It’s all a blur

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Vancouver – Even Less So – Shoes on Wires, by Justus Hayes on Flickr, licensed under Creative Commons

It was a longish, shortish kind of day. The kids get out of school at 1 p.m. on Fridays in the winter, due to the early start of Shabbat. So I can’t count on getting much done on Fridays, unless I have every moment from 9 a.m. to 1 p.m. to myself, and even then, it takes motivation.

This morning, I had about a half hour. I dropped the kids off at school, having fought with Young J on the way there about something I later apologized to him for. (Nine year olds tend to appreciate that, and he did.) So I guess I started the day off kind of badly, came home and thought about all of the things I wouldn’t be doing today, and then had to leave to hit two doctors’ appointments back to back and, as it happened, across the street from each other.

First off, I had to check on how my eyes are doing. They have traveled a long road since I was a kid and had the best vision in my family. I didn’t need glasses for distance until high school, and even then, at first I asked my teachers to press harder with the chalk on the board. I was too vain to wear my glasses all the time in college, so I learned to recognize my friends by their clothes, and then someone would screw things up by getting a new coat or something. Then I discovered contacts, and glasses were dead to me for quite a while. Pretty much until last year.

My eyes are just the latest victims of the random side effects caused by my cancer medications, which (as longtime readers will remember with a shudder) have also included severe colitis, and also a weird thickening of the skin of my footsoles. The eye thing has been the most difficult to get a handle on, though, because ocular side effects occurred in only about 1% of patients in the trial. Meaning there is very little knowledge about how to treat these side effects. Dr P and her staff have been immensely helpful with other side effects, but when it comes to the eye stuff, they really don’t have a clue. Dr P said she’s only had one other patient experience something similar to what I have, and it presented totally differently.

When the eye problems were new, I was gung ho about finding the latest medical literature to educate myself and my doctors about it (I found one recent paper, and printed out for the retina specialist I briefly saw). But now – at this point, I’ve been dealing with this crap since last August or September, and I’m just tired of it. I want someone to TAKE CHARGE and fix it.

My vision isn’t bad, necessarily – I was even able to leave the house without glasses the other day, by mistake – but I have this strong need for things to just be all right again. And it’s a slow process. And my ophthalmologist, Dr D, is trying hard to figure it all out, but it’s a tricky situation. Right now, the pressure in my eyes is elevated. This is a result of extended use of steroid eye drops. I have been using steroid eye drops to manage the side effects from my cancer medication (which gave me three cases of iritis before we got it under control). It’s a domino effect which I hope doesn’t keep tipping more dominoes, because I don’t want to imagine what’s next (the drops I use to lower the pressure in my eyes causing temporary blindness, perhaps?). I came home with a new bottle of drops, dark blue cap this time, and a new regimen which decreases the steroid drops even more (even though Dr D was very hesitant to do so).

I also took the time I spent in the waiting room to go through the thick stack of bills from Dr D and figure out if any of them were legit. His assistant called their billing office (which is closed to calls from mere mortals on Fridays) and helped me straighten it all out. My balance of $210 was, in fact, zero. With that mini-victory I walked tall as I strode across the street (well, more like picked my way through paths shoveled in the filthy ice and gaps in parked cars) to Dr A, my dermatologist. I was too early, though, so had about 40 minutes to kill. I hit up Trader Joe’s, which is a rare treat, because it’s in a part of Brooklyn that is too inconvenient to drive to, and the bus there takes too long. Also, Trader Joe’s to me is the sole province of snacks that sound healthy but are really just junk. I went in there determined to buy only ingredients for the quiche I planned to make tonight. I found mushrooms and fresh thyme, but the fact that they didn’t have any frozen pie crusts threw me off the rails. So I wound up with my two quiche ingredients and a bag bulging with potato chips and two boxes of cookies. Yay, me. At least I had the decency not to start eating cookies in the waiting room, or on the subway.

Back at Dr A’s, I waited a bit longer, and watched the unctuous pharma reps come calling. I see them at Dr P’s office all the time, dressed to kill, and always projecting the aura of being both deferential and unyielding. It is always interesting to see who gives them an audience and who doesn’t. I think Dr A gave them three minutes.

I was just at Dr A’s office last week for my body scan. Having metastatic melanoma doesn’t disqualify me from those. If anything, they are even more important now, since another possible side effect of my treatment is – what fun! – possible skin cancers (non-malignant ones) popping up. Last week everything seemed fine. I had no particular concerns. But, Murphy’s Law, the morning after my visit to Dr A, I looked in the mirror and noticed a certain freckle on my forehead. How that one of the approximately two billion freckles on my body asserted itself, I will never know, but looking more closely, I saw it was a freckle-colored mole, with some hairs sprouting out of it. I wondered how I’d missed it. I wondered how Dr A had missed it. And after hesitating for a couple of days, I called for another appointment.

It was nice not to have to don a gown today. The appointment was lightning-fast. Dr A came in, saw what I had, and decided to cut it out, all in the space of about two minutes. I was sitting in the chair, and it jerked up and out in every direction until I was lying down, closing my eyes for the jab of the lidocaine. I did fine. I’ve been through worse at the dentist during a regular cleaning. I felt Dr A’s hands near my forehead, but didn’t even hear a snip or feel any tugging at my skin. I have the tiniest bandage just above my eyebrow. Sudden surgery.

I rushed back to wolf down a slice of pizza and then get the kids. I felt tired, so tired, like I hadn’t slept in years. My legs were leaden, my eyes were tired. When we got home I basically collapsed for several hours. It was nothing physiological, I don’t think. It’s just… The Weight. Now I have two unknowns pending – my mammogram/sonogram re-do next Monday, and now, waiting for the results of this skin biopsy. And then of course I need to schedule my next MRI…

But first, a weekend arrives, and just in time. A hectic one, but one that includes some time off from the kids, which, particularly at this point in Young A’s developmental weirdness (random and shrill outbursts at the slightest thing), will be welcome. Hope you have a good one too.

Melting

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retreat, by Robert S. Donovan on Flickr, licensed under Creative Commons

The mountains are receding from the curbs. We can see the car again. When we left the house today we were delighted at how nice and clean the car looked… until, on closer inspection, we saw it had been bombed by birds who couldn’t wait to crap on the snow-washed cars. So it is with snow in the city. Just a few days later there’s nothing unspoiled about it. Could this have been it for the winter? The part of me that just invested in new winter boots for the boys hopes not.

Sorry if I’ve left anyone hanging (and I think I may have). I didn’t have that second mammogram on Monday after all, because an early morning visit to my doctor found me in possession of strep throat, and thus I was a public health hazard until I’d been on antibiotics for 24 hours. Mammogram and sonogram rematch next Monday. I’ve heard from enough women who have had false alarms on their mammograms that not only am I not worried, I’m actually kind of pissed off that women don’t have access to a better diagnostic tool for this. Ridiculous!

I was grateful not to need to leave the house again on Monday. I came home, got back in bed, and thought about sleeping. I didn’t actually sleep until late in the afternoon, because there was something thrilling about having a excuse to just lie in bed. I did get up to start some chicken soup, and make some tea, but I truly accomplished nothing else. It has been a week of low expectations.

Today was better. J was around. We had ramen for lunch, and then I headed over to return some clothes and get the boys some new clothes. Young J’s size 10 pajamas are short on him (he only just turned 9). I got him a few size 12’s. And Young A seems to be encased like a sausage in his size 6 PJ’s (he turns six next month). But we’ve got plenty of hand-me-downs for him. I also bought a mirror for our bedroom, to replace one I displaced with my new desk setup. This one hangs by hooks over our bedroom door. Which hopefully will not get slammed as often as the boys’ bedroom door. We’ve hung some artwork recently and we’re pretty tight for wall space, so mirrors have to be as unobtrusive as possible.

Tonight I proposed doing a joint project with a friend, and I’m pretty excited about it. I don’t want to say too much and jinx it. But it’s something I’ve had on the back burner for ages, and the time seems right. Let’s hope so!

I’ll leave you with a lovely song about another kind of melting which takes place in the other hemisphere, where the people are melting right now, not snow.

Telegram from sickbed

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A white world

SNOW FELL. STOP. MUCH, MUCH SNOW. STOP. WE SLEDDED DURING THE BLIZZARD. STOP. COULD BE THE REASON I SUCCUMBED TO SOME CRUD TODAY. STOP. DAMNIT. EXCLAMATION POINT. TOMORROW I REPORT TO MY DOCTOR AT 8 A.M. FOR STREP TEST. STOP. THINKING OF LEAVING THE HOUSE MAKES ME CRY. STOP. WISH I HAD A CHAUFFEUR ON CALL FOR ONE DAY. STOP. I WILL THEN TRUDGE TO SUBWAY AND WALK TO IMAGING CENTER FOR THE MAMMOGRAM REMATCH AT 12:30. STOP. I MUST HAVE DONE SOMETHING VERY WRONG TO MERIT THIS. STOP.

AND YET I BAKED BREAD TODAY. STOP. IT WAS GOOD. STOP. END TRANSMISSION.

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Bread. No circus, please.

PS: Thanks to my friend J, who I helped with some background research, I learned last week about the Carrington Event of 1859, a massive solar storm. During the height of it, the air was so charged with electricity, telegraph operators noticed their machines stopped working, so they cut power off and sent their transmissions through the charged air, and it worked. Come the next solar storm, I wonder if we’ll be able to text that way?

Disaster preparedness

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Risk, by K.G.Hawes on Flickr, licensed under Creative Commons

I was up early today. Young A, just off the sick list since he started antibiotics for strep throat, came in before 7 to let me know he’d slept great. He’s thoughtful that way. It so happened it was a welcome wakeup, for a change, because I had an early appointment today, for a mammogram and (because my regular doctor felt it would be a good idea), a breast sonogram too. In my wisdom I had scheduled it for 8:15 a.m. I felt bad leaving J in the lurch, but at least today there was one less kid to get out the door for school, and Young J had hot lunch today.

I’d spent exactly zero time meditating on the test today and the results. I was expecting to get a letter a few weeks from now, telling me all was well. I was so overzealous last night in wanting my nightstand clear of clutter that I clean forgot to put my glasses on before leaving the house. My vision isn’t exactly poor without glasses, but everything was much fuzzier. Perhaps even more pleasant, actually, except for the walk in 12 degrees to and from the train. The mammogram technician spoke in a near-whisper. I wondered to myself what her job must be like, maneuvering breasts onto trays all day. The sonogram was lying down in a dim room. I might have taken a nap, save for the gross gel slathered all over the areas of study.

I came home, showered to get the ultrasound gel off me, and spent the day with Young A. This was his second sick day at home, a day during which he would have been fine at school, but he hadn’t been on antibiotics for 24 hours by the start of the school day. He was feeling fine and basking in my attention. I took him to movie, which I think for Young A was almost incidental to the fact that we rode the subway there (front car) and back (rear car). We were the only people in the theater at 10:45 a.m on a Tuesday, save for a coughing, adult man who made the questionable choice of going to see a childrens’ movie that was roundly reviled by critics, but which Young J saw this weekend and enjoyed (although, he noted, it lacked “a message”).

While Young A was typing on my computer in the living room (proof of my need for another workspace in the bedroom), I was lying down. Scans and tests are always draining. I haven’t felt super energetic yet in 2016.  I checked my email and saw I had a message on my doctor’s portal. I logged on (why, when this is supposed to be so high-tech, does it just feel clunky to have to remember my password for it each time?) and found this note:

hi deborah, your mammo/sono showed a shadow in your Left breast that needs another sonogram for clarification. They also needed to repeat a mammographic view of the R breast.

It’s not the end of the world, I know. And it’s not like anything invasive has been proposed, so far. It’s just… shit, fuck, and goddamnit. For starters. Just yesterday I was at the pediatrician with Young A and she asked me how I was doing (which she should know better than to do when I’m with my kid) and I mentioned offhand, tongue-in-cheek, that I’d had to have some touch-up brain surgery last November. “You’re so stoic about this,” she said. As though there is any other way to be, around young kids. Today, Young A momentarily stopped my heart when he said, “What would it be like if I didn’t have a mother? If I only had a dad?” I cautiously inquired the source of this, and it turned out to be entirely taken from the plot of a book series he’s been reading, in which one of the characters loses her mother at birth. (Whew, I breathed.)

It’s just so hard to know anymore, where some little hiccup like this will lead me. Back to my melanoma surgeon, who also handles breast cancer? Merely an uptick in the frequency of my mammograms? An all-kale diet? I’d be wise to strive towards the last. Predictably, in the face of bad news, I ate very badly tonight, raiding the fridge for anything crunchy that wasn’t a vegetable, anything salty, fatty. And for dessert, the worst I could do (because we didn’t have anything worse) was raspberry sorbet. I dumped some chocolate syrup on it and made it work.

So that’s one defense mechanism back in place. Another, which I’ve noticed and which I seem to keep developing and refining despite how sad it makes me, is a mental game called, If I Had to Leave Now. It’s not something I decide to play, it’s more like it plays me.

If I had to leave now, Young J is working on bar chords and can play a few bars of “Space Oddity.” If I had to leave now, Young A is no longer hitting his brother frequently, and is playing the piano quite beautifully. If I had to leave now, J is young and handsome and kind enough to find someone else. If I had to leave now, maybe a writer friend would take pity on me and finish the essays I started. Maybe someone else would find my journals and decide they were best as kindling.

I’m happy that I don’t have to leave. That there is no way to “win” this game. That my mind doesn’t play it 24 hours a day. I will have to get through the days until Monday, though. I may need to take up Words With Friends.

Reorg

 

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The Old Fire Station, Alresford, Hampshire, by Mike Cattell on Flickr, licensed under Creative Commons

I’m making some New Year’s resolutions after the fact, which may be the best time to make them – when you get a sense of what you’re interested in working on, what you have energy for, what will take you to the next stage.

For me it involved finally accepting that if I’m going to get writing done in the volume and of the quality I’d like to be, it must be acknowledged that my “desk” is not the place that will happen. My “desk” is in the middle of the living room, inches from near-constant chaos. The “desk” is just a shelf deep enough to accommodate a computer keyboard. The kids have discovered they like using my desktop computer to type stories, or to get lost on Google Street View (we still say No to Minecraft). While that machine may be good for those things, and as a home to my music on iTunes and as the archive of photographic evidence of our family, and as home base when I have a translation job, it is not a good place to Compose. It is not even a good place to decompose.

When I first moved to New York, my parents brought me this bookcase:

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Tall boy

It was a floor model from IKEA. They weren’t going to sell that finish anymore, I think. I already had two larger, functional bookshelves I’d bought myself when I lived in Michigan. They were totally hideous. So I stashed those in my bedroom, and this became the “display” bookcase. I organized books in it by color, stacked literary magazines in it, and tucked other nonprint items in among them. It was probably the start of my individual consciousness about things not just being functional but also looking nice. (I’d never really had to think about that before, because I grew up surrounded by teak Danish modern furniture, which – other than clutter – was the prevailing aesthetic in my house.)

In the evenings, I’d sit in my sky blue easy chair (also from IKEA, but it had belonged to my grandparents) next to my bookshelf and read, or write, next to a phenomenon I still can’t believe was mine, in a city where people claw and scratch for every square inch:  a ten-foot long window, with an unobstructed view of the Hudson River. Sunsets every night. Tankers and barges floating by, and sometimes, on holidays, tall ships. I kind of knew how good I had it, and I surely know now. Our view out the back windows today is quiet and verdant, in season, but largely dominated by an above-ground eyesore swimming pool that occupies our neighbors’ entire backyard and is used once a year, if at all.

Time passed, and we moved to Brooklyn, and the bookcase now lived in our bedroom. We hadn’t quite been in Brooklyn a year when Young J joined us, and in those bleary-eyed newborn weeks, the bedroom became the most important room in the house. Greeting cards, tubes of lanolin, nursing pads, breast pump parts, burp cloths – suddenly, these became the residents of the bookshelf. The apartment, bit by bit, was overrun. Plastic baby gates obscured the TV set, so we stopped watching TV for a year or so. The teak Danish modern furniture I’d been lucky enough to inherit became burdensome or perilous, and we sold it. This bookcase stood its ground, eventually becoming home to baby items again when Young A came along. It held the annoying kiddie trinkets which were seized, to be returned after a specific period of time, but which were forgotten instead. It held my Cancer Notebook, where I first began chronicling my melanoma, as a private journal, because I thought it was going to be a brief episode. The bookcase filled with get well cards. It held dozens of actual books as well. Books I had read, was in the middle of reading, meant to read – the latter category being the most populous. (My attention span has atrophied significantly in the past year-plus.)

We began working with an organizer last year, and she singled out the bookcase for special derision (good-natured derision, but still, very effective). I began to resent the thing. It was the first thing I’d see when walking into my bedroom, which has risen to prominence again in my illness, as a safe haven. And it was messy. It wasn’t going to be enough just to empty it, though. I began feeling strongly that the shelf just needed to go. And when the urge became strong enough, I did what I hadn’t managed to in years. I went through the shelf, unsentimentally discarding a good 65% of its non-book contents. When J went out one night for a couple of hours, I cleared everything off, and when he returned, around 10 p.m., we walked the thing downstairs to the curb. I hoped the whole next day that I’d see someone had taken it, but it was simply too heavy to just haul off on a whim. The following morning, trash day, it was gone. I felt just a molecule bereft, but not remorseful.

Last week, J and I spent some quality time at IKEA. Most of the time was spent discussing new sinks for the bathrooms, but we also decided what we’d put in the space the bookcase left. Our organizer not only derides our propensity for hoarding (though she assures us we are not, in fact, hoarders) – she has also helped us build a vision of what we’d like for ourselves, in the very limited space available. She imagined a small desk in our bedroom, replacing the bookcase, where I could sit to write, far from the madding crowd of LEGO people and wooden train tracks and J watching basketball on his computer.

Thanks to her vision, and to my finally deciding the time had come, and thanks most of all to J, for taking the better part of his day off to make it happen, and for being a genius with a level and a drill, the vision is reality. I’m writing to you from my new desk. I could stay here all night.

“I’m happy, hope you’re happy too.”

I can’t claim a lifetime of stalwart Bowie fandom. Somehow, even though my brother U. decided to introduce me to a Brian Eno album at a very early age (four?), he skipped the Bowie lesson. My other brother, G., picked up the slack, but he wasn’t a huge fan, I don’t think.

No one in our house actually owned a Bowie album until I bought Let’s Dance when I was in sixth grade. It was the second album I’d bought, ever (the first was Men At Work, whose song “Overkill” I was aiming to write about here until current events superseded that post).

I didn’t just own the album, I inhabited it. Turned it upside down and inside out and tried to figure out who all the personnel involved were. We were so information-poor back then, and we didn’t even know it. I did buy a Let’s Dance poster, hanging it, as I told J, at a very 80’s diagonal on the wall of my room.

I’m tired tonight. Something about waking up to very sad news and bearing it all day. I was a mess at breakfast, playing song after song for the kids. And I’ve been working some more on a long-overdue essay (overdue only in my mind, of course) and it’s giving me a hard time, like my brain is not yielding something important. So I’m not going on at my usual length.

Facebook turned out to be a good place to mourn this loss, to discover new and interesting video clips and laughs. It was a digital wake. Also offering up cool and unexpected tidbits, such as my mom actually knowing who David Bowie was. Or such as my neighbor from across the street I grew up on, who comes from what seemed to us a very straight-laced military family, posting to say that Bowie was one of his first concerts in the late 70s.

I was almost late to an important meeting at school, to reauthorize Young J’s classroom therapies, because after I got home from the gym I couldn’t tear myself from YouTube. So much music, over so many years. While waiting to go in to the meeting, I saw one of Young A’s teachers, a Bowie fan, on her lunch break. We hugged.

I’m furious it was cancer, of course I am. We may not find out what type of cancer. It doesn’t actually matter. He was felled by the same thing that has attacked me. It is hard not to feel some kinship. He was also loved deeply, and I think I know how it feels to be the recipient of such love. In the end, I imagine, nothing else matters but that.

Young A and I went to pick up Young J after his guitar lesson. I had told Young J to bring up Bowie in class, and I wondered if the teacher had done anything. When we got there, we saw the chords for “Space Oddity” up on the board. The teacher said, “There really wasn’t anything else we could have done, today.” I almost started crying again.

Salt

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150215-fence-posts-great-salt-lake.jpg, by r. nial bradshaw on Flickr, licensed under Creative Commons

I went to see Dr P this morning. It was one of those days where the waiting room is emphatically not empty, so I had a while to wait, and therefore had to remind myself of my waiting room policy – NO LOOKING AROUND. I did pretty well (except for the stinkeye I aimed at Wife of Wheelchair-Bound Patient, who took a phone call that was quite long and just a tad too loud).

B, my phlebotomist, greeted me warmly. He hasn’t started classes yet so he’s not rushing around as much as usual. All these people to check in with. Medical Assistant N had a good flight to Florida (he’d been nervous to fly because it was right after San Bernardino) and his mom and sister have been staying with him for two weeks so he’s going a little nuts.  Nurse Practitioner R not back at work yet, still on maternity leave. (Dr P did show me photos of the baby, however.) Got a good hug from Nurse Practitioner K on my way out. These are my people. My cancer people. Funny, I have never tried to cultivate any sort of relationship with the women at the front desk. They don’t put out very friendly vibes.

So that left Dr P. I wasn’t feeling as chatty today, because I’ve been worried about the dizzy spells I get when I go to stand up. My bloodwork looked fine, so that was a relief. My blood pressure wasn’t all that low, but Dr P feels that this may be what is causing the diziness, and that it’s a symptom of steroid withdrawal. Maybe. I don’t know. It didn’t happen last time! Anyhow, the answer, according to Dr P, is to eat more salt. Not a great goal to have when you’re also preparing to lose weight.

I had promised myself a few weeks ago that I’d ask Dr P the Big Question today. And when the seated portion of our visit was wrapping up, before the physical exam, I did. Except I started crying before I could even get the words out.

It may be easy for me to joke about my situation here, and in person, and even with my caregivers, but today I wanted to take things seriously. After all, last April I experienced the highest high and lowest low within a 24 hour period. You don’t go through something like that without being sort of traumatized. (It’s no accident that the therapist I have wound up with also works with people suffering from PTSD.)

I asked Dr P how I was doing. What things look like and whether she could even hazard a guess as to how things might go in the future. She said things look really, really good right now, and the fact that my bloodwork is good and the results of the gamma knife surgery were so good means she thinks my chances are excellent. Then, to my relief, she repeated something another patient had said to her today: “So doc, does that mean I can buy green bananas?” (As in, will I still be around when they ripen?) I loved that. I’ll return to it often. It’s as good a metric as any.

After getting some lunch, I trudged uphill on 34th St in the bitter cold to return some clothes. My eardrums actually hurt from the cold. I was planning to shop for clothes for myself, but only half-heartedly, because I don’t like buying clothes when I’m at a weight I consider temporary. But I found a store with a going out of business sale, everything half off. So I got a winter hat for Young A, mittens for Young J, and a bunch of tops for me, and a summer dress that intrigued me but is most definitely not my size. It is an attainable size, so I call it my aspirational dress, and if it doesn’t fit by summer… it only cost me $10, so I can afford to give it away.

I can buy green bananas and aspirational dresses and make future plans. Of course, I’d also like to find a damn job already, but one must start somewhere.