chutzpah

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

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

waterworks

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

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

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

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

Not a complaint. Just sharing info.

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

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

solidarity

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

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

captain quasi-courageous

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

That was fine with me. No worries.

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

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

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

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

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

progress

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

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

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

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

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

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

fixing my light

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

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

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

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

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

un bon jour

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

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

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

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

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

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

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

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