(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.

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

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.

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.

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?

It can’t have been more than a year? two? ago that one of the kids – should I put my money on Young J or Young A? – asked me how babies came out of me. I’m one of those “need-to-know” moms of boys. I didn’t feel like having the whole uterus talk because honestly, it was a weekend morning and they would have stopped listening in a millisecond. I give my kids books to learn that stuff.

So I made a grand sweeping hand gesture from my belly, downwards. “You came out” – whoosh! – “that way.”

The question may have been repeated once or twice more, and they dug the hand motions. End of story.

This morning I went back to my beloved exercise spot. I knew I wouldn’t be joining anyone in anything remotely strenuous – just some breathing, some foam rolling, stretching. I honestly spent most of the time talking – my latest type of workout – with two students there I’ve known for a while. They were learning about my new normal. I used the back massager a little. I drank water.

But even a low-calorie workout like that one serves to reorient your mental map. Back in the space where I have focused on the body before, my brain started thinking about my body again. I was talking to K after, who is going to help me with the rap song, and suddenly it hit me, the direction my thoughts were going. (Yes, I do know they are going in every direction.)

“My melanoma showed up on my back first, right? Then, it spread to my lungs. And now it has moved up to my head. IT IS COMING OUT THAT WAY, THROUGH THE HEAD!”

I don’t know if this is a scientific, metaphysical, or simply science fictional observation, but I’m going with it.

Everything good in my life has emerged from below, heading earthwards. This thing bedeviling me now, heading the other direction. Up, through my brain -which has gotten so offended at the attack it’s working overtime to compensate – and then out my red hair, and off into a filthy province of space, where it will stay, away from me, forever.

That will work.

As will other earthbound things, like our new four-month old neighbor, Onslow.

(Just texted to a friend. Thank you David Rees for the general lexical framework.)

I am learning to be grateful with every breath. With every hug. With every pink teddy bear that says BELIEVE.

Years ago in Ann Arbor, I went to a modern dance workshop with a choreographer local to Detroit and she had invented something called the “traveling technique” and she was going to teach us.

She started the class by saying her name and said, “You’re going to hate my music, but you’re going to love it.” This was at a time when the going soundtrack in modern dance classes ran towards Dead Can Dance or Enya or Medeski Martin and Wood.

She played this.
https://youtu.be/Rpq35wyDi7I

We’re meeting with a home organizer this week. Eek. It has been a long time since we tackled our accumulations in earnest, the non-lucrative kind, and I’m pre-relieved to have a new way to go. I also feel we have a responsibility to the Youngs to learn to live differently. If they see us do it, maybe in 20 years they will do it too.

“Du mußt dein Leben ändern” seems especially imperative now. Much more of that impulse in a moment.

J pulled the trigger on getting plane tickets for June. We’ll go to Denver for a week after kids are done school and before camp. I’m feeling stirrings of excitement which I hope will not be squelched by my inability to do much except sit in the car and look at peaks. Hoping the energy level returns a bit. I’ve not exactly been an outdoorsman in my life. Right now I’d be the dead weight grandpa in the van. There is room for improvement. This week, I start eating better. More greens, more lean & mean.

How will she have the time to refocus on her health and diet, you might ask? It’s an interesting question which was just resolved about 20 minutes ago. In my bedroom.

All last week I knew I needed to come clean with my boss, A. Tell her my situation so she could help me figure out what to do, whether that was stay, leave for a while and come back, or some unknown third way (teleportation?).

A was out of town this whole past week. And now, today, with the weekend drawing to a close, I felt more anxious than ever about making sure she could hear the scoop from me, and soon. I had looked at her work schedule and it looked jammed this week. Traveling an hour each way by train wasn’t seeming like a good way to do it. I tried a cell phone I’d had for her back in January when we met up for lunch during my interview process. She had been on jury duty then, so to have lunch with her, I met her one day near the court house. We ate fried chicken. It was the best and most informal job interview lunch ever. I knew I liked her.

The cell wasn’t working earlier today. I emailed a couple of colleagues to see if they had a different phone for her. No dice. Though in a weakness, my email to one of the colleagues, S, finally had me tell her what was going on, and I shared my blog address. She was one of my favorite people at work and now I was letting her know my news in the worst way imaginable. I hope I get a chance to make that up to you soon, S.

It was a weird afternoon. I knew I’d need sleep because I am working my (annoying, chump change job) tonight, so I popped a Lorazepam, but again, it gave me only about 45 minutes of Lethe. I was up again and firing off more emails – another idea to a friend about the Kickstarter, some other stuff. I don’t remember. I kept thinking I should get up and work on the rap lyrics. J and the Youngs were out and I decided it would be the perfect time to make popcorn. I was still so addled I had to talk myself out loud through it. “There is the popcorn, good. Take down the popper and plug it in. Butter will be nice. Microwave it.” I was so, so careful. I cut the butter with a kiddie knife. I chose too small a bowl and scooped up popcorn from everywhere.

I took it to bed and waited for it to be time to have a phone call with the home organizer we want to meet. In my inimitable mania of late I led off by telling her about design thinking, what it is, how I learned it, and how I applied it to my kids’ Legos and then their bookshelves. It was almost like I was applying for a job, not trying to hire her to declutter our home. Anyways, I was happy to hear about her style (when I finally shut up) and we made a date for Wednesday.

It was 5 pm and time to sign on to chat for the night. I had emailed my colleague in advance to let her know what’s happening with me, because I didn’t know how I’d feel (after last fall’s chat night malaise). I started getting leery about saying all this via chat lest our boss review the transcripts.

Around 5:30 my phone dings with a text:

I couldn’t be sure, and then I knew who it was. A! My boss! The person I’d wanted to talk to all day. I tried to arrange things as quickly as possible.

To A’s infinite credit, she came. Even when I told her we’d meet in my bedroom. I stayed under the covers like an invalid, which I well and truly am. There was a chair for her. I had taken a break from chat for 20 minutes, prearranged with my colleague.

I began at the beginning – April 2013, my melanoma. I have been getting good at the condensed history. Especially in written form. What I am not yet so good at is narrating it to my very own boss, while she is sitting in a chair near my bed, in a track suit, because she just got back from Palm Springs.

I began crying almost right off. But I shook it off to talk again, and had to shake off a number of tears until I was done.

A was the best listener ever. She waited for me to compose myself. She waited until I was done. Then, she rationally went through what she thought she should do (talk to HR). She asked me what I wanted to do – take time off and come back, or leave?

Honestly until that moment, I had no answer to that. You’d think, it being the central reason I had her come talk to me in my bedroom was that I had a decision to give her. It wasn’t like that at all. But she did helpfully point out that it’s not a telecommuting job, so being there is really key. Of course. And there is one hour away by train. There is no changing that.

So, I decided it was time to stop working. I was sad. I told her how much I have enjoyed the work, the colleagues, everything. After all, I was just back to the field after seven years, and it was great to see I still had what to contribute. I still had skills. I could still connect.

It felt mildly like a breakup. Even weirder because outside the room, the family was eating dinner when we came out.

Except it was nothing at all like a breakup. A instantly and completely. became a friend. She told us of her and her partner’s upcoming baby. They live very near our house. I told her I was happy I’d get to see them around with the baby, and my kids love babies.

It started with tears, a crazy shitty story of my health, and it ended by our front door, her giving lots of high and low fives to Young A as he shrieked with laughter.

Did I win the unemployment due to illness lotto today? Yes, I did. And now count A as a friend. Goodness abounds.

Not sure why it took all these days to find it, but with this GlaxoSmithKline UK marketing literature I finally achieved immunotherapy marketing nirvana (I think the drug is Novartis’ now, for drug score keepers keeping score at home).

I don’t want another dry leaflet I have to scan for the answer I can never seem to remember (no food for one hour after or two hours before? One hour before or two hours after? Fuck it. Cancer brain. Porous.)

Now I can imagine getting the answers I need in plain, narrative, comforting language with mugs of cocoa nearby, written by (I’m guessing) an English major who long ago cast their lot with big pharma. Good on you, hope you cashed in. You just made my afternoon.