Braiding it back together

Threads, by Garry Knight on Flickr, licensed under Creative Commons

It should be easier by now. I should be able to get through a day of scans and results (lucky me that that is the same day) and the next morning, bounce back to my daily life with a renewed sense of purpose and industry. I mean, that’s how most people would do it, right?

I’ve never been like most people, though. I spent all week shunting ahead by an hour, a day, a week – the two-hour block of time I’d set aside on the calendar to get writing, reading, and my latest translation job  (which carries, infuriatingly, no clear deadline) going. I found lots of distractions, which were even more shiny and distracting than usual.

But the truth is, it’s hard not to feel kind of lost. I take being a cancer patient seriously, as though it were my job. But I don’t have any work to do right now, except to take the pills that will hopefully keep the cancer at bay for longer than anyone could imagine. So if cancer is my job, I am currently, as my friend T likes to put it, with regard to lulls at work, “vacationing at my desk.”

I’m also a bit morose about the fact that at this time last year, I had a full-time job. I was working. I was leaving the house every morning without children, and with a Purpose that didn’t involve the kids, and at the end of the month, I was getting a Paycheck. I’m working now, at my little part-time job, but that’s a drop in the bucket. Not even a drop. Hardly a speck. The same with the translation jobs. I know that reorienting myself professionally will take time – particularly since my profession seems to be saying, in every job posting I read, that it no longer has a place for me. I don’t know if it’s the color of my parachute I should find out, or whether in fact I need a new type of landing gear entirely.

On Friday night, the kids asked me to braid their doll’s hair, a first. I did my best, which was good enough for Young J and Young A. They wanted a doll to play with, but they have none of the exacting expectations of how she should look that more committed doll owners would have. Mostly, they like dressing her and making me fix her hair, and then putting her back to bed, in their closet, where she sleeps peacefully in her box for weeks at a time. I enjoyed playing with Barbies when I was a kid, and it offered great opportunities for DIY, because I didn’t own all of their pink accoutrements. This doll (a family hand-me-down) is much bigger, and all of her accessories seem to be just so, and there are stores and mail order catalogs full of things she might need. She leaves me cold. The boys like her.

In an effort not to lose another week, I have not only made a to-do list for this week, I have set goals. That might not seem noteworthy, if you are a person who has done that sort of thing all your life, and thus have that impulse well-calibrated. For me, it’s a departure. (My old self is standing on the other side of Security, wondering why I have to go.) I have planned all our meals for the week, and have my grocery list ready to go for tomorrow morning after the gym. If I can’t leave the house with a purpose, heading out to a job, I can at least try to do my job more professionally.

It’s worth trying, anyway.

Three month lease/A plea for decency


View from Underneath the Air Force Memorial, by Will Marlow on Flickr, licensed under Creative Commons

I played the lottery again today. Yes, it’s perhaps a bit more like the Shirley Jackson lottery, not the kind of lotto that makes you rich. But I did not get pelted with stones today. My scans, that is to say, were good. The tumor on my brain which was zapped anew in November? Shrank. Significantly. And no signs of any new tumors, brain or otherwise. I shed a couple of relieved tears upon getting the news from Dr K, the neurosurgeon who looks at my MRIs, and the one who’d  said it was a “gutsy move” on his part to redo gamma knife surgery last November, instead of doing something more invasive. I’m so glad his gut paid off. More scans in three months.

While I waited to see Dr P for the CT results (chest-abdomen-pelvis), Nurse Practitioner K passed by. She gave me a surreptitious thumbs-up and whispered that all was well. I loved her even more for that. Dr P and I had our usual hugfest, punctuated by her tales of triumph from her MBA program (I must be the only patient who asks her how it’s going). All of this excused the unskilled phlebotomist today (not Phlebotomist B, who knows what he’s doing), who failed to tap a vein on my left arm, and had to go instead to the right, which had already had an IV in it for several hours. There was also a new nurse practitioner who examined me today. She was trying really hard, but she wasn’t quite as good as K or R. Maybe she’ll learn how to go along with my morbid jokes – or maybe not.

I’ve now officially been around the block a few times, when it comes to scans. And I’m considering launching a public service campaign, so that no person will ever show up to a scan improperly clothed again. The pathos evoked by a man – yes, specifically a man, old or young – wearing nothing but dress socks, dress shoes, and a gown gaping open at the chest, is now something up with which I will not put.

Having been around the block a few times, I know enough to show up for a scan not wearing anything metal – my gold wedding band is fine. There are exercise bras, ladies, which contain no metal whatsoever. Were you aware of it? Men, bring some sweatpants so you won’t need a belt. Unless you’re wearing some kind of corset with steel stays, for reasons known only to yourself, you should not ever have to wear the striped seersucker (emphasis on sucker) gown of the uninitiated. No matter how many times I go for a scan, I have rarely seen people who have cracked this code. It makes me sad. Going through a giant tube in your underwear and an ill-fitting seersucker gown does not do wonders for your feeling of humanity or your hope for the future, as you might imagine. Wearing your own clothes when you go through the same trials? I, for one, find that infinitely more bearable. Yes, I suffered through the morning without hairpins (exhibit A), but I wore yoga pants and my own shirt inside the machines, and that helped. A lot.

Exhibit A

The thing is, who imagines they will need a scan, until the day they have to have one? I acquired this knowledge gradually, having shown up wearing the wrong thing. But I don’t think everyone should have to learn the hard way. Proper scan attire could easily be an add-on to, say, a high school health course. They can cover intercourse, illicit drugs, and what to wear to an MRI or CT scan. Do the youth of today need to know about much more than that?

If everyone could master this basic skill, we could move on to more advanced things, like how to sing along to the noise of the MRI machine, as I did today.

(* This post brought to you by an excellent couple of glasses of wine.)

Where I’ve been and where I’ll go / Happy birthday to Young A

I’ve been away the past few days. From the stats I can see a few folks have been checking in on me. Sorry! I guess I didn’t mention that after J got back from skiing in Utah, he had about six hours until we all flew to New Orleans. We were there for four lovely, action-packed days. Having the boys along made it a different kind of trip than I’ve had there in the past, but it was different in a good way. Enjoying the city is easier when you aren’t hungover. We took buses and streetcars everywhere, and they arrived on schedule, without fail. We visited giraffes, anteaters, and alligators in a marathon five hours at the Audubon Zoo. We played mini golf at City Park to a soundtrack of great New Orleans music. The boys ran around on a field pretending to play football, with the son of an ex-NFL player who was probably expecting them to actually know how to play football (they don’t). We ate beignets at Cafe du Monde, and Young A (who was sleep-deprived) freaked out about being dusted head to foot in powdered sugar.

And Young A turned six, while we were there. I didn’t write him my customary post on his birthday, because we were too busy celebrating it. His former babysitter lives in New Orleans, so she came by to celebrate with us, and then babysat while J and I went out to Rock n Bowl for Zydeco night.

Young A seems to be changing at such a rapid rate. On the trip, I noticed him becoming extremely outgoing with strangers, speaking to them loudly and clearly and saying random things. One night there was a cop at the door of a crowded ice cream/pastry shop, and Young A said to him point blank, “I think police like food with holes in it.” He was referring, of course, to the fact that in our neighborhood, the police congregate around the bagel shop, and he’s aware that cops also like doughnuts. It was a weird thing to say, but hilarious.

Young A still bursts into tantrums headlong, with gusto, like he was born to have them. It’s developmental, I think, so we’re trying to ride them out. He can still be reset with a hug and sometimes even laugh himself out of his misery (though to attempt that can be very risky). He reads the same books over and over again, obsessively. He can’t be relied on to like the same foods from one day to the next. He has elevated nose-picking to a layer in the hierarchy of needs. This is Young A at six. I eagerly await his gap-toothed smile, his funny, temporary lisp.

Here are some vacation snaps. I’ll be flipping through them tomorrow as I wait for my MRI/CT scans (which begin at an uncharitable 7 a.m.), and then wait to see Dr K and finally, Dr P, for results. A marathon day of confronting mortality, which is hopefully not imminent.

Like sands through the hourglass

Tick tick

I’ve been tidying up quite a bit lately. My nightstand no longer harbors chaos within its drawers and compartments. I kept Young J’s fallen-out teeth, for some reason – perhaps on the off chance someone might steal them from the garbage and find a way to clone him, and that would not be OK with me. I kept hospital bracelets from the boys’ births, and their ultrasound portraits. And, though I have not used it in over nine years, I kept this watch.

When I was pregnant with Young J, I wore the watch until it, like my wedding ring, stopped fitting. I was up a few pounds. Okay, to be honest, if I’d been a boxer, I would have been classified as a heavyweight by the end of my pregnancy. And it freaks me out that right now, I don’t weigh all that much less than I did at about seven months pregnant. But it isn’t freaking me out enough to go back on a diet, just yet. That will need to wait until we’re back from vacation next week.

So, this watch. I bought it on my first trip to Paris in 1997. When I was still living in Ann Arbor, Michigan, but was yearning to change it up for the big city. I wrote more about Paris last November, after the terror attack. I didn’t mention the watch then. It didn’t seem important. Today it seems to be.

I visited the Galeries Lafayette on my first trip to Paris, primarily because I’d learned about it in my junior high French textbooks, and that first trip to Paris involved lots of ticking of boxes of places I needed to see merely because I’d heard of them in textbooks. (I did not visit the Moulin Rouge.) I didn’t really need anything, but I did buy my nephew N, who was a toddler at the time, a toy toaster, which came with foam bread.

Outside the massive store, there was an entire parallel universe of commerce set up in the street. I stopped by a watch vendor. I hadn’t ever had a grownup watch. I went from a Snoopy watch to a digital watch to a couple of Swatches. I picked out this watch, which looked classy enough, to usher me into a new phase, adult watch ownership. I even needed to wind it.

I wore it. You wear a watch and you don’t think about it. You don’t think about it, until it is the battery dies, and it’s about six years since you bought it, and you realize it had run all that time on the same battery. Not bad at all, for a street watch. It’s a genuine “Audrey.” The word Switzerland appears nowhere on this watch. But it’s a workhorse.

Of course, sitting in a drawer for nine years isn’t good for a watch. This morning, I popped it in my pocket and took it over to the shoe repair/jack-of-all-trades guy on the corner. He said he could replace the battery for seven dollars. I realized I didn’t have cash and he said I could return with it later. (I ran to the ATM, because although that kind of business person exists less and less, I didn’t trust myself to remember to pay him later.)

When I came back, he replaced the battery, and then started tapping the watch. Rapping it. Then kind of bashing it against the shelf. At first he proclaimed it dead. But he kept rapping and tapping it and fiddling with it, as though he didn’t have an entire store worth of shoes and watches and other things to fix. I told him I’d bought the watch in Paris. “Oh, you went there on your honeymoon?” he asked. “No,” I said, “I was there by myself.”

After a few more minutes, he said he’d fixed it. I slid it over my wrist, worried it wouldn’t fit. It did. He said to come back if it stopped working. I said I would. (As of now, it’s still working.)

Why did it take me nine years to replace the battery on my watch? I was busy, with the kids mostly. I got a cell phone. I got a smartphone that shows me the time whenever I want. But guess what? Lately I’ve noticed that I pull my phone out to check the time, and I bypass the clock on the lock screen, because I  see I’ve gotten a new email or text, and then Facebook draws me in. And then I shut the phone off again without remembering to check what time it is.

I’ve replaced the battery on my trusty old watch. I hope it keeps ticking (but not too loudly). I hope it makes me more efficient. I hope it doesn’t start to seem like a burden, because as of right now, ten days away from my next scans, I don’t have any sense of my time, in the general sense, being limited. As far as i know, all is well. As far as I know, the works are in good shape. Time, at this moment, is no more precious to me than to someone who is not ill. But I’m still not at liberty to waste it.

[Blogging may be light this weekend as I parent en solo while J enjoys a much-deserved break. (Unless I become so exasperated I decide to live-blog the whole mess.) Happy Valentine’s Day, Happy Presidents Day, Happy February Vacation. Stay warm, if that is hemispherically appropriate. If not, stay cool.]

Serenity when?!

City Park Bridge III, by Jodi Grove on Flickr, licensed under Creative Commons

Next week (well, the second half of the week): Serenity. Now: Endurance.

This is the week before the kids’ week-long break from school. I had decided Sunday night that this week would be devoted to ME and MY WELL-BEING. I’d be going to classes at the gym four mornings in a row. I’d get a handle on what I was eating again, and drink much more water. I’d schedule two hour time blocks on my calendar specifically earmarked for writing projects. So much good stuff. I’d come to the end of each day feeling I’d really ACCOMPLISHED something. I’d “fill my bucket” and be refreshed and ready for four days solo with the kids. And that would make the fact that J is leaving Friday for a long-awaited ski trip easier for me to bear, with grace and good cheer!

And then stray cats yowling like injured babies kept me awake a good portion of Sunday night. I should have sensed it was a bad omen.

I went to the gym Monday morning, at least. Then I had another email nudging me about the translation project I’d burned out on and which I felt like I’d already spent too much time on. They still were in no hurry, just curious. I decided to just finish it – there was about an hour of work left. That turned into closer to two hours, of course, because I had to toggle between two different video clips – one with good audio and the other with the timecode I needed for the transcription. And then it was pickup time. By about 6 p.m. I was falling over from sleep deprivation. Young J suggested I go to bed at 9. I actually listened, and slept so many hours I had to keep forcing myself back to sleep until my usual wakeup time. (Naturally, we all overslept.)

Young A woke up very congested yesterday, and even though he wasn’t feverish, it seemed cruel to send him to school. He sure was peppy though. I spent what felt like twelve hours sitting on the floor sifting through Legos, because we’d decided on an ambitious project, to rebuild a giant house Young J got for his birthday a couple years ago. It has a brick that really lights up. Young A had shown me the brick earlier in the morning with great excitement. Of course, by the time we’d spent about three hours building up to the point we’d need it, the light brick got lost. Irretrievably lost. Evaporated into the space where all lost things go. Young A’s interest in the project waned immediately, and he sank into TV for a while. That was no break for me, because he chose an educational show and said, “Maybe you can actually learn something, Mama.” So instead of collapsing in my bed, I was schooled by the Brothers Kratt. Now I know to stay far away from hippos. Useful!

My mood took a turn for the worse, also because Young A was starving and ate lunch at 10:45 a.m., but I could not eat until noon due to my medication timing. Young A seemed a bit listless, but as the day went on his condition improved. When he began behaving in his usual way (e.g. impossibly), we knew he was fine. He returned to school today.

Which would mean I could resume my schedule of self-improvement, right? Sure. Except I’m chaperoning Young A’s field trip this morning! On the one hand, I’m happy to do it, he’s happy I’m doing it, and we’re going to a classical music performance, which is something I’ve done with Young J, but not so much with Young A.

On the other hand, see above. I’ll be busy until 1:30 and the kids come home at 4. That leaves me a few hours today, and all of tomorrow, to cram. I have spent my adult life trying to escape the mantle of procrastination which has cloaked me from childhood. And I still can’t seem to.

To cheer myself up, and to give Young A some satisfaction, I’m wearing this necklace today. Young A made it for me at camp last summer. I keep it on my nightstand, and he always hopes I’ll wear it when I am going out.

We aim to please

There, Young A – you get your wish! I will keep hanging on by my fingernails waiting for mine to come true.

The breakup

fenêtre au point de rupture, by alainalele on Flickr, licensed under Creative Commons

Today I told my therapist, M, that I wouldn’t be coming to see her anymore. It was astonishingly difficult to do that. It made me so sad. But I felt it was a necessary step forward.

Before seeing M, I hadn’t seen a therapist since junior high, and I’d never seen a therapist I actually liked. Until I met her, I had managed many times to write myself out of crises, with what I felt were fairly decent results.

A friend recommended M because of her work with cancer patients. Herself a survivor of lymphoma, M had a lot to reveal to me about what I hesitate to call (because the phrase has been overused to the point of utter banality) “the New Normal.” I could speak freely with her about my darkest and most morbid thoughts, and chances were if she hadn’t had the same thoughts herself, then at the very least she could identify with those thoughts in a way other people simply cannot. She served as a one-person support group for someone like me, who has never been comfortable in groups. She was my teacher. And, she and I both live under a giant sword. From her, I learned how one can actually live like that.

We discovered by chance we had a few things in common in terms of biography, and I really appreciated that M had been a writer and editor before transitioning to psychology. She was able to understand my struggle as a writer, as well. I feel so lucky to have met her, and to have worked with her.

Suddenly this week, I began feeling very protective of my free time. Something to do with so much of it being swallowed up by doctor’s visits. I spent a lot of time – I would even say too much time this week – taking care of others. I let the strategic energy reserve get depleted. I wasn’t able to get to the gym or exercise at all, which was a huge disappointment to me. I’m also feeling very much at sea with my career at the moment – wanting to work, but also wary of committing to work, in the fear of things going like they did last year.

Illness has made me a habituée of change. I certainly made a big one today. It’s not irreversible, of course, but I’m very curious to see how I do on my own.

I’ll keep in touch with M, though. I promised to, and I want to. I can’t help wishing I could throw an enormous protective tarp over the both of us – it would be such a relief. But if that were possible, I wouldn’t have gotten to know M in the first place, and I wouldn’t have gained the knowledge I did from her.

I’m really drained tonight, and feeling sad. I’ve been hiding in my room since we finished dinner. J has been in the living room playing music with the kids, and he just played this song on guitar. It usually makes me cry, and tonight was no exception. I send this beautiful song out to you, M. Thank you for all that you taught me, and for telling me that I managed (though I can’t imagine how) to teach something to you as well.

Safe and ultrasound

Old Paper Texture Relief, by Arrhakis World on Flickr, licensed under Creative Commons

My breasts finally passed muster this morning, after a week of being under suspicion of malfeasance.

I had a mad dash to the imaging place this morning, after J & I got our usual slow start, which was followed by panic and my decision to drop the kids off at school as early as possible (8:30), even though that increased the probability I’d be late for my appointment, which was at 9 in a different neighborhood. The train worked, my legs worked, and I got to the counter at 8:59.

I liked the mammogram tech more today. She was playing oldies and just had a good aura about her. I got the same weird pastie over my nipple as last time, pink designs with a little metal stud in the center. I couldn’t tell whether there was any function to the stud, or just a whimsical addition.

A lot of women complain about mammograms. And having been through quite the rigamarole of imaging over the past couple of years, I must say I agree. In my case the machine has to accommodate a distinct lack of material to be compressed on the plate, which means I’m up cheek to cheek with the machine in what looks like a weird, nonconsensual tango. And then I get to hold my breath.

The sonogram was more comfortable, especially the twenty minutes I was left alone in the dark room lying down and started napping. The actual exam felt kind of weird, digging in deep in places even my bra doesn’t reach. I felt the start of some nausea, actually. And then that was over.

I had to then go back for a couple more mammo images. The tech had changed. No more music. She even forgot to tell me not to breathe, so I reminded myself.

Then I was in the hallway, freezing in my gown for another 20 minutes or so, starting to feel imprisoned in this basement facility with low ceilings, poor HVAC sensors, and more and more women showing up with not enough chairs to seat them.

Then I heard my last name being mangled, and a white man appeared (all the other people working there are women of color). He seemed enormous and very red against the low ceilinged fluorescence.

He took me back to an exam room and I expected the worst. Instead he gave me the best news – the mammogram images were all fine. There was a je ne sais quoi on the sonogram of Lefty, definitely not a mass, so I need to go back in six months for another followup. I’m not going to worry about that.

Now I just wait for that skin biopsy result to come back… but in the meantime, I can stop hating my breasts. And proceed with the twelve other things my phone keeps reminding me to get done today. And drink a beer with dinner tonight.