able to go back to that pleasant sleep.

After popping a nausea pill, I went downstairs to the couch, where I could prop myself into a seated position and go to sleep. That worked for the next several hours, actually, punctuated by a trip to the medicine cabinet for the backup nausea pill, called for when the first one can't do the job alone. Noah came downstairs in the AM and I "got up," which means I began hanging out on the couch awake for the day. And that's pretty much all I did--watched TV, played on the computer, read mindless things, and sat there mostly-upright, vigilantly attending to my vestibular system, taking pills as soon as the required 4 or 6 hours had passed, and trying not to feel too lousy. In fact, I never had to pray to the porcelain gods, so I still think this was milder than it could have been. But I felt like crap all day. By nighttime, the nausea was under control and I went to sleep in bed again. And slept all night--aaahhhh. Today the tum is OK again.

But then there's issue #2. On Wednesday, when I washed and brushed my hair, the usual few strands that come out in fingers and brush had noticeably multiplied. It was pretty clear that The Hair Loss had begun. But the loss rate was small enough that I did nothing. Yesterday, the hair was coming out more seriously, but still not so much that it seemed time to shave it. I didn't wash it (yuck, I know) and stuck it in a ponytail, so that any loosening hairs would be caught by the band.

Today I got in the shower and wet my hair, and when I pulled my fingers through, I came up with something well beyond "strands" of hair--something approaching a "lock" of hair. Argh. After the shower (still didn't wash it--that would have been like a massacre, I think), I put all my hair in a ponytail and Noah helped me cut the ponytail off. Then he straightened all the ends for me. Now I am sitting here with about ear-length hair, feeling it dry and lift from my scalp, feeling little strands blow softly. It's a very pleasant feeling. I'm trying to soak it all up, because I suspect that by the end of today--at very latest, tomorrow--we will have to pull out the razor and buzz it all off. That will be depressing. It's already a little sad.

The consequences of the cure--I dodge them a bit, but ultimately I have to face them. And the last couple of days, I've had to face a little more.

Tuesday, May 16, 2006

Chemo 2

I'm lying on the couch with the laptop. Chemo was fine today. Blood test first--all my counts were well within normal, and even pretty close to my counts from several weeks ago before any chemo was given. Only noteworthy thing: very long wait. Noah finally had to get up to check, and was told that they had called us a half hour earlier (though neither of us recalls hearing or seeing anyone--oh, well.)

Oh, and a second noteworthy thing was that Noah went out just before my adriamycin drip to try to find me popsicles. We keep trying to bring popsicles, because we've read that eating them during adriamycin helps to prevent mouth sores. Last time, they were total mush by the time I got them out. This time, we tried a much more aggressive freezing system, but had the same problem. So he went out to the little campus convenience store, and finding none, he took a walk pretty far from the hospital, until finally he found a place with really good Mexican ices. He made it back in time for the 2nd half of the drip, and I had a lime and a coconut. Mmmm.

We got home around 6pm after picking Kibble up from doggy daycare, and we went to a low-key restaurant for a meal, and now we're back home. I'm wiped out, though it may have nothing to do with the chemo--I worked really hard this weekend and yesterday (built Kibble a sandbox and did a lot of gardening, plus some actual school-related work) and probably just pushed too hard. Anyway, I think I'll watch Jon Stewart and Stephen Colbert, and then go to sleep. But again, I'm doing OK. My hair is still attached (oncologist and chemo nurse both warned me today that it faces an imminent demise). No nausea. I'm one of the lucky ones.


Saturday, May 13, 2006

Acupuncture hurts like HELL

...when there's a lot of toxic crap in your body. Just thought you'd like to know.

Hair Watch 2006

My hair is still hanging on.

The oncologist and her nurse both told me that I should expect the mass fall-out some time around a week and a half after the first chemo. Well, the first chemo was a week and four days ago, so I think we are right there. Some women in a support group said theirs stayed put for about three weeks, and I found a blog by a woman whose hair started coming out after two weeks and two days.

So it could literally be any day now.

About four days after chemo, I did start noticing that my hair was looking limp and dull. It's really dark and lifeless--no shine or glow at this point. Like the light is absorbed and can't get out. It hasn't really gotten worse since then, but I feel like it's just dying in place.

And in the past couple of days, my scalp has started tingling and burning in a new and unfamiliar way. I have read that the hair loss is associated with this kind of tingling and burning.

This is definitely one of the scariest and most distressing steps in the whole "process." I am really not looking forward to it. But I am at least prepared. I have a wig, a couple of turban-y hats (the Cancer Patient Look), some soft caps (one is pictured above--thanks Mom!), and a bunch of nice and funky scarves that were sent to me by the friend of one of my MBA students who just finished her own treatment.

From what we've heard, you know when the hair is going. You might run your fingers through it, and you come away with a handful. Or you see a clump lying on the pillow. Or you brush along the top of your head, and suddenly there's a reverse Mohawk. The standard advice is, once the first clump goes, shave it all off. Not just GI Jane, either--more like Captain Picard. So that's the plan. It will be painful, no doubt--especially since, with 10 days under my belt since getting chemo, it seems like surely I could have chemo and keep my hair.

Yeah, I know better. Every time Noah or I touch my hair, there's a moment of suspense: will it still be attached? So far, the answer's been yes. But not for much longer.

Wednesday, May 10, 2006


...have been enabled. Please feel free to talk back!

The cancer care schedule

I'm applying for a year's extension on my tenure clock. That's been recommended to me many times over, and though I get a lot of psychological comfort and benefit from working on research projects right now (hey, I can write on a laptop while lying on the couch!), it does seem like my productivity will be taking a hit.

Here's what it takes just in terms of formal appointments to handle cancer. I'm giving my schedule in a 2-week block based on chemo treatments. So the first day is always a Tuesday, if you care. And this assumes nothing goes wrong and I never have to go in for anything else.

Day 1: Chemo (all day at USC-Norris Cancer Hospital)
Day 2: Back to Norris for Neulasta shot in my stomach
The Wellness Community (TWC) Support Group
Day 4: Physical therapy at Cedars-Sinai (post-operative)
Day 8: Acupuncture
TWC Support Group
Day 10: Physical therapy

Driving times:
Norris - 45 minutes to 1.5 hours, depending on traffic
Cedars-Sinai - 35 minutes to 1.25 hours
Acupuncture - 15 minutes
TWC - 15 minutes

Up to now, there have also been extra appointments for looking at wigs, buying the wig, having the wig styled, going to my landlady's support group, going to a TWC intake meeting, etc. Fortunately, these drop off now and I can plan on the above. It is really nice when I have a few days in a row with no cancer-related appointments! Meetings at school never looked so good.

Then, day to day, there are various things I'm supposed to be sure to do, to promote health and healing and to combat side effects. These are:
  • get up by about 10-11am (I know, play me a violin)
  • take Chinese herbs 3x a day (for side effects)
  • take expensive drugs 3x a day (only just after chemo)
  • go on at least a 1/2-hour walk
  • do my series of post-surgery arm stretches
  • every other day, do a set of hip and leg strengtheners (these areas get weak during chemo, and can be in pain due to Neulasta)
  • get to bed by 11:30-12
These are a lot of things that demand a share of my time and attention, that are not necessarily how I want to spend all that time and attention. Of course, they are also all health-promoting things, and in some ways it is very nice--almost a luxury--to be "forced" to tune in to taking care of myself, and doing things that put my body and life first.

Still, these are not the activities that tenure rewards. So year extension, here I come.

Monday, May 08, 2006

What chemo is like

Does anyone want to know this? Well, here goes.

The battle analogy story told most of it, but to be more specific: Going to chemo will start (after day 1, when it wasn't necessary) with a blood test, to be sure my white & red blood cells and platelets have recovered from the last time, so that chemo won't really hurt me. I'll have to wait around for at least 45 minutes until they call me to the day hospital. Given that I waited over an hour on the first day, with no blood test, I suspect this wait may be much longer.

I go into the day hospital and am seated in a pretty comfortable recliner chair. The nurse gives me anti-nausea meds (pills) and starts the IV. Saline flows for a while. Once my system is sufficiently bolstered against nausea, the nurse comes back with a pink bag of fluid and a needle, and pushes Adriamycin into the IV for about 1/2 hour. Then she hooks up a clear bag of fluid to the IV and turns on a machine that regulates its delivery, and that flows for the next hour. And then I get disconnected and leave.

After the first treatment, I felt fine for more than 24 hours. A little odd at times, but basically normal and energetic. We went out to dinner that night (of course) and I ate normally. The next day, I had a very full schedule, and all day I just felt fine. Then, at about 10pm, I crashed. Hard. It was like pulling the plug from a bathtub full of water--the water all rushes out and there is nothing left. I had my head on my arm at the dining room table, and went up to bed pretty much right away.

Then, for several days, I was tired and sluggish, and my stomach was finicky. Whether we ate out or at home, I might think I was going to eat item A, and then a few minutes later the thought of A was just horrible. I chose menu items that I never choose, and bypassed my favorites. I would find something I could eat and chow down ravenously, and then--midbite--my stomach would announce that it was done now, thank you very much, and I had to stop. Or else.

I've heard a "good response" to chemo described as something like a bad hangover. This strikes me as just right, though I don't have a ton of hangover experience. But the general sluggishness, a tiny headache sometimes, a low tolerance for minor annoyances, and more than anything that finicky stomach--those are just what my bad hangovers have been in the past. I can live with it. It's not exactly pleasant, though. And in the interests of full disclosure--Noah claims that the aforementioned "low tolerance" is actually a very short fuse and that I'm temperamentally quite difficult. I, of course, disagree.

Anyway, as of two days ago, my tummy got a lot more easygoing (more food, more variety, less weirdness in selection) and my energy went way up again. Week 2 started yesterday (that is, no chemo) and so maybe I feel better in the second week. At the same time, my body is fighting hard to get rid of all the toxic junk right now, and it won't get to finish the job by next Tuesday, and then more will be put in. One step forward, two steps back. This is why they say the effects cumulate--I'll feel worst at about weeks 6-10, when the current drug mix (AC) is at its highest dosage. Great, something to look forward to.

Tuesday, May 02, 2006

First dispatch from the front

Reveille at 9am. Out of the bunk, a hot shower, the most comfortable fatigues, a quick chow in the mess to ensure a full stomach. A full stomach is the first piece of ammunition. Also, much drinking. Filled the canteen and drained it several times over throughout the day. Fluids are the second piece of ammunition. Both pieces, check.

We drove the humvee to the battle zone. Dropped off the K-9 at the safehouse on our way out. It was a slog through the heavy traffic of a hazy LA morning.

Arrived at the zone around 11:15am. Checked in with the sergeant on duty and sat in the staging area, surrounded by our gear. DVD player, check. Cooler with popsicles, check. Blanket, check. Reading material, check. The minutes dragged on. Dread became palpable.

This is the kind of moment when some soldiers might go AWOL. Might cut and run. But there was a battle to be fought. We pulled out more ammunition: Seinfeld DVDs. Watched two episodes of Season 3. Nothing heavy, just a little doobie for the FNGs.

After about an hour, a captain arrived to escort us to the front. Better than expected. Instead of lining up the ranks row-by-row, the strategy was to give each troop their own territory, where they could do combat one-on-one. This soldier had a recliner, and her backup man had a regular padded wood chair. A bit better than the muddy trenches, indeed. The fight started quickly. Four bullets were fired against the Nausea forces. Then the only blood-producing casualty of the day: one quick volley, and the first line of attack was opened. Pretty soon, our forces were pouring through the vein to seek out and destroy the insurgent cells.

The captain commanded the first half-hour personally, keeping up a steady barrage of fire. She used the Adriamycin arsenal, feeding the red ammunition at an even pace. This was where I was supposed to use my popsicle protective gear, but it had melted in the searing heat. Oh well. The captain kindly provided crushed ice and more iced tea for me. Not quite Kevlar, but hopefully it'll prevent Cancer War Syndrome in the days to come.

After the Adriamycin barrage, the captain set up an automatic artillery, firing Cytoxan at the enemy for the next hour. Throughout, I made my own salvos--working the "high spirits" battle by watching Ice Age and Battlestar Galactica. Pleased to report that I didn't bug out or desert. And no major casualties. Some sinus pain and a bit of a headache--not much to complain of, given the big guns that were firing wildly all around me.

That was the end. Fire died down right away once the last barrage ended. The whole time, there was not a peep from the enemy. Suckahs!! You'd think Saddam Hussein had trained their army.

And I walked away without so much as my arm in a sling. A bandage around my hand, where the first volley nicked me. Pleased to report no other wounds. So far, we've retired to the mess and enjoyed some pretty good chow. All regions reporting in "calm," no insurgent activity. The all-important midsection is quiet. It's under curfew, and the citizenry appear to be sleeping calmly (when not, they are cooperating with our forces). The northernmost region reports a few transition pains, but nothing that our specially-trained Advil Platoon can't manage. And we even patrolled the perimeter with no lagging or malingering.

All in all, the first day of engagement went fine. Will report on injuries, if needed, in the coming days. Tomorrow, another artillery barrage at 11am (the Neulasta stocks) will get sent out to form a protective barrier around the White Blood Cell division. And then in the afternoon, we bring out the special "acu" division that will shore up all defenses, including armor and protective gear.

Next major engagement in 2 weeks. Over and out.