Thursday, April 29, 2010

blustery day

Anyone within 150 miles of central Connecticut experienced today's winds, no? Wheee! What a leafy, twiggy mess! Laura and I walked around the West Hartford reservoir, nearly alone on a flotsam- and jetsam-strewn road that ordinarily is crowded with walkers and bikers. Half the walkways were closed off because of fallen branches, or the danger thereof.
But what a beautiful time of year this is. All the trees are sporting the newest shade of baby green, a green my kids say I jabber about every spring. We stopped a dozen times to touch the softness of the new leaves or to gently unwrinkle one that was still emerging.

But it did feel a little risky, being out there with trees shedding anything that the wind could take away. The surf was actually up on the smallish reservoir, and I saw two geese dragging boogie boards in their beaks back to the west end of the lake to catch some more waves. Laura held her hand over my bald head to protect me, which was sweet and funny. Had a white oak fallen over, I'm sure her hand would have broken its fall.

It would have been a drag, though, to have been killed by a falling tree, after having just finished chemo. I imagine the news of my demise spreading, and people thinking gosh, it all happened so quickly! "Yep," Laura would say, "It was quick. The tree hit her and that was it."*

Someone did rear end our car on our way home, which we took as a sign from the Universe not to press our luck. Still, I want to have the last laugh at least this once.

Here's to disasters that didn't happen today!


*thanks to Woody Allen, circa 1963, for the seedling of this idea

Sunday, April 25, 2010

T'ai, Tao, and paradoxes

One day, seven-year-old T'ai got off the school bus and walked slowly down the driveway with a deep wrinkle in his brow. "What's wrong, T'ai?" I asked. He shook his head slowly. "Something's really bothering me, mom." "Oh, sweetie," I say with concern, "what is it?" "Well, you know how there's nothing at the end of the Universe? If you try to think of what that means, you're picturing something. And it's not something; it's nothing. That really bothers me."
Around the same time as he was working on this "something" and "nothing" paradox, T'ai made two drawings. On one side of a sheet of paper is "Chaos," seen above. Though the drawing represents chaos: zee, ding, bang, powee! boom! -- it is also kind of tidy, orderly.

On the other side of the paper is T'ai's drawing of "Order." I love that this depiction of order is almost as chaotic as chaos -- "order" comes out of various instruments, but they still make sounds like "KERCLASHEROOZI." And there's still a big boom in the middle of it. These two drawings get at some sort of paradox that I'm running into: if you seek order, you'll find chaos. If you surrender to chaos, you will find order.

I feel like I've been living that paradox while I've been fighting cancer.

Taoists* are familiar with -- and even seek out -- the empty space contained in the core of paradoxes, as in this passage from the Tao Te Ching:

We join spokes together in a wheel,
but it is the center hole
that makes the wagon move.

We shape clay into a pot,

but it is the emptiness inside
that holds whatever we want.

We hammer wood for a house,

but it is the inner space
that makes it livable.

We work with being,

but non-being is what we use.


The many paradoxes in the Tao Te Ching are often quoted. Here is another passage:

If you want to become whole,
let yourself be partial.
If you want to become straight,
let yourself be crooked.
If you want to become full,
let yourself be empty.
If you want to be reborn,
let yourself die.
If you want to be given everything,
give everything up.


In an early chapter of the Tao Te Ching, it says "The Tao is the gateway of all understanding." This blog is for me a gateway to understanding what is going on as I deal with cancer. I also believe that, "Thoughts and feelings disentangle themselves when they pass through the lips or fingertips." Processing my thoughts and feelings through the blog has allowed some lasting disentangling to take place in my mind and in my heart.

However, since The Tao also says:

The tao that can be told
is not the eternal Tao
The name that can be named
is not the eternal Name,


I will note here that "The experience that can be blogged is not an experience."

Final paradox for the night: I'm getting better and I'm feeling crummier. More when I've resolved that one.

*(By the way, I should finally acknowledge that it took a bit of nerve for me to name my blog "tao te chu." I have no sense of how familiar people are with Tao Te Ching, the Taoist canon attributed to Lao Tzu, written three or four centuries Before the Common Era. "Tao" is generally translated as "The Way." "Te" translates to something like "virtue" or "character." And "Ching"  translates as something like "great book" or "classic." 

Since it's pronounced Dao Da Jing, I took advantage of the blog name sounding a bit like "the way of," stealing a fragment from the French "de." So there are two loose translations, in my mind, of tao te chu: the way of chu, and the way of chu's character. I make no claims on virtue; just character.)

Thursday, April 22, 2010

to boob or not to boob

Almost wore breasts today. I have a new client coming in -- someone who has waited patiently since February. I wanted her to feel welcome.

Welcome to my therapy office! I have worn these breasts for you.

Pretty quickly, I scrapped the idea, though. Would I have to keep wearing breasts whenever I see this client? What, and then remove them for my 12:00 appointment, who is accustomed to the cookie sheet look? Slip into breasts on alternating Thursday mornings, mark it in my calendar?

So no; no breasts today. I have yet to find the right occasion.

It's Day 4 after chemo and the pain arrived yesterday afternoon with the reliability of a commuter train. The concoction percolating within brings on unexpected gasps of sharp bone pain, even in sleep. I probably should have canceled appointments for today and tomorrow when last week's treatment was delayed, knowing the likelihood that these next several days would be hard ones. As it is, should pain grip me in session, I hope to move smoothly from a gasp to a sincere expression of empathy and concern for the client: [gasp!] "That sounds painful! Tell me more immediately!"

Uncle Fester

Don't even try to deny it.

Tuesday, April 20, 2010

from the sublime to the....

Funny! Last night I tried out a pair of fake eyebrows, since the real ones are getting pretty thin. Special thanks to Marilyn, who pointed me toward The Vermont Country Store, which as we all know wins the prize for having the most random inventory ever, including temporary tattoo eyebrows.

I cracked up when I saw them on, but waited to have Laura discover them when she came upstairs. We laughed till we wheezed. Maybe you had to be there -- it's all so weird, these transformations of my body. We've had some good laughs over things that are so strange (and generally not welcome) that there is nothing to do but focus on the weirdness, shake your head, and laugh.

It took me two tries to approximate the correct placement, and I wish I had taken a picture of the first attempt, with one eyebrow way higher than the other, which made me look like Colonel Klink in Hogan's Heroes. When I removed the poorly placed one, I unwittingly rubbed off some more of my real eyebrow. Yeesh.

I actually still have a few too many hairs left, if that can be said, to use these falsies, but I'll be brow-bald soon. The fake ones aren't bad! -- unless you get up close. And then they're really funny.

Monday, April 19, 2010

don't forget the joy, mom

Yani really gave me What-For on the phone last night after I talked to her about the mindshift I wrote about yesterday. She scolded me through frightened tears: "None of this stuff you want to do matters unless you are HAPPY, mom! Macaroni and cheese makes you happy!"

Focusing on being happy is the main strategy I should take, she insisted. I think she's afraid I'll try to be an ascetic who deprives herself of delight and joy while following a rigid battle plan for Operation Anti-Cancer. Wait a second: ascetic or soldier? I certainly don't want to be either one.

The kids and Laura -- and I'm sure others -- want to make sure I acknowledge and appreciate the milestones -- surgery, the end of chemo, the eventual return of my hair, the return of delectable food. No one wants me to have my fists poised so rigidly that I can't embrace joy.

Yani said it scared her that I wrote "I no longer assume that I will survive this disease" in yesterday's entry. She said what she needs to hear me say instead is, "I can deal with whatever I need to do to get better." I can say that. I can deal with whatever I need to do to get better.

I can say that and mean it. But the truth is that I feel safer not assuming health. I feel safer assuming responsibility for health.

Someone once said that growth is the increasing ability to bear competing truths. She and I are both right: the soldier and the singer -- and the sloth! -- all need to come fully alive in me.

Anyway. I'll acknowledge today's milestone. My counts were okay this morning, and I had my last treatment. When I got disconnected from the machine, all the nurses came in with little hats and noisemakers, and I half expected them to break into the "Friday's" birthday song. Then they presented me with the "Purple Heart Award." One nurse assured me, once more (I had asked, once more, naively hoping for a new answer :-/), that in just 6 months to a year I will feel totally well again! Blaaaaat on the noisemaker and give me a wobbly fist bump, girl!

No, but the nurses at the infusion center have been fantastic throughout this whole process, and this little send off was very sweet.

Still, my first thought as I thanked them and accepted my "award" was to wonder how war veterans feel about chemo sloggers getting the Purple Heart Award. I suppose I have been wounded by the enemy, but still.

You see some of the challenges the soldier, the singer, and the sloth are all up against.

Laura and I celebrated by walking my loop. She carried my jacket the whole way for me, to celebrate. We ate leftovers, to celebrate. We are having a quiet evening on our respective computers, to celebrate. We just put the recycling and garbage cans on the street, to celebrate. I am going to bed early, to celebrate today and to be ready for tomorrow. Competing truths.

Sunday, April 18, 2010

a shift, a palpable shift

By now, I have accrued a large pile of books about cancer. I keep the books with the awful knowledge that someday someone I care about will have a pressing need to read them, and I will offer the pile to that person. Still, sometimes I wonder if I should get rid of the books. I worry that it's that Law of Attraction thing again: if you build the book pile, the cancer will come.

I've read a lot of books about cancer in the past 6 months. About the lifestyle changes cancer asks of you. Dietary recommendations - some simple, some convoluted - for preventing its recurrence. Spiritual transformations that can or should occur. Attitudinal or yogic postures to adopt. Things to do, things not to do. Things to think, things not to think. Miracles to expect, losses to accept.

The cancer books I've read have ranged from annoying to dull to inspiring to informative. But none has been transformative, none has offered an epiphany I haven't already pointed my own bellows at in an effort to strengthen my time-limited spark of a body, to warm myself by the blaze of my soul, to sustain the little flame of the Bic lighter of my mind.

Something shifted, though, while reading "Anti-Cancer: a new way of life," by David Servan-Schreiber. When Gretchen recommended it a couple of days ago, my first, second, and third thoughts were, "Ack. Another cancer book about eating broccoli and omega-3 fatty acids." Still, I read it in its entirety yesterday, finishing it while Laura was on campus late last night dealing with a passel of sophomores who had tried to trip the light fantastic on some vodka. When she got back at 12:30 this morning, I was sitting up in bed, wide-eyed and needing to talk about what was awakening in me.

I don't think it was just Servan-Schreiber's book, though I recommend it to anyone who is healthy or is working toward being so. I didn't actually learn too much I hadn't already known, but I heard it in a different way this time and with this timing. As I read, I could feel myself shifting from paula who is nearing the end of chemo, to paula who needs to stay cancer-free. These offer wholly different vistas and tasks.

Though I am not to blame for getting cancer, there is something about my body that made it possible for it to grow in me. I have to focus on making my body an inhospitable place for cancer.

I am not yet sure what that will look like, precisely, but I do know that I need to place my health at the center of my life.  The cancer cells are likely to be working on gaining a toehold over the next 5 years, especially since I am triple negative (and thus more susceptible to recurrence than those who are receptor positive). I need to be more vigilant and determined than those cells are, to have more stamina than they. I need to see this not as a 6-month ordeal that ends with chemo, but as an ongoing challenge to my internal GPS. It is Serenity Prayer stuff, carved deep.

For one thing, I need to frame my days around getting enough exercise (did you know that cancers vary in the amount of exercise needed to reduce chances of recurrence? "For breast cancer, there seems to be a measurable effect after 3-5 hours a week of walking at normal speed. For cancer of the colon and rectum, twice as much is needed to have a comparable effect"). I'm not bad at getting enough exercise when I am well, but I squeeze it into my schedule instead of putting it up there with eating and sleeping. This is that hackneyed story of putting the big rocks in the jar first.

I absolutely need to get my immune system stronger. That is clear. It has taken a serious beating by chemotherapy, but it had to have been weakened in order for me to get here in the first place. It's distressing to have it noodlier than ever as I near the end of treatment, but this is the kind of situation where my Doing self will stand me in good stead. I can work on this. Maybe if I focus on strengthening my immune system, I won't just kill cancer cells, I'll also be able to fight off the tiny warts that keep appearing on my right nostril and which any healthy immune system would handle without missing a beat. I tell you, I'm thinking big.

This mindshift means my life cannot be constructed around my private practice; it must be the other way around. How will this work? I am not sure. I am just clear that that needs to be the order of things. I'm clear that if I just go back to my full client load, life as it always was, and then have a recurrence, I will know that I hadn't done all I could.

If I design at least the next few years (if the cancer doesn't recur within 5 years, it is extremely unlikely to recur at all) around warding off a recurrence, the cancer might still return, but I will know I've done my job as steward of my body.

Still and all, I do not want my identity to be too wrapped up in she-who-is-fighting-cancer. I don't want my Doing self to overdirect my Being self, which also needs attending to. We all have this challenge, I know. But cancer brings another dimension to it. It is a delicate balance, a dynamic tension, a Whole-Life-Sudoku that I will be solving as I go.

And is there a tension within me that wonders if I really get to do this, if I am allowed to focus on my health while Laura works 80 hours a week? Oh, yes. It's the same part of me that is quietly startled when she says, "Wonderful. Please do whatever you can to stay well." Can this be true?

Tomorrow I hope to have enough of an immune system to tolerate my last Taxol treatment. The doctor worries that the toll of this last treatment may outweigh the benefits. Full steam ahead, we've decided over and over again, tattered flag waving and nose warts proliferating. "Failure is less frightening than regret."

Permission to feel crummy for the next 6 weeks or so (I am optimistic, despite word on Infusion Street that fatigue and bone/joint pain tapers over 6-12 months), and then gradually but decisively shift toward making my body unwelcoming to disease.

All this is easier said than done. Again, I don't yet know what it means to take this on. I just know that I must accept that cancer found me to be an acceptable host, and that I need to do what I can to change that. I am aware that at one point I assumed I would survive this disease. Now I really, really hope I do, but I no longer assume it. Chemotherapy has been nothing if not humbling.

I've said for many years that I could live on nuts, seeds, fruit, and berries, and now I get to put my money where my mouth is. Finally, I get to eat more like a cavewoman. One who, while undergoing treatment for cancer, not quite so strangely as I had thought, has been guided toward acquiring a taste for sushi.

Saturday, April 17, 2010

conjoin

A year ago was the memorial service weekend for both of our parents: mom's service was on Friday, a beautiful and simple Quaker ceremony, with stirring, mostly spontaneous tributes. Pop's service was a more formal affair put on by the College on Saturday.

I wrote a bit about my amazing mother in the entry written the day before the anniversary of her death, February 28th.

Those who were present at the memorial service for my dad last April know from my eulogy about his desire to learn and his vocabulary lists. If you want to invoke his spirit for a few minutes, as I tried to do in the eulogy, you can read the tribute at http://www.conncoll.edu/news/chu/tributes.html. There's also a fabulous little video of him at http://www.conncoll.edu/news/chu/.


I've kept hundreds (a fraction of those he wrote) of these vocab lists of Pop's, and often stick them in with a letter I'm sending to someone who knew him. I've just sent this one off to some old friends of my parents, the Fishers.

The list includes: the great triad, natural process, entelechy, mimesis, tertiary, apposite, conjoin, tendrils of plant, intuit, plenitude, epiphany, immanence, immanent state, ventriloquism, paradigm, hermeneutics, exegesis, arabesques, oracular, oracle, intractable, a whiff, nascent, crimp, racked, scrawny, heretical, deciduous, philander off, effloresce, obeisance, inhere, inherent, misanthrope, misdoubt, cloak, hermetically, emasculate. At this moment, I am in the best state of my mind. Tranquility is the key: 1/18/86.

Each word or phrase has its Chinese translation scrawled next to it.

I cannot overstate my gratitude for having had parents who wanted to learn, who were so directed in their lives by curiosity and awe. I miss them, very much, but carry their curiosity and awe inside me. Thank God, thank Goodness, thank the Whole of It.

Thursday, April 15, 2010

game postponed

Hello, sports fans. The last game of the season has been postponed because not enough players on the home team showed up. The ref called it, flatly, with arms flailing, before I had even gotten to my seat with my popcorn.

Two weeks ago, the team's numbers were also below the "acceptable level for treatment," but I persuaded the ref to change her call and we charged ahead -- her with one eyebrow raised, and me knowing I had gotten away with getting tagged before touching base. Today I really, really wanted to play this final game, but all I had was one underslept, floppy yet stiff-kneed left fielder who was nodding off on the bench. Nobody else on the team even freaking showed.

Oy! This metaphor! It's gotta be a stress response.

So I got turned down from today's treatment. My white blood cell count is close to zero. I have to undergo a series of shots to jump start their production. It means insta-bone-pain for several days, but I guess that was going to happen soon anyway. I have erased "Try to run" from my calendar, something I had planned on doing on the steroid rush that would have come tomorrow if I had gotten treatment today. No rush for p.

If the shots do the trick and my counts are high enough, treatment will take place on Monday. 

I know this happens. It's a small thing, but I'm really disappointed. I've been looking forward to April 15th (how many other taxpayers can say the same thing?) for a long time. I do feel like crap, and the doctor said she could see that in my numbers. So I'm not crazy, which is nice. Just disappointed.

It throws off a lot. Clients scheduled around expected bone pain days will now show up in the middle of them (don't say it). Heath and I are going to an all-day workshop next weekend on what will now be a hard day. I'm also scheduled to go to the Stowe (Vermont) Weekend of Hope in two weeks, a retreat for folks fighting cancer, and I won't be as far out of treatment as I had expected to be. I'll be whupped. I might end up not going to that now because of this delay, though the weekend is intended to be the nurturing, restorative cap on the whole shebang.

Here's the really pathetic thing: to cheer myself up, I bought new dishwashing gloves at Whole Foods on our way home from the infusion center. So far, this has been the high point of my day. I've had to use gloves for the peeling hands and reptilian nails since chemo started. These gloves are lined and longer than the ones I've been using. Ah, geez. Truth? They're almost exactly the same as the ones I've been using. But they're new, and they're the only thing that called to me in Whole Foods. How sad izzat?

Wednesday, April 14, 2010

last round tomorrow

Tomorrow is my last chemo treatment. I actually have ambivalent feelings about ending treatment -- a certain anxiety surges. Still, of course I am very much looking forward to feeling better in a month or so, and the last treatment brings that promise.

I'll write more from the infusion room, or soon thereafter. I have some things to say. But for now, I wanted to post this little face from Laura that greeted me on the kitchen table this morning. For those who will squint to make out the print, below the face it says: "Last treatment tomorrow. Love you madly."

I just love that face.

Avocados are comfort food, something I can eat once again with  pleasure. If she had done the second face, with an oxycontin nose -- which one could aptly do! --it wouldn't have been nearly as cute, you know?

Tuesday, April 13, 2010

hypotheses, inevitably

Was it that mimeograph ink I inhaled so deeply as a kid? Woof, I loved that smell. I was so happy when the teacher hadn't had time to copy stuff ahead of time, and dashed out of the classroom for a moment, returning with pages of purple ink still drying. I held the whole pile of math sheets to my nose and filled my lungs (and brain cells, I guess) with their fumes before taking one and passing it back. Did that give me cancer?

Was it MSG? I imagine in my time I've had more than I should.

Or the fact that I popped dozens of nickels, dimes, and quarters out of Lee's coin collection books and bought Beatles and Herman's Hermits records with the booty. Not just that I did it, but that I felt so guilty for so long.

What about Fizzies? Fizzies couldn't have been a good idea. A few times I sucked on them before dropping them in water. Some of them contained that red dye # whatever it was. Cheetos. There's not a natural ingredient in those. Munchos. Jelly beans. Necco Wafers. Jujubees. Sugar feeds tumors, right? I used to take loose change from my dad's pockets and ride my bike down to the corner store to buy candy. That's guilt AND sugar.

When I was maybe 4, I ate the H and the A, and maybe even the P, off a set of those chalky sugar "Happy Birthday" letters you put on cakes. A Kresge's saleswoman caught me. Boy, was I embarrassed. She told mom, who didn't need to scold me, I felt so ashamed. Shame is toxic, right?

Maybe that awful first sexual experience damaged me, made the cancer happen where it did. Maybe I couldn't let go of my resentment toward him, or toward myself for letting it happen. Maybe I held that shaming experience in my breasts.

Maybe I've been too passive all along. Haven't stood up for myself, and that translated to not being vigilant enough on a cellular level. There are too many examples to name that feed that hypothesis.

They say an angry personality invites disease. But maybe I'm not angry enough! Maybe, since I don't feel angry, I'm repressing it, and that made me sick. Maybe I should work myself up to being angry about something, then expressing it somehow.

Or the divorce -- carrying all that guilt -- there's guilt again. And the grief I held when the kids weren't with us -- that was the worst. It was so hard, how I missed them. Was that grief changing my cells?

I don't think it's my parents dying in rapid succession last year. Though some cancer books ask "what has happened in the past year or two?", the doctors all seem to think my 1.2 cm tumor had been growing for several years. And heck, Ellen's grief and breasts are the same as mine was and were.

Several years ago I wasn't exercising enough. Just sitting around having counseling sessions, coming home to cook supper, grade student papers, watch over the kids' homework. I should have sweated more.

Maybe it's that I've held the cell phone too close to my head. Or that I've stood too close to the microwave. Or spent too much time on the computer. Maybe I am too vigilant about getting rid of poison ivy in our woods and shouldn't use that spray.

On the other hand, I only drink soda like once a year, at some picnic where that's all that's left. When we were little, though, Lee and Kevie would make us root beer floats when the folks went out. They'd serve them over the kitchen's half-door, like Ellen and I were customers and they were working at an ice cream shop. I sure did love those moments and those floats. I know those floats didn't get me sick; maybe moments like that kept me from getting cancer earlier.

A girl-beer or a margarita is about all I drink, and those only rarely. The alcohol I choose generally has to taste like lemonade gone bad, but in an okay way. I stop after one, and usually think, "What the heck did I just drink that for? Now I don't want to do anything." I would think that level of moderation might pay off, though, in not getting cancer.

But maybe I should be drinking more red wine? I've read those reports about red wine. I'd have to use my inhaler, since most alcohol - even girl-beer - makes me wheeze. Still, I'll take an inhaler over cancer. That's an easy one.

They say people are more susceptible to cancer if they don't get enough sleep. My sleep has been gefromped since menopause. Did a lack of delta waves set off other waves that set off a ripple of cancer cells?

Do I not laugh enough, failing to clear out toxins? Should I be more social? Volunteer more? Serve the community...I stink at that, at outreach, at group things. Maybe not doing enough volunteer work gave me cancer. Maybe I should go to Quaker meeting more often; just sit, breathe, and be with the power of Grace and Goodness and Mystery. Breathe in love; breathe out cancer.

I have lots of hypotheses. I doubt any of them have any validity at all, yet they just keep coming.

But random? That this was randomThat my little meaning-making machine of a mind cannot take in.

Monday, April 12, 2010

chutzpah

Found a tick crawling across my head this morning. Slapped a piece of tape on my scalp to pick it off.

I know "The Four Agreements" says not to take anything personally, but I found this offensive. Crawling on my socks; sure. My hairless head? Gratuitous cheek.

Saturday, April 10, 2010

waterworks

This is not a complaint. This is sharing information about chemotherapy, the kind of thing that websites, doctors, and most everyone else will not tell you about.

The nose runs nonstop. Non. Stop. Chemo implants a sump pump in the sinuses. The sump is clear, almost water. I feel like one of those old guys in Maine you run into at the corner store. If it's wintertime, the runoff from his nose is frozen. It's been there so long he seems unaware of it, and you carry on the conversation trying to ignore it. If it's summertime, well, now and then he'll give it a wipe with a handkerchief.

My nose has been dripping this "almost water" since chemo started. I could blow my nose every two minutes and, let's say...feel as though it is time well spent.

It does seem adding insult to injury that hydration is my main job, that that has been very difficult with the unpleasant taste of water (this is much less of an issue with taxol, but still a challenge), and that meanwhile, I have this dripping faucet on my face.

Not a complaint. Just sharing info.

A friend who is in the midst of a much longer and harder chemo regimen than I am responded to my blog entry about our sewer problems with her own story. Hers, remarkably, was also not a complaint; just info sharing. Her pee is so toxic that it could burn you if you touched it. Her poop is so toxic that the bacteria that are supposed to break down the stuff in her septic tank are killed and can't do their work; their septic tank is continually needing to be pumped out, and the leaching fields are unable to function.

Hmm. That just totally deflated my little nose story. Still, I think these things should be told. No need to comment: nothing to be said, nothing to be done.

solidarity

Here I am with my beloved brother, Lee -- newly shorn -- and beloved sister, Ellen. Beloved brother Kevie is kind of balding anyway (sorry to out you, Kev), so I give him a total pass on shaving. He's also in Italy, probably stuffing himself with pasta and happily ignorant of the family trend.

The three of us walked my loop at dusk, then went  out for sushi. And it tasted good! Food tasted good! Blessings abound. So does solidarity.

Friday, April 9, 2010

captain quasi-courageous

So, this therapist....the one I haven't actually met, but was afraid I'd stick with because I didn't want to offend her? We were scheduled to meet a couple of weeks ago. She called from Rhode Island the morning of our appointment, and it was one of the days of the horrible flooding they were having. She was stuck at her house in Rhode Island and had to cancel our appointment, but she'd be back in touch in a day or two.

That was fine with me. No worries.

Then I didn't hear from her and didn't hear from her. I don't do that to prospective clients, keep them waiting for over a week. I knew that the flooding was important, but I'd at least have renegotiated for a bigger window of time. "We're still bailing ourselves out! Give me a few days." Something.

Yesterday she called and left a message saying, "Hi, paula. I hope you got my other message. I'd love to set up an appointment...." I called back and we set up a time for next week. But afterwards I didn't feel right. The chances of her actually having called my cell phone and my not seeing that a call (or message!) had come through are very slim. I would much rather have had her say, "I'm so sorry. I totally spaced out and forgot to get back to you." But either she lied about having left a message or -- I'm being generous here -- she got a wrong number and didn't listen to the machine (my voicemail message is pretty clearly me, as it addresses clients, etc.). Either way, I felt like something was off.

So today I called to cancel. I've placed a call to another therapist. Okay, full disclosure, which is why I only get the moniker of Captain Quasi-Courageous: I didn't speak with her directly -- since we've never met, I didn't feel like I needed to. I left a message saying, "I don't feel ready to begin work with you and would like to cancel my appointment. Please let me know if you would like to discuss this, but I feel pretty clear. Thank you very much for your time."

I really thought that small issue would always be between us, and that would suck. No lectures from the blog peanut gallery about how I could have confronted her about the lie, how that would have been a great way to start therapy. No fanks.

Oy. For me it was a big thing. I am trying to learn to listen to my hey-wait-a-cotton-pickin'-minute part over my don't-you-worry-about-little-old-me part. It is a steep learning curve, but don't you worry about me. I'm on it.

Thursday, April 8, 2010

progress

Just wanted to show that I've successfully extended my reach, something I imagine most people don't bother to measure. The tiny writing you see shows the furthest place I could possibly reach with the tip of each middle finger two weeks after surgery.

This may not seem like much of an accomplishment, but for me, this is the difference between reaching the squash soup on the top shelf and settling for the black bean bisque that is in front of it. Someday I will get all the way to the chicken broth at the back.

Laura is in Tucson for five days, visiting her dad and her sister. I agonized over whether or not to join them, but worried that the trip might actually be more taxing than the visit would be restorative. As it turns out, I'm glad I stayed. The bone pain continues to annoy me, like someone's bratty kid kicking me in the shins and, somehow, ribs as well. With each round of Taxol, the pain begins earlier and lasts longer, squeezes harder. I'm still struggling with how to medicate myself in these times (sorry, followers who keep urging me to drug up), and find that I wait until I'm really, really uncomfortable before surrendering to meds. Mostly I've been getting by with ibuprofen (4 at a pop) during the day, and, for 4 of the 7 nights so far this chemo round, an oxycontin at night. There's always a terrible battle of wills over this decision. It's a weird Id versus Superego thing.

This is my upbringing, of course -- the Superego on steroids. "Don't mind me: I'll wince myself to sleep." Our folks never took medicine unless absolutely necessary, and we all learned to be big on self-sacrifice in general. When my mom got a brain tumor (benign, but the size of a tangerine, wrapped around her optic nerve) in 1984, she felt so bad for the kindly New London doctor who wanted to "try" the operation on her -- such a great learning opportunity for him, she thought. We had to beg her to go to the Philadelphia Eye Clinic where they did this operation multiple times a day. But he's such a nice guy, and he really wants to learn how to do it, lamented mom. Egad.

I am in the middle of a potential example of how well I learned the self-sacrificing lesson. I hope I am wrong about this, but as insurance against my own inclinations, I am asking directly for support. I'm on the prowl for a therapist. I've made an appointment with someone near by for next week. My only anxiety about it is that I am at risk of staying with a therapist with whom I'm not entirely comfortable but who seems very nice and wants me as a client. I don't want to find myself thinking, "But she's so nice and she really wants to learn how to do it." If I don't report back in, say, three weeks that I feel GREAT about this connection, I would appreciate a collective glass of cold water in the face.

A final note is that I have felt very comfortable at night while Laura is away (see "my husband, Laura" entry for how she can heroically frighten off intruders by peeing like a man). In the past, I often felt a little ill at ease sleeping alone at night with a small (deaf) dog at the bedside -- you know, acutely aware of sounds, creepy thoughts about how one could get into the house, that kind of thing. It is interesting to find that things that go bump in the night are actually less frightening than things that go bump in the breast. Since cancer, I have been unafraid of things outside me.

Monday, April 5, 2010

fixing my light

A lovely ginger jar lamp that belonged to my parents went on the fritz last night. A variety of bulbs demonstrated that there was a wiring problem, and when I checked the wire closely, it gave me the willies to see how old and raggedy it was. I thought of passing it to an electrician friend at Laura's school, knowing this would be a no-brainer for him.

Then I thought otherwise. Feeling this was somehow a metaphor in the making, I went to the hardware store to get new guts for the lamp. I needed some help from a kindly store employee, who handed me the wire and the lightbulb fixture, saying, "Remember. Ribbed side of the wire goes to the silver screw." I drove home repeating out loud, "silver ribs, silver ribs."

I took apart the lamp with eyes squinting in concentration, memorizing the order of the various bolts and wires. The entire world is made for right-handed people, from the angle of butter knives to the righty-tighty of screws (which spins the wire away from the screw if you attach it the way one wants to as a left-handed person). Adapting as always, I attached the ribbed side of the wire to the silver screw, the plain side to the brass screw. Three times. Only a trained electrician will be able to detect the error visible in this first photo, a matter of the order of the parts strung onto the wire. Spatial relations are a challenge for me sometimes. I have to do it wrong, apparently a couple of times, before I can really grasp that the wire needs to be threaded through everything in reverse order.

I was glad to exercise a sense of agency about this old lamp. I enjoy the trial and error, then the satisfaction, of fixing things, and people who know me well indulge me in my need to do little projects like this. Let me set up the phone! Let me tighten the door knob! Let me get the hair out of the drain. Let me tighten the legs on the table.

What's the metaphor in today's project? I felt good about fixing my light. I even visualized my ribs as healthy, shiny, silver. When you're fighting cancer, I tell you -- you step on metaphors everywhere you go.

Thursday, April 1, 2010

un bon jour

Oh, I do loves me these steroids. This 18-hour period when they are coursing through my otherwise weary veins I feel so much stronger. I actually ran 3 miles when I got home from today's 5-hour Taxol  infusion. I didn't run fast, but I didn't walk. The sun was shining and I got to work on getting my head some color; I hope soon it won't look like I am wearing a bathing cap. You wanna talk pale? I don't care what color you are on the rest of your body, if you're bald bald, your scalp looks FAKE until you give it some sun.

I do find that when I am approaching children especially, I put the hat back on. I dunno. I don't want to scare them. A hat seems silly, though, when it's hot, so I take it off, put it back on, take it off, put it back on when I'm doing my loop.  It's interesting to see for whom I put it back on. The elderly couple walking toward me? Nah. Surely they can handle this. I will note here, though, that fewer people of all ages say hello to me when I don't have a hat on; more people don't respond to my greeting. Are they giving me privacy? Maybe that's what they tell themselves, but that's not how it feels to the one who is just hoping for hello.

The adolescents I pass? You betcha; they get the hat. The other day some high school girls were parked at the light by our house and I walked up the driveway wearing a black beret. They were all shouting at me, jeering really, saying, "Bonjour! Bonjour!" They kept it up until I disappeared into the house. I thought of turning around and taking off my hat, so they would see that I am bald, but I actually thought that would be the less kind thing on my part. It would be a scolding: hey. I have cancer, doofuses. Doofae. So I just let them make fun of me. And the silly thing is that it stung a bit. Enough so that I haven't worn the beret since. Silly paula. Doofus. Doofa.

As I ran on this gloriously warm day, by the way, I kind of resented that even though I don't have breasts I still can't take off my shirt. Seems like that ought to be a perq of all this. Be like the guys out tossing the frisbee with their shirts off, flipping the chicken on the grill, washing the car sensibly half-clad.

But some very good things happened today, the tyranny of the shirts aside. My beloved sister Ellen brought me lunch at the infusion room. She walked in with a tight hat on and said, "April Fools!" I laughed -- I assumed she was pretending she had cut her hair and that was the joke. I wondered how the heck she got all her hair under the hat. And then, boop! Off comes the hat. It's perfect. She looks beautiful.

Also, we got great news about Laura this afternoon. She had a CT-scan on Tuesday, since she has been having left eye pain and swelling, a bit of a tremor, headaches on the left side, too. Enough weird stuff so that we feared the worst. Turns out that it's an infection behind her eye, visible on the scan as an area of fluid. And a round of amoxicillin ought to handle it. Can you imagine if today's news had been bad? Wow, wow, wow. Thank you, thank you, thank you.

Had a little bit of a crying jag this morning with Dr. D, who was very tender and reassuring as she palpated every inch of my chest and abdomen looking for masses. I'm tired of chemo, scared of stopping treatment, worried about recurrence. Was the jag from the steroids, or was it the poopy sleep? Was it worries about Laura? Or merely my unvarnished weariness and fear? I don't know. I do know that it was the first time we were both there in a moment of intimate connection. I set aside my witty, stalwart self, and she set aside her expert clinical self. It was a good, hard, important moment.

Tonight I am likely to have trouble sleeping. By tomorrow I will be chemo sick again. Bone pain comes on Saturday. But right now, I feel close to well. I even have to expand my continuum of moods (see "big toe" entry for its pathetic limits) to describe it: I feel content.