Gone fishin’

Let's go fishing... is all I can think about looking at this photo, by Jeff S. PhotoArt on Flickr, licensed under Creative Commons

Not in Ontario in the fall, no.

I’m leaving for a few days. Going easy on the blogging. Got a lot of people I love that I will see. I will recharge my battery and stop being the steroid-crazed cancer flâneuse of Brooklyn.

Don’t worry about my well-being. Don’t worry about yours! Just be.

Hallelujah, and whew

Confetti al cel, by Núria i JC on Flickr, licensed under Creative Commons
Confetti al cel, by Núria i JC on Flickr, licensed under Creative Commons

I went for an MRI this morning. I was worried when the train stalled in the tunnel just south of where I needed to transfer, taking me past the time I was meant to be showing up to sign in. I still needed to transfer and ride three stations. It was tense. I was listening to music but finally couldn’t take the stress anymore.

Facing me was a woman dressed in scrubs, also annoyed by the delay. I tried to will myself not to talk to her, because apparently now, fortified with steroids, I am become a person who speaks to everyone. I could not keep it in. I asked if she was a healthcare worker, and she said yes, a phlebotomist at a faraway hospital. I told her how much I valued Phlebotomist B at the cancer center. I tried, really I tried, to keep my steroid-fueled gregariousness in check. I could not. At least I only spoke to one person.

To think, at the beginning of the subway ride, I’d considered making an announcement to the entire car about an effort the NYC government is making to reach out to workers in manicure shops, following the recent NYTimes expose on poor health and labor conditions at many of them. I had just gotten an email this morning with information on how to sign up to be stationed at one of a dozen transit hubs on Thursday morning to give out literature to people who may be employed at these places. I didn’t think I could go to any of these faraway stations at 7:30 a.m., but I figured maybe if I announced it someone might take interest. I didn’t do it, though. Because I still have a very froggy voice from my unrelated-to-cancer spring cold/upper respiratory infection/reminder I am human and not some freakish cancer-fighting-eternally-blogging robot. Not because it was a crazy idea. I have had a few dozen of those in the past weeks.

Speaking of dozens, guess what? I found something out today. Something interesting, going back to last month. Back when I was writing to you from my hospital bed? And recorded my brain malfunctioning as it happened? I didn’t have three lesions on my brain then, as I had been given to understand. Today, I learned from Dr P and Nurse Practitioner R, their faces flooded with relief upon seeing a good brain MRI from this morning, I had actually had “a dozen.” A dozen lesions on my brain. That may not even be 12. A dozen is an approximative number. Like “several.” I understood I had several, but what I actually had was a dozen.

I cannot quite get over this past month. It has been one of the most transformative in my entire life. Even when I went through puberty or shot up to six feet by eighth grade, I don’t think I’ve been through this much in this short a time.

The elevators at the cancer center were totally messed up today. I race-walked from the subway to get to my MRI appointment ten minutes late, then climbed a steep flight of stairs to the office. Dr P’s office, though, is on the 9th floor. I wasn’t up for that kind of climb. I rode in the elevator with a lot of sick people. I know there is great pain and suffering in that building. Last fall, I was briefly part of that landscape, adding to the tableau of infirmity. Today, I was exuberant even before I knew the results of the MRI. I enjoyed my time in the weird tunnel, happily looking through a mirror at my legs and feet and almost laughing when the lame classical music in the headphones (truly, it was from the soundtrack of Swiss  Family Robinson or something) would get drowned out by the jackhammer or fire alarm noises that produced resonance that made the images of my rapidly healing brain come clear.

I am not out of these woods, this selva oscura my mid-life has led me to. Phlebotomist B drew some blood today. I learned about his life – he works in Midtown, lives in the Bronx, and studies way out in Dobbs Ferry. He spends his entire life on the road. He is trying to transfer to a closer program. I felt it my duty as a New Yorker and a Jew to teach him the word schlep. But first I had to explain to him what Yiddish was. Perhaps he had no idea I was a Jew before today. I told him next time he’d need to teach me a word from his language. He is from the Gambia – which has English listed as its official language, but it could be a number of different languages he grew up speaking. I’ll report back when I learn a word from one.

The blood he drew was analyzed, while we celebrated my good news with Dr P and Nurse Practitioner R, who announced her new pregnancy to us. I am down to three lesions, the largest of which (the three centimeter one from last month, the one affecting my speech and language) is now down to a centimeter. That is unbelievably rapid progress. In one month. I also came bearing gifts today, for Dr P and both nurse practitioners. I had heard about this anthology on Facebook and promptly bought four copies. I started reading it a few nights ago, and have been riveted. I have gone from not having a very good understanding of nursing to reading the most profound meditations on it from excellent nurses who are also excellent writers. Do you need more incentive? IT’S ON SALE. Go buy one. Dr P celebrated with us her first “A” in accounting (did I mention she’s getting an M.B.A. in her “spare” time?). It was just nonstop joy in that room. Nurse Practitioner R made up a calendar to help me taper further off the steroids. Even though I’m down to one 4 mg dose per day, it did keep me up last night when I decided not to take my sleepy drugs. I also learned today that Ativan is not habit-forming, so I won’t need to worry about not taking it when I want to stop. And I want to stop. Staggering to the bathroom in the middle of the night like an addict is not my idea of fun, and it’s ten times worse when Young A also gets up to pee and I need to supervise and feel like I’m going to just fall over.

So. The blood work. That’s when things turned slightly southwards, but nothing insurmountable. The blood work showed an increase in my liver function. This is attributable to the cancer drug. So I’m officially off it for a week, until I go back next week for another blood test. I was reassured that this is normal, that patients often take breaks from the drug, and that it is yet again proof the drug is working (as if my own immune system obliterating maybe ten brain lesions were not proof enough?). I’m glad the side effects this time are more sneaky. (I like sneaky. I can handle that. I know now that I can’t handle a month of colitis. That almost broke me.)

In the waiting room, J and I had met an adorable four year old girl there with her mom, who is also being treated by Dr P. She’d actually been diagnosed with melanoma while pregnant. She was referred to Dr P as the person to see. As if I needed more reasons to love my doctor.

I also found new pants for the boys to wear in their school pictures tomorrow. Pants without holes in the knees, like all the rest of their pants. And they were marked down to $5.90 each. It was THAT KIND OF DAY.

A song in the night

I didn’t take my sleepy drug triad tonight. I am a little anxious about the results of the MRI I’m having later this morning. So here I am back where I was a few weeks ago – wide awake at 3:30 a.m. when I was so sure it was already 5. I’m okay with this, because I know that later, I will sleep. After the MRI and the Very Long Lunch Break and the 1 p.m. consult with Dr P.

It’s funny, when you are as obsessed with music as I am, what the first song that pops into your head can be when you find yourself wide awake in the core of night. Tonight/this morning, it was this one.

On my 15th birthday, I had recently changed schools. I didn’t have a lot of friends at the new school yet, and had lost touch with the ones from the old school. So I had one of the most angst-ridden 15th birthdays in the universe. At this distance it sort of amazes and amuses at the same time. I accompanied my parents that evening to see a new documentary, Partisans of Vilna. I am sure the choice of movie didn’t bother me at the time, and I was probably glad to go to the movies with my parents, who rarely went.

On the way home, we stopped at a hospital. We stopped there to check on a friend of a family friend who was dying of cancer, to see if she’d died yet. A weird, awful errand. I probably stayed in the car as I have no memory of the hospital.

Once we got home and I was curled up in bed with my trusty angst log – I mean journal – at the ready, I suddenly realized that the evening, and my entire birthday really, had been GRIEVOUSLY WRONG and there was an urgent need for redress. I needed to do something good for myself, and soon.

I was in a creative writing class at school with people older than me. It was a given to them that you listened to the progressive radio station, WHFS (and you really should follow that Wikipedia link, as it is hard to imagine another set of call letters that has had that many things happen to it).

Well, guess what? After a period of listening to WDJY, the “urban contemporary” station, during my awful, awkward junior high years, I had settled on Top 40, which in the mid-80s had been passable but by late 1987 was becoming unbearable.

My conscious, soul-saving act on that winter night of 1987 was this: I made a written declaration in my journal that I was done with bad music, and I deliberately switched the dial on my boombox, from the top to the bottom, until I tuned in the station from far-off Annapolis. “I think they’re playing John Lennon,” I recorded. I don’t have the journal in front of me now, but I am pretty sure that’s what I wrote.

I was introduced to dozens of bands thanks to my new listening choice, and by the time I went out to San Francisco, alone, to visit my brother U the following summer, I had quite a list of albums I wanted to buy. I remember wandering through the promised lands of Amoeba and Reckless and Tower, amazed at my finds. One of them was the album by Translator, the band you heard above. It wasn’t much of an album. I only have it on vinyl and haven’t wanted to hear any tracks from it in years, which is good because the turntable has been imprisoned under the couch for about 9 years now. We’ve kept our albums, but haven’t had a means to play them, and I recently (before going back to work in February) evicted a bunch of them from a shelf in order to make space for the kids’ burgeoning library. I didn’t have a plan B for where the albums would go. My 45 collection is kind of strewn around on the floor lately. “The Reflex” by Duran Duran, in its limited edition poster sleeve. This morning I was grousing about the vinyl on the floor to the home organizer (we were focusing on my bedroom today) and I said, “You know, I guess if someone stepped on and broke ‘Walk Like An Egyptian,’ I wouldn’t really care.”

But this song! Man! It’s practically a work of philosophy, or maybe even physics. “You’re everywhere that I’m not!” The requisite list of foreign cities! The impossibility of love ever coming to fruition, because the beloved is NEVER IN THE SAME PLACE as the speaker.

I hope you listen to this song when you read this post, J (if you’re keeping up – I don’t think I’ve asked you in days whether you read a particular post. I’m trying). I’m sure you’ve heard it before. We used to play each other lots of songs. It was part and parcel of our courtship. Now I am in this place that you’re not – Cancerland – but you sure aren’t as hard to find as the person in the song. Thank you for that.

(Imagine the immortal voice of Casey Kasem, who I left ruthlessly behind in December 1987, reading this out as a long-distance dedication.)

Change of place, change of luck

Today was my first time working with the home organizer we’ve hired. I’d been so impressed with the work J did with her. But this morning I woke up feeling like death, after a very bad night of sleep due to congestion, a sore throat, nothing cancer-related at all

By 10 a.m. I wondered if it even made sense to go through with the appointment, even though I’d emailed last night to say I was going ahead. She came into my bedroom and started emptying the Problem Bookshelf. It has been the place I stuff things when I don’t know where else to put them, and over the past 8 years it has gotten overstuffed, and not just with books. Old birthday cards, boxes with old journals, my notes from English 453 (Literary Theory). I read part of the kooky mimeographed syllabus to D, the organizer, and we both started laughing. I had told D I needed to lie down but she’d actually put the entire contents of the bookshelf across my bed. I was going to have to work for a rest. I managed, somehow.

Four hours later, we’d unclogged the bookshelf (which now has books on it in neat piles depending on which library they come from) and even moved on to tackling my desk in the living room. The truth is, I’m pretty sure I’m going to give that desk up to Young J and Young A as they learn to do useful stuff on the computer, and I want to set up camp with my laptop in the bedroom. A few logjams remain, like my file box of “broken books” (mostly damaged pop-up books) which the kids still want access to. (Or do they? Hmmmmm.)

I picked up my shoes from the shoe guy, ate ramen (which tasted perfect in spite of my congestion), then came home ready to move into my new wallet. Almost immediately, I was met by this:

From my grandfather, Zalmen (z'l)
From my grandfather, Zalmen (z’l)

My grandfather brought me the quote in German one Friday evening when he came for dinner. The following week, he brought me the translation, written on the back of a grocery receipt and glued to a piece of cardboard. Ive carried it in my wallet ever since. It turns out to be a pretty standard, classic quote in German, something people use in tributes or obituaries.

But it certainly means more than that to me, at this stage. I love that my grandfather chose to change the gender in the translation. And I really am a girl with hers contradictions. And these days, I really miss having grandparents.

Condition revised to pretty crappy

HUD is CRUD, by Culture:Subculture Photography on Flickr, licensed under Creative Commons
HUD is CRUD, by Culture:Subculture Photography on Flickr, licensed under Creative Commons

But it’s not at all cancer-related! Just some kind of a walloping cold/sinus/strep extravaganza. I woke up feeling worse than ever, and with no voice. J had to do all the yelling and kid wrangling this morning. I was loath to cancel my appointment with the home organizer, but I did email her to tell her how I’m feeling. She says she will do all the work. I wonder how that is possible. I have books checked out from three or four different libraries strewn across my bedroom, and that’s just the start.

I just checked in with Nurse Practitioner R who said I should still plan to come in tomorrow for the MRI and talk with Dr. P in the afternoon. This is a big day, after all – they’ll decide when I get lasered.

I’m sure I’ll make it there, but I wish they had napping pods in the cancer center like they do in Japanese train stations. I could do with a nap. And it’s too squalid to nap in the waiting room.

Feeling happy while you feel crappy

I’ve avoided talking about God much here. Because since last fall’s bombshell news I have avoided talking with God much at all. We are on hiatus, we are on “a break.” It’s the best thing for the both of us right now. I don’t tell my kids I’m on a break and they see me reciting the same blessings on Shabbat that they are. For me, this is a family ritual. These are words we say communally and it doesn’t really matter if I truly mean them, or not.

But today, having had a crappy night (including multiple shushings from J because I was snoring, which it horrified me to think I was actually doing), and waking feeling not much better, and realizing my grand scheme for the afternoon was no longer realistic – take kids and my mom on the subway back to her bus and then take them to see this installation at Madison Square Park. And get some gelato at Eataly.

CANCELED. I went to urgent care after we had brunch with Mom. They swabbed my throat which apparently does have white spots, but the rapid strep came up negative. Still, they felt I needed amoxicillin. I gave them the short version of my cancer treatment and they were suitably amazed. The assistant asked me to spell all the drugs I’m on. Good thing there’s an app for that.

I dropped off the rx at the pharmacy and they said it wouldn’t be more than 15 minutes. I was already so tired I didn’t want to walk the five minutes home and then five minutes back. So I went next door to the Latin place and got chicken noodle soup. I’m so congested it tasted like nothing, despite all the salt I dumped in. The buttered toast that came with it, much more yummy. Medicine mouth + congestion = low satisfaction yield on meals unless they are buttery, fried, or fried in butter. I’m about to drink a gallon of Throat Coat tea. Paired with a blueberry doughnut.

I was sad at the undoing of my grand plan for the afternoon with my boys. But the installation isn’t actually due to open until June 1, my mom can manage getting to her bus on her own (and she has), the kids got Shake Shack for lunch (as did J, who is heading off to his basketball game questionably fueled on burger and shake).

In conversations lately, the image of my family gathering around me and saying in very stern tones, “Don’t screw this up, Deb,” has been circulating. Obviously, there has not been such an intervention. But when you are a pioneer at something, even if it is something crappy, like cancer, it is nice to think of your family gathering around you and giving you that kind of courage.

Actually, I think this image stems from a summer job my brother G (whose post is coming, it’s coming, and he has already chosen a cartoon character for his avatar) got me when I was in high school. He was employed by the company and got me a temp job there. He couldn’t resist wandering over the first few days and peering over my shoulder. If I made the slightest typo he’d mutter under his breath, “Deb… you’re fucking up! You’re fucking up, Deb!” Yes, it was ridiculous, I don’t know how I survived, but they really liked me there and I was not, in fact, fucking up. Nor am I now, I don’t think, at least not yet. I hope my family is proud of my work so far.

Last night and this morning a song was running through my head. It’s not quite a niggun (which is a wordless Jewish spiritual tune) but close enough. It takes as its lyrics something Rabbi Nachman of Breslov said. He was a colorful figure. His disciples today seem a little batshit or on drugs, to wit (warning – this video runs 14 minutes!):

But it makes me happy to see them. Why not? You see Hare Krishnas dancing with abandon in Union Square, but these guys? They’re MY people. I could dance along with them. Well, or maybe sort of near them. (They probably wouldn’t dance with women.)

I think I learned this song at a kooky Jewish summer camp in Simi Valley CA which I attended while I was in college. The demographic was ages 18-27 and I think they were trying to turn us into future leaders of the Jewish community. That worked out really well for some people who have actually become leaders, but I have never had any inherent leadership qualities. I did make some good friends there, though I’ve fallen in and out of touch with them, and I remember the kibbutz-like feel of the place that actually made someone more than once, during a discussion, talk about “my friends back in the States” – as though some whitewashed buildings and eucalyptus trees and everyone wearing all white on Shabbat were enough to teleport us directly to Israel. Mostly that summer I danced – there was an excellent folkdance teacher there and we performed at the end of the month. And when I wasn’t dancing, I was singing. This was – I am pretty sure – one of the songs. I’m not sure why I’ve chosen a day when my voice is froggy and congested to make my vocal debut here, but if you hadn’t noticed, strange things are happening on the regular, and sometimes it’s because I make them happen.

The lyrics are on Soundcloud but reproduced here:

Rabbi Nachman of Breslov used to say: DO NOT DESPAIR!

If you are having a hard time, you just need to be happy!

It sounds so simple, really.

I’m tired

Liquid portal, by Mikko Luntiala on Flickr, licensed under Creative Commons

It’s pretty great to feel fatigue, even though it’s because I have some kind of unbelievably pedestrian infection, which may or may not be strep. It’s almost embarrassing to write it. This? This is harder to deal with than cancer?

It was novel to go to urgent care about something so mainstream.

I’m so sleepy I can only type with one eye open or the other. So I better nod off.