repeat from 3:00 to 5:30 a.m., while focusing on the breath

Rats. What time is it? 3:00. Shit. Focus on my breath. Relax. Relax. May I feel protected and safe. May I feel contented and peaceful. May my body support me with strength. May my life unfold smoothly and with ease. May I feel protected and safe. May I feel contented and peaceful. May my body support me with strength. May my life...what was it? May my life...um, unfold smoothly and with ease. May I feel...what if the cancer comes back? What would happen to the kids? What would happen to Laura? How big was that life insurance policy I got? How long would that last? Would the kids keep in close enough touch with each other? Would they take care of Laura? RELAX. Focus on my breath. In. Out. In. Out.

In. Out. In. Out. In. Out. Whatever happens, will happen. The Universe didn't promise me a long life. In. Out. In. Out. But I always thought I'd live a long life! Stop. Am I thinking things that made me get cancer? Stop. Stop. In. Out. God, I have to sleep. In. Out. In. Out. Where's my hat? My head is cold again. There. In. Out. In. Out. What time is it? 3:30. Shit. In. Out. May I feel protected and safe. May I feel contented and peaceful. May I freaking relax. In. Out. In. Out. I have seven clients tomorrow! Why did I do that? I am going to be so tired! Is the sump pump still working? I haven't heard it in awhile. In. Out. In. Out. I need to pee. In. Out. In, relax. Out, relax. If I get up, I'll wake up even more. Relax. Focus on my breath. In. Out. In. Out. What's that other mantra I wanted to try? I invite peace into my life. I invite sleep into my life. Geez, now my head is hot. Could I put the hat half on, half off, so I don't get cold again? Will it stay like this, propped against me?

Rats. I really do need to get up and go to the bathroom. Can I get there without opening my eyes? Ow, nope.

Okay, maybe that will help. In. Out. In. Out. In. Oh -- there goes the sump pump. Out. In. Out. What time is it? 4:00. Achh. My back is tense again, just that tiny little tension. How does that happen? I don't even notice it clutching again. Okay, just let it relax. Maybe I can nap between my afternoon clients.

Is Laura asleep? I don't think so. Oh, that's bad. In. Out. 20. Breathe. 19. Breathe. 18. 17. 16. 15. 14. 13. 12. 11. 10. 9. 8. 7. 6. 5. 4. 3. 2. 1. Rats. 20. 19. 18. 17. Imagine I am floating down a soft velvet tunnel, relaxing with each number. 16. 15. 14. 13. 12. In. Out. 11. 10. 9. It would suck to die in my 50s. 8. 7. 6. 5. Would I be in a lot of pain? 4. 3. Why is this so hard? Everyone in human history has had to do this. What happened with my cave dweller ancestors when one of them died? How did that person cope? How did their family cope? 2. 1. Shit! 20. 19. Soft velvet tunnel. 18. 17. 16. 15. Bet it sucked to be left alone in a cave. 14. 13. 12. 11. But everyone has to die. Stop! Focus on your breathing! Cave dweller men must have had incredible beards. Did my Asiatic cave dweller ancestors have kind of wispy beards? Stop! Sleep! What time is it? 4:45??? Oh, my god. I am going to be so tired tomorrow.

I am picturing all cancer cells dissolving. There are no cancer cells. Oh oh, the unconscious mind doesn't understand negatives, so it hears "cancer cells." How do I say it then? All my cells are healthy. All my cells are doing their jobs perfectly to maintain my perfect health. No cancer. Oh, shit! Stop thinking that word! Uhh, back up to maybe 13. 12. 11. 10. How is T'ai going to find a job? I'm worried about him. What if he can't find a job? Did he put enough energy into his law school essay? I shouldn't ask. How can I find out without asking and offending him? Forget it; the apps are in. He'll be fine. Remember him at age 4? What if something happened to one of the kids? Stop. Stop it!

Laura is rolling over. Too bad. She's awake, too. Ooh, that's bad. She's so tired. What if she gets sick? What if that eye pain she's been having turns out to be something awful? What if her mammogram comes back funky? That would be terrible. How would we handle that? Would I be as good to her as she's been to me? Probably not; she's so good to me. What's wrong with me? Why am I sometimes stingy with expressing my love to her? In. Out. In. Out. In. Out. No one would ever want to be with me if Laura died. Smooth forehead, cool forehead. Smooth forehead, cool forehead. In. Out. In. Who would want someone without breasts? I wouldn't want to be with someone else. Stop! Relax! Relax. Relax. In. Out. In. Out. Soft velvet tunnel. 20. 19. 18. Except I don't want to be alone in the cave, either. That must have been scary for my ancestors. 17. 16. 15. Soft velvet tunnel, dammit! 14. 13. Was it scarier than this? Must have been, and they handled it.

Did middle aged cave dweller women have trouble sleeping? They probably died before menopause. They died. 12. Everyone dies. What if the cancer comes back? Stop! 11. 10. 9. What was that mantra? May I feel protected and...protectedandsafe. May I feel contented and... peaceful. Peaceful? Or is it "at peace"? May my body support me with strength. What if I forget to take the steroids tomorrow night, like I'm supposed to do before treatment? May my life unfold smoothly and with ease. Did that person write this mantra to have "peace" rhyme with "ease"? It doesn't quite work, does it. Must be "peaceful." May I feel contented and peaceful. May I please sleep. In, sleep. Out, sleep.

20. 19. 18. Soft black velvet, floating down the tunnel. Seven clients. Jeez, that was stupid. No, it's fine. I can do it. Coffee. Tea mid-morning. 17. 16. Should I start at 100? 100. Breathe. 99. Breathe. 98. Nah. 20. 19. 18. Tea not so late that I can't nap after my 1:00 and before my 3:00. Maybe I should imagine now that I've just laid down for a nap. Why is this any different from a nap? In. Out. In. Out. In. Out. No, go back to the tunnel. I thought that might be working for a minute.

When will my new baseball cap come? UPS Ground; they're pretty fast. Do they really save gas making only right turns? I feel bad about my own carbon footprint. Maybe when I die I can stop worrying about the earth. At least I'll reduce my carbon footprint. Stop! Does having that thought make my cells think I want to die? 20! 19! 18! 17! 16! 15! In. Out. In. Out. 14. 13. 12. 11. 10. There goes the sump pump. Please, please let me sleep. My lips are tensed, ever so slightly. Relax. 9. 8. Lips are tensed again? WTF? 7. 6. 5. 4. Will clients be offended if I wear a "life is good" baseball cap? Would that seem like I'm saying they're wrong to be struggling? Like, cheer up: life is good?

In. Please. Out. Please. In. Out. In. Out. What time is it? My head is cold again. Pull the hat down further. I should wash this hat someday. Has Ellen heard about her mammogram yet? In. Out. In. Out....

a postal moment

Yesterday I had a nice moment with Ron, one of the guys behind the counter at the post office. I was sending some books to Yani, filling out the front of one of those boxes for priority mail. Ron came out from behind the counter, took the box from me, looked into my eyes and said with concern, "What's going on?" "Breast cancer." "You going to be okay?" "Yes, I hope so." "Cancer just sucks. I'm so sorry."

We talked for a minute only, but it was so nice to be seen and acknowledged in this way. Most people I encounter look away, and certainly don't mention that they notice the baldness under the scarf or the baseball cap. Out in public I feel both like I stand out and that I am invisible.

Ron approached me in the perfect way and with the perfect tone: What's going on? 

I wrote him a thank you letter as soon as I got home. Put a 44 cent stamp on, but imagined the mailman would have passed the letter to Ron without it.

the miracle question

Among practitioners of brief therapy, there is a technique called "the miracle question" that some folks use. It starts out with saying something like the following to the client: "I want you to imagine that a miracle has occurred. You wake up in the morning and your life has become absolutely perfect. What would you notice, what would be different about your life such that you would know that the miracle had taken place?" 

You then ask some follow-up questions such as, "On a scale of 1 to 10, how much do you want this miracle?" "How confident are you that this miracle is actually possible?" and "How willing are you to do your part to make this miracle occur?" That kind of thing. You can also look at when in your life you've been further from the miracle than you are now, and reflect on things you've done to move closer to the miracle. In subsequent sessions, you can use the miracle, and its related questions, as sort of a baseline for goal-setting, monitoring progress -- keeping your eye on what you want, not what you don't want.

As we walked my well-worn 3-mile loop today, Laura and I talked miracles. It took Laura multiple layers to get to herself. Her first several things were all about the rest of us: in my perfect life, the kids would be perfectly happy in their lives and their work and feel wholly loved. T'ai would get into the law school of his choice, have great success and meet a man who adores him. I would be cured and healthy.  

Your life, your life, I kept reminding her. Oh. We walk on.

For a minute out come the ideas. The steam bath, the mini-Cooper, the new dishwasher. How much do you want these things? Gee, not much. 1 or 2.

Laura's miracle would be to live with more balance, with greater clarity of direction in her work. She would know the miracle had occurred if she were less judgmental, more able to love what is, to stay in the moment.

For me, I would know my miracle had happened if I woke up healthy and strong. I want to wake up that morning as a compassionate, effective therapist. I will laugh more. I will have learned to turn my attention from useless, worrying thoughts to good and happy thoughts. I will have learned to reach out to others more, to nurture friendships with people that live closer than 100 miles away.

It turns out that the miracle, of course, is almost entirely in our minds. In fact, if it weren't for the health piece, the miracle would be a mental shift, no more, no less. Neither of us would change the external furniture of our lives to achieve our miracles of a perfect life.

Still, the miracle change that I want most of all is to wake up healthy. That's the part of my miracle that doesn't feel entirely under my control. I'll handle the getting stronger part of the job.  Just please let me be healthy.

I just noticed that I did not even include having breasts in my miracle wish. Maybe that's a step toward the miracle of turning my attention from useless thoughts toward good ones.

What would your own responses be to the miracle question? How much do you want this miracle? You don't have to answer; I'd just love to have people I love thinking about it.

the big toe of mood stability

I'm a little embarrassed to say that I am in a totally different mood now. If I felt bored before, it should have lasted longer, don't you think? Isn't that the whole idea of boredom, that time seems to crawl? Did it feel interminable? It turns out it wasn't -- but when will it strike again?

I am acutely aware of my moods these days, much more so than when life is popping along at a good clip. It is interesting to see how they change. I have always tended to be Steady Freddy with moods. Now I feel like Mercurial Muriel.

I considered going with "Moody Trudy," but that's not quite right. I think of "moody" as being irritable, edgy, something with prickers. I'm pretty sure I'm not moody. My "felt experience" range currently includes: blah-discouraged, blah-bored, blah-worried, blah-fascinated, theoretically (blah) grateful, genuinely grateful, blah-peaceful, and pretty peaceful. All relatively quiet stuff; no prickers.

Today I am feeling pretty peaceful and genuinely grateful to boot. I am glad to have no clients today. I look forward to reading, writing a couple of letters, going out for dinner (too bad it has to involve food) with a friend of ours. I want the day to last long. When my mood is peaceful, I can embrace the James Taylor sentiment that: "the secret of life is enjoying the passage of time." Right now I am there.

This is bone pain week, with only 4 clients scheduled. My perspective flip-flops, of course, on how this is going. Part of me misses having a busier practice, as the alternate weeks where I see ten or twelve clients are more interesting, more energizing, more uplifting -- even if I am spending more energy at the same time and I'm tired by the end of the day. I wince at seeing calls come in, knowing prospective clients are hearing my voicemail message that I'm not accepting new clients for the time being, and then having them disappear and go elsewhere.

And yet I know I couldn't carry much more of a load. I actually got winded blowing my nose this morning. This made me feel blah-fascinated. After catching my breath from the nose-blowing, I got the recycling bin from the curbside, then had to sit at the kitchen table until the spinning stars faded from view. That bout of light-headedness tipped some mood balance, and I felt blah-discouraged.

It must be that when you have more energy there are ways of shifting your mood, little things we do to keep our balance. Going out to get the recycling bin makes you forget what you might have been ruminating about, because you wave to the person parked at the light, then pick up some sticks on the way back to the garage, maybe replace a chunk of turf that the plow shaved off the lawn. You're not just focusing on making it back to the kitchen table.

The little things we do to adjust our moods must be like the big toe. You don't realize how much you rely on your big toe for balance until it's gone, and it becomes clear that it had been constantly shifting, loosening, tightening, gripping, helping you stay upright. Lest you worry: this is what I hear about the big toe. I may be losing my nails, but I should not lose my big toe. For this wonderful but also theoretical "what-if-I-lost-my-toe" type of blessing, right now, I confess I am somewhere between theoretically and genuinely grateful.

But here is the upbeat upshot: though he/she poops out more quickly than when I am well, today I can see that Steady Freddy, my temperament's big toe, is still taking care of me, still working to keep me upright. For this I am definitely, right now, for the moment, genuinely grateful.

I had better end here, though, before Muriel steps on Fred.

is this boredom?

I have a distinct memory of standing by myself in the woods outside our house when I was 7 or 8, and thinking to myself: "I am having a happy childhood." We lived out in the country, and I never knew boredom.

Ellen and I would flatten the alfalfa, which grew taller than we were, into hallways and rooms. We would walk into the grass and disappear, but be among chambers and passageways that snaked through the field. Man, we must have been pretty short.

We spent entire days in the maple tree up near Pop's garden. Each kid had a branch that was his or her room. We were busy doing nothing. I stood in the stream and studied water in motion, gathered frogs' eggs in clumps, then later cornered pollywogs in the cup of my hand. We tried to keep Japanese beetles away from the perfectly ripening raspberries; a couple of times mom gave me a penny for every 10 beetles I caught. It was relaxing, gratifying work, and I thought the couple of pennies were a bonus.

Often I played alone. I did not know loneliness.

I tasted everything that grew. I'm not sure why. It was a way of knowing things. To this day, when I see local flora -- mountain laurel bud, elm twig, maple leaf, even acorn -- I can recall its taste. I'm sure I ate my scrawny weight in timothy stems, the tender part that hides in a sheath and slips out with gentle but firm pulling.

I would take fist-sized chunks of basalt or granite and pound quartz pebbles until they broke. "Fresh" quartz smells like gunpowder (just like the "caps" you could pop with a rock; remember those? Caps came in those long red strands of paper and made such a nice snap of a sound). I inhaled the quartz smell deeply. I loved to see the clean crystals that appeared in freshly broken quartz, but mostly it was the smell that I was after. I ran my own little quarry at the side of the driveway. In the fall, sitting in the same spot, I took the same fist-sized rocks and broke into the hickory nuts that were scattered on the raggedy lawn. They were sweet and buttery, and the meat came in the tiniest morsels that ensured their savoring. To this day, I will pull the car over for a good pile of hickory nuts.

I've carried an immunity to boredom all my life. I've even seen boredom as something of a character flaw. The kids will recall that I would not allow the words boring, bored, boredom. The concept of boredom pains and offends me.

And yet now, to my horror, I think I am feeling bored. And boring, too, which is worse. They must go hand in hand, these two things.

Am I bored (and boring) simply because I lack energy? All the little projects I might under other circumstances be doing -- from removing winter's windfall in the yard to putting away the scarves and mittens -- I don't have the energy for. I am disoriented by this unfamiliar feeling. Is this boredom?

I am just slogging through chemo now; it is uncomfortable yet undramatic. It just goes on and on. Bone pain, weakness, headache, numbness, near total lack of appetite, blah blah blah. Even new little symptoms are more tedious than alarming. Incremental damage to my nails appears like tree rings with each treatment. My nails are lifting off in some places, and my attitude is sheer ennui: "really? we're going to do this?"

I laugh less readily these days. And I make others laugh less. You can feel it in the blog, too. I know. I know! 

Where is my natural and joyous capacity for being busy doing nothing? Where is the self that was blissfully ignorant of boredom? Where is my sense of humor? I miss that most of all.

Insert witty ending here.

hooray for steroids

Had some serious energy for several hours today. Maybe a bit too much. Laura says to tell you that I wouldn't shut up. Steroids.

agency and pathways

As soon as the plumbers had driven away last week, the asbestos removal people pulled in. We were scheduled to at long last have the asbestos removed from the basement pipes of this old house. I don't know -- you get cancer, and you start to think about stuff like that. Shouldn't we get the carcinogens out of the house, dear?

A couple of the guys who were doing the removal were smoking cigarettes through the whole process. This seemed unfathomable to me. Sure, they wore masks and the whole area was sealed off for our protection, but smoking while you remove asbestos? This was a different world view from mine.

It reminded me of a recurring conversation that Glen and I would have in grocery stores in our years together. Seeing someone who was buying a cartload of soda pop, junk food, and processed meals, and who themselves was already obese, my thought was, "If you're that overweight, why would you eat like that?" Glen's firm answer was always, "Paula, they're obese because that's how they eat." "But then why would you keep eating that way?" "They're that way because that's how they eat." We'd go in circles with our different takes on this. For years and years, well beyond the divorce, this difference in our perspectives nagged at me. I knew it had something to do with how we each saw the world; even knew it had something to do with what happened to the marriage. But I couldn't get at what that difference was.

Sometime in the past couple of years, I stumbled upon the positive psychology concept of agency and pathways, and the grocery store puzzle (as well as the marriage puzzle) made new sense. People with a sense of agency have a felt sense that "I'm captain of this ship called my life, and I know how to steer it." People without a sense of agency are less likely to be focused on actively steering; they are then more susceptible to feeling victimized by, resentful of, and sometimes helpless against the storms that cross the ship's path.

When you have a sense of pathways, you can see, even if it involves lots of trial and error, strategies for managing the challenges of steering the ship. At least you think you can see strategies. The thinking you can is the sense of having pathways, and it keeps you engaged in the steering process, greatly increasing the chances that you actually will solve a problem. Believing you have pathways connects very directly with your sense of optimism -- and then, by extension, your happiness.

In the past month or so, I have gradually felt my own sense of agency slipping away from me. It's been fascinating, in a private and morbid kind of way, and this fascination in fact was part of what worried me. There was a part of me that wanted to see how this played out; what would happen if I let myself get really depressed? When that thought became my dominant thought, I knew it was not a good sign.

When you start to think, "What a drag. I will have to eat food every day throughout my life," there is something amiss. Doesn't that sound like depression to you? Yah. I long to find the self that says, "I get to eat every day for the rest of my life!"

It became, or has become, hard to imagine feeling well. I began to envision feeling worse more clearly than I could see feeling better. When cars drove past me, I'd wonder: "Do those people feel well? Does anyone feel well?" And reading "Body & Soul" magazine a couple of weeks ago, I found myself thinking: "Why are they including these recipes? Who would want to eat? Who would want to go to all the trouble of cooking this blueberry pie?" I began to think more about death than about life. Not in a suicidal way (at all) -- just a nice, moseying, ruminating drift toward darkness in my thoughts.

So a part of me was thinking these thoughts. Another part of me was saying, "Whoa, paula. These are really not rational or useful thoughts," and a third part of me was thinking, "This is kind of compelling. I'm not sure I want to turn around from this dark path."

But I knew I needed to. And I knew that Laura was the Master of Turning Towards. So a few nights ago, I said, "La. I think I may be getting depressed." Honestly, it was like I think it must feel for an addict who finally says, "I think I may have a drug problem." You don't want someone to intervene; you're at least ambivalent. But by Grace, fundamentally I want to be well. And I knew I had to trust that this would matter to Laura as much as -- or even more than, in that moment -- it mattered to me.

Of course it helped instantly to start talking about it, and of course Laura dropped everything to spend the evening helping me talk about it, helping me generate pathways out of this. I am a firm believer that suffering lessens when you share it, just as joy expands when you share it. I am determined to do whatever I need to do to keep a more optimistic perspective, to keep my treasured, core sense of agency. It's hard when you feel like crap, and can't remember feeling well. I miss my well self. I am accustomed to being pretty happy in my life. Quite happy. And I am losing sight of that, enough to know that I need to flag down some help. Casey's death added to the sadness, but this little tendril has been approaching me for awhile.

I want to make sure I stay ahead of the creeping vine of depression.

Thanks for listening. I'm okay -- really I am, or will be. Naming and then calling out to the spooky things along the path -- I see you, dark thoughts! -- is one of the ways I intend to shoo them away.

a pause for Casey

A client of mine died two days ago, in the middle of a battle with leukemia that we all thought was going to last much longer, a battle we thought she might even win. She was 19, and we had been working together for three-and-a-half years. We had a session on Monday, in my chatroom, since she was in the hospital, secluded for weeks in her room while they lowered her immune system in preparation for a bone marrow transplant from her brother. She was having a relatively good day on Monday, though she was deeply tired of being so weak. On Tuesday afternoon, an infection raged through her and she was gone within hours.

Her family asked me to write the obituary, as they were in such pain and disorienting grief that no one could stay focused long enough to do it. Never again do I want such an honor. Laura, who knows Casey and her family well, has guided them by the arm through every step of the memorial service planning. They are blind with grief.

It is not the usual thing to have one's therapist speak at one's memorial service, but they have asked me to do the main eulogy as well, with full disclosure that I was her therapist. Writing it has been delicate, sad work. I want to bring comfort to Casey's friends and family, to protect her privacy forever, and still speak truth about all she had to bear.

In the meantime, a half-written blog entry sits somewhere in cyberspace. It will need to wait. I am birthing a story about a lovely, hard life and an inexplicable, early death.

what a rack(et)

You don't want an update on the sewer.

Oh, what the heck. Severely daunted, the two hapless guys who have been sifting through our sewage for two days brought in another company with a big machine that can blast out anything with its force. They snaked back down the 200 feet and blew the pipe's nose. This took 20 hours of work and will set us back about $3,500. Even though now I'm bumming at that amount, for a couple of hours I was relieved. All the talk about possible excavation was making my head spin, with dollar signs in my eyes, cartoon-like.

And this next update is a disappointment to me. Today I finally went to buy some boobs. I had hoped to offer an interesting, maybe even swashbuckling adventure in how they fit you for prosthetic breasts. It took all of five minutes to "get fitted" and to purchase these things. It was less involved than buying an ordinary bra.

Fortunately, I came armed with a "prescription" for a pair of prostheses, signed by my surgeon. The cost without insurance? $660 for a pair of AA-sized mini-pillows that are no more elaborate than a pair of 1980s shoulder pads. I kid you not.

I'm not sure how often I'll wear these things. Yani says they sit a bit too high -- testament, probably, to where my actual AAs had begun to reside. Had gravity affected them? I thought they were too small for that. Anyway, I guess the thing about phony breasts is that you can pull them down if they're too high, or shift them to one side or the other. You can even put them in upside down.

I found myself pulling my "breasts" down several times this evening. You just kind of grab them and shift down. It occurs to me that this is not something to be done in front of others, but it also feels weird to have to be discreet about adjusting something that isn't actually part of my body.

I'm checking the prosthetic task off my list, but it turned out to be a let down. Ain't nothing like the real thing, baby.

sewage, and I don't mean food

Our sewer pipe clogged yesterday and nasty stuff bubbled up in the flower bed against the house. Today plumbers put 200 feet of snakery down the pipe, and they still couldn't clear it. Turns out that part of the problem is that the former owners appear to have thrown hundreds of "flushable" wipes down the drain. We've lived in this house for 5 years and all those wipes are still intact, living la vida loca in our drainage pipe. In the violence of trying to clear the clog of baby wipes and maple tree roots today, the circa 1920 ceramic pipe broke in several places. It's going to be a very expensive, smelly mess, tearing up the yard all the way down to the road.

"I haven't seen this kind of a mess in 40 years of sewer work" was an unfamiliar sentence to me, and I'm still unsure of the appropriate response. I gave the plumbers an apologetic wave as they drove off till tomorrow. My smile was friendly, but weak. I think this is how you handle these things, but again, I'm not sure.

We've been instructed to use water sparingly -- flushing only, um, under duress.

God works in the weirdest possible ways, cause I'm thinking it's an almost perfect time to be constipated from these painkillers.

strained relations

Ohhhhhh. So this is bone pain. Ah.

I buckled around 5:00 this afternoon and popped an oxycontin. I had hoped to avoid it, and tried to make peace with my bones through a Tylenol-negotiated detente. But the relations with the pain were already too strained. Here I sit, listing slightly to one side, with no regrets about having surrendered in order to gain peace.

It was hard to tell when to intervene. Yani and I went to Quaker meeting this morning, and if there was anyone in there without bone pain by the end of an hour on those benches, I'd like to shake their hand. The pain crept in slowly from there, and then suddenly by late afternoon it had Arrived, and was tugging on my sleeve and kicking my ass, too.

Laura tried to help by transforming the kitchen table into a massage table. She dragged down an old camping mattress from the attic for cush. Massage didn't help with the pain, but I appreciated the gesture and the novelty of a bed in the middle of the kitchen. While Ting made us Chinese pancakes and asparagus, I lay on the kitchen bed and waited for the oxycontin to do its thing.

I am sad to report that I could not taste Ting's delicate Chinese pancakes, nor the perfectly cooked asparagus. At this point in my treatment, taste is like eating in a dream: taste is a concept, not an experience.

I was shocked this afternoon to see that my hands had turned an unsettling shade of dark blue. It looked like I wasn't getting any oxygen at all, the skin nearly as dark as the veins underneath. Imagine my relief when I washed them and a deep blue tint colored the sink. I need to rewash my new jeans, or else keep my hands out of the pockets.

taxol: round one, day 3

Laura is a visual learner. Put her in front of a movie or a computer screen and then try to say something to her that she needs to retain: everything has to stop and she has to swivel her head toward you. She'll catch everything that comes her way visually, though. She's constantly pausing movies and saying, "I just saw a mistake." Sure enough, run it back ten seconds, and the guy who was drinking out of a mug is now drinking out of a cup. The woman with the scarf tied one way has it tied differently now. The newspaper on the lap is flipped over. I am always impressed.

Auditory learning, on the other hand, is not her thing. I forgot that when I asked her to take notes while the doctor talked to us on Thursday. Here are Laura's notes: "suspicious. triple. finding nodes. onca type. mamma print." We haven't the faintest idea what any of it means.

Here's what I remember: the doctor had, the night previous to my appointment, consulted on my case on an oncology webinar with experts from Sloane-Kettering and elsewhere. She wanted guidance on whether doing taxol is going to gain me a benefit that counterbalances the possible costs. The "suspicious" part of Laura's notes comes, I think, from the fact that my tumor looked originally to be grade I, then upon surgery turns out to be grade II. That, and being triple negative receptor-wise, plus the tumor having some lympho-vascular involvement, could indicate that cells were already on the move at the time of surgery.

The answer the doctor got from the experts was ambiguous. The upshot is that they want to see how I respond to the taxol; if it's bearable, we will proceed as planned. If the costs are too great -- meaning bone pain that is too intense, or too much neuropathy begins to accrue in my hands and feet -- we will stop.

So far, I am okay. Bone pain usually begins on day 3 or so, and today is day 3. There is a bit of a ticking bomb aspect to this, emotionally.

I do feel some neuropathy in my hands, a schmancy word for sensitivity, numbness, and tingling. It's actually nerve death, and it's generally cumulative and can be permanent -- hence the caution. I am extra sensitive to cold and hot, and my thumbs are red, peeling, raw. I wore rubber gloves to hang up the laundry outside -- it's a glorious morning, and we hope to bring in the smell of spring on the sheets.

I know some people who have gotten part way through taxol and then asked to stop. The pain is too much, the fatigue too overwhelming. I really hope to slog through it. At the beginning of all this, my focus was on following the prescribed chemo regimen, figuring out how to shape-shift certain aspects of my life to make room for chemo, all that. Now my attention is on decreasing the chances of recurrence. Now it is on making it to the five-year survival point. It is a subtle mindshift, yet I feel it through and through.

We asked the doctor how we would know if the cancer has spread. "You won't," is her answer. You won't know until it's created some trouble for you. I hate this answer.

In the meantime, we are to feel, gently, for lumps and bumps, particularly around the lymph nodes and the erstwhile breasts. Since each breast was done by a different surgeon, they've healed differently, and there is more leftover breast tissue on one side. I don't like that. If I'm going to take off the breasts, I want all the tissue gone. That's the whole damned idea. That's what makes the loss okay.


Here is a shot of me in this spring's fashion.

pardon

Please pardon the previously posted poison pity party.

time and poison

I am a terrible backseat driver with Time. Slow down! Hurry! Stop right here. Go there, now. Terrible.

It is March, at last. And still I am dissatisfied and want this tantalizing month to hurry its way through.

If you are someone who wants to savor the moments of this month, with its promise of warming earth and new growth, may my cajoling of time have the opposite effect on your experience of its passing. May time move like moss for you.

For months now, I have been dogging time to hurry the heck up. My days have been dragging their sorry asses through time as I wait to feel less chemo-sick. Laura and I are actually doing the iffy practice of crossing days off the calendar. January's 31 days and February's 28 are crossed off, but March and April have no blue highlighter Xs at all, and they look endless.

I remember crossing off days during particularly long semesters in high school; I'm pretty sure it doesn't help. But it's hard to stop now. It's like watching the big clock in the station when you are waiting for someone you love to arrive on a train that is late, maybe even broken down somewhere along its tracks. You're tired and anxious. You look at the clock so often that you accidentally slow down time.

Time passes slowly when you feel crummy; I am gathering lots of data on this.

A number of people have asked me if it helps to think of the chemo as sending in little soldiers to blast away at cancer cells. Someone else asked if I had considered that I embody the battle between David and Goliath. I wonder if I am supposed to embrace these metaphors for battling the enemy, battling evil. It just doesn't feel true to me.

What does feel true is that I'm getting poisoned. Oh, I understand why I'm getting poisoned. And while I have very deliberately elected to undergo this treatment, there is no denying what is actually happening. When in the course of a few weeks your hair falls out, your gums recede, your teeth ache, your whole mouth is rotting, food tastes like toxic waste, your eyes tear yet are painfully dry, your body moves through space as though air has thickened, chowder-like, this is medicinal poison doing its work.

An oncologist friend said point-blank, "Oh, this will damage your heart." I appreciated his honesty, but it is hard to think of all the nice body tissue that is paying the price while we hunt down a few terrorist cells (again with the military metaphor!) that might be hiding out in the dark corners of my body.

Certain things give me an actual whiff of the poison inside me -- the smell of dishwashing detergent seems to be the worst, but some soaps are not much better. Coffee grounds, bananas, steaming soup, peanut butter -- anything that gets the olfactory factory up and running -- churns up the chemicals inside me, too, bringing the poison to the surface of my consciousness and my tongue.

I'm anxious about the new poison that is coming on Thursday: taxol. When the doctor writes on the instruction sheet: "OKAY to take narcotics," it's hard not to be anxious. Like pretty much any narcotics, I think. "What have you got leftover from surgery?" she asks. Oh, this narcotic, that narcotic. "Okay, take those."

I did negotiate to take a bit lower a dosage of pre-infusion steroids. Since you're in danger of having a sensitivity (read "possible life-threatening allergic reaction") to taxol, you're supposed to take 5 Decadron at bedtime the night before treatment, then 5 more at 6 a.m. I got her down to 4 instead of 5; a bone she tossed to the patient who worries about sleep. Essentially you should expect to pull an all-nighter before treatment; the steroids will keep you up. Then you are wired all the day of treatment, and then you crash. Like for 4 days of exhaustion and pain. But you get to take narcotics for the pain.

Remember me on narcotics last time? They're what brought about the Hell of Constipation, and led to Laura the gladiator's willingness to do the unthinkable to rescue me. Gosh, I hate to go back there. I'll bet she does, too.

It's bedtime, March 1. I'm going to get the blue highlighter and cross off the day. Come on, Time, let's head to bed. We can both rest there for awhile.