It’s the weekend, and I’ve pushed hard all week to turn this place into a present-day media entity of some sort. I’ve learned a lot, I’ve lots more to learn, and I’ve definitely got to add all this stuff to my CV.

But – and I hope you will forgive me for a little silence – I have GOT to manage my rest better. I managed a 12 minute nap this afternoon – and I know this because I set a timer for 20 and woke up when 8 was still left.

I may not post until Sunday night. I am feeling fine and you shouldn’t worry at all. There is some value in shutting up for a while!

And of course Sunday is a special day for me – the boys made me turn my back as they produced my gifts from their backpacks and put them on a shelf to not be touched until Sunday. I will not peek, because I promised not to.

I camped out at the other cafe from 9 a.m. Was scheduled to meet T there at 10 to talk poetry. But first, met a fellow school parent and caught him up on my illness. Then, my long-lost friend J from the gym came in. We caught up and I saw latest pics of her delicious toddler. (We also talked gamma rays, because she is a physicist.)

She leaves and I drift right into a conversation with a blogger who’s had a hard week. I tell her I’ve had about three hard weeks. And all of a sudden I am meeting a new person – something that isn’t supposed to happen that often when you’re my age, or so I’ve read. But my cancer gregariousness knows few bounds.

Then while waiting for T to arrive I read more poems from my friend’s newest collection. They are arresting and after reading three I decide I need to save them for a place where I can hyperventilate after reading, without anyone fearing I’m having a cardiac episode.

T shows up, buys some yummy treats to share and shows me a beautiful dragon story/parable/dream she has just written. To me it seems like a fully-formed children’s book, lacking only illustrations. I bet she’ll do it, too.

I show her my hip hop lyrics which need much tightening up. Much. I can’t be telling my entire life in this one song – much better if I just focus on the drug names and making fun of them. Yes. To work on later. This weekend, maybe, although this weekend includes a trip to Allentown PA to celebrate a 103rd birthday (J’s grandfather) and of course, Mother’s Day.

I finally leave the cafe and amble up the block and remember my toenails. They are scary enough the boys have started to show concern. I cross the street to the fancy place I’ve never tried and there is no waiting. Suddenly I’m springing for the full spa pedicure. Today there have been two articles circulating on nail salons, one informative and historical, the other deeply disturbing.

My own feelings are mixed. I hate service providers who are so clearly in a subservient position and taking care of something truly gross, my feet. I have the feet of an 80 year old, thanks to a genetic predisposition to bunions, which forced me to stop running. I once overheard a pedicurist talking shit about my feet in Spanish (she didn’t know I could understand) and while I put her in her place, I also knew she was right.

My last pedicure was in October, getting ready for perhaps the last wedding we’d attend until our kids get married. Our friends J & H were getting married, and I had to have good toes. So I submitted myself to the process I enjoy about as much as minor surgery.

I look back at J & H’s wedding with such fondness. I had an excellent time there, seeing some people not seen in a decade or more, and I was hyped up at the start of my treatment and still feeling good and amazing, someone who had actual cancer in my lungs and you’d never know it! How we danced. How we hit up the photo booth, once even with a borrowed baby. It was a singular night, and it was walking distance from home, and there was nothing at all wrong even though I had cancer.

This morning I looked at the remaining cracked red polish on the tips of my snaggle-toothed big toenails and knew something needed to happen. I hope the boys like the color I chose. I do.

I’m spending a lot of time on social media (if you hadn’t noticed). Soon I will need to come up with some ground rules to get off of social media from time to time. But it’s been an immersion week for me, I’ve learned some mad new skillz (still honing others), and I’m energized.

On social media you get to find out when it is the week or day to appreciate certain types of people. And this week, I discover, is both Teacher Appreciation Week, and National Nurses Week. At this particular time in my life, I cannot express my esteem for these professions highly enough. But of course, this is a blog, so I have to try.

This week, and every week, rain, shine, sleet or endless sleet, the teachers and support staff at my childrens’ school are there for them. They are there for us. They are there with hugs for Young A when he’s scared because Mom is sick. They are there to coach Young J through preparing for his first standardized tests. My kids bring challenges to a classroom. They are inattentive, sometimes spacey, they don’t always come when they are called, usually because they are too busy reading. The patience and love with which they are met, the respect they receive, and the tremendous knowledge they gain, every day and in every possible way, springs forth from these amazing life forces that are their teachers, therapists, counselors. Whom we have seen working late into the night, and emailing us early in the morning. Tirelessly. Gracefully. Because they love our kids every bit as much as we do.

I have admittedly felt a bit lost the past three weeks. Rug pulled out from under me. The steroids practically gave me a personality transplant and launched this blog into outer space. I needed some grounding. And guess what? I returned to my teachers this week. I sent a few emails into the distant past this week – to reconnect and say hello to writing teachers, whom I remembered with such fondness. I needed them to know, not just about the cancer – but that I’ve been writing! At last! And I heard back. And they remembered me, and were kind and compassionate and happy to hear from me.

(Having worked for years as a librarian, on the periphery of teaching – or engaging in teaching with means to very specific ends – I have had occasion to hear appreciation from students I worked with, years later. They have told me I was a good librarian. Personally, I think they remember my jokes. And that having a librarian who made jokes made it easier for them to ask me for help.)

But now I need to pay homage to nurses, because it is their week too. And here I cannot claim the depth of experience that I have with teachers. I’ve been a lucky person, healthwise, my entire life. I did not experience any protracted illness as a child – nor did anyone in my immediate family. I did experience the depth of compassion that nurses could give during end-of-life care for my grandparents – I remember thanking my grandfather’s nurse for attending his funeral. “I loved him, too,” she said. But really, for most of my experience with them, nurses have been largely intermediaries, the ones who gather the data before the doctor comes in and tells you what you’ve got.

When I gave birth to my first son, the labor nurse was much better than my OB/GYN at coaching me through an unexpectedly short Mack truck-style labor. With my second son, I was lucky to work with a nurse midwife, and I gained new insight and respect for that corner of the field. She coached me through an eleven-hour labor that had me literally begging to leave my body, it was so grueling. (I also lucked out because I now count that nurse midwife, S, as a friend.)

When you enter Cancerland, you suddenly gain access to and knowledge of an entirely new paradigm of nurses. I know I have. The nurses in my melanoma surgeon’s office took the time to ask how you’re doing, and they’d listen. The radiation oncology nurse consoled me when I sobbed because the awful burn on my back was taking forever to heal (and because it is a teaching hospital, I was also dealing with two residents in the room who hadn’t aced a course on compassionate care yet, and stood there staring while I sobbed).

Since metastasizing (I mean, since my cancer did), I’ve been under the care of a medical oncologist, Dr P, and her unparalleled duo of nurse practitioners, K and R (and for a brief time, Research Nurse C, until I was dumped from the research study for “flunking” the drug).

I’ve written about them a lot on this blog. Mostly, the laughs we have. And the warnings they give me. And the way they make fun of me when I deserve it, like when I get all excited and eat avocado salad when I’m clearly headed for a giant immunotherapy-induced showdown with colitis, and I make myself sick as a dog.

I looked up Dr P’s bio on the hospital website one day, and I discovered an amazing thing about her. That she is a nurse too – that was her undergraduate degree. I instantly knew I was dealing with a very different type of caregiver, and in that moment also understood why the nurses she hires are so different.

I’ve learned a lot in the past two years, and perhaps even more than that in the past three weeks. Nurses! Teachers! None of you are being paid what you deserve. You take our pain, hope, fear, and longing home with you every night. And you bring light and good and smiles into what can be very dark places.

Thank you.

I had another busy morning. I sat at the cafe for a while with my laptop and for once I was doing stuff and did not feel like a fraud. But I was working on a flyer to try to get our block party (a month away and very far from being planned) going. There is such a lack of civic engagement on this block (though there has been a petition circulating about a speed bump). I feel like in the past few weeks I’ve become one of the block “types.” I’m just around a lot, with plenty of time to talk to anyone and pet any dog. It’s nice. It’s weird. This has never been my function in any society I’ve been a part of. (Except maybe my dorm in college?) So… why not try to go all roid rage on the block party, see if it actually happens this year?

Bad timing for the roid rage because I got this today:

A pill cutter.

I’m down to 1.5 doses a day. Yayyy! Oh, the spray bottle? That’s to put water in to spray my hair and reactivate hair product when I take off the hats I’m wearing everywhere these days. Thank you to my all-things-hair guru, A, for suggesting it.

I’m home and should have napped but had a phone call with a counselor from Young A’s summer camp, to get acquainted. Also, naps will be harder during the day because:

They had a lawn. They had kids who played on it. What the hell are they doing with it now, paving it all over?! All I know is it involves a lot of sawing and drilling. I hate napping with ear plugs in. So I’m going to need to keep knocking myself out for a while. White wine in the afternoon, the heavier stuff at night.

All of this could be much, much worse. I am aware.

No, sillies. I’m not having an evening out. I’m even-ing out. Today was my last day on two steroid doses – tomorrow I’ll go down to one in the morning and only a half in the afternoon. Damn. Forgot to buy a pill cutter at pharmacy earlier. I need more steroids to remember this sort of thing. These pills are tiny and I’ll never manage on my own. My hands tremble a little, but it’s getting better.

This all came down like a bolt from the blue. And, as I see on the calendar now, a mere three weeks ago. I keep thinking it’s been months. On tax day. That’s when everything went to shit again. (Figures.) But what a reversal again in three weeks.

In other drug news, I’ve reached the end of my starter bottle of dabrafenib, which as you may recall I was “gifted” at the beginning of my treatment. Its label was partially torn off, because it had belonged to another patient (whom I am fairly sure I was told has survived). Tonight, I start my very own bottle with my own name on it. Legitimacy!

We’ve started working with a home organizer. J struggled very hard to not honor our appointment with her this morning, and I bared fangs, but he came through, and there are bags and bags of old electronics and crap on the way out of this house. I took my first unmedicated nap in weeks while they worked. Then she spent an hour with me. Exhibits A & B:

I’ll be sleeping much better next to Exhibit B tonight. I’m sure of it.

J needed to do some work in the afternoon, and we don’t have a sitter to pick up the kids from school on Wednesdays, so I had to do it. First Young A, from his after school art class. He told me about his new teacher who started today, and will be working with him an hour a day to improve his social skills. Over a cupcake, he assessed that his new teacher is “blonde, about 42, and she sure likes to boss me around!” I think she’ll do nicely. In another completely random rose the universe has lobbed at me, I made a new friend at the cupcake shop. We have all kinds of things in common, and she’d just recently moved here. The extraordinary coincidences are becoming commonplace, almost.

Then we went over to Young J’s after school soccer class. The last time I really watched Young J play soccer, it was classic ADHD. He was playing goalie but gazing up at clouds, the ball rolled into the goal, and he cheered for the other team. I didn’t mind, I would never mind that – we aren’t particularly sporty folk, and if you haven’t guessed, I happen to very much like people who defy expectations, and maybe sometimes let people down. Because what is more human than that? Today, he was goalie again, and I saw him tracking the ball better. He stopped a couple. He didn’t stop a couple more. But he was enjoying the game, the air, his friends, all of it.

I had a cupcake for him, but it was close to dinnertime. It takes precarious handling when Young J is this exhausted. He is in school until 4, and an extra hour of soccer, on top of seasonal allergies, can make him melt down pretty handily. I had a plan, though, and it helps Young J if you have a plan. I offered him either protein or a banana as soon as he got home. Some ice water. He ate the banana. Young A settled into the armchair to read himself a graphic novel that is probably way beyond his comprehension, and I sat with Young J to do math homework. It’s been weeks since I did – J or the sitter have been. I saw he has progressed to division. I was nervous. We had some tense moments. His body was exhausted and wanted to curl into a ball. I didn’t yell. I was firm though. And after a bit, he picked it up again. He started solving division by turning it into multiplication first. I got to see his mind working, almost like one of those hand-crank music boxes. What a mind it is. He plowed through math, I didn’t bother with spelling (he’s a bee champion in the making, I think), and he practiced his Hebrew reading and did another worksheet in Hebrew. He has one chapter of a book to read for tomorrow. He can do that after breakfast. What a kid, my kid.

I got some pretty lovely gifts today – one friend’s Kindle book and another’s new collection of poems. And I’m finally in a state of mind to read again, so good timing. All the books I wasn’t reading are cleared off the nightstand. Except Farmer Boy – Young J, you and I have a date. Whenever you get back from being out on your scooter, that is.

I always sing this to myself when I’m having a good day. Now you can too. Magical things are happening in this world.

It’s been a day. Putting yourself out there on social media is more time- and soul-consuming than I’d ever imagined. And because I continue to do this anonymously, I’m running up against some cross-platform integration issues. Anyone wise and can help me around them? It’s nothing I can’t just copy & paste between networks, of course. But I’m trying to learn everything at once on less than 100% brain capacity.

The morning began peacefully. I enjoyed a long chat with S at the cafe. I told the cafe’s resident published novelist M that I hope one day I can have a real, live writing date with her there. She’s been camped with her laptop there as long as I can remember.

As I spoke with S, a woman approached me with a note. She’d seen me in the neighborhood, and also at the cancer center. She was making an approach. I was so amazed and so grateful. All this time, I think I’ve been avoiding making meaningful connections with other patients, as though I could exist on this weird immunotherapy island until I am rescued. All I do on the island is blog, though. The past couple weeks I have been relishing the most wonderful human connections, meeting friends, talking with them, and (thanks to being on half the steroid dose I was last week) actually listening to them talk, too. I’ve learned a lot about my friends. I’ve learned how much I appreciate them, too.

Last night I was mentioning something about my medicine to the kids. I can’t remember why, I didn’t just bring it up randomly. But I did use a phrase I hadn’t used before. I said the medicine was “saving my life.” Young J looked a little strange. I may have repeated the phrase. And then it dawned on me that I have at no point told my children that I have a disease I can die from. That has never seemed like a productive thing to say, and I’m benefiting from a treatment that has so far shown such success, it just didn’t occur to me to tell them. It’s bad enough I’m inflicting on them a level of anxiety and stress I never, ever endured in my own childhood – why clue them in that people die from cancer?

I don’t know if he dwelled on it long, but – you guessed it – I did. I decided that I was every bit as bad as Roberto Benigni in the wretched Shoah movie he made, Life Is Beautiful. I remember going to see that movie with my cousin when it came out. I was full of anticipation. I loved Benigni’s work before that point. But the movie sickened me. My family connections to the Shoah are too close to be able to take a movie like that at face value. My cousin and I left the theater and it became very apparent immediately that we had each seen a different movie. She was charmed by it. When she learned I was not, she turned on her heel and walked away. I walked the other way down Houston St.

It’s a little heavy, implicating myself in perpetrating fraud to get my kids through this tough time. But at the end of the day, a day spent tugging social media every which way to see how it might work for me, a day spent not eating enough and certainly not taking the nap that would have easily come if I’d only let it, that’s where I am.

I got a package from a dear friend across the country this afternoon. Her son (who is the same age as Young A) made me the most beautiful worry doll, with red hair like mine, even. I’ll share it with you, because I can’t show the kids, so they won’t worry. Thank you, dear, sweet S and Young S, all the way across the country.

I’m just wrecked today. I slept well last night but I have truly misspent the afternoon – no nap, and not even anything to eat since about 9:30.

But I do have this to show for it: https://twitter.com/IllLiveBlog Please follow me there. I’ll endeavor to entertain you. I’ve been avoiding that place for ages in the fear it might swallow me whole. I won’t let it.

I’m heading into the mood swinginess of tapering off steroids. If I bother to look back to last fall I’ll probably find the entire process chronicled there in words. I’m feeling a little overwhelmed by the volume of writing here, lately. I’ve fallen down on the job as an organizer of information. But when the information is the stuff of your life, it’s harder to sit dispassionately applying tags. I’ve got some ideas, schema, and most importantly, friends who went to library school more recently than 20 years ago, so I’ll come up with something before we all drown. Promise.

I had the best day. I’d say my conversations with my dear R, N, and W were the best – and you guys really are and I loved seeing you all! – but maybe the thing I was proudest of was dealing with a broken fridge. And not falling apart because of it. And now the fridge works again (the guys said it would work “forever” and I’m not sure what that means for fridges back in Russia where they’re from, but I hope they’re right). No, maybe I’m proudest of stopping at the wine store on the way back from the park and getting some cheap chilled sauvignon blanc to sip in bed and ponder taking an actual afternoon nap. I did not, of course, nap. I was too excited about the setup.

I am having total recall these days about things from twenty and more years ago. It’s either the wonder brain drug, or just a hell of a lot of free time. I reached out to a beloved poetry teacher from college, to see if he could help me remember a poet I heard read in what must have been 1990. By the time I got his reply, I’d found it! The poem! The poet! And then got the most wonderful reply from my teacher. I am holding my teachers especially close these days. The good ones. And I was so lucky to have so many good ones.

This is the poem, if you’d like to read it. I tried, but failed, to find audio of CD Wright herself reading it, but she has a very gentle accent from Arkansas, and the last two lines you need to read in the style that people do these days, emphasizing every word with a period in between. Actually, I want you to go off and read this poem to yourself out loud. Now I’m giving you an assignment.

I let J out to play basketball tonight. Thanks to R sending us Indian food for dinner there was not the usual anxiety about cleanup. I had Young J plow through his homework and then let them have after-dinner TV (which is kind of unheard of around here). Then with ten minutes to spare before pajamas, I pulled up recordings of J’s songs and played them for the kids. They’d heard them before but I think Young A was less familiar. He was rocking OUT. They both were. I missed J, but I felt good and sneaky, creating these little fans for him here. Then Young A and I played a throw/catch rhythm game on the drums. It’s been a while. Cancer has suddenly made me a much better mom. At least I hope so.

While we listened to the music and they stroked my arms I was suddenly confronted by their ragged, filthy fingernails. I am the primary fingernail caretaker around here. It was always thus. So after they were pajama-ed, I brought out this Hello Kitty set I was given for my seventh birthday, never used and somehow never gotten rid of, and decided to teach these boys what a fingernail brush is for. They loved it.

I’ve been thinking a lot about Frank O’Hara’s poem, “The Day Lady Died,” in which the technique of skirting the issue, forestalling, not telling until almost the end what has happened, evokes the day of the death of Billie Holiday. The other poem he reads above, “Song,” is different but offers that same kind of flat delivery. Something happens and another thing happens and a sequence is presented. And we’ll make sense of it all later, over a drink. Note to self: Have that drink tonight. The Benadryl-narcotic-melatonin triumvirate last night asked after its fermented friend.

I’ve been talking a lot today – to my good old friend N (we met in a poetry workshop years ago) and my friend R who I met in the cafe, and also to the two burly but sensitive Russian men, absolute angels, who swooped in and fixed our suddenly broken fridge today. I keep experimenting with the telling of my story. Yes, the steroids are releasing their grip, but I still told the repair guys I have cancer. And they took as good care of me as my own husband or a doctor would have, they told me everything would be fine. (And if I wrote a check to Cash, no tax.)

I’m feeling lighter than I have in weeks. The burrito I’m pondering having for lunch may temporarily remove this feeling. But then! I’m meeting W in the park for a walk with my brimmiest hat. It’s a perfect spring day. I feel all right.

As I’ve mentioned here before, I don’t have a lot of experience with cancer. I am the first one in my immediate family to get it. We have known people with cancer, but my experience with it was not at the closest range. We experienced grief from losing loved friends – including one of my dad’s oldest friends, to one of the most evil of them all, pancreatic cancer. We have mourned cancer losses.

More recently, I have happily celebrated cancer successes. I have friends who have survived! But I wasn’t with them at their bedsides as they struggled. We weren’t that close. They didn’t live nearby. I was a donation friend, a supportive comments on Facebook friend, a make a mix of good tunes for the hospital friend. That’s about all I did.

The most extensive time I ever spent engaged at all with the concept of cancer in any way was when I had a job, over the course of several summers and holiday breaks, at the National Cancer Institute, in Bethesda, MD, in the early 1990s. It started as a temp job. A clerk-typist job (later relabeled “office automation” to sound more up-to-date). As I approached college graduation, they got the wrong idea and started talking about sending me to medical terminology courses.

I was not working in a lab. I was on an administrative floor, just down the hall from the Director. My boss, Dr. S., was a Deputy Director. She was very nice (and she, too, now, is gone, from cancer). She was classy and mysterious and I learned she had lost her husband in a sudden and wrenching way while they’d been on vacation somewhere nice. She had a weekly hair appointment. She was a scientist Katherine Hepburn. I barely had any work to do for her. I think she kept her own calendar. And how could she depend on me, really, if I only showed up in the summers and around Christmas? I answered phones, and probably typed stuff (I typed really fast). But my main job was to get up from my desk and walk over to the computer table and log in and out of a tracking system scientific papers written by scientists in the labs, which Dr. S. needed to approve before they were submitted for publication.

In order to log these in, I had to read the titles. And some of the titles scared the shit out of me, at first. Incidence of cancer among broccoli eaters in Japan, was one common theme. A lot of these papers were out of epidemiology, and if you’d bother to skip ahead to the end, you’d see the good news: There was none! Still, there were enough scary-sounding studies to bring this song constantly to mind. I did learn good lessons, though, on reading scientific papers intelligently. Many media outlets today still have not learned these lessons. So for that alone I was grateful for the drudgery. I learned how not to let science scare the shit out of you for no reason, especially if you weren’t actually going to be doing any science yourself. For about five minutes, I got excited about epidemiology, because I saw the CV of one of the epidemiologists and saw she had done undergrad in Art History. I wasn’t going to ever be good at the math, though…

Boy, it sure sounds like a sleepy office. Let me introduce you to my office mates. There were two other secretaries, so our desks were arranged in a C shape. One, B, was more pleasant to talk to, although she did like to talk too much. I will never forget her malapropism when discussing her proclivity for watching Tarzan movies in bed on weekend mornings. She said it was one of her “childless wimps.” She was the secretary for the bon vivant Dr H down the hall, whose job I think was to organize an annual conference. They knew how to work not too hard.

The “power” secretary in the office was P. She was petite and buttoned-up and I couldn’t stand her. Her boss was the imposing Dr A. I didn’t like him much. And there was a lot of intrigue going on in the Division while I was there. A Chicago Tribune reporter calling and harassing on the regular, eventually publishing this about it all. Which meant, yes, this guy reported to the big boss. Once, he came in for a meeting while I was at lunch, and when I got back, he was sitting at my desk. I stood there, arms folded. Finally, he looked up. “Oh, is this your desk?” he asked. “Yes,” I replied. I was also there the day his deputy lab chief got sacked for taking kickbacks from big pharma. Kind of exciting and weird. Lots of phone calls, non-stop. P took them all.

My favorite day was the one that P was out sick. They had to send a senior secretary from another location to replace her because I was clearly not up to snuff. C, the replacement, was a lovely woman. I enjoyed talking with her. She was also a Jehovah’s Witness. Dr A blundered in from lunch and on his way into the office, turned to C and said, “If anyone calls, I’m not in.” C drew up to her full height and said to him, “Dr A, I am a Jehovah’s Witness, and I am forbidden to lie.” Missing zero beats, Dr A turned to me and said, “Take the phones, will you?” (Obviously, it is OK for Jews to lie.)

Where was the cancer in all this? I mean, it was the whole reason for the place. Across the street was the clinical center. I had to go over there once on an errand. On the way down in the elevator, a patient in a gown brushed against me. I came back to the office and noticed some dry blood on my arm. That was the closest I got to anything. I didn’t have any broken skin on my own arm, so no major risk. I scrubbed down and vowed I’d never get sent over there again.

It was a summer job. It earned me money for CDs and books and my semester in Italy. Now, at a remove of 20+ years, do I stop and think, THAT’S WHY YOU GOT CANCER! No. That’s preposterous. This disease is wicked random. My number came up.

Post script: I was there to attend the gala farewell luncheon when Dr A retired. Those guys don’t stay retired for long. He is, as far as the last time I checked, the medical director of a trade association representing an industry that promotes a product you could scarcely imagine a former director of a federal cancer research program stooping to do.

And it just makes me love Dr P all the more.