2013 Pasadena Showcase House for the Arts Youth Concert, by Karol Franks on Flickr, licensed under Creative Commons

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.

Marketing love


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.

Sweet sweet sleep

to face: a tired sea lion, by Martin Fisch on Flickr, licensed under Creative Commons

I got a whole extra hour last night, and feel like a new woman. (Also a new woman because I think the meds are changing my face in puffy, red, unfamiliar ways, and it’s been days since I felt I looked remotely presentable.)

What did it, the sleep? I was out after the kids went to bed. Met my friend S and we went to visit C, my favorite bartender down the block. He is legendary for his mojitos, and boy did I need one. I settled for the passion fruit juice that’s usually in mine. S had tamarind. It was delightfully subversive to be sitting in a temple of liquor and not drink a drop. C usually likes to share out and join us in a shot of mamajuana. Skipped that last night too, obvi.

But the salient reason for being there – talking with S (no stranger to her own medical woes in the past, and a most wonderful friend who happens to live a few doors down) and also C, who has the bartender’s gift of fading in and out of convos appropriately (never, ever intrusive), was the point for me.

I am in perpetual search of conversation these days. I could just set myself up on a bench with a sign. The people I could talk to in the course of a day. All my fave neighborhood people. People I’ve never spoken to. Crazy people (as long as they don’t smell too badly of pee). Maybe one of these days I’ll do it.

There’s a bench on our corner installed by the city a few years ago, part of a program to get old people places to sit. I don’t know who requested ours, but the day they put it in, I was out on a rainy walk with Young A (age 2), we were at a loose end for what to do. From under the dry cleaners’ awning, keeping dry, we watched the men drill holes in the sidewalk and pop the bench right in, a lovely contemporary design. Young A had to stay until the last man left. They saw his interest and one of them took a rag and wiped it up for him. He took a seat. He climbed up and stood on top. He was the very first person to sit on our beautiful new bench the city brought us.

It is Young A’s bench, forever. Things like this, and a million more, make it hard to ever think of leaving this place.

( I promised J I wouldn’t embarrass him on this blog so the last thing I did last night is censored.)

If you aren’t bewildered

puzzle-door-closed.jpg, by r. nial bradshaw on Flickr, licensed under Creative Commons

My first post coming off of Lorazepam dreams. Be gentle with me as I sort out language.

I’m talking to the boss this week. She needs to know what’s up. She also lives close to my house, so am hoping she can meet nearby, in lieu of us each traveling an hour by train to talk. I’m also considering going to my staff meeting to talk to my colleagues. But not sure yet what I’ll tell them as far as my employment status. Boss meeting first. I do need to and want to let everyone know what is up with me, because so few know.

The kids were lovely today but I think enough got to be enough. I’m hoping if I can regain strength at home I can be a more engaged presence. They need that from me. Not a crashed out sleeping mom.

Sleep is tough. It seems to wind up around 4:30 or 5 and then I’m wide awake until late afternoon. The afternoon nap needs to happen by Lorazepam force, and even the force isn’t strong enough to vanquish the power of my phone, sometimes.

I learned this morning about something I’d like my family to go do next February. A trip, but not only. The costs are prohibitive and it just feels crass to think about on a day so many have lost so much in Nepal. I am standing by to direct a donation there. Please speak up if you know best source.

But I cannot help myself, and am conceiving of a Kickstarter that might make this work. I love the idea of most people giving $20 apiece and facilitating something extraordinary for us. There is some time pressure to sign up for the trip before it fills, too, so that makes this all very urgent. I’m hoping that by tomorrow I have either found a road ahead or been able to write this off as today’s obsession, to be replaced with tomorrow’s. We shall see.

In the meantime, J ordered me a new laptop I’ve been coveting, and I am halfway through some lyrics for a rap song about my cancer drugs. (Life is weird and keeps happening and what is bad about that?)


It starts right here, in Maldives, by Nattu on Flickr, licensed under Creative Commons

I’m just wondering how exactly my life broke open into something extraordinary. The past week has opened new vistas, some of which I could never have foreseen. I am full of gratitude, and that is something I’m pretty sure I’ve heard isn’t too common in cancer patients. Perhaps I can thank the spring. Perhaps my brain, for not leaving me in the lurch. The world seems to be taking notice of my potential creative talents. It’s been a long hiatus in that regard, and I can’t say I mind a bit to be on the receiving end now. Keep those offers coming and I’ll actually do things now beyond just talk.


"Ichwan Noor (b. 1963): Beetle Sphere, 2013 (Aluminum, polyester, real parts from VW Beetle '53, paint)" , by See-ming Lee on Flickr, licensed under Creative Commons

Things seem so much less random tonight. A lot more solidity, even as the margins of the unknowingness are still so vast.

A good meal can do a lot. I had a good meal. While I slept the sleep of Lorazepam this afternoon (the kind of odd sleep you fight to attain, then fight later to shake off), J made the most fantastic dinner for us. Roasted veggies of every type. Steak and salmon. Salad.

My friend K was coming over for dinner for the first time. An artist I’ve known for a bit, but not really hung out with before. After some initial misunderstanding about when we wanted her here, she came, and even though Young J had been keen to have her here during the Shabbat blessings, so he could explain them to her (she’s not Jewish), she got here late and missed them. But we talked about them anyway. She looked amazed by the boys. It was easy to feel that way about them too. The night had an irreversible charm.

After dinner, my friend K looked at Young J’s art portfolio. It was so wonderful to see him take such pride and explain, and to see what K took from his work. She also spent a little time showing us her constant performance/interactive piece, which is a man figurine who lives in her pocket, who is not the same race that she is. I started using this to introduce Young J to the ideas of otherness, alienation. It’s heavy, but his brain gets heavier daily and this stuff is so interesting, I figured I should just try.

The boys were up so late, beyond all reason, especially since they’ve been rising much before 7. The daylight is encroaching – when I woke from my Lorezapam nap, I found pajama pants covering my face to block the light.

Less light, less light! Could Goethe’s own dying words have been wrong? Would less light have saved him? Turns out, he may not have said this at all:

The “Mehr Licht!” (More Light) quote from Goethe is disputed. It’s also claimed to be “Mehr nicht!” (No more)


I’ll leave you, as this gets progressively less linear, with an idea someone has proposed. Someone I know wants me to write a rap song which he wants to produce for me. I am seriously considering it.

Nothing is off the table.


tunnel-shaft-rush-blur.jpg, by r nial bradshaw on Flickr, licensed under Creative Commons

It never fails… It’s meant to be a chill morning, yet by afternoon it’s batshit in here. Am I a lightning rod? (Must not be discounted.)

This morning I took kids to school extra early so they could have fun on scooters before school. That’s fun when they are wearing their winter coats when it is below 40 degrees, which it was. I didn’t think they needed them. My poor children tried to have fun for me, truly they did, but they were so anxious to just get indoors.

I went home and waited for my friend D to text. We were having coffee and I upgraded our coffee around the corner to “let’s take the train to Manhattan and go to the good coffee place which is also around the corner from the optician’s where I have to get my glasses adjusted because for one week they’ve been sliding off my face.” She was game. And I was grateful to have a companion on the train – didn’t know how I’d do, especially at rush hour. (Fine.)

It was so good to see D. She came into our lives as a wonderful special ed teacher, who worked with Young J, all too briefly, years ago. She then wound up giving birth to her son exactly on the same day and hour as Young A, one year later. We’ve had a connection from that too. She helped out last time I was sick in the fall. She shopped for food for us this week. She is the ultimate good egg. She also has had a rough week with her 4 year old, so I was ready to commiserate and make sure she knew it wasn’t forever. Four wasn’t a picnic with my guys, either, so I could be a poster mom for it getting better. For once in ages I felt, somehow, useful again. This felt great.

We spent an hour having coffee, then headed to the glasses store, where I was in for a 20 minute wait for glasses adjustment. I found a chair, because I am now like an old man, living bench to bench. She had a good time trying on shades and used their fun photobooth. Then we talked some more. She needed to leave to get her boy, and I finally got my glasses adjusted – some kind of process out of the artisanal past. I heaped my adjuster with praise. She put them back on my face and I felt I’d been given a new face.

This buoyed me. I initially had been planning to go home, shove some food in my mouth and take steroids and sleep. Instead, I called J to see if he wanted to come down to get falafel with me at the city’s best. He did! I waited on a park bench across the street, freezing, until he arrived. Handsome as ever. My lunch date. The sandwich was everything.

I wended my way to the train slowly so as not to disrupt any delicate balance in my head. Stairs are slow. But I think I may have run a little, and found it okay.

The train ride home felt slow. With my meal in my belly, I was getting sleepy. Not a lot of passengers and I wondered if I should enlist one to make sure I wouldn’t miss my stop. I didn’t see anyone begging for that kind of responsibility. I powered through, then even more slowly walked up the stairs to exit.

My block, in sun. A lovely sight. But soft, what was in the doorway of my building? A missed package memo from UPS. DAMNIT. I had quite forgotten my cancer drugs were arriving today. They needed a signature. None of my neighbors were around (though it’s possible they wouldn’t have surrendered them to anyone but me). I looked up the block. Not one, but two UPS trucks. Double parked. I went like a madwoman towards them.

One UPS guy on our block is the legendary Johnny. He is devoted and never lets you down. The corner cafe has a drink named for him (which he doesn’t actually drink anymore since he went on a health kick). I knew finding Johnny was my key. If the trucks were empty, I’d check the cafe.

I saw some movement in one of the trucks. I picked my way through traffic and saw it was not Johnny. But I had to try. This driver was young, South Asian, seemed polite. He asked me for ID but did not make any promises. In minutes, he got my box, had me sign, sent me on my way. (Johnny, you are wonderful, but there are also others for me now.)


I wasn’t expecting something quite so dramatic as this bag… but with that kind of hot pursuit? I’d say it makes the whole thing worthwhile.

You can listen to this song here now. I’ve lived it, and now I’ll be sleeping for hours. (With drug help, yes please.)

100 Days

3:1 Days Go By, by TC MORGAN on Flickr, licensed under Creative Commons

Apparently I’ve blogged 100 times. It doesn’t seem like enough of a number and yet of course it’s also far too much, because what I’d be doing if I had my druthers is ride 100 miles on my bike, have 100 more darling kids, spend 100 more amorous years with J, eat 100 things I shouldn’t, compose 100 sonatas for the piano, write 100 collections of sonnets, meet with 100 students a week who need research help, visit 100 places I’ve never been, learn 100 more languages, earn $100 bazillion and give $99 bazillion away to what matters most. And that would be the first day. A good day, and I’d sleep well that night.

In the real world I’ll just keep writing this little blog on my little phone. Have some big ideas for new posts. Have a notion if I can spend any time sitting up in my desk chair I’ll finally get around to properly posting categories for these posts.

But really, this whole thing is just anti-death and anti-shit insurance, so I’ll just keep it up.