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.)
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.
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.
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.
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.
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.
(In which I decide I am getting a little better at not telling everyone I have cancer, but then decide maybe sometimes it can be helpful.)
We grocery shop at a food coop that has been ridiculed the world over for its insistence on rules and the monthly work requirement that seems to be impossible for some to adhere to. It saves us so much money that the work requirement hasn’t been a burden for us (particularly since I’ve been on disability leave, and J has had caregiver leave, so we haven’t actually worked there in a while, just shopped).
One of the oddest jobs at the coop is cart walker. These are people wearing reflective orange vests who stand around outside the coop waiting for people coming out with carts. They then accompany you home with the cart (if you live in the official coop radius – we happen to live on the last block of it) and walk the cart back to the store for you.
Sometimes it’s a meditative, silent walk (except for when you curse as the ornery cart hits a sidewalk bump) and the walker trails behind you, listening to music or talking on their phone. Sometimes you get a talky walker. I try to figure out what kind of walk it will be in the first five minutes. Sometimes I am surprised. (Once, I spent the entire 12 minute walk arguing with a walker who, on his way back to pick up another shopper, had stopped down the block – in easy sight of the coop – chatting with a friend for ten minutes while a line of people waiting for walkers piled higher and higher. It took most of the walk home for him to apologize and acknowledge he’d been an asshole. Yes, at these times the caricature of the food coop seems more like a photograph.)
Once, a few weeks ago, possibly before or around the time I learned my lesson about cancer talk, I was coming back from the coop with a walker and mentioned my illness. He began telling me about his mother’s battle with cancer and also with the insurance company – she was a hotel worker and didn’t have great coverage so they nickeled and dimed every little thing and he, her son, educated himself and became her advocate, arguing when the doctors either didn’t mention or refused to perform certain tests or procedures.
I felt good about my conversation with this walker, and I told him he’d done such an important thing for his mother, even with the negative outcome. So I was willing to let it slide when he began telling me to seek alternative treatments or change my diet. But he mentioned guided visualization, and even though it was one of those things that sound kind of obvious (so I said yes, I’d heard of it), I honestly hadn’t known what it was about.
Tonight I finally got around to Googling it and just went with the first source I found (overriding my librarian tendencies). Reading through this overview (which all seemed to be quoted from the same book, so it was like guided imagery Cliff’s Notes), I realized that I’ve been doing exactly that for a long, long time – to deal with insomnia (have forgotten to try it lately) or (in elementary and middle school) to imagine what kissing some boy or other would be like. Visualization seemed exciting to me, like something I could get started on right away! That is, after studying the diagrams in that Wall Street Journal story a few dozen more times in order to understand exactly what needs to happen on a cellular level.
My walker today wanted to talk at length about the evils of plastic. I didn’t disagree with her entirely, but I was briefly tempted to shut her up with cancer. I overcame the urge. She eventually moved on to cornbread, and I knew we were safe.
I suppose one measure of self-absorption is how soon after your birthday you return to normal life, to stuff you need to do and can’t get out of by saying it’s your birthday and you don’t feel like it. (Tried that yesterday but in our rush to leave for my birthday dinner, it became apparent I’d need to fold some laundry after all.)
The kids were out in Queens for the night. J and I entertained the many possibilities the evening offered. We could… eat! See a movie! Drink! Ultimately we only had enough energy for the eating (which was fabulous) and one glass of sangria each. We aren’t heavy drinkers and we’re out of practice too. We got back to the neighborhood and considered visiting our favorite bartender at the Latin restaurant down the block, who makes fabulous mojitos, but we admitted to each other we were just too tired.
There was also the matter of two or maybe three helicopters flying low over the neighborhood, shining bright searchlights in the direction of what we figured out was a march related to the Eric Garner and Michael Brown killings. Instead of heading home we walked down the avenue until we saw the cordon of flashing lights, and arrived in time to see a group of a few hundred (or more) people head down a side street of our neighborhood. We followed the marchers (staying on the sidewalk) and then watched an endless procession of paddy wagons behind them (from the reports I read, arrests yesterday, at a march of perhaps more than 40,000 people, were minimal). I learned today that they marched all the way to a housing project where yet another unarmed man was recently fatally shot in a stairwell by a police officer, for being in the wrong place at the wrong time. That was a ten mile march.
I was sorry once again not to be able to join. I was inspired once again by the refusal to let this injustice get swept under the rug.
I was grateful to think of something other than myself, my age, and my current health predicament. And sort of relieved that my self-absorption has its distinct limits.
We went home. It was quite early. A party raged upstairs, but we hit the hay earlier than usual. It was just enough birthday for me.
I’m 43 today. I don’t have any mental picture or scrawled extrapolation of what I once imagined myself like at 43, because as I’ve said here before, I’m not much of a long-range planner. When I was ten years old and visited New York City for the first time (graffiti’d trains and all) I decided I would live here some day. And now I’ve been living here for – incredibly – almost 17 years. After all that time, I have yet to generate another life dream that is remotely attainable.
If 4 a.m. is “the hour of 30 year olds,” according to Wisława Szymborska, what is the hour of 43 year olds? I’ll venture to say… maybe 5:45 a.m. Just too early for waking up without great pain, though you can remember when you used to get up at all hours for babies, or once in a great while, pre-kids, to run a road race. (My running life – now that seems like ancient history.)
Last night I was up at 4:15 and it took me a while to get back to sleep (if I even managed). I listened to the upstairs neighbor snoring. I wondered if Land’s End was going to drop their prices any more before I buy Young A some new snow pants. I tried to think of nice things like waking up to breakfast on a tray. I tried to think of what I’d write in my “birthday manifesto,” something I have been writing in my journal as long as I can remember.
But all of these things were eclipsed by the unknowable (until January 5th) thing, which is hovering over me like a giant anvil that could squash me flat like a cartoon character. It doesn’t seem to be there during the day. It comes at night, when all is quiet except for snores and stray wails of sirens and the intermittent blast of the ferry horn. I wouldn’t call it fear, sadness, or anger I feel, because there’s this sense of not knowing what I will need to respond to when I get the news. The blank to be filled in. An anxious blank.
But that’s over for today. From the kitchen I hear J puttering, the cheerful noises of impending breakfast, Young A having senseless tantrums and (maybe) helping a little, Young J reading aloud from Tintin with great expressiveness. In this waking world nothing is amiss, and I have to go with that.