Nurses really matter.

The nurses matter because, after the doctor writes her orders, they are sent over to nurses who actually do everything. The nurse assigned to you for the day will be the one to find a vein, to stick a catheter into that vein, to sit and push toxic chemicals through the catheter into the vein, to check on you to be sure your arm is not swelling or reddening and your face isn't flushing. She'll talk to you and comfort you and explain all the side effects and then, later, take out the catheter and wrap up your hand so it doesn't bleed, and send you home.

The good ones get the needle stick on the first try.
The bad ones moan about your inconvenient veins and muddle around a bit under your skin...with a sharp object.

The good ones know that all the fluids, both hazardous and harmless, can hurt going in. So they set saline drips to be relatively slow, and sit with you to push ver-r-r-r-r-ry slowly, by hand, anything that is a real problem.
The bad ones have somewhere else to be, and just shove that plunger down quickly.

The good ones think about how your arm should be placed on its pillow, how the lines are draped (to stay out of our way); they place their warm hands, for heat, on your forearm when the chemicals are stinging.
The bad ones figure you can do all that yourself.

The good ones remember, week to week, that you are afraid of needles and don't like to watch that catheter being inserted. They remember that you don't want a warning, thanks--just stick it in while you look at the opposite wall. They notice when your anxiety is getting worse each time, and making your stomach upset for no other reason, and they recommend Atavan to help out, and then contact the oncology staff to get it prescribed. And then they give you a whole pill.
The bad ones don't notice any of this stuff, although they'll let you look away during the needle sticks.

The good ones stand there with nothing else to do, really, for 15 minutes to watch you and ask you questions when you get a new drug. Do you feel funny? Any changes? When you report that yes, on this new drug Taxol you are experiencing a tightening in your chest (harder to breathe) and these bizarre, spasmodic, pulsing pains in your lower back, she runs to the pharmacy and bangs on the window to get your Benadryl, and then slowly, slowly, pushes it into the saline drip (having turned off the Taxol for a while) and soothes you as the symptoms subside. She lingers more, waits to be sure you feel okay. When she restarts the Taxol (because that's what they do--no one is deterred by a little allergic reaction), she watches carefully again, asks all the questions, smiles at how groggy you're getting thanks to Atavan and a huge dose of IV Benadryl, doesn't leave until you have taken in 25cc's and it's clear you'll be OK this time.

The good ones are off shortly after 4, but say they can stay until 5 today (since your allergy problems didn't even resolve until after 4:15) so they can keep checking. They make sure to hand off smoothly to the nurse who will stay late, until almost 8pm, since your drip is 3 hours long and has to go slowly at first.

The good ones smile and laugh, tell you funny stories about movies they went to and happy stories about their upcomming weddings. They answer all questions with confidence. They have their share of complaints about the hospital's current bureaucratic admin changes, but they focus on the positive: "Change is always hard; we'll just learn it and we'll be fine." They tell stories of their own families' cancer histories, or their own; they talk about their years of experience giving chemotherapy, and why they do it, and the best ones have pet peeves that involve shirking on quality patient care, so you know you're in good hands.

Today's nurse, Lilia, who is the best nurse and whom I request, now (having learned my lesson), every time--told another story of a patient who was rude to her, who dropped her newspaper and told the doctor, as he bent to pick it up, "Don't worry--the girl will get it." She meant Lilia, who heard it and got all her ire raised. What a fool was this woman. She is still coming in to USC, and now the very best oncology nurse there--the one who can make sure you don't hurt, when let me tell you, other nurses make you hurt--doesn't like her. What a stupid and avoidable mistake.

The nurses make all the difference. Lilia stands between me and repeated pain. I feel so lucky to have found her (on my first day of chemo!) and so smart to continue requesting her. I hope she is paid extremely well, and I'm sure she's not. But she'll be able to look back on her life, and say honestly and deservedly, "I lived well, I did something important, I made a difference."

Aloxi is my friend

It's not like I've felt as "good" as in the first two cycles, but we've managed to avoid the horror of the third cycle, and I'm sure it's thanks to Aloxi, the new anti-nausea drug. Well, that and the acu-stimulant wristband that Rick and Joanie sent me (thanks, guys!!), which got me through a couple of days when I think I'd have had the nausea otherwise.

Supposedly, I get to actually get better now--I'm done with AC, and the Taxol is not supposed to cause nausea. So I am looking forward to a positive trajectory. It's amazing how much hope that provides.

Finished with AC!

Well, I am halfway done with chemo.

YAY!!!!!

I had my last AC treatment yesterday, and since the next drug (Taxol) is not supposed to cause nausea, it is really a positive to make this transition. Not to mention that the number of remaining treatments will become smaller than the number completed--definitely good for the psyche.

When I reported on my tough experience last time, my oncologist decided to switch my pre-chemo anti-nausea drip to a new one called Aloxie (sp??). So far, that one seems to be working pretty well. Of course, it usually takes a day or two for misery to kick in, but I'm in less need of my nausea pills this time. Crossing fingers.

But seriously...halfway done. Finished with AC. Those are happy things.

Feeling better

Just a quick note to say that finally, a week after chemo, I feel a bit better. Was able to leave the house for short jaunts on Monday and Tuesday; today I even went to school, to pick up some stuff at the office. That has become a noteworthy event! We got some new lounge chairs, so I can sit outside on a nice day (slathered in sunscreen, of course--chemo causes sun sensitivity). And as of Monday, I can eat with some normalcy again, too.

Over the weekend, my eating was really weird. One day, I could hardly stand drinking anything. I sent Noah to the store for apples and watermelon, then juiced the apples and made watermelon agua fresca. Those, I could drink. On Sunday, I couldn't manage to eat anything, but suddenly thought I might be able to stomach some potato salad. So Noah's off to Vons again (he is making lots of trips there--good thing it's only a few blocks away) and I managed about 1/3 of a package of that. It's quite an interesting diet. I usually love tropical iced tea, and now can barely stand the smell of it (or garlic--though that flavor is fine). All kinds of weird quirks.

Anyway, I have had enough energy since Monday to resume more normal activity, and each day has been a little better. Thank goodness next week is the last AC. At least I won't have the nausea to worry about after that. Meanwhile, I am enjoying being able to use my brain and my body for the next 5 days.

All in my head

Devil: This time around has sucked. Sucked. It's Sunday and I still feel "not right"--yesterday was so bad that I could barely move off the couch and couldn't take my daily walk. There's some nausea (for which, stupidly, I forgot to take any pills until Noah reminded me at night of that possibility--and the pill helped). There's major fatigue--on my Friday walk, I felt exhausted about 2 minutes before I got back home, and just never bounced back from that. The Neulasta causes bone aches, and sitting on the couch--about all I can do--leads to aches and discomfort. Overall, it's just very not right.

Angel: But really, it's still not as bad as one might expect. I'm not throwing up. I'm not literally unable to get out of bed. As bad as I ever feel, I keep thinking I'm just overblowing it (I've always been a wimp about even the most minor illness). It's probably a whole lot worse for other people.

Devil: It's boring, frustrating, even depressing to have to sit around and not be able to do anything. Noah tries to cheer me up, encourage me to get out and do things...I pushed myself hard to walk two days, but then just couldn't do it. I don't want to talk, so there's not much he can do for me. My eyes hurt, so reading is tough and even TV gets difficult. It's hard to find a sitting position that keeps my stomach calm. I want to think, to write, to work, to read, to move, to be active--to do anything.

Angel: Once Noah realized that I couldn't go out for diversion, he really stepped up to bring diversion to me. He's made lots of little trips to the store, has played Battleship with me (no eye strain, no energy needed), tells me stories when I want them and is quiet when I want that.

Devil: Just thinking of chemo now makes me feel physically ill. If I picture the IV, or the day hospital, or any aspect of it (including writing this), my stomach lurches and I feel horrible. It's starting to make the thought of going become dreadful--literally. This is a more difficult challenge to my self-discipline than I've maybe ever faced. It's not that the experience itself is so bad, but the thought of it is becoming terrible. It really is so much in my head.

Angel: The chemo is giving me a 23% better chance (in absolute terms) of avoiding any recurrence of the cancer for 10 years. If it's working, it's killing off any dangerous little cells that are still left. If I can focus on my breathing, I can keep from plunging into the darker thoughts of chemo, and keep those ill feelings at bay.

Devil: At the start of chemo, I felt great. Perfectly healthy. The tumor had been removed, my mobility was pretty much back, and I felt really normal. Now I feel like a Sick Person. I'm sedentary and limited and yucky-feeling, and (since I haven't really announced this yet) I have basically no hair. I have days of feeling better and almost normal, but even on my best days now I get more tired, sleep a lot more, feel I can do less. Before starting chemo, I read a piece by a woman just finishing hers, and she said she gazed in the mirror with an old picture in her hand--herself with hair, smiling and healthy--and wondered who she was. That seemed so remote--even in my darkest days, I thought, I'll remember who I am. But who I am today is such a shell.

Angel: And yet I do remember this always: I am not really sick. I'm being given drugs that make me feel lousy, but these are just drug side effects. And the drugs are prophylactic: they are not treating a current illness (the tumor is gone!) but are the sacrifice I am making for four months in hopes that I have years and years and years in which I don't have to worry about this anymore. If someone could tell me for sure, in three years you would be dealing with a recurrence, but if you choose to go through this now, it won't happen--then absolutely, I would choose this. And I have chosen this, even without the certain forecast. It is really hard. But I chose it for a reason. So I'll stick with it, and I'll make it through.

It's been a while

Hello folks.

I'm pleased to say that one reason for my silence this past week was that I got to have some fun. Noah and I went up to Oakland for his brother Sam's "wedding" (we're not supposed to say that, but it's still the best descriptor). We flew up on Thursday and stayed until Tuesday. We made it to a couple of favorite SF restaurants (and a couple of others in the East Bay), and though almost all of our time was spent in family events, we got to see a bit of our old stomping grounds. The visit was fun anyway, and I enjoyed seeing the whole large, loud, loose, loving Markewich clan.

We flew back on Tuesday just in time for chemo. I did not want to go. In fact, I was writing a blog entry in my head the night before, and it went like this:

No, no, no, no. Don't make me go. I don't want to, I don't want to.
Fine.
This just better f***king be working.

Nice, huh? But quite true to my state of mind. The physical side effects, as it turns out, are not so bad for me--but mentally it is really rough. Just knowing that there are these toxic fluids being put into me, and that I'll feel even a little bad, is difficult. At this point in the cycle, I feel rotten just because of the thought of chemo, even more than from the chemo itself.

At least I have only one more AC treatment (that is the one that causes nausea) and then I'm on to Taxol, which has its own problems--but they do not include nausea, and somehow that seems worse than the others to me. I don't like feeling nauseated, and I associate nausea with mental stress, so it's even worse. And after the next treatment I'll be halfway done, so that's a positive too.

Meanwhile, I actually feel a little better this time than last. I have been more vigilant about taking the anti-nausea drugs, which seems to be helping, and I have a little more energy. Usually Thursdays after chemo mean I lie on the couch all day, but today I made some food and went on a walk--both real accomplishments!--and even got some work done, which was also nice.

But having done all that--I'm a little tired now. It's a lovely afternoon here, on a day that's been in the mid-70s, and Noah's about to go to volleyball. I think I'll relax and stop typing. More later.

Meaning

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.

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.

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.

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.

Zzzzzzz.

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.

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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
Acupuncture
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.