like a garden hose stuck on rock

Bill Cosby did this great stand-up routine in the 60s where he's a little kid being left in his crib when his parents go out. He notices they are getting ready to go some place and keeps asking, "Mommy Daddy going out? Mommy Daddy going out?" There have been times lately when I am like that kid, just kind of wanting to know where Laura is, without realizing that I want to know this. I'll call her name, and when she answers, "Yes, love?" I cannot imagine what I was needing or wanting. 

In recognition of this little zit of angst that has appeared in my personality, I was going to label this post "I have forgot why I did call thee back." Then here in the text I would recreate the image of Juliet, who with mindless urgency calls Romeo back to the balcony as he is leaving. But as I recall, that whole situation ended pretty badly, and I am actively avoiding bad juju these days.

Better to refer, however tritely, to Piglet, who calls to Pooh, like I do to Laura. Pooh answers "Yes, Piglet?" "Nothing," said Piglet, taking Pooh's paw. "I just wanted to be sure of you."

We are both somewhat distracted as chemo approaches. We drop things more, put things in the wrong drawer, close the flue several times or not at all, bring home canned peas instead of pears (actually, no. That was my dad, circa 1970 -- "they spelled so much same!"). While driving, we've taken more circuitous routes than ever -- oh, there goes the turn I have taken a thousand times. It's like you are moving along doing ordinary things, while part of your brain is trying to solve that problem of getting the fox, the chicken, and the grain to the other side of the river. It takes up brain cells.

I've had three appointments this week. One with the surgeon, who did not need to drain me a 7th time, to my delight. And the burn is finally healing, thanks to time and my dogged efforts to eat protein and slather the burn with calendula. Only thing the surgeon's staff needed to do this time was to cover me with electrodes for a baseline test for lymphedema, something they need to check on every 3 months for two years. Arm drainage is working at this point, I'm happy to report. But I don't understand how electrodes (including one on my foot - "for grounding," says the nurse, which left me feeling a special connection to that green wire on dimmer switches) can measure what's happening with lymph drainage in my arms. A lot of this seems a bit like the Wizard of Oz and his big machines, but it's really a little guy doing the best he can with a hoop and a stick.

Next was a MUGA scan of my heart. When I asked the technician what MUGA stood for, he said, "Haven't the foggiest idea." This seems interesting to me. If I spent all day doing MUGA scans, at the very least I would play with the letters until I came up with something plausible. Massive Unnamed Gawdy Appliance. Something. Anyway, it's a procedure in which you first get injected with some chemical and about 20 minutes later get injected with another one, this one radioactive, which binds to the first. Then they take a 20-minute video of my heart beating while I sit in the massive unnamed gawdy appliance. The "video" was a great disappointment. I thought it would look really cool, but the image was so crude that it could have been anything jumping around on that screen. I don't want it to seem like I underappreciate the miracle of my heart or yours. It's amazing and beyond comprehension, and I like very much that it beats. But where are those nifty, crystal clear, 3-D images that House gets when he and his team make their medical videos? 

The next day was the final huddle with the oncologist before chemo begins. We are still trying to fall in love with this person. Friends who know her tell us that we will. I'm not feeling it. She forgets details about my cancer that I would like her to have remembered, crammed for, or at least written on her hand before she walked in. She lost points by saying, "People who underwent X treatment are buried in the population." Sure, she was trying to talk statistically -- that stats weren't kept on one treatment -- but "buried in the population"?? You can't come up with something better than that when you're talking to a cancer patient?

Laura said something like, "Dr. A said we have a green light for starting chemo on the 7th," and Dr. D made a face like someone (Laura) had passed bad gas. "We? Paula is starting chemo, not you." Sure, sure, maybe she was trying to come to my defense, but it didn't feel friendly. I piped up and said in a chipper lilt, "Oh, I'd prefer to err on the side of unity in this!" She didn't throw the ball back. When she left the room for a minute, Laura said, "She doesn't like me!" and I think it's true. Is she homophobic? We always have to wonder. I know she doesn't know us yet, and we don't know her. But not to like Laura? Could she be crazy?

Good news is that my heart is "better than normal," say the MUGA results. See the 59 in the lower right hand corner of the photo? That's my heartrate. Not too shabby. Bad news is that the first 8 weeks of chemo can permanently damage the heart. I hate that idea. I hate that more than the swarm of mouth sores people talk about -- and that's saying something, because I dread that. Normally, I get one little canker sore and it's all I can think about until it's gone.

Dr. D sent us off with prescriptions for four anti-nausea medications. That's sobering. Downright staggering is that the 4th med is a suppository. So if you throw up the other three, you can sneak in the back door and pop this one in while your stomach isn't looking. I'm thinking I might delegate that job to Laura, with that saran wrapped finger of hers. I feel so bad that she hasn't had a chance to deliver on her gallant offer back in the day.

Here's an odd thing. Check out this tendon (not as eye-popping here in 2D as in 3D), which dramatically shortens my reach on the left side. It feels like they stitched the tendon to the wrong place. It's like working with a garden hose that usually reaches to the blueberry bushes, only now it's stuck on a rock and I can only water the mulch. Very frustrating. Oh -- I see I haven't shaved in awhile. Apologies.

I'll end this post soon, but want to note that it is now 2010, and we should all be in spacesuits, by my figuring. The new year starts out with memories of the past year, including my dad's death on October 30th, 2008. Then came the death of Ruthie, my vibrant and unstoppable sister-in-law, on January 7th, 2009. Then mom, on February 28th. Through it all, the Chu clan has come through feeling more grateful than forlorn. We were born and raised in love. We have each other, and we are in the thick of life with all this losing and loving. Blessings win out no matter which way you slice it.

haircut; stage 1

The hair thing is a group project. Ting cut my hair this afternoon -- stage 1 of probably 3 stages, not counting the stage where there is nothing left to cut. She gave me a nice little bob. Next will be a pretty short cut, probably right before chemo starts. Then, before it all starts to drop (scheduled, as you know, for noon on January 21st), a buzz-cut. That will be hard, I think. Not just the look of it, but the feeling of the clippers on my neck. It makes your spine crawl. I hated that feeling when I was a kid -- my sister and I had pixie cuts from the time we were about 5 to age 10, something our folks instituted when my mom went into the hospital for something or other and our braids were one too many for our dad. Pixie cuts are short, really short; the barber would finish off the haircut by running the clippers up the edge of the neck and hairline. If you've felt that, you know what I mean -- your spine curves involuntarily in response to the vibration. It must be what cats feel when we rub them the wrong way.

While Ting was working on my head, Laura's mom mentioned that a friend of hers lost her straight brown hair during chemo and it came back curly and white. I expressed my hope that my hair will remain curly, and ruminated silently to myself about the possibility of my hair coming in white. What would I do with straight hair? What if it's white? Ack. Ting helped me set all that aside by asking, imp that she is, "Hey, Mom, what if you finish chemo and you come out straight and white?"

Here's the bob. Don't feel bad about staring at my chest. Now's as good time as any.

an Amazon in mittens

Today I ran 3 miles, up in New Hampshire's cold, with Laura and Kim and two happy dogs. For the first time since surgery, I jogged without having to press hard, holding the left side of my burned and puffy chest. It helped that I got drained for the 6th time yesterday. Besides, it's too cold to feel much. The right side? Sgood. Streamline, like. The wind just blows past my right side, with none of that annoying resistance of a breast. I am an Amazon in mittens, silk longjohns, and the pantyliners (clever bandage alternative) stuck on the inside of any shirt I wear now.

Laura and Yani have been tending to the neosporin-on-burn detail, and chide me if I don't change my shirt's pantyliners often enough. Yani seems to get a kick out of piercing vitamin E capsules and spreading oil on my incisions. Since there are so few nerve endings left, you can be up close to something that looks threatening, but somehow isn't; like being near a lion (again with the lion!) behind thick plexiglas. Laura plays a game of testing whether I can feel when she is touching various parts of my chest, near the incision sites. Mostly I can't (at all), though sometimes I can feel some pressure. It is a little like that eerie cool feeling when you were a kid and you put your palm up against your sister's palm and then you feel both her finger and yours at the same time, and get the illusion of numbness.

I have some numbness in my mind, too, I have to confess. I find myself deep in thought, trying to map a path through the coming 4 months of treatment. Then I crumple that map, toss it aside, and begin to sketch again. The cancer books say to try not to anticipate and thereby exacerbate the worst of the symptoms. But they also say to brace yourself. Be positive but be authentic. Fight like a warrior.  Surrender like a possum. Exercise when you feel exhausted. Eat good foods. Eat what makes you happy. These are not always the same things. It's a complicated map and I get disoriented. I feel like that dog Steven Wright jokes about -- the one he named "Stay." Whenever he says "Come, Stay," the dog doesn't know what to do.

Then tonight, as I lie on the couch in front of the fire, I open another book. The author talks about the option of getting excited about chemo. "Survivors held an excited belief about their treatment," it says. I've read things like this before, but wasn't ready to soak it in. I can see it as an adventure, welcome my chemotherapy as an ally that is going to ensure my survival.  In this moment, it speaks to me. Now you're talking. There's a map that works for me. I'm going to follow it as far as I can. Though I know there will be miserable and frightening times when there is a section of the map that is badly smudged and illegible, I recognize it as my map. I go to bed this Christmas night clutching my clarity, tight.

severe metaphor shortage

I think in metaphors. I am a metaphor machine. Or maybe I am a metaphor miner, sifting through images that I see and words that I hear, finding sparkling connections to another experience. The client who once learned how to fold her arms and float down class 3 rapids provided a great metaphor for what she needs to do now that her leukemia is back. People are kites -- tethered by relationship, we can go far into the sky, in meaningful directions; without that tether, we are just litter, blowing about with no anchor, no direction. Life often makes us tread water, but depression adds cement shoes. Is there any way this client can remove his shoes, gain more freedom of movement? Just because someone throws you the ball doesn't mean you have to catch it. How is replacing your windows a mirror of your life? What would change if you had new windows? What will you miss about the old glass?

That kind of thing.

But at 6:00 this morning, I looked in my closet and all of the metaphors hanging there are out of season, out of taste, or just plain don't fit. You can hear it even in this skimpy outfit of a paragraph.

I want to write about anticipating chemotherapy, and I need metaphors. Last night we met with the oncologist and got the chemotherapy schedule and run-down. A meeting like this is --- can I use a gladiator again? Not Laura the gladiator and her courage in the face of my constipation; that metaphor fit like the saran wrap on her finger. This time it was like the gladiator, just before walking into the coliseum. "Okay, guy," says his coach. "This is what's going to happen; it's going to hurt. The lion comes out and is going to play with you for a few hours with his teeth. Maybe his claws. We'll pull you out when you can't take it anymore. You'll feel pretty bad for about 5 days, and will have to stay in chains (we give you painkillers for this) until you're ready for another round."

Anticipating the treatment is where I have no words yet. Is it like anticipating the arrival of a long visit with unpleasant company? Company that smokes cigars, craps in your fridge, and maybe insults your character and decor? Weak, weak metaphor. Is it actually facing down the lion? Is it anticipating an exam when you are pretty sure you studied the wrong stuff?

All I know is that it sounds very unpleasant. The plan is pretty aggressive, tough-going. I'll be having two sets of treatment, each for 8 weeks. The first round starts on January 7th. They have to delay because of the damned burn under my arm. But that's okay -- it will allow me to get my practice in some kind of order. The doctor thinks I need to shrink down to about half of my practice or less, which is dismaying to me. I've had to cancel three nicely paying workshops I had been slated to give in January and February -- one in San Francisco, one in Los Angeles, one in New Haven. All are scheduled at the wrong times.

Hair will fall out around noon on January 21st - I kid you not. They can predict that pretty closely. It will be like the ginkgo tree display on that autumn day when its leaves go all at once. Only less cool, I think.

Other side effects to anticipate -- fatigue and nausea, of course. Five different medications are added to help with nausea, but contribute to the fatigue. Anticipate mouth sores, anemia, urinary tract infections, constipation (say it ain't so!), heartburn, exacerbated menopausal symptoms, an acute inability to generate metaphors. Symptoms build to a creepy crescendo with each succeeding round, of course -- the cacophony of a John Cage composition. The second regimen (March and April) causes lots of bone pain, and most people are down with that for 2-5 days each round. Those are all the likelies -- the list of unlikely side effects is the same horror show you hear in any given drug commercial: heart explodes, canine teeth descend and sharpen, that kind of thing.

Lots to do before January 7th. Company's coming! It's a pride of cigar-smoking lions!

Ach. Damned metaphor machine.

the purging of the bras

Not that my puny bras took up a lot of actual space in the top drawer, but they started taking up more psychological space than they were welcome to. So yesterday I got rid of the bras. The bummer of it is that this actual led to increasing the space they occupy in my mind.

I don't have a strong relationship with bras. I remember starting to wear one in 6th grade -- mom ordered one out of the Sears catalog, and then I waited the requisite 6 weeks for its delivery. It had a little bumblebee right where the sternum is. Loved that bumblebee bra. Why did I ever get rid of that, I wonder. I never outgrew it, really, and it would have given me great cleavage during the years I was nursing.

Key events in my relationship with bras include being informed by a 6th grade peer that I should start wearing a bra. Two years later, an 8th grade peer glanced at me while changing after gym and assured me that I didn't really need to wear a bra (not a compliment or a kindness). That's a pretty small window of time, the heyday of my little breasts. I never once wore a bra during college, '73-'77. Saved a pretty penny on bras and razors growing up in those times.

Lots of the books on mastectomies focus on reconstruction and how you can become whole again. I don't know what to do with these books and their message. I can't relate on the one hand, and on the other hand, they make me feel bad, so clearly I am relating somehow. One woman with mastectomies writes about how she decided to do reconstruction by increasing her cup size from B to a C, so as to increase her confidence. And it worked. I dunno; I am off-put by that whole idea. What a tyranny. But this once again could be sour grapes (small fruit as they are) talking. Might I feel differently had I been a confident woman strutting around with C cups as my opening line?

It's complicated. When I finally get my prostheses, I will in fact upgrade from my natural "36 nearly A" to a full out, no holds barred 36A. This way I will move past my days of  trying on the smallest bras in the store (bumblebee bras are in the children's section, so they don't count) and having them pucker a bit on me. Upgrading to the full impact A will increase my confidence and will really turn heads when I enter a room. Unless the turning heads will be because I'm bald.

Nah. It's going to be the A cup prostheses, I'm sure.

repair

Truth, the earring episode gave rise to a couple of disconnected days for Laura and me. "I'm not supposed to be mad at you because my job is to take care of you!" confessed the exasperated spouse. "I'm not supposed to be mad at you because I know the earring is not important!" was my enlightened retort. This is how two counselors fight.

We finally agreed that the earring loss was more about my feeling like things were happening beyond my control. That's obvious when you stand in the lookout tower of the frontal lobe; the part of me that was upset about the earring, though, was pacing in the dungeon of the amygdala. Other exiles there: the part of me that resents Laura's relative freedom not to complete things on my timetable, and the part of me that just generally likes to be right. The various parts of me finally just picking at straw on the dungeon floor did a lot of grumbling among each other, while the frontal lobe guard was fumbling, slowly, for the keys.

Anyway, two nights ago, during one of my many wakeful spells, it occurred to me that if I could get off my righteous position I could end up with a lovelier pair of earrings than the original ones, which were beautiful but unwieldy. This surrender is harder than it sounds. I had that sort of feeling where you could stop being mad, but you don't want to. I'd take a small step away from the anger and then go back for one more bite of righteousness. Yummm. That tastes good.

But today I brought the remaining beautiful, unwieldy earring to the bead artisan in West Hartford Center. She is going to stimulate earring mitosis and come up with two smaller ones. And I will wear them during my months of chemotherapy as tokens of repair, relational and otherwise.

In other repair news, we saw the surgeon again yesterday for another draining. She is still majorly bumming, as they say, about my left side, which looks like Rocky Balboa on the losing end of a bad fight. She tells me it's okay that it's badly bruised from all the needles involved in the draining rounds (we've done 4 so far), but she is just miserable about the burn, which I guess is going to leave a scar, fo' sho'. She suggested the possibility of plastic surgery. This, for under my arm. I would be taking skin from my tush to fix a spot under my armpit. This is like patching a hole in the elbow of a sweater by cutting up the back of the sweater. I'm not doing it.

Gail, Paul Bunyan's younger sister, mentioned in the blog post of December 2, shaved another shivering alpaca to make me a hot compress holder which arrived in yesterday's mail. The fur envelope is covered with soft yellow fur stars, and had a little note saying "no more burns!" Too bad I've lost my license to use hot compresses. Instead, we warmed up the insert Gail had included, then passed the soft, warm envelope from chilly foot to chilly foot, under the sheets in the cold winter night. The silent ritual was sweet recognition of our repair.

winning the booby prize

Having cancer is shuffling my cards wrong-side up, and they're all showing. This is not easy. 

I wore a favorite, very fancy pair of earrings to the doctor's office on Tuesday, as a deliberate effort to invite cheer into this otherwise unpleasant experience. Laura wanted me to take them off while I got drained. I protested, but let her put them in her pocket. We can only find one now, and we both feel awful for being mad at each other about it. She feels terrible about having pressured me to take them off, then losing one. I feel awful about how mad I am about it. And I'm pretty sure this is not just about the earring, of course. Ellen thinks it's high time Laura and I started showing signs of stress over the cancer. If it weren't for a lost earring, then something else would come up.

That may be so. But I do have a terrible, terrible "thing" about losing stuff. Always have. For me, the drive to completion is powerfully strong, and a lost item is the worst kind of incompletion. It creates the annoyance of a song without its last note. It makes my mind itch, excruciatingly so. It is like chewing tin foil when you have metal fillings. It is the ultimate form of keeping the turkey in agonizing suspense. If you don't get that last reference, you haven't really been reading the blog.

From the time they were small, the kids went to Laura when they had lost something. On the sly, she'd help them look. If after a day or so they were unsuccessful in their search, I would hear whispering in the next room, increasingly desperate in its tones. Then around the corner would come a trembling child, who would say, "Uh, mom? I have to tell you something. I lost my calculator." It's not my anger they worry about; it's my anxiety. It's that they will have tripped my search switch. They know, I know, that I will ruminate and hunt until it is found. I may not sleep until I have walked through the past two days with them. Did you go to the bathroom before or after math class? Did you have it then?

Three winters ago, Yani lost a very important key at Porter's, loaned to her by an adult who was hoping to facilitate some junior class fundraising effort. It was nighttime, and it had just snowed about two inches. It was early for snow, and the fall leaves hadn't yet been raked or picked up. After helping me for a reasonable length of time, Yani went home to write her paper. I stayed on to do the unreasonable amount of searching. I SWEPT the snowy, leafy sidewalk, holding a flashlight along with the broom -- from the senior dorm all along the length of Main Street back to our house. I swept Main Street's sidewalk, inch by inch, TWICE before giving up. Those of you who can relate (and I know lots of people cannot, you lucky souls) will be glad to know that someone turned in the key, having found it in the area I swept -- before I swept. Would have been nice to know, but for me, that was a story with a happy ending.

My beloved sister Ellen has the same problem. Last month she lost her phone on an 8-mile run and was so troubled by the loss that she ran the 8 miles again the next morning, looking for the phone the whole way. She couldn't do it the same day because she spent that day looking in the house, and only had time to run the first 3 miles a second time. I am sorry to say that I urged her on. Sure, it had poured that night and the phone was useless, but you gotta know what happened to it. I think this comes straight from our dad, who couldn't let go of lost things (and, unlike Ellen and me, both he and mom lost things with alarming frequency). I am sad that I have inherited this strain of neurosis. I worry that one of the kids will develop it, though, to my amazement, this does not (yet) seem to be the case. I think I worry enough about lost things for the whole family.

Ellen says she thinks Heaven is where you go and you find everything you ever lost. 

But I want to keep talking about my need to complete things until I feel done. Sure, it is this same trait that pulled me through a Ph.D. (honestly, I just had to cross it off my list), keeps me organized in my work, and gets me to accomplish most things as soon as they are added to The List. Laura knows, and only occasionally uses this deliberately, that if she says, "Huh. That bulb is a little dim in that corner," I'll have it changed by the next time she steps into that room. This is not industry, though it looks like it to others, I am told. It is actually my own form of laziness; getting things off my list is the only way I can rest. It's like there's a Type 1 Laziness, which shows up as procrastination. But the Type 2 Laziness, which shows up as getting things done, is, to one who is driven toward completion, every bit as much a form of avoidance as Type 1. It is all to save oneself from the torment of having unfinished things on my list. Chime in, anyone who recognizes this trait in themselves. 

How far out am I on this? I am happy when we finish a jar of mayonnaise. I am kind of forlorn when we have to open a new one. A jar of mayo is visibly unfinished for a long time. I am happier when we take down the Christmas tree than when we put it up. I am happier pulling up the spent tomato plants than putting in the new ones. I try to get thank you letters done the same day a gift arrives. I am happier when a party is over than when it is about to start, that's for sure. I like to pay bills the day they arrive. I love garbage day or dropping things off at Goodwill. Bye bye, and don't come back.

Surely this has something to do with how laser-directed I was about the mastectomies. Once I knew I had cancer, I was all about: how soon can we do this? How soon can I check this task off my list?

Today we learned from the radiology oncologist that I'll be doing chemo for sure. The details are beyond her turf, but that much she could say. She says my receptors put me at a higher risk for recurrence, and that my receptor issue might "qualify" me for an extra few months of chemo. Talk about a booby prize. I am newly anxious, because this is a process that 1) will be profoundly unpleasant, and 2) will be difficult to cross off my list. It will be like those giant mayonnaise jars you see at BJs. It will go on a long time.

And we know that my hair will fall out; it's that kind of chemo. I am really bumming about that. I don't look forward to being visibly ill. This week I've been seeing clients, and no one has noticed that I am breastless. That is sort of a good news/bad news thing, emotionally. Again with the ambivalence: I have made a huge sacrifice, and no one can see it. And yet, once that sacrifice is apparent, I will feel vulnerable and painfully exposed.

I won't be able to find something I've lost, and I will be searching for it the whole time.