I’m recuperating from my big day of scans. Despite the relative non-invasiveness of these procedures, the very fact of having them done is enough to sap me of all energy. I had the foresight to tell J I didn’t think he’d be able to make his basketball game tonight. (I felt badly, but not as bad as if I’d said yes and then made him cancel.) He moved the car, made dinner, put the kids to bed, and went grocery shopping instead. Good man.

This morning it took me forever to get moving. I stayed in bed until the last possible minute, then had to rush. I wasn’t nervous, mostly just annoyed that I had to start the week this way, now that the kids were back in school and the house was quiet and there was no need to plan fun outings.

When I got off the train at 33rd Street, I had to face the steep stairs up to the sidewalk, or, as I have come to think of them, El Capitán. Today I actually managed to fly up them without difficulty, but failed to catch a crosstown bus to the hospital, so I then had to take a long walk in the biting cold.

Everything in the hospital seems like a vector of disease transmission, confirmed the one time I made the mistake of using the restroom on the lobby level. The proliferation of hand sanitizer bottles on every surface is no comfort to me. The waiting area for imaging is permanently jammed, so much so they issue you a pager, just like the Cheesecake Factory. The wait is just long enough to be irritating, but not long enough to make you feel worthless. There is no Oriental Chicken Salad on offer.

Today they seemed to be enforcing separate men’s and women’s areas in the gowned waiting room, for which I was grateful. Something about seeing mens’ naked legs with just dress socks and shoes makes me profoundly sad. I did not need to shed my pants, since I was wearing my scan-friendly yoga pants. I wish more people thought through what they wear when they’re having a scan done. It isn’t that hard to plan ahead!

I got settled in my gown and started in on my bottle of berry-flavored barium sulfate. You’re supposed to drink a cup every ten minutes, but I’m such an impatient overachiever, I usually finish it much sooner than that. It’s so vile the only way I can deal with it is by making it disappear as quickly as possible. Somewhere in the middle of drinking the guy called me in to place my IV. I didn’t cry today and didn’t even flinch that much. I’ve been through worse, at this point. I mean, I’m not about to watch or anything, but I can handle it.

IV in place, I went back to the waiting room, where a most irritating man had taken up residence on the women’s side, along with his wife. He was annoying the crap out of me, beginning with when he came in and they gave him a locker key and then he totally forgot he had one and was bothering me about where to put his clothes, and his gown was gaping open and DUDE FIND A NURSE TO HELP YOU. With his wife there he was a little more relaxed but they were talking the whole time. When they called him in for his scan, his wife stood in the middle of the hallway looking lost. I thought she might try to go in the CT room with him. Another annoying thing: People who do not know the rules, and do not seem to care to figure them out. (Yes, I was using my phone in the gowned waiting area, in defiance of posted signs, but I wasn’t: a) speaking to anyone on it, or b) taking photos of anyone in a gown.)

The CT was fine, not difficult, and they tell you when to breathe. I listen to the prompts (a man’s voice with lots of hubbub in the background) and try to decide if it’s live, or a recording. “Breathe in / breathe out / breathe in / hold ya breath,” goes the poem. After the machine releases you, a millisecond before despair, you get, “Annnnnd breathe.”

Halfway through the scan they inject you with contrast. The CT contrast is apparently made from shellfish, which is something I don’t eat. I imagine if I did eat shellfish I’d get the same weird effects I get from the contrast – a metallic taste in my mouth, and a sudden warm feeling spreading through my pelvis, as though I were about to pee. (I think I will continue avoiding shellfish.)

I mentioned to the technician that I’d be having a brain MRI directly after the CT, but I didn’t know whether I would need an IV for it. At the end of the CT scan they forgot all about checking if I still needed it, and removed the IV. To be fair, I could have reminded them too, but I was too anxious to get out of there and walk eight blocks to my next appointment. I’d been fasting since 8:45 and it was almost 1 p.m.

I walked as quickly as I could to the MRI place. The midday sun couldn’t penetrate the long shadows of the buildings around the hospital. I spent about 15 minutes in the waiting room, filling out a sheet full of “no’s” – they wanted to know if there was any metal inside my body, anywhere. (I had no idea you could even have so many metal things inside your body!) There were some mobiles suspended from the ceiling that looked vaguely seasonal (pinecones and bare branches) but also a bit amateurish – I wondered whose kid made them.

I learned I’d need another IV, so I resigned myself to having both arms stuck today. Luckily the nurse who placed the IV sympathized and found a way to get the IV in the arm that had been used already. The good thing about being a generally healthy cancer patient is, your veins haven’t collapsed. They work when they need to. I’m grateful for that.

I didn’t need a gown this time since I wasn’t wearing anything metal. I was led down a corridor I never imagined was there (the place seemed to expand as you walked through it) and deposited in a chair outside the MRI room. It was a hallway that ended with a door to the outside, and it was damn cold. I wished I hadn’t left my coat in a locker.

As I rubbed my arms for warmth, a nurse or tech, or maybe just a random dude in scrubs who had wandered in from the street, asked if I was cold. He turned on some space heaters and brought me a gown and insisted on tucking me in under it, “just like my daughter, snug as a bug in a rug.” It was sweet, I guess, but also super weird, especially because he looked a little bit like a Ramone, or some other hard-living musician from the 70s. My comfort didn’t last long because no sooner had I been snugged like a bug, they were calling me in.

I hadn’t had an MRI before and I was a little worried. I am not typically claustrophobic but it does tend to flare up at random moments (like, say, when I’m stuck in a too-small dress or sweater in a fitting room). I decided I would try to keep my eyes shut as much as possible, breathe deeply and try to “enjoy” the experience (meaning try not to lose my mind). I had an emergency bulb to squeeze if I needed out.

I was given ear plugs and then earphones, and selected classical music (I’m not sure what Pandora was playing but it seemed like Classical Lite). I was warned the machine would be loud, but I wasn’t quite prepared for the feeling of a jackhammer all around my head. I tried to listen to the music through the noise. Unfortunately, when one piece of music ended, an ad came on at full blast and almost blew my ear drums out. (Actually subscribing to Pandora to get ad-free music would be more classy, perhaps I should write a letter.) I squeezed the bulb to let them know I needed the volume lower. They responded immediately to see if I was okay. Yep, I said. The music blared on.

I opened my eyes at one point and directly over them was a piece of the camera which had a small window that showed me my feet. Like a short-range periscope. I moved my foot slightly, to make sure it was my foot. That was stupid, but reassuring.

I squeezed the bulb a few more times to get status reports. I learned that 18 minutes and two minutes and five minutes all are about the same length of time when you are immobilized inside a big, loud machine. I thought perhaps I had what it took to be an astronaut, at least a movie one. I thought about my friend Sarah telling me about her first experience of an MRI, but then I was sad and had to think about something else. I thought the classical music combined with the loud beeps of the machine was slightly reminiscent of Stereolab.

And then it was over. I booked it to my favorite chicken place in the neighborhood, swallowed a salad as fast as I could, and jumped on a train, arriving in time to get the kids from school. I powered through homework with Young J, then turned on Netflix and collapsed. Apparently fatigue is a common side effect of an MRI, if only because the experience is so overwhelming to the senses. I’ve been lying down most of the evening, when I’m not drinking crazy amounts of water to flush the two doses of contrast out of my system.

Compared with today, going for my results on Wednesday will be easy. J will be with me. I won’t need to do anything except maybe tithe my customary three vials of blood to Phlebotomist B. And then I’ll get some good news. Right?! Good news!! Well, let’s hope so.

If you were undergoing a medical procedure tomorrow that would give you some very important information about an existential threat, what would you be doing today?

If you’re me, the answer is: figuring out how to smuggle three large bags of vegan popcorn, a twelve-pack of pareve cupcakes, ten mini bottles of spring water, and some empty cups, into a movie theater. And then escorting seven children (with three adults) across the West Side Highway, possibly in the rain.

It passes the time, anyway…

(I started the New Year by composing a letter to myself that a website called FutureMe promises to deliver in ten years. Then this evening I went to see “Interstellar,” which involves a man leaving his family for decades to go explore the far reaches of space. And now I am glad I copied the text of my letter after I wrote it, and was able to paste it here, many hours later. Yes, this is probably cheating.)

Dear FutureDeb,

It is January 1, 2015. In a few days you’ll find out if you are still growing melanoma in your lungs. And you will find out if you need any more drugs to treat it or if they’re just going to watch the tumors keep shrinking.

Maybe by the time you get this letter, the treatment for metastatic melanoma will be a kale enema. Or something you slip under your tongue like those homeopathic pellets.

Right now the boys are 8 and almost 5. Where you are, they are 18 and almost 15. How much scarier is that? Did Young J really grow to 6’5″ as forecasted? Is he still obsessed with boats? Is Young A still handsome and completely unpredictable? Did either of them pursue music? Do they still love to draw?

My main reason for writing this letter is to make sure you’re still alive to get it. This site lets you send things pretty far into the future but I’m setting it for ten years. You’ll be 53, and I sure as hell hope you found a job.

Peace out,
2015 me

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.

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.

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

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.