Brief musical interlude

I’m back from saying goodbye at work. And it was another – the tenth in a row? I don’t even know anymore – day of 10,000 Unbelievable (and Awesome) Things Since Breakfast. So I can’t. Even. Talk. In. Words.

Here’s a song instead, which I have undoubtedly posted before. Enjoy the groove and look for the line, “What good is cancer in April? / No good at all.” Sorry, but it will have to pass as my pick for Poem in Your Pocket Day today.

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How’m I doin’?

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It’s 3:45 am. Been up for an hour. That’s actually even worse than when I was having my bedtime steroid dose, which for the first time tonight, I skipped. They do have a hold on you, the steroids. I had a list of questions about various symptoms today for Dr P. After the first three or four she said, “Am I going to need to tell you the same cause for each of these? Let’s see… YES.”

I probably slept about three hours before needing to pee. I woke up feeling like THIS was the night I’d fall right back asleep. This is more of the type of mental process of coming off steroids, however:

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“We UP! WE PARTY!!! WE HAVE THE STEROID RAGER ALL NIGHT!”

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soundsoflife, by frankieleon on Flickr, licensed under Creative Commons

“Stayeth in thou bed and behave, lest ye be smitten from exhaustion to-morrow.”

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WE GOTS THE STEROIDS! AND YOU CAN’T HAVE NONE!”

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soundsoflife, by frankieleon on Flickr, licensed under Creative Commons

“And your cattle… and your brethren… and every beast of the air…”

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WHATEVER… DID SOMEONE SAY ROID PARTY???!!!”

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soundsoflife, by frankieleon on Flickr, licensed under Creative Commons

“And the dust… and the dust… and the dust of the bones of the dust… OH FOR THE LOVE OF G-D! IT’S THE DRYEST PART OF THE TEXT EVER! JUST GO TO SLEEP!”

You see I have my work cut out for me. Tonight, I’m lucky to have a friend who drives a cab and is textable (not while driving) at these hours.

In a few hours, I am going back up to work to empty my office and say goodbye. Exactly how do you say goodbye to colleagues while crazy on steroids? I’ll tell you. You cater lunch and force the previously scheduled staff meeting to be turned into a party and you prepare a tribute to your boss (based on post from here a few days ago) and then make an attempt at recording it podcast-style because there is no way you’re getting through a live reading without tears. I’m still new at all this, though, and the sound I captured may not work in the room, so I may need to just go for a reading anyway. Oh – and for good measure, also bring your husband and your mom!! (who showed up as a great and wonderful surprise yesterday) and enjoy the conversations you will overhear between segments of your life you never thought would meet, but which is now the type of thing that has honestly become the new normal.

Don’t miss me

(There is going to be much less of this craziness)

Dr P authorized tapering my steroid. Thank GOD.

I would also like to welcome Dr P, Nurse Practitioner K and Nurse Practitioner R and anyone else at the cancer center who’s reading along, because I introduced them to the blog today.

Truly, it’s like I’ve been writing this for you all, all this time – and I dedicate every word to you with extreme love, respect, admiration, gratitude, and very soon… ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ.

(No, I didn’t sleep)

FOUR IN THE MORNING
Wislawa Szymborska

The hour from night to day.
The hour from side to side.
The hour for those past thirty.

The hour swept clean to the crowing of cocks.
The hour when earth betrays us.
The hour when wind blows from extinguished stars.
The hour of and-what-if-nothing-remains-after-us.

The hollow hour.
Blank, empty.
The very pit of all other hours.

No one feels good at four in the morning.
If ants feel good at four in the morning
–three cheers for the ants. And let five o’clock come
if we’re to go on living.

Translated by Magus J. Krynski and Robert A. Maguire

Brain…

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pg 226 Our Brain, by Sue Clark on Flickr, licensed under Creative Commons

You’re on notice tonight. I took my meds on time (the steroid is what messes with the sleep). I’m well and truly tired. I talked to the nurse, who taught me the term “hypervigilant.” Yes, I am that.

On top of everything else today, when I finally drifted off for a nap, I missed a call with lab results from the dermatologist, and when I called back it was too late in the day. I get to wonder about this until the morning. But I’m hoping not to wonder awake. Nurse Practitioner K said to cut the Lorazepam in half and if I’m up in the night, take it. I will. I won’t also turn on my phone. J was kind enough to get rid of the ants that were crawling in our bed all day. Perhaps this night has sleep written on it, the sleep of which I dream.

Tonight I went to a discussion at the kids’ school on talking to kids about God (it’s a Jewish school so this is permissible). I felt I was following along, asking questions, and contributing to the discussion, but on a parallel track I had no idea what was happening. Then while walking home I remembered out of the blue the most depressing little self-eulogizing poem by 16th century French poet, Pierre de Ronsard:

AMELETTE Ronsardelette,
Mignonnelette, doucelette,
Tres-chere hostesse de mon corps,

Tu descens là bas foiblelette,
Pasle, maigrelette, seulette,
Dans le froid royaume des mors;

Toutefois simple, sans remors,
De meurtre, poison, et rancune,
Mesprisant faveurs et tresors

Tant enviez par la commune.
Passant, j’ai dit: suy ta fortune,
Ne trouble mon repos: je dors.

Let me paraphrase: “I’m a poor little soul and I’m all weak and I’ll just let you go your way and please don’t trouble my sleep (it’s really I died). Boo hoo!”

I was too tired to actually be angry, but really brain? You need sleep and calm and comfort and rest… and you dredge up Ronsard’s pathetic little self-eulogy, which you haven’t thought about since you wrote the paper in 1992?

NO FAIR NOT HELPFUL.

These are the people

I’m a professional flâneuse. No, really.

Here is the short list of people I spoke with this morning, between dropping off the kids and shuffling back home 2.5 hours later.

K, my rap impresario – whom I have since learned from a mutual friend came from the venerable hip hop locale of the Queensbridge Houses (thank you to my good friend and hip hop queen A for putting it into historical perspective – gonna be learning more) We’re trying to see if he can come over to start working on the song this weekend.

While in the building, I also talk to T, who’s my fellow student at the fitness studio and is sweeping up. He’s read my blog, we talk about music because I find it hard to believe he is the same age as Robyn Hitchcock and never heard of him. I told him they must have been at all the same parties. Then I learn T was in music in the UK and he briefly managed Marc Bolan. That Marc Bolan. Whoa! T tells me he envies me the writing fervor. (I tell him it comes with a side of cancer, so careful what you wish for.)

This is in a block radius of my kids’ school. Then on my shuffle back up the block, run into E, co-owner of one of our favorite Italian restaurants in the neighborhood. I unfold my entire tale and she is so kind to listen – though I should stop laying the trip on everyone. They are celebrating ten years here and I’m so glad, particularly as places seem to shut down left and right. I’ve always wanted to talk to E more, because I have a very fond memory of apartment shopping in the neighborhood, over nine years ago, and sitting there having dinner with the floor plans and E helping us decide. She said she remembered too.

And then, I get to the cafe. My aim is to drink some tea to soothe my throat from all the talking. Literally, I am doing these speaking tours, every morning after school dropoff, like some sort of manic cancer politician.

C comes in to the cafe right then. A lovely neighbor and mom to a son around Young J’s age. They live with her mother, who is the most committed gardener on our block, and I treasure knowing them, and they have lived here for years. I had been wanting to tell C my latest, because she and her mother (a cancer survivor) have made it their business to keep up with me, make sure I know they are thinking of me, and give me encouraging words whenever we meet.

Today, I felt like I hit the jackpot, because C sat with me, and we talked for probably an hour. About everything, not just cancer. I am so glad we got to. I’d been wanting to hang forever.

Thank you, Brooklyn, for making my cancer tours the most unexpected, diverse and fascinating. You have my heart. But you knew that.

Yes. I love them even more now

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This day began rough for Young J. I hadn’t seen him so out of sorts in a long time. It was painful. But I am absolutely in no state to yell. I can’t even be in a loud place. So I begged him, pleaded him, to reset himself in his room. I had caught him too late to use our long-time technique to correct a bad wakeup (“Hey, can you go to your room and find Happy J? He must be in there somewhere!”). This was DEFCON15 and it frightened me.

By the time we left the house, Young J found an ant – lately he likes holding ants – and was in Zen calm. I have so much respect for him, pulling that off. I could learn from this kid.

They seem a little clingier in the morning at school. Young A asked for about 15 hugs this morning before letting me go. Luckily, this is now my full time job. I dole out as many hugs as requested. And now they’re both in school all day, much less snack preparation for anyone but me. Snacks… I’m so into food. I could spend a lifetime making up for last fall. (There’s just the small matter of medicine mouth making things taste not perfect. Unfortunately, the things that do taste perfect are mostly fried.)

I spent intense amounts of time with great people having great conversations all morning. When I got home, Rosa (not real name) was here cleaning. I haven’t seen her in months, and now I had news. We sat down and talked for an hour. I have been speaking Spanish my entire life, but today I was worried. Could I? Would my brain let me?

It was wooden. There were many words missing, conjugations missed the train, and excessively fancy words stepped in. Rosa has always had high praise for my Spanish, and she said it was fine. I remembered how to say “immune system.” But I knew better – this was total pidgin. (And I know I should avoid at all costs speaking Italian for the next couple months, because the idea of losing even temporarily the language closest to my soul would ruin me.)

I made my way to bed. My hands and feet were freezing. It was 2 pm and I should have just taken the fickle Lorazepam and slept. I find that particular sleep comes with too much of a fight though, both down and back up. But my biggest problem with sleep is phone. If I power it down I only power it back on, because I forgot to send a twelve-paragraph email.

Around 4 it seemed like a good idea to just stay awake. I had promised J basketball tonight. He wasn’t going to miss it again. I’d go the distance for him. By dinner I was really fading and had to turn off lots of lights and make everyone eat in near-darkness. I inhaled two burgers, some salad. And then it was time for J to leave.

I wouldn’t say it was dread. I would say maybe mild dread, ok. I didn’t know how tired they were. There were things I had negotiated no’s to (like baths – couldn’t deal) which eventually became contentious. Connect 4 was somehow broken and this was a big and terrible metaphor! (For Young A.)

Young J, on the other hand? After an inauspicious start to the day, was poised to have an incredible evening. At dinner he asked where sticks come from. Just sticks in the park. I wound up talking about reasons the branches are shaped the way they are, capillaries inside the branches, a suddenly received world of botanic knowledge I don’t actually have. Apparently I can bullshit my way through anything now, with the power of pharmaceuticals? I was not saying anything untrue, but it didn’t sound accurate either.

After dinner he unleashed a volley of questions for the rabbi from his school. We rushed to Facebook to send them to him. None were about anything related to me or illness or death. They were pretty much all God.

I perceived a sudden uptick in the discourse with this 8 year old. I decided to read him my last blog post, about the directionality of good and evil and how I want the cancer to pop out of my head and disappear. I did not clarify that any of this was metaphorical. I think he understood. And of course, loved the photo of our neighbors’ dog. For his final magic trick, he asked to spend 15 minutes typing a story of his own. I set him up and when he was done, I helped him save his first story in Word. That felt special too.

I had to entertain the kids somehow before sending them to bed. If only for a minute. I’d been telling Young J he could learn to touch type, and I wanted to show him what a fast typist looked like. That used to be me, 110 wpm. Apparently another casualty of my brain right now is that. Still, we went on TypeRacer and I got to win (even though I did terribly). I got my kids to cheer for me – that can’t be wrong.

Bedtime took a bit, but it happened. Just before lights out, some very dark humor about the cancer exploding from my brain came about, and Young A in particular was chortling so hard I had to repeat it a few times.

Truth. I’m an irreverent sick person. But I’ll do anything for a laugh from these kids, because they are saving me, and how can you say no?