And don’t let the door hit you

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Zwee's Boots, by Kirsty Hall on Flickr, licensed under Creative Commons

I know it’s not just me. Pretty much everyone this year, it seems, had significant setbacks, losses, or at the very least, a number of things to be enraged about.

On our drive south today, even the last hours of cursed 2014 sunlight conspired against me, blinding me now here, now there as I followed the curves of the highway.

On the drive, I asked Young J what his resolution was, after explaining what that meant. He said, “Draw more,” and took up his sketchpad. J said, write and record more songs. Young A was sleeping at the time, and I think he could probably use more sleep, so we’ll call that his.

Me? One big resolution, of course. And a number of others that seem like corollaries of it. But really, if nothing else happens for me in 2015 beyond getting through it cancer-free, that will be enough for me. Dayenu.

Happy new calendar year. I hope you have fun booting the old year into the street. (I will literally be wearing boots.)

Tick tick

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Baggage Claim No. 6/Taiwan Taoyuan International Airport (TPE), by See-ming Lee on Flickr, licensed under Creative Commons

I’m wondering if this is the best or worst time of year to be anxiously awaiting further news on my condition. On the plus side, there’s food! Drink! And general dopiness on parade!

I’ve been a little bit unwell for a couple weeks – not cancer-related, but maybe a little lagniappe from the steroids. Despite having (over-?) shared here about medical stuff,  I won’t be specific. Hopefully I will come out of it soon, because the discomfort and associated anxiety has been getting a little too familiar.

I went for a walk around the park loop today, when it was unseasonably warm and so sunny I remembered my sunglasses had broken and I haven’t replaced them, because I don’t set foot in stores this time of year. I was enjoying the solitude and listening to music as I watched the park fill with eager exercisers (myself included) trying to compensate for holiday excesses.

As I went along I suddenly heard a voice behind me say, “I’m gonna whack you on your butt so you better be you.” Then, a whack on my butt. It was a neighborhood friend, G, jogging past, and I was so surprised I couldn’t manage a word, but burst out laughing as she turned around. (G is one of only about two or three people I know who could get away with something like that.) It made my morning.

Later on, we took the kids to the park for some ball playing. Without my sunglasses the sun was just blinding, and my earlier exercise had left me feeling like I was wearing lead shoes. I tried playing for a while, but started feeling uncomfortable and had to sit down on a bench. Young A tried to keep me company, but the allure of a day to run around outdoors was too great.

Watching my family function without me reminded me of an outing we’d taken last year, when I was first diagnosed with melanoma, hadn’t yet had surgery, and was walking around with the knowledge of something lethal lurking just under the skin – and it was on my back, so I felt like it was always kind of pursuing me.

That morning, early spring, we’d gone to a sculpture park in another part of the city, and as J and the kids walked there from the car I dropped back and watched them from a distance, trying to assess how they’d do without me. Trying to prepare myself for not being part of that unit anymore. I wasn’t upset, it felt more practical than anything, this way of thinking. A means of self-preservation.

And indeed, since I first got sick, I do have moments where I just need to withdraw and let things happen without me. Sometimes there is the excuse of physical pain or discomfort. But sometimes, it’s simply a need to not engage, to not participate, to let the galaxy swirl as I watch from a distance. I haven’t verbalized this to J before, but I think he gets it. (Do you, honey?)

The coming week will be about distraction, distraction and more distraction. The kids are off school, we’ll take a trip to see my family, and when we’re back we’ll have Young J’s rescheduled birthday party.

By the time I get to my CT scan, a week from Monday, I’ll be exhausted, more than ready to lie down and have someone else tell me how and when to breathe.

Stuck

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Red jelly, by Christian Guthier on Flickr, licensed under Creative Commons

Third day in a row with a sick Young J at home (he would otherwise have been in school through today, the perk of a Jewish day school). Today his fever is gone, and his voice just came back while he was eating lunch. He got so used to whispering, though, he keeps forgetting he can talk, and then gets mock-annoyed with himself.

We cleaned up the horse farm we built yesterday, and started building a natural history museum. Young J graciously let us sit at the table to build (J and I are finding it harder and harder to sit on the floor as we age). He always wants to start with the building (and then we never get around to the exhibits) but today he agreed to build a dinosaur first. By lunchtime we had the rudiments of a museum in place (and a Lego minifigure in a wheelchair testing the accessibility of the place).

It’s hard not to feel a little trapped, after three days at home. I wanted this to be the “fun” sick day where we could go on an outing, but I think Young J still needs to recover some more, his coughing fits need to abate, and of course it’s pissing rain outside.

Today I was scheduled to get a haircut, but had to reschedule, and the nearest date I could find was January 7. That’s the day I get the results of my scan. I decided on a late afternoon appointment, to accommodate my doctor’s appointment, lunch with J after, and/or time to have a drink and absorb whatever news I get. I like the idea of having something else to do that day, I just hope I’m up for it when the time comes.

Longer days

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Icicle roof, by Windgeist on Flickr, licensed under Creative Commons

The other evening I asked the kids if they like it when it gets dark super early. “YES!” they replied, as if I’d proposed going for ice cream. I clarified the question. They changed their answer: “NOOOOO!” I then delivered the happy winter solstice news to them.

Sunday was hard. We’d planned a theater outing for Young J’s birthday, to see some Chinese acrobats, but he woke up with 102.5 fever. We had to cancel but the theater had no mercy, and wouldn’t refund the tickets, so now we’re left hanging to see if any seats free up for an upcoming performance, but given the time of year, it doesn’t look too good.

I was hormonally despondent about our plans and requested that J bring me a piece of leftover birthday cake to eat in bed. It worked. After I ate it and showered I saw the beauty of a day to spend inside, hunkered down with Young J’s birthday gifts

Young J has lost his voice, and he’s so pale and feverish I am horrified to think of having yelled at him for anything, ever. The ibuprofen has given him a bunch of nosebleeds. He isn’t good at being an invalid, and has to be coaxed to stay in bed. The laryngitis, though, is probably the most frustrating thing, for both of us. When you take a kid who, under normal, healthy circumstances is minimally responsive when you ask him a question, and you take away his voice, things get even more frustrating. Especially when you are walking down the street in the rain and asking him a question and waiting for an answer, and he has his hood up, obscuring his peripheral vision and any nod of his head.

How quickly the tables turned from being the one receiving care (I can’t say I was a much easier patient – I know for a fact I wasn’t!) to being the caregiver. I’ll be happy if things can stay this way for good.

A letter to Young J

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Manu Script, by Kevin Walsh on Flickr, licensed under Creative Commons

Dear Young J,

You’re awake now. You’re awake and you’re eight years old today. We carefully hung the birthday banner we bought for your first birthday (never imagining it would last this long) and left your gift and several cards on the table for you last night. You and Young A woke up and apparently did not see them, because you headed back to your room and are reading a book aloud in your expressive way, voice rising and falling depending on what’s required. (Later, you explained you did see them, but you really wanted to read a book to Young A first.)

You’re eight. I can remember being eight, I think. Or is it that I can remember being not-four, not a baby, not impeded in my discoveries by the lack of certain needed faculties?

In a child development book I got from the library, the notion of eight year olds being able to walk home from places by themselves is breezily mentioned. I wish that were our reality, because I would love for you to be that free to explore. And – I can’t help it – I wish I could be a fly on the wall as you walk down the street alone and encounter the world without any of my filters affecting you. Where would you go first? Who and what would you notice?

I’ve decided you can handle a bit more reality lately. I told you about the Eric Garner protests and the reason behind them. You are researching the Burj Khalifa so I told you that it (like the pyramids in Egypt) was probably built by laborers who are treated like slaves, because that’s how things are done in Dubai. J disagrees with these doses of reality, but I’m not exactly laying the full trip on you. You don’t know yet about the Shoah. I haven’t told you about Newtown. Or a million other things.

You recently defended something you did wrong by saying you have ADHD and couldn’t help it. That worried me a lot. The inattentiveness wearies me a lot. I wish I could spend a day inside your skin and feel how hard you have to work at getting through things like a school day. It must be exhausting. Perhaps if I could have that experience, I would have the patience with you that your teachers and therapists do. (But they don’t have to get you out of the house on time, or pull you out of a deep, deep reading stupor, night after night, to get you to come to the dinner table.)

It’s so hard to extrapolate and envision the person you’ll be at 18. You seem excited about being an adult. You have a career mapped out (Staten Island Ferry pilot) and when given a chance you like constructing things that adults have. At a friend’s birthday last weekend, when the other kids were building sea creatures and princesses out of clay, you made a small man and some of his apartment’s furnishings – a bed, nightstand, lamp, easy chair, all in microscale. That whole world fit in the palm of my hand. It was fragile (the man was already missing an arm when we came to pick you up), but beautiful.

I’m so sorry I got sick last month. I know it was hard on you, and I know I was hard on you, on the rare occasions I engaged with you. Luckily you prove to me every day that you are resilient, that you are capable of empathy (perhaps not yet at the drop of a hat, but eventually), and that your memory preserves happy moments and (hopefully) discards the rest.

The other night, while Young A was in the bath, you proposed a game. You said we would reach in the giant box of Playmobil stuff and choose ten objects at random and make a story about them. “And the point of the game is to laugh really hard,” you added. I was tired, but it was hard not to get on board with that. So a woman sat in the speedboat talking on the phone, and a man crowned himself the king of cabbage and his son was the prince of apple juice, and I can’t remember what happened next but we laughed. You laughed. The sweetest music.

Happy birthday! Thank you for teaching me everything I know about being a mom.

Love,
Mama

Non-stop

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The Veritas League and the Quest for the Tome of Tangiers: Frantic, by Michael Salerno on Flickr, licensed under Creative Commons

I’m back in operation. That is, back to my habitual frenzy of activity. Back to composing to-do lists before I collapse, exhausted, at night.

I’m not feeling particularly energetic, but I am exercising regularly again, and I think that’s making all the difference. Not in my waistline, per se, since we are smack in the middle of Birthday Season (which in our family runs from December to March – oof), and also Chanukah and then we’ll probably carry the over-indulgence into New Year’s. But it does give a center to my day, to plan it around exercise. Exercise as fulcrum.

I wish I also had to carve out time to apply to jobs, but there seem to be fewer and fewer I am qualified for. My dinosaur status is all but confirmed. On the other hand, yesterday in a meeting concerning a volunteer project I’m doing at the kids’ school, I found myself suggesting a techie kind of project that I’d need to learn a bunch of new skills in order to actually do. I’m kind of excited about it, and hope it works out.

In the meantime my constant jobs of meal planner, party planner, custodian of random crap and rememberer of infinitesimal details (e.g. Young J to wear blue and white to school on Thurs) are secure. No one’s fighting me for those.

Perhaps if I can keep up this crazy pace the time between now and my scan and the results will fly by. I’ll be exhausted but you can deal with good news when you’re exhausted, right?

Last night at some point I woke up and tried a little guided visualization before falling back asleep. It was a little cartoonish, cells shooting at the tumors with a “pew! pew!” sound effect, and groaning from the tumors. Does that count? It made me smile, anyway.