naked owl appears to lose battle but wins war

Last night, I dreamed that I was walking in a nature preserve, taking a path through a snow-covered meadow. On a high branch at the edge of the meadow was a snowy owl, majestic and utterly still. An eagle flew angrily squawking and screaming toward the owl, whose presence enraged the eagle for reasons that I couldn't fathom. The two stood on the branch and stared at each other, beak to beak, one angry and aggressive, the other peaceful yet defiant. The eagle started the fight, and when it was over, the snowy owl was entirely stripped of its feathers. The owl appeared to have lost the battle, but that was all the eagle had in it. The eagle flew away and left the naked owl standing where it had been, battered but resting on its chosen branch. It stood utterly still and looked out over the meadow.

I'm wearing a bit of makeup today, to compensate for lost feathers. Makeup is highly unusual for me, and I generally feel like I am totally faking it when I put it on ("I think this is the way grownups do this"). I woke to huge circles under my eyes (again with the owl!), and if I were at home, I'd get Laura to take an early morning photo to post just for the shock effect. The days of "you look well" passed quickly. But I'm actually feeling not too bad, and am glad I'm here.

This paragraph comes several hours later. I introduced myself to the participants this morning, and my fellow consultants had asked me to let people know about the cancer and chemo so that everyone knows to protect me from cooties. I surprised myself by beginning to cry as I outed myself. It dawned on me that there are very few people I have had to tell face-to-face about all this. Most people know through email, word of mouth, Laura. I have not had to say aloud that I am fighting breast cancer. It made my heart squeeze.

I will be tired at the end of the day, I know, but I'm earning my keep. I publicly designated my dear friend Roland as my pinch hugger and handshaker while I am here. This arrangement has been working well. For me, anyway.

Naked owl, signing out.

hello from Mt. Holyoke

Walp, I did it. I am here in South Hadley, and I'm going to make it work for the next three days. Now it's too late for my fellow faculty to veto my having come even if they happen to read here that I think this may not be the smartest decision I've made. Still, it passes the Bettie Chu smell test -- I decided that I would probably regret not doing it more than I will regret doing it. May it be so.

The doctor gave me a greenish yellow light today when she heard about how much bone pain I am having. She was just delighted to hear that's arrived. Bone pain is a good sign that the neupogen and the neulasta are finally kicking in, cooking up little patties of white blood cells. She thinks if I can keep my distance from the participants, wash my hands with the compulsion of Adrian Monk, continue to hydrate, remind myself to eat (blecccch), and knock myself out for a good night's sleep, I should be able to fight off cooties. I have hired a surrogate hugger, my dear friend Roland, to give hugs for me. I wish I could hire someone to eat and hydrate for me. Ain't it a shame that water tastes bad?

Bone pain is weird, entirely new to me. It's a throbbing in the skeleton, particularly around the collar bone and the spine, sometimes the back of the pelvis. It comes with a quiet, throbbing headache that works in syncopated time with the skeletal throb. It's hard to pinpoint where it's coming from, because unlike muscle pain, there's not a particular way you can shift things to relieve the pain, and not a particular motion that brings it about. I am trying, though, to embrace it as a sign of good news, just like I want to see this relentless weakness as a sign that the chemo is doing its thang.

I'm saying all this in part because I really, really don't want to complain to the people I'll be spending the next several days working with. I want them to be impressed with my resilience and spunkiness. I want them to think I am doing fine.

Instead, I may complain here. Just a bit. But maybe pretty freely. Heads up.

hadn't planned on a wig, but...

Yani sent me one!

Wulf-monath

Remember my dream that a wolf and January are looking for something? Before January drags its sorry backside out of here, chew on this: the Saxon term for January was Wulf-monath, or wolf month. Lauralee told me that. Back in the Saxon day, January was the time of year when the wolves got so hungry they came into the villages in search of food. If "wulf-monath" doesn't argue for the importance of unconscious processing during sleep, I don't know what does. And if it doesn't say something true about January, I'll eat one of my new hats.

I am just about bald now. There is a hair about every quarter of an inch of scalp. Here is a shot of me talking on the phone tonight with my beloved brother, Kevie. Yes, I know I have a great-shaped head. Thank you for thinking so. I still am not happy about the bald thing.

I have been feeling so crummy that I dragged my sorry backside to the doctor to find out what the heck. Turns out that my white blood cell count is, um, 0.7. Normal is somewhere around 7-11, and zero is as low as you can go. So I feel less crazy, but not much healthier. I got a shot of neupogen, which should help jump start my immune system. The whole medical team is trying to get me set for this counseling retreat I want to work at. If I can't get my numbers up by Friday, I can't go. I'll simply be too vulnerable.

So apparently along the continuum of responses to this particular type of chemotherapy, my system is fairly sensitive. This is a deep blow to my ego. I really, really thought I would be unusually stalwart and resilient throughout chemotherapy. I would be Far Better Than Average. I would impress the doctor and nurses with my wit and joie de vivre. Remember paula chu? Wow, she was a good patient. She knew how to put mind over matter. She could make her counts go up by using the Law of Attraction.

I am having, too, to rethink my grand scheme for my counseling practice. This is discouraging to me; it was such a great plan. Sure, I shrank the practice and have been declining new clients for months now. But I had hoped to feel well enough to see ten or twelve people a week. These are relationships, dammit! It's also tuition money, not to mention my passion. It is looking more and more like I may need to seclude myself at least during the adriamycin/cytoxan phase, to protect myself. And also, if I am feeling this debilitated, I would do a disservice to my clients to sit with them trying to rise to the occasion.

But back to the Law of Attraction! I'm thinking up up up. By Friday, please, up.

training: hallowing over wallowing

My beloved brother Lee tells the story of showering down in the Harvard Red Top boathouse after a long, painful practice for the Yale-Harvard Regatta, a grueling 4-mile, 20-minute race. Rinsing off next to Lee, a scrawny frosh rower by comparison, he says, were two of the very top rowers in the world: Steve Brooks and Fritz Hobbs. It was June, 1968. Lee was in awe of them, these two extraordinary athletes who would soon go on to row in that summer's Olympics.

Both men at this moment were exhausted, nearly spent. Lee overhead one confess to the other, about his 4-mile sprint on the river, "Fritz, sometimes I'm just not sure I can make it." And Fritz answered, "I know. You just have to have faith in your training."

As I stepped out of the hair-strewn shower this morning, here in Farmington in 2010, I thought of my own training, coming as it has in lessons both goofy and grim. I try to remind myself that Life has trained me in how to get through this moment. That I am getting training right now, too.

I confess I've had some training that doesn't serve me well as I go through a bad chemo episode. I have extensive training in getting things done. It means that today's task of stillness is more challenging than marching through a to-do list. My to-do list today is to not-do. I feel underprepared, but am trying to trust that either I am somehow trained for this type of self-care, or that this is training for the next challenge.

How do you tell the difference between self-indulgence of the wallowing type and self-care of the hallowing type? I am finding that the distinction is in a flavor: the hallowing process has a bittersweet quality that you don't find in lonely self-absorption. When you feel bittersweetness -- both joy and loss -- I think you are close to the heart of things. I can't always get there, but I recognize it when I arrive.

I am having trouble with asthma right now, and just can't seem to beat this aftermath of a cold and get a good breath. I am gearing up to work at a 3-day counseling retreat at Mt. Holyoke beginning on Saturday night, and I need to be well for it. So my current task is to stay as still as possible, not to trigger my lungs into overdrive. Yesterday I tried the alternative -- took a long walk, and came home exhausted. Dang. Wrong training regimen.

There are thousands more hairs to fall from my head, but my "hair" is nearly gone. A young, bald client of mine suggested this morning that I shave, her strategy on more than one occasion for taking the reins when baldness is inevitable. I tried just now: took shaving cream and spread it all over my head, but the hair is too long and the razor can't cope. What a mess. I will have to wait for the missus to help tonight. She is getting lots of training, too.

flushing

Took a shower last night, and here is what gathered in the drain. I feel sad about this. I don't like that the scalp that is appearing is so much paler than the skin on my face, that it's all so patchy. I had sort of hoped for an explosive loss of hair: 1-2-3, poof. Plus I have chemo flush, a prolonged reddening of the neck and face that feels kind of like a fever and looks like I've had a couple of beers. So the pale bald patches are even more pronounced.

I keep having to blow hair out of the computer keyboard, off my fingers, lift it out of whatever beverage it is floating in.

I was getting used to the short haircut -- felt okay walking around in it, holding counseling sessions with it, all that. But this is a whole new thing. My pillow is collecting hair, and pulling it into its weave. Flannel sheets are crazy covered with hair. La says it's like the cat slept with us last night, midsummer.

Temporary. I know it's temporary. I am just happier feeling a little sick, if that is what must be, but not having it show. Now it is writ kind of large, and it's writ on my head.

taste enemies, not buds

My main complaint is this taste thing. I am as hungry as ever, but wish there were a way of bypassing my mouth to fill my stomach directly. Aside from texture, there is little difference between pizza, peanut butter, fish, coffee, bananas, or jello. All taste pretty bad. I have had to spit out part of every "meal" I've tried. The spitting out comes with that cack cack blecch ptooey ritual into the sink. Not losing my cookies; just abruptly unwilling to chew on them anymore.

Even water doesn't taste good, and I am supposed to be drinking a half gallon a day.

The human family would not have made it for very long without our reliable friends, well-functioning taste buds. It's just too much effort to nourish yourself without good tastes to encourage you. This must be how Bear, our dog, feels about a life of dry dog food. Eventually he'll eat it, but only because we haven't buckled and provided something more appealing. It's eat this or perish, Bear; what's it gonna be. I'll bet he thinks the same thing: I'll eat this because I have to, but I'm going to feel sorry for myself while I work my way through each bite. And I'll cack cack bleccch ptooey just a few kibbles on the floor in protest.

El says that if I haven't written in my blog for awhile, that's when she worries. It makes sense. I have markedly lower energy than usual, and though blogging gives me energy, first it takes it. I've done good 3+ mile walks the past few days, but have to push myself along. I tried to run, but that didn't work. I eat, but only because my stomach demands it. I have started to take late morning naps. Yowza. I am not depressed, but Laura keeps checking in to make sure: some of my behavior looks depressed. And I blame it all on the taste buds. Taste enemies, that is -- these are no buds of mine.

ahoy

When you sniff, the skin that covers the collarbone moves. I had not noticed that until they put in the port this morning, along with its tube that snakes over the collarbone and into the jugular vein. I notice it now, and with the cold I notice that I am sniffing with alarming frequency. It's sore, and I guess it will be for a few days. No regrets, though. In fact, the sedation drugs they gave me for the port were such fun. They made me just plain relaxed. And I say this as someone who is pretty mellow. Or I thought I was a pretty mellow person. Compared to the state induced by intravenous versed (ver-SED) and fentanyl, I guess I am a bundle of nerves. I kind of wish I hadn't learned that, but what a sweet form of experiential learning. I asked the surgeon for a doggie bag; when they pulled the plug on the drugs and the party was instantly over, and I was sure they had leftovers. No dice. No drugs for p....

Here is a shot of the resulting port, which we brought straight to the doc for chemo Round 2. Somewhere in that sentence is a maritime metaphor, but I can't reel it in. Anyway, I'm back to feeling mildly queasy, and if Round 1 was an indicator, I have about 24 hours before my taste buds go kablooey on me and everything tastes bad again. That never entirely left me in two weeks, but it receded enough in the last few days such that ice cream became distinctly better than the salt water I have to rinse with after I eat anything. It was a sad toss up for most of the two-week period.
When we got back from chemo, the mailbox held a FedEx box from Mo, who tailored the picture to the left, with some help from the folks you see in the picture here (thanks to Joan, who is thus missing, for the original shot). This is a gathering of those of us who spent a magical weekend on Block Island in 2008 celebrating the one and only Gigi Wizowaty's 50th birthday. Is this a brilliant gift, or what. It is virtual solidarity, yet feels real.

And yet the hair stays on. By this time, I am beyond the deadline for its departure. All this build up; it's like waiting for the tooth fairy. I keep checking my pillow. I feel like when it goes, it's going to be pretty dramatic, like this:

One nice thing about having very short hair is that now, for the first time in either of our lives, I look more like T'ai than I look like Ting and Yani. Ting, Yani, and I are constantly being told we're peas in a pod -- one pea a bit more shriveled than the others, but hey -- and T'ai feels like chopped liver. Handsome chopped liver, but out of a loop. The other day he stood in the kitchen and said, "Finally, mom, you look more like me." Here are a couple of shots to prove it. Pay no attention to Dave, about to slam me with a frying pan. I am getting my revenge by leaving in his red eyes.

speeding tricycle collides with pedestrian

Last night I got slammed with a bad cold that hit me like a fast tricycle, one of those good-sized metal ones we rode until a bike got handed down. I don't want to exaggerate lest you begin to mistrust my report of things. A tricycle would hurt enough, though -- it would be enough to knock me off my feet, as this has done. But it's not like the cold hit me like a bus, a truck, or even a full-sized bicycle. Just enough of an impact to keep me in bed all day, trying not to think about my pounding head and stuffy nose.

I just want you to know that I will never say "she threw me under the bus." If you're going to use a metaphor, it's best if it's newish, birthed for the situation at hand, don't you think? Otherwise, it's just an expression, and it doesn't illuminate things like a good, fresh metaphor will. Okay, I say "I'll eat my hat" now and then. I do say that. Some expressions should not die. But I worry that "she threw me under the bus" is reaching the shores of other continents, and, once it gets translated to a different language, folks are saying, "what is wrong with those people?"

I've gotten up only to hydrate dutifully, manage the outcome of that hydration, or to do another neti pot. Boy, is that unpleasant, the neti pot. I hope it is helping me clear things up. The sensation of pouring water into your nostrils reminds me of getting tossed into the Yale pool, where all four of us had swimming lessons as kids. What a nightmare -- ask either of my beloved brothers and they will tell you (try Kev, who was more traumatized) about how there was some cultural thing back then that said boys needed to learn to swim naked, with a dozen naked strangers. Girls got to wear bathing suits and bathing caps that gave me the identical headache I am sporting now. But we were literally thrown into the pool. None of us has ended up strong swimmers; it's no coincidence.

The insta-cold, now already a sinus infection, is my "low counts" at work, I suppose. Everyone else who was here this weekend could fight off whatever this is, and I couldn't. Now I have a fever. Now the doctor says I have to start antibiotics. Have to cancel tomorrow's appointments. The kid on the tricycle is turning around and coming back, picking up a little bit of speed.

buzzcut partay

We gathered last night to buzz my hair before it leaves on its own accord, which should be any time now. Frankly, the suspense is killing me. Since I know it's going to happen, I would like it to be NOW. If you knew that sometime in the next few days you were suddenly going to lose control of something your body normally controls (any examples are indelicate), wouldn't you just want to have it happen and get it over with?

Ting took the trusty canine shears (they worked great, fyi) to Lily's hair first, after we took turns cutting off 4 braids that were up to 17 inches long. She looks fabulous, of course. Like glam. Like she may get back to campus and be a trendsetter. Sheesh. Here is a shot of her before and after, so you can feel my pain (and joy).

The evening was bittersweet for me. My beloved sister Ellen came prepared to shave her head. She had even ordered herself some hats. I didn't want her to do it. She wanted to do it for me; I wasn't sure it would help me. Her hair would be growing back while mine would stay away for months. I wanted her to look healthy. She wanted to be bald so that that might just be a look, not a matter of health. I worried that her young children would be anxious about social consequences. We cried about it. She worried about me, I worried about her; it was all so lovingly codependent.

In the end, the cut wasn't as big a deal as I thought it was going to be. Not so much of a loss, and the length is now clearly not the real loss anyway. Plus there is an interesting feature (which will be short-lived, but still) that buzzed hair hangs onto hats like velcro. Nifty; I did not know that. Also, you can suddenly measure your velocity by the top of your head. I can now tell how quickly I am walking through the house by these little 1/4 inch filaments on my head.

I wanted Ellen to do it then, once it was clear that a buzzcut is not a big deal, or even the deal itself, but the moment had passed. We may revisit this later, if and when my baldness feels lonely. We do have time.

Let it be known that on Day 11 after chemo, something tasted almost good. It happened right around 1:00, and I'm hoping it will still be here around suppertime.

Almost forgot to post my "before" and "after" photos. Here they come. Again, you see my pain.

a wolf and January are looking for something

Chemo tinkers chemically with the brain in ways that interfere with sleep, and lorazepam is prescribed routinely. You are instructed to take it throughout treatment, as sleep deprivation has an obvious dampening effect on healing. Friends who have had chemo emphasize to me the importance of protecting my sleep, and urge me to surrender to needing chemical intervention. It's not about anxiety; it's that chemo has pulled the plug on the sleep mechanism.

I understand that as a concept, but always have to find out for myself. A few nights ago, I tried taking melatonin only, and lay awake until 4:45 in the morning. Good experiment, bad night. I think I understand how curiosity killed that damned cat. She gathered lots of fascinating data in her life, but she had big bags under her eyes since she was a kitten. 

The lorazepam helps me sleep, but it feels like an unnatural sleep -- like Juliet's, maybe. Remember that she wakes up and stabs herself. She can't have gotten very good sleep to have made that judgment call. With lorazepam, I wake up feeling hungover (I think. See post re never-been-drunk for caveat). It pulls a different plug -- the one on the dreaming state, in which the brain does some important repair work.

Living outside the law of Dr. D, I took my naturopathic sleep supplements last night, instead of the lorazepam.

Consider the following dream fragments from one night's natural sleep:

My beloved sister Ellen wants to bring fresh garden tomatoes to my oncologist. They are perfect, sun warm, deep red, delicious.

In my coat sleeve, I am hiding a bamboo hairpin from the young police officer that gives me directions.

We are all given metal playground slides to assemble. I am really embarrassed that mine comes out so steep and rickety.

There is no longer a direct road around town. You have to pull yourself on a sled.

I pass a rundown building with the following words engraved in its stone facing: "Home for Those Who Need a Time Out."

This final fragment happened not last night, but right after surgery, and it has stayed with me, as it captures the poetry and mysterious necessity of dreaming. As the dream happened, it made perfect sense, but it comes into the light of day sounding both impossible and somehow true: a wolf and January are looking for something.

are-you-still-alive appointment

This is actually what my oncologist calls the one week, post-first round of chemo appointment. I blink through the sentence I hear her say: "My office will call you to schedule your are-you-still-alive appointment." It puzzles me that she thinks it might be fun to call it this. "Haha, ya nut. What a funny time I've had this week. And I am still alive! Isn't that a hoot?!"

Yani brought me to my AYSA appointment this afternoon. Her perspective on my oncologist is less judging than my own. I'm sure my mind is forming some unpleasant associations between my doctor and chemo; I know I'm not being fair. Yani's coaching afterwards makes me feel kind of bad about myself. "She's just doing her job, mom. She seems very informed to me." "I know," I say. "It's just that I wish she had more...." I was about to say curiosity. Yani beats me to the punch. "Curiosity?" she guesses. "Oh my god, yes! How did you know?" "Mom, you think anyone you object to lacks curiosity." I did not know that. Really? Huh.

This all started when I began to ask various people at the doctor's office what the term "STAT" stands for. The person who checked me in. The person who took my blood. The person who took my pressure. Is it an acronym? No one had any idea. Not even the doctor, who went through years of med school and trained in the emergency room where she probably shouted "stat" into the phone all the time. It mattered less that she didn't know: I wanted her to be someone who would want to know, stat.

I prefer that she be expert, of course. But delight in learning is a core value for me, and I have a harder time connecting to someone who doesn't seem to have it. Wondering about stuff, and loving to find stuff out is much more interesting to me in a person than sheer brilliance or an inability to write this sentence without saying "stuff" twice. All my childhood, a huge dictionary was in the living room or dining room, and we often interrupted meals and conversations with a quick background check on a definition of some object or term. I remember as a young child wishing that "I had my own biologist" so that I could ask him or her any question that arose in my mind. And now in 2010, google is my own biologist, dictionary, encyclopedia, and playmate.

Upshot of the AYSA appointment: My counts are low. That's a sentence I've never heard myself say before. Like way low, apparently; enough so that if they don't bounce soon "lots of other oncologists would stop treatment, but I tend to be pretty aggressive about staying the course."

Yani, the enlightened one, thinks that it's kind of nice to see numbers that demonstrate why I feel poopy. Kind of like a reality test, she says: oh, cool, so that explains the low energy. My reaction is "Ack! My counts are making me feel poopy! And Yani is making me feel bad about myself!"

The doctor vetoed the dentist appointment I had scheduled for next week: "your mouth is a cesspool right now, paula, and your counts are too low to have them picking around in there." (Just googled cesspool and learned that it is one word -- very interesting).

I also learned that since I am among those who got heartburn from the very start of chemo, I'm going to have it throughout, and need to take stuff ("stuff" is a great word -- where did it come from? will I use it more and more as chemo brain seeps in?) every day for 4 months to prevent it. Rats.

I begged the doctor to let me take something other than the prescribed lorazepam for sleep. I hate lorazepam. It is reducing my REM sleep, for sure. I need that. Last night I took the formula my naturopath prescribed, and slept much better. When I taught psychology, one of my favorite parts of the year was getting to talk to adolescents about why sleep matters, why getting REM sleep matters in particular. That's when memories stick or get tossed, with the selective sorting of adaptive, health-fostering memories. That's when the ravell'd sleeve of care gets knitted up and all that. I want that part of sleep. Dr. D is looking into it, and I am on the edge of my bed hoping for a thumbs up. No joke.

I would like to close with a rant about my chemo-damaged taste buds. It's the worst symptom so far, and I could cry, and have, just thinking about it. Have lost 3 pounds this week, which is no big deal, but if I don't figure out how to keep eating food despite the rancid oil taste that my tongue exudes as I eat, I know it will be bad boogie in the stamina department.

Stat comes from Latin: statim, meaning immediately.  If you looked that up before finishing this post, you have both my admiration and sympathy.

chemo o

I've been spoiled. I've never had to wear deodorant before. Now I have chemo o. I didn't expect this. Nausea I knew about; they have drugs for that. Fatigue; a drag, but no surprise. But b.o.? That should be part of the medical disclosure up front. "You will lose your hair, possibly your nails, and you may stink under your arms."

I've always figured I lucked out in the body odor area because of my Chinese genes. If my dad ever "needed" deodorant in his life, I'll eat my hat (most things I might eat are about this appetizing right now anyway). Sure, his breath could make you stagger toward a chair, especially if you caught him post-dumpling made with jyotsai, the wickedly potent onion grass that he grew in the backyard. I think each of the next generation has a little patch of the stuff somewhere in our yards. For me, before I put it in food I need to think, "Okay, do I think anyone might stop by today? Tomorrow? At any time in the course of the next 3 to 5 days, might I run into another person and actually need to speak to them?" I'm putting a picture of some recently made dumplings because I think they probably look delicious. I have lost all perspective on this, however, so I'm guessing here.

I love some of the features like lack of b.o. that I think came with Pop's Chinese genes. I love the strong calves. And being basically hairless on one's legs has advantages except for in the wintertime. Here is a shot of my legs next to my dad's. Even with a zoom lens you could only spot a few stray hairs on his strong legs.

I do remember going through a brief period of time in adolescence where I envied young white girls who had more body hair. This is true. I once said aloud to an adult friend, "Gosh, I wish I had more hair on my arms." "Don't!" she snapped with alarm. "No one likes a furry female." I wondered if that was true.

Anyway, I soon came to feel fine about having more compact and hairless legs. I'm hoping it will help with the whole hair loss thing that is coming soon, though I know this is wishful and wistful thinking on my part. This weekend the head hair is coming off before it does that shock and awe thing on me. My niece, Lily, is going to get a buzzcut in solidarity. She's at Bryn Mawr, and every year lots of students there buzz their hair for Locks of Love. A year ago, with her mom having just died, Lily wasn't up for it, as you can imagine. I'm so happy to have her company in this process; I think it's all a pretty intimate thing. We're going to have several skype convos going at the same time so that people can watch and advise -- none of us has done this before. For my head, I don't think it matters much how tidy the job is, but Lily should look as pretty as she is. Don't tell her that all we have is canine shears. I figure they work the same, but I'm not entirely sure.

Final newsflash is that tomorrow Yani and I are joining T'ai in Boston for an Eddie Izzard concert, a treat we planned months before my diagnosis. We weren't sure I'd be able to go, but I'm up for it, and am just going to wear a protective mask. That's a good look at a stand-up comedy show, isn't it? Not only will I be protected from crowd cooties, but since we're eating dinner in Chinatown, I'll be able to mask some of the breath.

avoid falling

That's one of the things on the official list for chemo patients to do: avoid falling. I think that's a great idea for everyone, so in case it's not on your list, please add it. My brother-in-law Rob forgot about this and almost broke his hand this morning while running. I was too late in reminding him. I feel partly responsible for his spill.

The official list also says that I should give the kitty litter duty to someone else in the household during chemotherapy -- something about the presence of creepy viruses. This is great news to me, though I think it will take awhile to pass the official scoop to Laura. It's not generally on her radar, though she does the lion's share (whoa! glad we're not dealing with that) of the daily pet care. She does intake, I do output. Not for the next 4 months, though, no sir.

In fact, the official "Chemotherapy and You" book says, "Don't do any chores you don't want to do." This, to me, seems a little over the top. I appreciate the sentiment, but there are breadboards to sweep off, mail to vet, toilet paper rolls to replace, no? More importantly, one has relationships to protect. Always want to keep putting currency into your relationships, and eschewing chores I don't want to do doesn't seem wise. Plus pulling my (occasionally modified) weight around the house is a way of keeping my life in familiar order, which matters to me. But the kitty litter? I will be a good patient and pass that to Laura.

Yesterday I went in for the shot that must follow chemotherapy by 24 hours: it's Neulasta, which boosts white cell development. Apparently once that happens, it's like bringing in the opposing army. The chemo puts in one army, and they stomp around and make a mess of your inner meadow. But the real fighting begins when you bring in the white cell army. By Grace, both armies seem open to mediation so far. Today I woke kind of puffy and red, like I had a face-fever. I'm a little poky, and the appeal of food is highly variable; nearly everything loses its appeal after a few bites. But I did walk a couple of miles in the wicked cold, and that was good for me. So I'm hoping my white blood cell army will be heavy on the "come on, guys, let's go work this out around the kitchen table" approach. I know I'm supposed to see chemo as fierce banshees attacking the confused cancer cells. But the Quaker in me runs too deep. I think maybe we can talk them out of my body. "Listen, fellas, you don't want to be doing this, right? Why don't you just give up and we can all be square. You got the boobs. Give her the bod." This is my hope. If not, then, sure, cellular pacifism be damned.

Fun numbness story: I slipped my arm out of a few layers of sleeve yesterday to get the Neulasta shot, the better to get at a good spot to inject. Didn't notice until bedtime that I only put one layer back on. My shirtsleeve was all bunched up around my chest-with-no-feeling. Yep, spent the day wearing half a shirt, and had no clue. 

writing from the infusion room

I'm sitting in one of the cushy chaises of the Infusion Room a Go-Go. So far it's not so bad. Hot green tea from a thermos, feet up in a leather reclining chair, a poky but serviceable internet connection. Life is good. 'Course they haven't hooked me up yet.

True confessions first: It's 8:00 and already this morning I've made some significant emotional purchases. They should probably take away credit cards when you are having chemo. I bought some organic, unsulphured tart cherries, peaches, and nectarines online while eating breakfast, worried as I was that the world's supply of these delicious things might disappear while I'm not looking. The second, and HUGE purchase this morning I actually made from the infusion room. It's a vibration platform machine (it's an exercise machine, not, as Ellen suggested, a giant vibrator!), something I've investigated and wanted for a long time. I've been waiting for the go-ahead from the doctor (didn't want it to jiggle tumor islands into mobilization), and got her okay this morning. Within minutes I had placed the order. I am really excited about this. Come try it -- it ought to roll into Farmington in about 10 days.

Now it's 9:20 and Laura and I have spent the last 45 minutes talking to Beth, our nurse. At first I thought she was going to be too sweet -- she has a little elf voice, and that always scares me. But it turns out that I am happy to have her sweetness around me. Sweetness coupled with expertise and compassion is just what I need in my nurse. I'd love some funny, too, but I don't think that's her thing. We've been talking drugs, constipation, when to call. I'm disallowed from cutting my cuticles, have to treat papercuts with neosporin, and have to rinse my mouth with a special "recipe" several times a day. She's going to give me a mask for when Yani, T'ai, and I go to the Eddie Izzard concert next week. That's a good look at a concert, isn't it? And laughing through a mask, I don't know - it sort of encapsulates this whole thing.

We've decided to get a port before the next infusion, and taking control in this way feels good to both Laura and me. It will mean two more appointments with some Port-o-Doc, getting put close-to-under, but NOT burning out my lovely veins. Here is a shot of my sibs' and my lovely veins. I want to keep them. They are part of my family heritage.

Getting my third anti-nausea medication intravenously as I type. They front load you with that before they start with the adriamycin and then the cytoxan. Works for me. Odd side effect of the anti-nausea meds: may have trouble opening jaw and turning your head. As long as that doesn't get too uncomfortable, I think that could be an interesting side effect; kind of a Cary Grant stiffness and formality. I may add an accent to enhance this feature. "Lurra, dahling," I may say, not turning my head and barely moving my jaw, "DO be a dear and bring me the Times, would you?"

Hydrate, hydrate, hydrate. That's all they talk about. So far I have peed 5 times this morning, and we haven't even started the infusion. I am considering buying stock in some company that offers tissues and toilet paper, both in gratitude (toilet paper is also one of those things that I often find myself thinking, "What if they stop making this great stuff?") and also in recognition of how much more I will be buying.

All the booklets say to empty your (well, my) bladder often, that this can reduce the chance of bladder bleeding. This reminds me of the time I emerged, deep in thought, from the bathroom one day. "You know," I said to Laura, "Sometimes I think I am literally anal retentive." She says, "You mean, the way you like things to be orderly and neat, like that?" "No, I mean literally anal retentive." "You mean how you like to have things your way?" "No. I mean I am literally anal retentive." "You mean how you always, like, need to be right?" "No!! I just mean that sometimes I hold in my poop! Jeez!"

At this writing, I'm sitting in the healing alcove back at home, and am feeling....okay. A little queasy, a little tired, a little overwhelmed with information and anti-nausea meds.

I meant it when I said before that I don't want anyone to feel obligated to read this blog. I'm having a surge of that feeling again, maybe because it is so helpful for me to write, and I both fear and hope that I'll be writing all kinds of whiny observations. Tomorrow I want to talk some more about the dos and don'ts they advise to help reduce various symptoms. If that makes you as queasy as I feel, do give yourself permission to blogavoid.

Before I end, let me honor the memory of Ruthie Cole-Chu, my bright, lovely, and spunky sister-in-law who died a year ago today of colon cancer. It feels like a heavy day, this January 7. I am trying to see my actions today as a move toward health and light. I already can see that keeping track of that perspective is going to be a challenge -- the walk Laura and I are about to take should help me find it again.

P.S. It did. All is well. Good night.

house of good spirits

Our house is old, and most of the window glass has been around long enough to be visibly dripping with time, distorting what you see as you look out -- an effect that is accentuated if you look out at an angle. Today from the office window I could see someone, unrecognizable through the wavy glass, standing in the driveway near a parked car. She was swooping her arms in large, healing gestures toward our house -- she waved her arms to the right, sweeping away bad energy and spirits, then waved them to the left, then all around in a big circle. She was really into it, blessing the house with all her might. Twice she twirled as she gestured. I thought this was so lovely -- that someone would come by the day before I start chemo and give our home this quiet blessing. Since she hadn't announced herself, and I had no idea who she was, I simply let her do what she came to do, and I basked in the warmth of that random act of kindness. I had a strong feeling of being held in good energy.

Two minutes later, my 3:00 client walked in. "Oh!" I laughed. "It was you! I thought you were blessing my house! What were you doing?" "Oh," she laughed, too. "I was giving directions to these people who dropped me off and needed to get back to Route 84."

Delivered by my imagination and a spirit of hope, this was the perfect blessing for me and for our home. I am ready for tomorrow.

imperfect repair does not make this less complete

I won't say much about the earrings, except that the job is complete and both Laura and I are happy. Laura walked in tonight, saw them on me, and said, "Are we done?" with a mix of hope and delight in her voice. "We are done." The earrings are just wrong enough (through no fault of the sweet jeweler, who did a great job with what I gave him) to be right; asymmetrical and not in fact something I would pick out in a store, but they are mine and they're done. I am immensely happy wearing them tonight and am glad to have them on this journey. Having these, kind of showy as they are, as my theme earrings during chemo is like finding out your animal spirit guide is a bird of paradise. Weird, but I'll take it.

Pictures of the shaving party, currently scheduled for the 16th or 17th, will feature the earrings.

My mom once wrote an aphorism that said, "Imperfection does not make me less beautiful," and my dad did this painting of a scraggly tree to go along with it. I am feeling like that's a good message for me to hang onto these days. I am increasingly aware of the physical imperfection of my lack of breasts, which sounds odd, since I've had 6 weeks to get used to my new architecture. But the first month or so was all about bailing out the flood of the fluid and stamping out the fire of the burn. And now that the fire and flood are gone, I can take in the damage left behind. I rummage through the wreckage now and then and study my chest, sans boob. This is how it is. Imperfection does not make me less beautiful, I tell myself as I rub in some more vitamin E, feeling no more sensation than if my chest were made of tupperware.

Yani gave me an article about phantom limb sensations, something from her "cog neuro" (one never says the whole name of the course) class. It talks about how various sensory areas of the brain are near each other, and therefore sometimes when someone has lost a leg, he or she can "scratch" the phantom limb by scratching their face. It says that a similar effect happens with some women who have had their breasts removed: they can have phantom breast sensations by touching their collarbone, sternum, or sometimes earlobes. I have touched every square millimeter of said areas, and no one is picking up in the breast department.  The article said it takes some time for the brain to do that rearranging, so hope springs eternal. If you see me scratching my collarbone, feel free to tell me to get a room.

Last note for tonight: Though I am seeing 6 clients a day this week, between things I am nesting. We both did this before surgery, and the impulse has reappeared before chemo. Sunday I painted an underused space on the second floor, with some help from Ting and Dave. I am so happy with it, and plan to do some serious blobbing in that old counseling chair of mine. You can't see in this shot the lovely Buddha that is watching over me, or the sleeping cat in the other corner. Though I am scared of the next several months and what they will bring, all is still in a Container of Good.*


*thank you, Augusten Burroughs for this concept

making potable lemonade

I'm afraid we have to go back to the earring. See entry of December 19th for sorry details. The "repair" blogpost was meant to be the penultimate mention of the earring, followed by a final anecdote of victorious completion, with both earring and relational repair with Laura, who lost the earring and has since looked under every couch in Farmington.  She's found lots of gum, spare change, and ball point pens, but not the earring that got away from her pocket.

Shortly before Christmas, I had brought the remaining earring to a bead artisan who was going to Make It All Better. Who cares about the scathing reviews of her shop on the Internet? Those were harsh, surely unfair; she's quirky, I figured, but she must know what she is doing. She owns a shop, after all.

Yani and I spent a long time with this shopkeeper. I described my idea of earring mitosis, dividing it in half to make two smaller ones, using the beads bearing the original earring karma (no, no; I didn't mention karma. I was very concrete.). We went over each bead.

Saturday Ting went to pick up the finished earrings! As she handed Ting the pair, the how-the-heck-does-she-stay-in-business beader said, "I might not have done it the way she wanted." Her notes to self on the little envelope revealed that she wasn't listening as concretely as I was speaking: "make another like this but not exactly," she had written. She dissected the original one, all right, but mitosis had gone bad. We had mutant earrings.

Now I had paid $35 to have my one good earring made much larger and weirder, and created a massive and definitely fraternal twin earring to boot. Laura, who still feels responsible for this whole thing, sneaked out of the house yesterday and drove the unwieldy things through the falling show to another bead artisan a friend recommended. She came home, my devoted spouse who is understandably tired of this whole thing, with original-sized earrings strung so tight that the beads fall at an angle, as if you are standing in a very strong wind at all times. A basset hound with its head out the window of a car going 60.

Who feels worse about all this? The neurotic one who is embarrassed that she has to have her earring right, laden as it is by now with meaning -- plus emotional, fossil fuel, and financial investments? Not to mention that it has morphed into the project that won't let me complete it? Or is it the one who thinks she has to fix the damn earring to make her cancer-stricken spouse happy no matter how unreasonable the hang up? I note again that we are fully aware that this is still about gaining a sense of control over circumstances that are raging through our lives.

So this morning I decide to put the earrings in a wheelbarrow and lug them to a real jeweler. I call first and say, "I would like to make an appointment to tell a story to the jeweler." That's just a sentence I've never said before, and it felt weird because I knew I should just fling the earrings into the snow while driving on Route 84. But there was all this stuff caught up in making some potable lemonade out of this sour situation. The jeweler gets on the phone and he says, very kindly, that he would like to hear my story, to please come when I can. I walk down the street to the store, shake his hand, and he begins to listen. He sketches and measures. When I ask when he thinks they might be done, he asks "when do you start chemo?"

He is going to try to fix it by Wednesday, the day before treatment starts. He made several careful drawings, and treated the job more thoughtfully and tenderly than the surgeon treated my scars. Though all this will double the original cost of the silly earrings, it feels promising and comforting. It feels like maybe I will complete this weird episode and walk into the "infusion room" on Thursday with crystal earrings that reflect light and say persistence, hope, repair.

places to hide

So Melissa tells me in the comment below that you can take any medicine as a suppository. This gives rise to all kinds of passive-aggressive ideas for how my gladiator wife can help out, doesn't it?

Laura and I set out at 8:00 this morning to get haircuts. This was to be stage 2 in my gradually shortening mop. I am reminding myself of those dolls that other girls owned when I was a kid. I wasn't a Barbie-type doll owner, and here I will pause while that shock sinks in. This doll had hair you could pull out when you wanted her to have long (blond) hair, and then somehow push back in when you wanted her to have short (blond) hair. In our day, that feature was high-tech, an astounding feat of creativity and manufacturing genius.

Anyway, still suffering from limited brain space, Laura and I drove to West Hartford early this morning and waited for the salon to open up. We waited a long time, well past our appointments, and the place was still dark. "Wow," we said between sips of Starbucks coffee, "this is really bad business." Turns out that Laura had scheduled our appointments at a different salon, one right near home. One that actually opens on Saturday morning. We were way late.

This is the kind of thing that my parents would have put in their "Accident Book," where for many years they recorded life's little mishaps and snafus, to later remind themselves of the humor in events that may have been annoying in the moment. It is worth noting that they ended up filling about a dozen accident books. My parents were big on flaky mishaps.

Yesterday La and I walked over to our friend (an oncology surgeon) Jim's house, just as we did a few days before surgery. I needed to hear Jim say that I am doing the right thing. Before surgery, I wrote down what I wanted him to say, and he did it for me: "If you don't do this surgery, the cancer will spread and it will kill you." I felt so much better hearing that, having that clarity. And yesterday was the same: "Though this is a very aggressive regimen, given your pathology report, this is what I would do in your place. This is what my colleagues would have you do. This is what I would have my wife or my daughter do." That is what I needed to hear. Seeing Jim has each time been like a last parachute check, a straight-in-the-eye talk reminding me that the plane is on fire, then a shove.

Conversations with survivors, books I'm reading, yesterday's talk with Jim -- all of these are making me think a lot about chemo. Your nails fall off and after a few treatments you start to bleed wherever you have soft tissue -- lips, fingers, pud. I get a clear and frightening picture of that, but don't stay long. My mind instead lands on the tiniest of thoughts and spends an inordinate amount of time wandering around there, as if this small thought is more compelling than the fact that I am about to feel very, very bad for quite awhile. Last night, after the requisite 4:00 a.m. pee break, I could not stop thinking about how complicated verb tenses are in English. I was stunned by the sentence fragment "I would have had to have had"; I couldn't get that absurdly complicated snippet out of my head: "I would have had to have had..." Jesus! What a tortuous way of getting to the point. I finally had to write it down to get back to sleep. On my bedside notepad is a barely legible scrawl, but with effort you can make out a puzzled protest against my native tongue: "wd have had to have had." Such a sad little puddle of verbal quicksand. 

Tonight I realize that if I didn't have these little places to hide, to sink into, I'd have to be with the crumbling nails and the mouth sores. I'd have to face that survivors tell me different stories about ACT chemo than the doctor does, and that the survivors have a vested interest in telling me the full truth and my doctor has a vested interest in withholding it. Tonight if I get scared or sad, I am going to look for another tiny place to hide in my mind. I don't know where it will be, but this time I will feel more grateful that those places are there.