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.

my bad; I smudged her painting

Once I began to write heavier, more serious posts, friends who've had cancer began to pipe up. Oh, they thought, the opening act juggler has left the stage. The lights dim, voices lower, and the play has started in earnest. I got several emails from cancer survivor friends who recognize the struggle to accept support from others; they, too, have felt the twin fears of people thinking you're okay (thus neglecting to notice that you need their care and attention) and having people think you're not okay (thus giving so much care and attention that you feel indebted). I feel a little less crazy knowing that this is all part of it. Thank you for echoing back when I whispered into the canyon.

The cancer is demanding a recalibration of so many aspects of my life -- from diet to sleep to exercise to my practice. My practice. I'm worried about it. Before the cancer, it was exactly where I wanted it to be -- I was seeing the perfect number of people, and nearly all my clients fit my idea of who I want to be working with. I was getting a run in every day, had lots of energy, felt so happy with the shape of my life. I know the practice will come back when I need it to, but I also know it will take a serious hit in the next few months.

We went back to the doctor again today for a third draining. She took another cup or so of fluid, and for the moment I am relieved of the awful pressure. But the fluid shows no sign of abating, and I'll probably have to go in every several days for weeks. I am all bruised up from the big extraction needles, and sore for a variety of related reasons. The surgeon was BUMMED about the blister; it was almost funny how disappointed she was about my having burned myself (since surgery removed so many nerve endings I didn't know I was burning myself when applying hot compresses). She said, "Oh, nooooo. Ohhhhh, it will leave a scar. To me as a surgeon, it's like my painting got smudged." She is not concerned about the great discomfort of the fluid; she wants my skin to end up smooth. I would like that, too, but she is really annoyed that I smudged her painting. I guess for surgeons, your artwork is out there parading around on cancer survivors. Dr. A removed your breasts? Let's see. Oh, nice stitches, nice work. Oh, but what is this? A burn scar? Tsk. Dr. A, you said?

At long last we got the report on the hormone receptors today, and I am in the unfortunate minority of cancer patients whose receptors are negative. This means that in all likelihood I will be doing chemo, as I don't qualify for other less brutal options. Right now I am trying over and over to adjust to this idea, like when you keep shifting as you carry an awkward load, certain that there is a position in which it will feel less cumbersome.

when moving, move like the river

I had heard from other mastectomy patients about the euphoria I was likely to feel after the surgery. Nothing wrong with a touch of euphoria after leaning into the canyon of death and then being pulled back to safety. Reminds me of moments in childhood when one of my beloved brothers would grab me from behind as I stood, say, at the edge of a cliff or canyon. He would quickly rock me forward and then pull me back, saying, "Saved your life!" It was never funny or fun, but I, much younger sister, felt powerless to protest and simply let the relief of being safe wash over me.

So, I felt it. The euphoria after surgery. Hoo hoo! Didn't die on the table! Nodes are clear! This isn't pain, this is discomfort! All right!

Now I'm afraid I am going to forget what happened that day, two weeks ago today. I am trying so hard to be resilient and cheery (often that is not hard for me) that I am blocking some memories that I don't want to lose. Last night Laura recounted for me the hours right before and after surgery -- things that were either very blurry for me or never encoded at all. It was like hearing a bedtime story, a lullaby. It was George and the rabbits all over again: this happened, paula, and now you are okay. You fell off a cliff and got caught on a branch that saved you.

I am having fun with my blog, but am unsure of how to use it when I feel sad. When I am quiet, in the rare moments when I am not writing a thank you note, or doing dishes, or seeing clients, or otherwise demonstrating my resilience to myself and whoever might notice -- in the quiet, the cancer is there and so are my breasts. That's the only place my breasts exist: in the spaces I occasionally allow, and in my memory. I am afraid to visit them there.

The picture at the top of this blog was taken at 4:00 a.m., November 30th, maybe an hour before we left for the hospital. Already I was anxiously chipper, determined not to have Yani and Laura worry about me any more than they already were. There was that plan about the turkey joke in the O.R. There was my need to show the doctors and nurses that I had unusual courage and was someone who could follow the zen directive: When still, be as still as the mountain. When moving, move like the river. Something like that. Breasts have to go? Let the knife move like the river.

I don't remember enough of that day. I tried to do a Michael Jackson dance in the hospital johnny and booties. The orderly wheeling my bed around got lost, twice, and we took the longest possible route to the operating room. No worries! I was Miss Cheerbutton. We took a photo of the air pillows they put over you to keep you warm before surgery -- they gave the illusion of immense breasts. Ha ha. I had to do it. I didn't want to be in the spaces between.

It helps me that Ellen took little notes after I came out of recovery. Some of them follow:
   
     One of the first things you said once you were in your private room was, "I'm looking forward to regaining my perspective." That cracked me up. You spoke a little slowly, a little quietly, but with clarity and conviction.
     You seemed to be very curious about what you were going through. At one point you said, "I'm taking it all in."
     You said a couple of different times, " Can you imagine seeing clients like this?"
     Your spirits were good. When a nurse came in and asked how you were, you said clearly, "Tip. Top."

     You asked if there was a marker at the dry erase board, where "Goals" was written. There was. "Could you make Goals into Goats?" We did.
     You also said, "Sorry to be so needy." It was quite silly, if it hadn't been quite so sad. We were eagerly standing by to see what we could do, which was very little. We tried to find you something you wanted to drink. We tried cranberry juice, but the hospital variety was really bad. You rejected the jello, too. Water. Ice was best. "Will I ever salivate again?" You could not hydrate and it occupied a lot of your attention.
     But the main thing that you kept trying to figure out and wanted us to know was that on the one hand you were terribly relieved. I presume you meant that the cancer was removed, the lymph nodes were clear, the operation went well and was over. But you had trouble saying what was on the other hand and you kept trying to express it. Your thoughts were fragmented, and you were working something out in your head: "on the other hand, now we're going to be in...and may not... and it's totally ego in a neurotic sense....personality and temperament...." It ended up being something like: I'm afraid I will fall off the radar because things went so well and because I take care of things so well. People will think I do not need to be taken care of.
     You were doing this kind of intense pondering for much of the time I was there. I also jotted down, and it's a mix of quote and misquote: "It's been an interesting personality test for me to see how excruciating lack of clarity is to me. I project the lack of clarity onto others because I can't bear it myself: she did THAT? she removed her breasts? should she have?"
    
     El's notes remind me that I agonized afterwards. Not about my decision to do the surgery; not exactly that. But I agonized about how little I had agonized, and how that might be perceived. She let the knife move like the river? What was she thinking?

     I worried then and sometimes now that I cope so well that I give the illusion that I don't need much support. But how do I reconcile that with yesterday's very true feelings regarding my need to avoid being indebted to others, that I don't like receiving too much support?

letting my true neurotic freak flag fly

Generally, I get a kick out of having a small handful of folks following this blog, but now I'm worried that people feel obligated to read it. I would hate that. I'm noticing through this whole cancer thing that I live with an exquisitely delicate balance of social obligation, social exchange. I monitor that balance very carefully. When the balance is lost, even briefly, I move quickly to reestablish it by writing thank you notes, returning a favor, immediately answering a kind email, trying to ensure that I am not in anyone's debt. This is impossible when one is ill. It is the most difficult part of the whole thing for me.

And as an introvert, it is really hard for me to authentically right the balance, once I feel indebted. Extroverts have a broader range of authentic responses. I can write to someone. It's not much. It does not feel like enough, for sure.

When we got home from the doctor's office last Tuesday, there was a huge basket of gifts from Laura's colleagues -- socks and CDs and paintings and fresh applesauce and books and so much. True confession? I burst into tears not because I felt so grateful, but because I felt so burdened by my need to thank each person, and inability to adequately do so -- and I was immensely tired. It was absolutely the wrong response to have. It meant I couldn't enjoy the beautiful basket of gifts in the way I was supposed to. The more wonderful or thoughtful the gift, the more indebted I felt, and it was really uncomfortable. I sobbed to Laura, totally letting my neurotic freak flag fly: "I try to live my life in a way such that I am not obligated to people! I can't handle all this obligation!" I am really embarrassed to admit that.

I don't think this is a particularly healthy aspect of my personality, but it's very real. It's not just about avoiding indebtedness -- it has something to do with my fear of being a burden on other people. Staying too long where I might not be welcome, for example, would be misery for me.

Here's the really neurotic kicker: I am not in enough pain to feel like I deserve the loving, helpful things I am receiving. The meals, the soups, the unbelievably generous Whole Foods card that 30 of Laura's colleagues went in on. Were I to lose my hair to chemo, say, I wouldn't mind people feeling sorry for me. I would or will feel sorry for me, too. But I don't know what to do with simply having had a double mastectomy and being tired. I feel sad about my breasts, and I'm anxious about the cancer, but I don't feel sorry for myself. I just did what I had to do. It doesn't feel like enough to merit all the kindness coming my way, and my debt to others chafes me, badly.

Not an entertaining post tonight; sorry about that, for anyone who has made it to the end of this heavy piece. I'm really talking to myself, and, like tickling oneself, something shorts out and the result isn't funny. Much obliged.

more on my Laura

Oh, that's so unfair. She can't retaliate. Not to the posting -- to its title. Since T'ai was a toddler, we've had this thing going, where if you catch someone saying "more on" in any context at all, you can bust them. Your response is feigned offense, "Hey, what'd you call me?" or something like that. It's terribly inappropriate to highlight "moron," particularly to one's children, and I realize that. If it helps at all, I feel sheepish about it. But I taught it to them anyway. The kids could hear it by the age of 4. "More on this story, after the break," Dan Rather would say, and one of the kids would pull a thumb out of the mouth to say, "Heyyyyy, what he caw me?" The kids still walk grammatically allll the way around an idea in order to avoid saying those two words. By now it's mostly an inside joke, something that makes you catch each other's eye when someone outside the family asks, say, for the gravy and announces that they're just going to "put a little bit more on."

This is the first year Laura volunteered, by virtue of my convalescence, to put up the holiday lights in the windows. We made it through the first year of living on quaint yet classy Main Street, Farmington without "candles" in the windows, but several neighbors dropped pointed hints about it: "Ah," they'd say, "doesn't Main Street look lovely with candles in ALL the windows of ALL the houses?" So, we got the hint, and bought a dozen electrical candles that are supposed to go on for 8 hours and then off again for 16. That might in fact be what they do, but time is relative, and nowhere is that more apparent than in the factory where these candles are made. Our house as often as not has only a few random candles on in the windows during the holiday season, some coming on at dawn, some going off at noon. No one else on Main Street has this problem. For me the lights have been an annual annoyance; each year I have taped them down, plugged them in (extension cords needed for over half of them -- it's an old house with odd outlet placement), and then I spend the next several days unplugging them and replugging them all at dusk in a futile attempt to get them all on the same cycle. It has never worked, but I wanted Laura to have her Main Street candles.

This year she announced that she would take care of the window candles -- ooookay, I thought, feeling like she (my husband, Laura; see previous post so named) had just announced that "this time I'm going to hem your pants, lovie!" She broke two lightbulbs in the process. She needed 5 extension cords, and wanted to move away from Main Street, Farmington right then and there. Laura's solution: "Let's have one candle in the center window from now on. I think it will look so nice and simple that way." As I write this, she is taking them all down but one, and muttering, "what a fiasco."

For future reference: some male and female husbands can and do hem pants, I know. That's not how we work things in our marriage. Laura generally does gross motor tasks, and I do fine motor. She transplants the hosta. I weed it. She paints large areas of wall; I do the trim. She stacks the wood; I gather kindling. She drags in the tree; I decorate it. She feeds the dog; I pull off his ticks. This division of labor is generally so clear that all Laura has to do is shout (usually in frustration) "Fine motor!" and I come running.

We took a 3-mile walk today, which I had promised myself I'd do. I'm glad I did, but now I am really tired. The fluid on my left side is back to where it was 3 days ago, and this is discouraging. I'm drinking lots of tea and water, and it seems to be going straight into that pouch of fluid. More on this later.

my brother swallowed his gum

When I suggested that I would post a photo at some point of the full frontal monty, one of my beloved brothers just about swallowed his gum and begged me to reconsider. I won't say which one, but it's the one who looks put together when he is in his jeans or is riding around on his lawn mower. He can't help it -- he just can't do mussed or casual. I mean no offense to him, or to my other beloved brother, for whom looking "put together" is, well, a different thing, a funny thing. Like I try not to laugh when I see the other brother in a suit. Hey, beloved other brother, I'll say. Ha ha, you're in a SUIT! Where did you get that? 

I can say these things because I can't dress up either. Now and then I will try, kind of like testing out petting a cat after a lifetime of allergies, just in case it works this time. I still feel bad about the lovely invitation from a couple of friends, maybe two years ago, to a gala evening (this should have been a warning, but we had the allergy-to-gala-evenings experiment going, and hoped we might be able to pull it off) at the Wadsworth Atheneum. Laura and I dressed up, I think; I don't entirely trust my judgment on that, but I'm pretty sure we were dressed up the way you're supposed to for a gala event. Yani put a little bit of makeup on me, kind of like you help your friend zip up their Halloween costume. So we arrive at the Atheneum, and someone wants to take our coats. Oh! Ha ha! Sure! You may "take our coats!" we say, laughing, assuming we are all playing dress up. The entire evening I felt out of place. We were all dressed up, but I felt like the one with footie pajamas underneath my long black skirt.

Dressing me up has never worked. It occurs to me that adding a photo of myself as a child in my native dress and habitat may convince those who think this is an exaggeration. On the right I will put a picture of me dressed up. In which photo do I look more at peace?

 Even in my therapy practice, I notice that I am gradually working
my way toward jeans and a jacket (a nod, just barely, to convention)
as my customary garb. When I try to look more "professional," I
dash back upstairs as soon as I can to get back to what feel like my own clothes. I figure very soon, with just a few more gray hairs, I will let myself be me. Oh, paula. Yes, She's that nice therapist with
                                     no breasts who wears jeans.

If I do post a picture of my mastectomy scars, beloved brothers, sister, and other readers, it will be because there is nothing to see. Without breasts, it's not sensational, or revealing, or even particularly intimate. That is one of the interesting and sad parts about all this, and I think a picture on this little blog would demonstrate that. Look, ma, nothing to see.

(Brief medical update in closing: When the VNA nurse came yesterday and swallowed her gum upon seeing the blister and fluid accumulation, we were sent straightaway to the doctor. They pulled out another two cups of fluid from the left side. The spectacular blister is still there, and our instructions are to guard it like a little egg in an incubator of gauze. The surgeon had to tell Laura repeatedly that, no, no matter how gratifying if would be to take a pin to the blister, she is not allowed. Though for some reason I am producing all this fluid with no signs of stopping any time soon, it was a great relief to flatten out again and start anew. We'll repeat the procedure on Tuesday.)

WTF, Houston?

Remember the heat compresses that were supposed to draw out the fluid in my left breast area? It drew them out, all right, and here is a photo of the resulting blister, next to an adult male bear for scale. The blister is a whopper, and Laura and I did an impromptu freak out dance when I undressed last night and saw this staring back. I imagine when I send this to Evelyn, our RN lifeline at the doctor's office, they'll want to get out more fluid today. I will want to get it out.

This drive to get out foreign bodies has to be an evolutionary thing -- my favorite theory to try on for any given phenomenon. That person who pushes in line? Okay, maybe her ancestors got to the rabbit carcass (see the need for one in entry entitled "kind of a bust") first, but the stress did them in later, and they were discussed judgmentally around that evening's fire. Maybe even ostracized and left behind on a successful hunt. Upshot? Pushing in line is bad for the gene pool.

But I am sure that needing to get out foreign objects is adaptive, overall. This brings to mind the time T'ai had a tick on his penis. He was about 3, young enough to still need a hoist onto the toilet at the Route 84 rest stop we were visiting. I spotted the tick. "Oh," I said, as calmly as possible. "You have a tick on your penis." T'ai went wide-eyed and said, in one of those sing-song and panicky tones, "get it off, mom!" So, that's pretty young: 3. To be wired to go wide-eyed and say "get it off!" That's evolution doing its thing.

I think the cave dwellers who looked down while doing their business at a rest stop, saw a tick on their privates and thought, "huh. look at that," then kept on peeing or whatever, have not done so well. Sure, a few of their descendants have made it through time, but they have something sticking out of their nose at a party, and the evolutionary writing is on the wall.

I had some worries that people would think I had done something pretty drastic in getting the double mastectomy. I don't have that worry now. I want to be as aggressive as possible with this cancer, and I think I scored convincing points with the first step of the surgery. Today's small job is to get this fluid out, but it's all connected. It's an evolutionary thang. Yeah, yeah, I've already reproduced and my offspring are successfully wired to get ticks off asap, but still. I'm a product of the ancestors who did a brief freak out dance, then plucked out the foreign object. For my part, the boobs had to go.

stir crazy

Not me. I don't generally get stir crazy. I could hunker down like this for a long time, provided I could start running again. I like being cocooned in here, with the pretty blanket of snow outside. I do not miss the hubbub, of which I am barely a part anyway. I miss having more energy, but it's not like there's anything I want to do with it.

No, I went a little stir crazy with my schmancy new blender, and yesterday threw out a gallon of what was probably very yummy-tasting scallion potato wallpaper paste. It glopped its way down the drain ever so slowly, and is surely now creating some great clog in the Farmington water treatment system.

I also poured down a half gallon of a smoothie fail, a similar casualty to the blender that can handle everything, but maybe shouldn't. I had thrown in everything, all right, each food tasting lovely by itself, but creating the kind of unpleasant concoction that I might make if my mission were spiritual suffering and sensual deprivation. It's awful to throw together a smoothie and then find that I've destroyed perfectly palatable food. I feel guilty about it, and I tried the spiritual suffering route for about a pint. Then I became enlightened, which was really cool, and I threw it out.

Actually, not true. No enlightenment rush. I still feel really bad about wasting food. My parents would have eaten the paste and the glop until they were both gone. Pop maybe would have put on some hot sauce, but mom would have plowed straight through spoonful by sticky spoonful. Their example is a hard lesson to unlearn. Oh, sure, they paid a price for that now and then -- mom's food poisoning when she couldn't bear to throw out the rotten cherries, that kind of thing. But all in all, their frugality and inability to "waste" served them -- and the many people they fed around that big table -- very well. Mom's response when surprise guests arrived, as they did more meals than not as we grew up, was always that "we can just add more water to the soup."


Sorry, mom. Sorry, pop. Good and ironic news is that my appetite is better today. Good enough so that I have the judgment to throw away bad food.

Ellen came for a couple of hours today and helped me create an exercise regimen, which I now feel ready for. It's pretty humble. One of the exercises, for example, is to reach up. One is to reach to the side. Twice.

My fluid accumulation is really bad again, and I have another appointment to get deflated once more next Tuesday. I have to keep heat on the pouch of fluid, says the nurse. So I removed an insert from some warming booties the kids once got Laura (who used to get cold all the time and now has the opposite problem) and now pop it in the microwave, then slip it into my "bra." It is not comforting, and I hope it is doing something useful other than making me wait by the microwave every 15 minutes. Sometimes while I am waiting, I reach up. So maybe the heated compresses are actually a good thing.

We also now have appointments with the radiology oncologist as well as the oncologist we had hoped to be able to see. Since this person is in such demand, she sees people in order of their need, and refers many in lesser need to others in her practice. So when we got her, we were kind of like, "Yay!" and then "Hmmmmm."

kind of a bust

You suckas lucked out. I've just given up trying to upload a great, gross video clip we made last night showing the oscillation of the swelling under my left arm. But Mac's version of blogspot.com doesn't let me upload video. I gave about a minute's thought to putting it on YouTube, which is what Mac users have to do, but the world has enough creepy stuff to watch on YouTube without adding my stitches and swelling. This blog, though, doesn't have nearly enough creepy stuff, so stay tuned for a photo of the FULL UPPER MONTY, coming soon to a computer screen near you.

I am cold, kind of relentlessly cold. Yesterday a physician friend of Lee's explained in very helpful terms why my body is not cooperating in terms of appetite, energy, and basic functions beyond healing. She explained that the anesthesia takes many days to work its way out of you, and in the meantime your body deploys all available energetic/cellular personnel to countless tasks related to healing. There simply aren't enough other cellular staffers around to give you a sense of energy. I found that helpful. But I'm still tired, not very interested in food, and cold despite an under-armor winter running hat, rabbit skin earmuffs (sorry! I'm desperate!), a scarf, and three layers. I feel like it's midwinter in my body, and the metabolic oil company forgot to make its delivery. Below is an unflattering earmuff shot by the paparazzi with the iPhone.

Truly, I am most bummed about the fatigue. I had thought of post-surgery fatigue only in the most abstract terms, which means "something that will not actually happen to me." I am even too fatigued to read, which had been my whole indulgent healing plan from the beginning. There is a big bedside pile of delicious books, but they look as unappetizing as most of the food in the fridge.

Today was the day we'd been hoping would provide Answers. It was sort of a bust, one of a long string of sorry breast jokes I could toss in on demand. They drained over 250 cc of fluid from my left side. I wish I had had a camera to get Laura's expression, which was kind of like that animated emoticon you sometimes see with the eyes that rotate in syncopated time. This fluid removal was as uncomfortable as the surgery, seriously -- probably because it happens without those nifty heavy narcotics. There is still a lot more fluid in there, enough to feel really sloshy, but they left it, hoping it would get absorbed as time goes by. If not, we go back for more siphoning.

What we did learn from the pathology report follows next. It is very boring, but here goes:
* The tumor had two kinds of cancer cells -- invasive ductal carcinoma and some focal lobular carcinoma. Those are different things. 
* The left breast mass was not a tumor, but had some duct hyperplasia, which means that cells there were dividing faster than normal, so maybe it was precancerous. Maybe not. I don't think we'll ever know.
* The nuclear grade was ll-lll, on a scale of l-lll. This is more serious than the original grading, which said l-ll. That's about the aggressiveness of the tumor.
* For some reason, the receptor report is still not in. That's a really important piece, and they don't know what the delay is. It can determine the type of treatment, as can all these other pieces.
* We probably won't see an oncologist for another two weeks! That was the most disappointing of all. More waiting. I have to see both a radiation oncologist and a plain old oncologist (I believe that is how they prefer to be known).
* Options are likely to be among the following: chemo (4 months), ovariectomies (which I REALLY don't want), or long-term medicine (also don't want -- have heard nightmarish things about side effects). It is an odd thing to be lobbying for chemo. Could still be nothing at all. No way to tell yet.

It was really sad to read the pathology report. It describes the dimensions of what they took, and made the loss very real. I read the whole thing aloud to Laura as we drove along, and things like this made me choke with sadness: "Received fresh for intraoperative orientation, left breast, suture marks axillary tail, consisting of a total mastectomy that measures 17x15x4 cm in greatest dimension.  The nipple measures 2x2x0.5 cm. The surface of the skin is smooth." That was my left breast.

We set out from the surgeon's, me crying and reading aloud, Laura weaving through Hartford trying to rub my back to comfort me. We were hoping to get me fitted for a pair of breasts, thinking this might be a cheery thing to do. First stop was Hartford Hospital, but insurance doesn't cover Hartford Hospital's cancer center for prostheses for some weird reason, and foobs cost a LOT. Even breasts that are size 36A, which seems kind of unfair. Surely I ought to get some kind of discount for a small pair of breasts. Isn't my ecological footprint just a little bit less than someone who lumbers out with a pair of double Ds?

Anyway, we left a full parking meter in Hartford and tried a store in West Hartford, which somehow insurance does cover. But the kind woman at the store said you can't be fitted until about 6 weeks after surgery, which would have been nice to know from the surgeon who sent us off with a prescription for two prosthetic breasts.

So that was disappointing. But of course. Right. I am very swollen. I should have known. Our bummin' moods required a stop at Starbucks, which helped, but we still left the West Hartford parking meter full as we drove home.

I wish I had more news. My job is to recover enough to see an oncologist or two. I'm working on it -- I'm sure my energy will return soon. Laura's has, following her sushi (barfarooni!) dinner -- she is near the sink playing "drums" on her bottom -- she's got a good riff going now. Laura has untapped talent as a percussionist that shows up at the oddest times. Get her going with a pair chopsticks and some pots and pans and she is my Ginger Baker, size 36C.

my husband, Laura

I have a husband, which will surprise some of you who know her. Sure, she has no penis, but I don't have breasts, so let's not quibble about all that.

Laura was home taking care of me last week -- MUCH more attentively than the average husband would do. But it's funny what she noticed. In an earlier post I mentioned that she was alarmed at how much flotsam and jetsam is carried by everyday household tides; the constant picking up that I do that goes unnoticed. This is not a complaint; I like to putter, and I automatically keep things picked up. The dishes are done, the compost goes out, the counter gets wiped, the mail gets sorted, the dog gets let in, let out, let in, let out, let in, let out, dots on the kitchen floor get picked up with a wet finger, flue gets shut, bills are paid. Yesterday she said, as she sorted the mail, which is generally distilled down to nothing by the time she gets home: "It's interesting, p. For 5 or 6 years, they stopped sending catalogs through the mail. And that must not have worked, marketing-wise. They must have found that people need to see the items. And so this year they are starting to send catalogs again."

Okay, this cluelessness doesn't make her a husband, not that being one is a bad thing by any means. I'm all for husbands, if that's what you have. Love whom you love, and love that person well. But there's more to this claim about Laura. I am thinking of the time I was weeping for the loss of a real husband, right around the time of my divorce back in the early 1990s. I was sobbing with remorse and anxiety. Laura tried to comfort me. "Waaah," I wailed. "When (sniff sob) when there was a scary sound in the middle of the night, he would get up to investigate it." "Oh!" Laura assured me. "I can do that. I would do that, absolutely!" she vowed. "Really?" I sniffed into my tissue, hoping this was true. "You would?" "Oh! Sure. Of course! I don't get afraid of sounds at night."

Then came the night, shortly thereafter, when I woke for a moment and simply said, with little real anxiety: "What was that?" I lay there for a moment, became convinced that it was nothing, and began to drift back to sleep. I hear Laura throw back the covers, STOMP across the bedroom floor and stomp into the bathroom. It crosses my mind that she might be annoyed that I woke her for nothing. I hear her pee, lots of pee. All that goes through my mind is that she must really have had to pee; now I don't feel so bad about waking her up. She STOMPS back to bed, climbs in, and whispers very softly into my ear, "It's okay. I just peed as loudly and as hard as I could so that if there is an intruder, he'll think there's a big man up here and he'll leave the house."

She has proven to be good for her word about the intruder thing. Sort of. She took on a noise not long ago, armed with her 12" round pillow, her weapon of choice. She will check things out if I am unsure. She will pee loudly, and so far it has worked every time.

My husband, Laura. I will write more about her sometime soon, as this is proving to be as therapeutic as writing about the cancer, the swelling (I am about up to a B cup, but it's 3 inches left of where a cup might be), the worsening fatigue. The only difference is that my female husband is probably going to be offended by my teasing. Everyone reading this: if she asks you, please make sure she knows she is the BEST husband evah.

(Unrelated post script/newsflash: Can't sleep, again. Turns out those two nights of good sleep were just exhaustion and lingering effects of the anesthesia. I am back to my usual crummy menopausal sleep. What a rip.)

code bleccch

Oh, dear. No appetite for the last three days. Doesn't it seem like, once the poop parade marched through, the body would want to restock its shelves? Not so. And my energy is flagging, accordingly, to the extent that I don't even want to repair the damage caused by that collision of metaphors.

The small tragedy is that we have enough food in the house to feed everyone who has brought some. Here is a shot of our fridge, which doesn't even show the bottom two shelves, barely closeable, that are filled with fresh vegetables and fruit. Overage of the latter is on the kitchen table, to our right. This is the pile after I cut up a big pile of apples to sauce them (see partial pile, below)-- a frantic attempt to put my little sandbag in front of the flood. 

We are two people. Only one of us has an appetite, and that is mostly for salmon, chicken, beef, anything that once had a face. If one law of the Universe is that yin must coexist with yang (say yahng, people; not YAYNG. I beg of you. If one thing comes of this cancer, let it be that my blog readers say YAHNG), It put Laura and me in the same household to underscore Its point. My desert island survival foods would be nuts and berries, maybe an avocado tree. Give me a pen, paper, and a Kindle (to be stranded in the 21st century is my plan), and I'll be happy. For Laura, give her a knife and a few slow-moving animals who mate often enough to keep her supplied with meat. She might want an avocado tree, too, and maybe her iPhone, but that's it.

But now even nuts, berries, or this fresh hot applesauce have no appeal, and as a partial result I have little energy. I'm not sure how much of the energy problem is directly from the surgery, from the emotional loss of my breasts, from the lack of exercise, from lack of food. I don't know how much of it might be that I don't know if I'm done with this cancer, or if it's done with me.

To end on a positive note, my sleep has been better than before the mastectomies. And not just on the nights when I was knocked out by dilaudid (curse you, dilaudid! my poop nemesis, now defeated). I have been off meds for two nights, and I sleep. Mind you, for two years straight I have complained about rotten sleep. Now if some miserable 50-some-year-old woman asks me what I did to remedy the sleep problems of menopause, I will explain that, well, I took some pretty drastic measures. How far are you willing to go to get some good sleep, I will ask her.

if i looks like a breast and feels like a breast, it must be

...underarm swelling. Since the doctor yanked out the kinked drainage tube on Thursday, fluid has been quietly, doggedly accumulating under my arm. "Can't have it both ways," says this excellent surgeon with hands of gold and a bedside manner of -- not to put too fine a point on it -- a boob. This is the person who left us in a puddle of splattered fluid and walked out, me naked and speckled in front of the opened door, Laura still trying to catch what she could of the reddish fountain. "We'll just drain you on Tuesday." And now there is enough gathered at the gate to be about the size of my original left breast, only moved 6 inches to the left. I cup it in my hand now and then for a virtual experience of what is gone.

Now that it's become clear that all efforts need to be toward the cause of pooping, I have stopped the prescribed meds. I had taken them sparingly from the beginning, much less than prescribed, and even so, I feel a pronounced drop in my resilience. Very tired today. I am supposedly napping in Yani's bed (at 9:30 a.m.) while Laura does errands and our sheets are in the washing machine.

I'm sure you will want an update on output. Laura came into the bathroom last night while I sat on the toilet (much of the evening) waiting for Godot. She had her forefinger covered in saran wrap. "I can do this, p," she assured me gallantly, with only the faintest drain of color from her face. She was like the gladiator who has stepped into the coliseum ready to die for his queen. "Your majesty," the brave soul bows, "I die in service of the throne."

Well, you'd have to get up pret-ty early in the morning to get a saran-wrapped-covered finger into my crowded behind. I don't care how good the cause is, how worthy the ailing queen. That's not happening. I dismissed Laura with a weary wave, sparing my noble servant for another day, and went back to my private vigil.

No full Main Street parade just yet, let's say, though they have let a fire truck or two go through. Much obliged for the support.

my kingdom for a poop

Five days and no poop. Actually, I am collecting it, saving it for posterity, apparently -- but no poop that is forthcoming. This has been by far the worst symptom of my "breast cancer" -- more painful and annoying than the stitches, the drains, the swelling which continues to accumulate (see yesterday's post for why). As someone by whose intestines one could set a clock under normal circumstances, I am taken aback and offended by this systemic failure. It's like having a Subaru break down. When does that happen? Never. A Volkswagon, sure -- especially one belonging to my folks -- but a Subaru? Come on, I should be able to poop.

In the spirit of "the law of attraction," I am planning a large parade for when I finally do poop. We will march down Main Street. Everyone is invited. I need everyone to be envisioning this parade.

As I emailed to family, we have been waiting for the full pathology report, though we know the great news about clear nodes, of course. For the past 3 days we've been told the report would come in the following day. Now it is Friday and we know there will be nothing until Monday. What we are waiting to hear about is whether or not I will need chemotherapy, whether my ER/PR receptors are positive (can determine type of intervention), and what that unidentified floating object was in the left breast. I am feeling more and more like we might have done all we can and should do about the cancer; that they got it. But even if there is nothing left to do but go on and live well and happily, it would be nice to know that those are the instructions. If there are additional instructions, that would be good to know, too.

For now, though everyone has been sending light my way, which I have really appreciated, I would like to put in a specific request for momentum. A fully functioning hydraulic system, please. I can't eat much more fiber, and when the time comes, stand back. She's a-gonna blow.

making up for lost buzzes

I've never been drunk. Truth. When I tell adolescents that, most of them say, "wait. what?" Just like that. It's a great conversation stopper. Eh, I could make it a long story about not particularly enjoying feeling nauseated, hot (as in red-faced, not as in the fun kind of hot), and tired. I could add that alcohol makes me wheeze -- seems not worth the effort to have a drink in one hand and an inhaler in the other. Not to mention the havoc it wreaks on my sleep to have a glass of wine. What a hassle.

But when I tell adults that I haven't been drunk, almost universally the response is that they want to be the person who gets me drunk, and they are forlorn that I'm really not interested. They think I am missing something essential in life -- that opportunity to stagger, to want to barf, and to be loopy.

So today I write to let it be known that I am making up for lost buzz time. I've been conservative with the medications I've been prescribed, but am taking them as needed. And I get to stagger, to occasionally want to barf, and to be loopy. I also get to sleep.

Today's fun-fact-to-know-and-tell about breast surgery is that you get (okay, I get) phantom nipple sensations. Like, often. You know how when you go out in the cold and you feel your nipples move to a salute? I'm getting that sensation, but have no nipples. I don't mind it, and in fact am kind of glad to have that remnant of days gone by.

A closing anecdote about the adventure we had at the doctor's office today when we went in to deal with a blocked drain from the left erst-boobal area. Think Monty Python, that scene with the hapless knight who loses a limb at a time, and blood is spewing from him like a fountain. Pfffffff, pfffffff, spewing this direction, that direction, pffffff. Picture Laura trying to catch it all in her hands. The surgeon is saying, "Don't worry! It's just serosanguinous fluid." And it's spewing everywhere. The surgeon seemed perfectly content to have it spraying onto jeans and walls. Good news is that I feel a lot less pressure in that area now. Bad news is that Laura was seriously grossed out and it's going to take awhile to make that up to her.

laura takes on the blender

It's great to be home. I am in a cocoon of love. Near this post you can see one of the beautiful "papel picado" banners that Molly made -- it hangs over the bed and says "health" in Chinese. The other banner, which I face from the bed, says "paula" in the same bright and cheery colors.

Next is a picture of a teddy bear that Gail Moorhouse made from one of her own alpacas. Gail is Paul Bunyan's younger and more vigorous sister. She and Tim live up, way, way up in the Maine woods, and do everything by hand, including building a nice ladder to the moon. They make the rest of us look like slugs.

Laura is determined to learn how to make the smoothies I am drinking these days. Here are the ingredients I scrawled for her before she headed downstairs: bee pollen, beets, flax seeds, sesame seeds, green tea powder, vitamin C powder, protein powder, celery, carrots, parsley, magnesium/zinc/calcium liquid, distilled water. The rest she can play with. She added an apple and a banana. It was a delicious success. Beyond the nutrients in the smoothie, I am hoping it will Do the Trick to get my hydraulic system back up and running. That's code for "I haven't pooped since surgery, and am not happy about it." In fact, though I am peeing plentifully, finding the exact muscles that open the floodgates has been a challenge post-surgery -- it's a bit like that trick where you try to move your foot clockwise while drawing the number 6. Your brain is like, what exactly are you asking of me?

Kevie was stern about my stern smoothies when he was here for Thanksgiving. He lectured me about the importance of eating stuff that tastes good. Kev's an interesting blend of ascetic and hedonist. He's lived on bugs (a story that is beyond the scope of this blog, but will remain in family lore), requires very little to be happy, but believes that smoothies should taste good. I like that idea, but am someone who embraces a particular mindset, memorizes its melody, and then can add jazz. First we start with beets and parsley, then maybe we add the banana and apple.

Laura is upset with me that I'm not taking more pain medication. I'm relieved that I don't need it that much (right now the itching is worse than the pain). They send you off with plenty of prescriptions, like door prizes. It's like, "And don't come back until you wake up for your follow-up appointment next week."

I can sure see how someone who is vulnerable could get hooked on pain meds. At the very least it's interesting to see how long you can keep your eyes open when they are trying to close. I found that pain medication meant that I'd be sitting there and then I'd notice, "Oh, my mouth has fallen open again." So for someone who wants to check out for awhile, pain meds must be a pretty effective way to get outside the loop where the rest of us are.

I really want to be Here. My main worry is that this week, with Laura and me mostly holed up in the house drinking beet smoothies, will go by too fast.

Visiting nurse should be here soon. Have tons of questions for her, and hope she is Nice. I only want good energy under this good roof.

they actually send you home with fun bags

I am writing this from Hartford Hospital, and am hoping to get discharged in a couple of hours. Still a little loopy from the pain medication, but overall in good shape (here those who knew my mom should hear that expression in the cadence she'd say it in). Ellen, Laura, Ting, and Yani were here for most of yesterday, and we laughed and talked with equal depth.

The surgery went well, lymph nodes are clear, and all of that bodes very well. We need to wait a few days for the pathology report on the left breast and the margins of the right breast tumor, but I am less worried by far than pre-surgery. I now know the texture of this particular pain, anyway, and it is okay. It gives me confidence for whatever might be next.

I have peeked at my chest, which is covered by thick wrappings and a wide ace bandage. The scars are not so bad -- I may upload a picture if I get up the nerve later. Interesting to see that my chest is not flat -- it is concave. I'm not sure how that works -- I'll have to look more closely later. I'll also be checking out the chests of 7-year-old girls for a bit -- not to sound creepy -- just curious about this concave thing. I don't remember that look.

Hospital sleep sucked, of course, even on dilaudid, benadryl, and percoset. So I am still really tired. There are too many machines buzzing, too many IV drips making me have to make my blurry way to the toilet every couple of hours. Lots of people who throw on the lights at 3:00 a.m. and are interested in my temperature, my pee volume, my this, my that. For those who haven't gone through this surgery, by the way, one's pee is green for awhile, as the blue dye used to find the sentinel node works its way through the system. "Blue and yellow make green," I commented wisely to the nurse the first time I peed successfully. Looped, I tell you.

Had one nurse who made lots of malapropisms in her speech, which was fun, especially as they came through the post-op fog. Instead of "sentinel node," for example, the first lymph node in which the cancer might have traveled, she spoke repeatedly of my "centennial node," and it was all I could do to stop myself from breaking into Stars and Stripes Forever.

Want to record here for posterity that I was successful in getting in Gigi's turkey joke right before they gave me the anesthesia in the operating room. I said, "Please tell me before you knock me out." "We will, sweetie. First, I'm going to X and then I'm going to Y, and then I'm going to knock you out." So after X and Y, I said, "Wait a second!" All 5 heads in the operating room turned toward me. Then I said, "How do you keep a turkey in suspense?" They still stared, nonplussed. Then, the moment of sweet victory: "I'll tell you after I wake up." I heard laughter, and then was out.

Laura has had instruction in emptying the drain cups, an act of love that ought to get her a few millennia in heaven. Bleccch. Blood and fat, mostly. Blood is to be expected, dripping out of one, I suppose, but it is extra gross to have liquid fat dripping out of one's sides. Doesn't seem to bother Laura, though I have noticed that she leaves the room for a long moment after emptying the cups.

One last thing -- before they discharge you from Hartford Hospital, we've been told that someone delivers a "Fun Bag" from the Cancer Center -- apparently filled with cancer games (um) and other fun things. Doesn't that seem a little weird? I'm not quite sure how to respond. Didn't they just remove my fun bags? What's with that?

only for now

taken this morning at 4:00. we are off, and so are they. back soon.

tell me about the rabbits, george

Today I am like Lenny in Of Mice and Men. "Tell me about the rabbits, George," he would say, and George would soothe him with the ritual story of their pastoral future, serene, and comfortably living off the fat of de land. Several times in the past couple of days I have had to ask Laura to tell me the story of the rabbits. "Tell me again what Jim [friend and breast doc who has given us wonderful support] told you." And she will get out the piece of paper where I had written what I needed Jim to say. She reads, and adds Jim's clarity and reassurances to the text: "If you don't remove the cancer, it will spread. Surgery is necessary. Then Jim said, p, 'If you don't have surgery, you will die of this cancer.'" Then she goes back to my requested script: "The choice paula is making is not unreasonable or irrational." Then she says, "Jim says you are making a very good, very reasonable decision." Then I am okay for a few hours, until I need to hear the story again.
There is a lot of Lenny in me right now. A little slow, dropping cognitive stitches now and then. Mixing up words and plowing through a sentence anyway. Lots of going into a room and forgetting why. I don't know if Lenny did that, but I would imagine so.
It was a great weekend, though. 17 Chus, as we had been eagerly awaiting. It is effortless for me to be with the family, and this alone was reason to be grateful.

Laura is in serious nesting mode. Haven't seen her this lost in puttering around in a long time. She aired out the blankets, vacuumed, dusted, was on the move for hours. I think we are not far apart from the birds who do these same behaviors -- before the intense caregiving begins, mom bird (in most cases, no?) works on the nest like she's had several cups of avian coffee. Laura was doing this, without the coffee.

Phuc and Sue dropped by yesterday in the middle of things. Phuc, a tattoo artist in Portland, Maine, has offered to give me new nipples someday. How's that for being a friend?

I imagine I won't write until after the surgery now. To anyone who reads this, on the off chance that someday I will make this blog findable, hold me in the Light! Be back soon, sore, flat, and grateful still.

all about the light

I am grateful for so much on this day of giving thanks -- it is quite overwhelming. I love Thanksgiving -- of all the holidays, it is my favorite. It invites us to do what I think we are here to do. Which reminds me of several years ago when I spent about 3 months painstakingly drawing up a personal mission statement. I talked to lots of people during that time about how they find meaning (some of you may remember my asking you), what their mission is, etc. etc. I gradually birthed an 8.5 pound mission statement which is still taped on my desk, and which still works to guide me now and then. But right toward the end of that period of time, I went to a lecture by Jonathan Kozol, and he was going on and on in his brilliant fashion, I half-listening, and then he said, "I mean, after all, what are we here for except to look for light and praise the light when we see it?" And I thought, jeez, THERE's a mission statement for you. I could have saved a lot of time.

I think I am coping quite well, overall. And then something teeny tiny happens and I can see that I am a little quirky. Yesterday, the bright red, schmancy REI running jacket that Laura and I had ordered for me -- and paid an extra $25 to have it get here in time for me to run in it 5 times before surgery -- came. Oh, boy! Our extravagant way of reminding me of health, freedom, movement, and (bright red) celebration was here and it was ----- the wrong size. At this, I melted for a few minutes, and my voice was of a disappointed 7-year-old who had to wear her brother's glasses instead of those nice baby blue cat-eyed ones like Emily Donovan had (true and traumatizing reference there). "I wanted a MEDIUM," I whined. Waaaah. I felt ridiculous, but there it was. My stress, bubbling up and over, just for a bit.

So I know that, for all the great compartmentalizing I am doing, cancer is on my mind at all times. A few nights ago I had what I think of as a little poke from Freud. I dreamed that I had bought a bus ticket (hmm, BUST ticket?), and that the bus company imposed a flat rate for tipping the driver. I was annoyed by this, and chastised them for having a policy that forced a flat rate for tipping. One of the managers scoffed rudely and snapped, "You think that's flat? It's going to get even flatter than that!"Somewhere in there, I guess my unconscious mind is trying to coming to terms with getting even flatter.

I have learned a bit about the distribution of emotional labor in the face of a life-threatening illness. As I wrote earlier, some people are angry about my cancer. I still am not aware of feeling angry at all about it. Stunned, sure, sad. Yeah. But not angry. So other people can, it seems, kind of do that emotional labor for me. I am grateful for that, too. Even as I learn that I would rather be sad than anxious (a driving force behind some important medical decisions), I know I do not want to be angry. So thank you, whoever is carrying a bit of that for me. Still, please set it aside as soon as you can.

The Chu family (we should be 17 strong) is having a therapeutic laughter yoga circle when we all gather here on Saturday. I am really looking forward to that. Years ago I got certified as a Therapeutic Laughter Yoga Leader, and ran a few sessions at school. Though everyone said they loved the idea, few came to sessions, and many of those that did had trouble letting themselves laugh hard in front of others. Maybe teenaged girls (and their teachers) wasn't a fair way to start. Anyway, THIS group ought to have a very good time.

I'll be in surgery Monday morning, but in the grand scheme of things, that's small potatoes (har). Looking for light and praising the light is what matters.

Oh! Here I will thank Gigi for the inspiration for what will be my parting message to the surgical team right before I am put under. I will ask them: "How do you keep a turkey in suspense?" -- wait for their quizzical looks (you can still see this in the brow, despite surgical masks), and say "I'll tell you after I wake up." Then off to the deep sleep of anesthesia. I have heard that laughing brains learn better. I hope they do surgery better, too.

I hope everyone has a fun, loving, restorative weekend. Let yourselves laugh easily, with your whole body. Do not be shy about happiness.

I send my deepest gratitude for your light.

fear du jour

Hugging Laura has proven to be hazardous. I cry if it lasts longer than a second or two. We have to do the quick squeeze and release or I fall off an emotional cliff.

Tonight I am anxious about chemo. I'm way ahead of myself, but for some reason it is the fear du jour. The only thing more distracting than an elephant in the room is a therapist with a chemo-induced bald head.

tracking the wolf

So it begins. To give my fragile sapling of a blog some roots, I will post a few emails I've sent out that track my new relationship with cancer. These will be old news to anyone who is reading this, but it's a way for me to remember how everything is unfolding.

I've never been too happy about opening a blog to find a long, long entry. But who the heck am I writing to and for anyway? Ellen, I know you're there. Couple of kids now and then, praps. The sleeping spouse (how weird is this? for me to be up before her, before the sun?). Other than that, I have no idea how helpful or interesting this may be.

Sally is coming to visit today. She was the first person to express rage about my cancer. She got angry at the smiling posters in the CVS windows. She wanted to smash them. I am still blinking rapidly over that. And Gail, who made a beautiful alpaca skin stuffed bear (her own alpaca, of course -- Gail is a two-breasted Amazon who can do ANYTHING), said she screamed "It's no fucking fair!" into the Maine woods when she heard about my cancer. Blink blink blink.

I don't feel angry at all. Maybe I will later. I have discovered that others get to hold the anger for me, or something like that. I get to hold the humor. I can joke about my cancer; nobody else can. Not yet. I am happy to hear humorous things -- a good laugh is my very favorite physical experience (yes, even more than what you are thinking). But my cancer is my family, and in an odd way I am similarly protective of it. I guess I need to know that whoever jokes about it loves me unconditionally. And even then, it's only funny coming from me. What is that?

Today's thoughts about the cancer: I think this experience will increase the depth of my compassion, which is always good. And humility, god knows. I worry that I am intrigued by death, and that even that thought will snag me somehow. I have always wanted to live a long life. For a long time now, my mantra has been “All my cells are doing their jobs perfectly to maintain my perfect health!” Wha hoppen?

I am interested to see how I will get through this. How will I need to change? What is going to happen with my great little running regimen, that has been so good for me? What will it mean for my practice, What about the part of me that feels relieved that I am not going to take new clients for awhile? Is that bad?