I’ve been avoiding starting this post for days now, since there are any number of directions it could go, and it feels even as I type this first sentence that it may run long and be disorganized “rangy,” yes, let’s call it rangy. I promise, no photos of cappuccinos or pasta. Y’all know what those look like. And no day-by-day travelogue. A few suggestions of what we encountered on the trip may be found in this handy slideshow (pay attention to captions, they may help).

I’ll write about one or two experiences we had, and, since I always have my cancer patient hat on, I’ll relate something that happened while we were away.

The first thing I want to say about the trip is, it definitely would not have happened if I hadn’t caught a case of cancer. At least, it might not have happened now. I’m still not earning anything that could be thought of as a salary. But one piece of advice that really stuck from my sessions with M., my therapist, who is a cancer survivor herself, was this: When you’re faced with existential uncertainty, you may find that you want to reprioritize some things.

Being the people that we are, J and I did not immediately decide that we had to fast-track that 30-day juice fast. (That is probably number 12,000,001 on my still-uncompiled bucket list.) Instead, we thought back with such fondness to our last trip to Italy, the year we got married, a pre-wedding extravaganza, which included my cousin’s wedding in Venice. And we thought of the kids, and how much they’d enjoy seeing Italy.

Last February, when we bought the plane tickets and got new passports for the whole family (mine and J’s had expired ages ago), it seemed like the trip was years away. I’d need to ace several scans before our departure. As a vote of confidence, we didn’t purchase any travel insurance, as I believe we may have last summer, before our trip to Colorado that came just three weeks after my brain surgery.

Everyone I told about the trip was so excited for us. I was excited for us. I was so excited, I couldn’t actually plan anything, in terms of coming up with a schedule for sightseeing or anything useful. I figured that travel with young kids would probably not lend itself to a rigid schedule.

I did eventually check out about forty pounds worth of guidebooks from the library in advance of our trip, auditioning each one for portability and lack of cheesiness. I hadn’t quite decided before we arrived on what my personal game plan would be. After all, Italy is hardly terra incognita for me. It is the place outside the US where I feel most at home. But I wouldn’t be there by myself or just with J, this time. I’d be immersing myself in Italian, swimming in the deep end after many years without regular practice, but also on simultaneous interpreter duty 24/7, my family depending on me for our every move and meal. Would my recovering brain be able to manage this without blowing a gasket?

In terms of the guidebooks, while just the name “Rick Steves” sets my teeth on edge (Steve should never be a plural, and I also have this nagging feeling it was changed from “Estevez,” and I hate that feeling), his guidebook for Florence and Tuscany pointed us in a fascinating direction, to a unique event I’d never anticipated witnessing, which was happening right when we would be there.

I handled all of our city accommodations via Airbnb, but J took care of finding the agriturismo in Tuscany where we would spend four glorious nights. After extensive research, he decided the Agriturismo Santa Maria, near Pienza in the Val d’Orcia, would be the perfect spot.

Since I knew we would be in that area, I checked Rick Steves’ recommendations for the region. In his writeup about Monticchiello, the small medieval town that was at the top of the nearest hill to the farm, he mentioned that the town puts on a play in the piazza every summer. Even though I’m not a huge theater person, this sounded interesting – a chance to possibly partake of something unique, special, hyper-local, steeped in history. My kind of thing.

I went to the website of the theater, and it turned out that not only is this summer the fiftieth anniversary of the outdoor theater, the play was opening precisely when we’d be there. I felt this was a definite sign that we had to go, and I emailed at once for reservations. I eventually heard back a couple of weeks later, and we had reserved seats for opening night!

Now, this all sounds terribly exciting, but the fact is, I was all excited about a theater production in Italian. And I am the only one in the family who speaks Italian. And the play started at 9:30 p.m., not a great time for the kids (although as it turned out, they stayed out late pretty much every night of our trip). I was undaunted. This was something we had to do. But J went along with it, under some protest. He didn’t know there would be something in it for all of us.

When we arrived at the agriturismo, we had booked a dinner with the family that ran it. This was an absolutely memorable meal. I’d never tried pecorino cheese with jam before — jam made from fruits grown near where we sat eating it. (And that was just the beginning of the meal!)

Over dinner, I did most of the talking (giving the rest of my family a chance to eat helping after helping of delicious homemade pasta). I mentioned to our hosts that we’d be heading up the hill for the opening of the play in two nights’ time. They seemed intrigued — I guess most non-Italian guests wouldn’t have considered it — and told us that if we were going to the play, we must eat at the tavern in the basement of the church which operates only in the summer, when the play is on. Maura, our host, said that they’d be using her recipe for pappa al pomodoro — a Tuscan tomato and bread stew that is one of the simplest and yet most phenomenal things I’ve ever eaten. (My Italian roommate in Florence made some for me in 1992, and I never forgot it.)

The following night, after a day of driving around the beautiful valley, we went uphill to have dinner at a town restaurant (which was a little stuffy and overpriced and not great for the kids), and to check out the town the night before the theater production opened. As we walked up the hill towards the piazza we saw people running errands, kids playing soccer by the church, and finally we walked right up to the back of the stage. A final rehearsal was going on. We backed away so we wouldn’t be in the way, and walked around to the other side of the church where the theater entrance would be. A woman beckoned, saying we were welcome to watch the rehearsal, but we didn’t want to spoil it for ourselves.

On the door of the church basement, they had posted the menu for the tavern that would open the following night. Everything sounded delicious, and the prices were shockingly low (e.g. glasses of wine for €1.50). An artist had installed wire frame human sculptures around the town which looked eerie, ghostly, lit up in the dark:

On opening night, we arrived at the hour the tavern was to open. Situated in the church basement, it had vaulted brick ceilings that to us recalled the passages at Grand Central Station. We were seated, and watched waiters scurry around the long space, bearing plate after plate of pici, the local pasta specialty. We feasted. The kids enjoyed being in such a noisy space, a welcome change from the quiet restaurants we had been subjecting them to, and they inhaled their pasta.

The placemat at the tavern offered a brief history of the theater, even more brief in English translation:

After dinner, there was still an hour to showtime. I decided to pick up our tickets. When I got to the desk, I found an old man trying to cajole the people working there to let him in, even though he didn’t have a reservation. I felt equal parts proud and kind of bad that I, a tourist from the US, had a reservation, and was in fact bringing three people in with me who had no hope of understanding a word of the production. (But it would have been mean to kick them out. I was hoping there might be at least something to entertain them outside of the spoken language.) I’m sure he got sorted out… and, he seemed like a local who might have another opportunity to catch the performance.

Once showtime arrived, we took our places in a line that wasn’t a line, it was an Italian-style mob, a crush of people. I feared for my children first, then my toes (I was in sandals), but all emerged unscathed. A woman pulled the obnoxious “oh, is this the line?” trick I used myself years ago when boarding Amtrak trains in DC. She edged in front of us, and I noticed she had a bright orange folder that was a press packet. Then I saw a lot more of those folders. The press was here! In this town of 200 people! I was excited for the town.

We took our numbered seats in the piazza (fourth row, church side) and watched the house fill up. The piazza was brightly lit, but we could still see stars. I saw the Little Dipper (the only constellation I can correctly identify) right above us. Even if nothing had come after this, if all we’d come to do was sit in the piazza of a medieval town and stargaze, it would have been fine.

Onstage, the set was covered up by white sheets. A stray cat found its way onstage and was shooed off. (We saw it again later, at the exit, waiting as though it were expecting applause.) Above the stage, heads poked through a window high above the piazza. We wondered what it might be like to have a nightly theatre production going on under your window.

After a 20 minute delay that gave Young J and Young A the chance to get truly sleepy, the play began. This year’s play was called Notte di attesa (Night in waiting). The general idea was that the town is under siege, but the siege is unspecified. It may be hostile forces from any source, and the hostility is perceived differently depending on who is speaking. It may be that the walls of the town are falling apart. Or the threat may be from human actors. Each character decides how to cope with the siege, based on his or her capacity to interpret the past and either learn from it, or turn away from it. As they spoke, the actors took the sheets off the set, folding them up. By the end, the walls of the town had been pulled up into place, and actors poked their heads through windows in the towers.

The actors on stage, in the Teatro Povero, are not professionals. They are townspeople. But some of them have acted in the town’s theater productions for the past fifty years. The play, which is written by the town each year, brings up many issues related not only to the specific history of Monticchiello, but things that impact all of Italian society. The recurring attempts of a young woman who clutches her cell phone and keeps having to repeat her name into it, over and over, trying to navigate unbelievable bureaucracy in order to find out if she is in the running for a job, was a situation I could easily imagine, based on my limited dealings with said bureaucracy, and my friends who live in Italy’s accounts of same.

Other things, like the repeated phrase of another character, “la terra non si compra, si conquista” (the land cannot be bought, it must be conquered), I had to Google, because I am a foreigner to this culture. It turns out that was, historically, a motto of an Italian agricultural political movement that was allied with Communism (open to corrections here if I have been sloppy in my research).

The character I found most compelling was the one who seems to succumb to madness, in the face of the endless stress of the town being under constant siege. He lays out a strategy by which the town can raise its profile by turning the fear into a tourist attraction. He laughs maniacally as he imagines the millions to be made from such an endeavor, and an elderly resident, listening in, then agrees with him. Capitalizing on fear, turning it into a commodity. That seems like a pretty universal concept, at this point. And yet, seeing this tiny town, which you just want to wrap in a blanket and protect from any more negative change — it is a horrifying thought, that it could fall into the clutches of such a project. The actor who played this role ate at our table the next night at the taverna (the second night, the play was canceled due to rain). I wanted to tell him how much I’d enjoyed his performance, but I let it slide.

In my limited experience of theater (I have never been much of a theatergoer, preferring live music, dance or film), I initially thought I could connect this theatrical experience to Our Town. But it is a totally false and unsatisfying comparison. In Our Town, each character in the invented town stands up and states their name clearly and goes on to enact a story that has been spread over the town, superimposed on it, a story which strives to be as universal as possible.

There is no way the Teatro Povero could achieve this type of global reach. Beyond its considerable cultural and linguistic boundaries, I don’t think it seeks to surpass its hyper-local reach. None of the actors stand up and introduce themselves, because this is an autodramma, a play about themselves and for themselves. And if you are an outsider, like we were, you don’t even get the satisfaction of knowing who’s who, which person is usually a barkeep or a builder or a retired hairdresser. The play is almost like a brainstorming retreat for the town, but in the form of a play, and with a really good restaurant attached. It’s practically utopian. But how homogenized a traveling company of the Teatro Povero would seem, having dumbed down its message in the hopes of achieving global understanding.

I’m sure I missed about 90% of what the authors of the play intended me to catch. My brain was pretty tired by this point in the trip, and while I made a couple of attempts to translate in whispers the action on the stage for J and the kids, I eventually gave up. They let the language wash over them, the kids were quiet, and the play ended.

As I’ve been thinking about the play this morning, as I write this, I want to connect it to a project that has been going on in my neighborhood in Brooklyn recently. Inter-Section | Prospect Heights examines the profound changes in the neighborhood that have taken place in recent decades, largely due to economic displacement of longtime residents and businesses. We have only lived here for ten years, which to some of our neighbors means we’re still newcomers, and to others means we are old-timers. There have been various events surrounding this project, but I have never managed to go to one. This city is so large, and even this neighborhood is larger than the entire town of Monticchiello. What could really bring neighborhood people together in the same way the Teatro Povero does, a way that not only reveals the change that has already occurred, but also captures the imagination in the way that only a live theatrical performance can? It’s something I’ll keep thinking about.

As far as more easily relatable experiences on our trip, I’d have to say the gondola ride in Venice is at or near the top of the list. I’d banished the thought of even taking one, because they do not come cheap (80€ for 30 minutes, before 7 pm). And I have a fundamental resistance to touristy things. But we only had two days in Venice. There was a lot we weren’t going to be able to do. So, on our second night, we set out to find a gondola stop. We weren’t staying very near the most touristed parts of Venice,  though — we were close to the university, which was quiet and charming, but meant we’d have to wander around looking for a gondola (we couldn’t find an online listing of stops). We set out at 6 pm and crossed a couple of bridges and hadn’t seen anything, but we did spot this museum housed in a former church, where models of Leonardo da Vinci’s machines had been built and were on display. Time was getting tight, and I worried we might have to put off the gondola ride until the next morning, which would have made our schedule very tight.

We spent about 20 minutes in the museum, and when we stumbled out into the early evening, a gondola stop appeared right before our eyes! It had been there all along, but we had our backs to it when we entered the museum. We rushed over. There was one gondoliere there, Roberto. It was 6:33 pm, and I knew the rate would go up at 7 pm to 100€. I asked him whether he’d give us the day rate for a ride, and he said he would.

We stepped in and immediately I understood the allure. Roberto gently paddled us around the quiet canals near Campo San Barnaba, only making a brief entry into the very busy Grand Canal. The ride was as smooth as glass. Taking a turn in a gondola is a dream, no rocking or rolling. Roberto hummed and sang, quietly, almost to himself. We heard a seagull’s cry. Early evening, and everything was silent. The boys’ smiles never left their faces for the whole half-hour. To think we might have missed this, for being penny wise. It was worth every euro cent. And I’ll be revisiting the gondola when I have my next MRI. And maybe even on my deathbed.

I realize that some come here for the medical drama, and here I’ve served up I don’t know how many thousand words about trip planning, theater, civic engagement, Italian culture, and the price of gondolas. So I will now abruptly transition to narrating my medical experience while traveling, in the hopes that: a) it will serve as a good cautionary tale for anyone who is on a Tafinlar-Mekinist combo and is going on a trip, and b) that you will have some laughs.

Before the trip, I consulted with Nurse Practitioners K and R about my meds. Tafinlar can travel at any temperature, but Mekinist needs refrigeration. Since all has been well with my scans, I asked whether it might be okay to leave the Mekinist at home. (Both medications stay in your system for two weeks, which has been helpful in the past when I’ve needed a break due to side effects.) I heard back saying that this sounded like a good plan.

We began the trip, and immediately I started having lots of problems with the timing of my Tafinlar dose. When I am home and following a normal routine, the three hour fast surrounding my twice daily meds is no problem. On vacation, you wind up having an extra coffee here, a gelato there, and keeping this schedule is impossible. After one or two episodes where I was nearly in tears because I’d been fasting for meds but then we’d stop at a fruit stand and I’d eaten an apricot or cherry before realizing I’d need to start my fast again… I was kind of over it. I skipped one or two doses of Tafinlar, and/or took them on a less-than-empty stomach.

A week into the trip, while we were staying at the agriturismo, my vision became cloudy in my left eye. At first I blamed my contacts, or maybe the chlorine in the pool. By the morning after the play, a Sunday, my eye was much worse. It was sensitive to light, and my vision was very cloudy. The reality of what was happening hit me like a ton of pasta al ragù: uveitis. Tafinlar-induced uveitis. AGAIN. DAMNIT. Exactly a year after the first one! And in the land of another, infamous sufferer of uveitis, as an Italian friend hastened to remind me with glee.

In the instant that I realized what I’d done to myself, I also realized how it could have been avoided. Tafinlar taken alone caused my terrible flare-up of uveitis last summer. When I also went on Mekinist starting last August, I did have a couple recurrences of uveitis, but the severity was decreased. In order to avoid uveitis, I should have stopped taking both meds for the duration of my trip. I felt like an idiot for not having thought of it sooner. But I was determined not to let uveitis ruin our trip. Here was my course of action:

Sunday: We drive to Siena, arriving at lunchtime. En route, I Google the name and location of the farmacia di turno, the designated pharmacy in Siena that is open on Sundays (most things are closed). I call them and ask whether they have the Prednisone drops I have used before. Nope.

We arrive in Siena and walk to the Campo, where we sit at a pizzeria. By the end of our meal, it is 2:30 pm, meaning it is 8:30 am back home, which means it is just at the outer edge of an okay time to call my ophthalmologist on his cell phone. I call, using Google Hangouts Dialer, which is a brilliant invention, because even though we have swapped out our SIM cards for Italian ones for the duration of our trip, the Google app thinks I’m calling from my US cell! Free call!

Dr D sounds groggy and says his father in law has just had a massive stroke. I express my condolences and bring him up to speed on my condition. He tells me to get Prednisone drops, or Durezol. Also, I need to get the cyclopentolate drops to dilate the eye (arrrrrgh). I tell him I’ll do that.

I leave J and the kids and take the three minute walk to the open pharmacy. They have the cyclopentolate drops, no problem. They do not have, nor have they ever heard of, Prednisone eye drops. They offer to try to get them for me, but I tell them I’m just passing through. I buy the cyclopentolate drops for €9.30. Longtime readers may recall why the price of eye drops is so important to me. Well done, Italy! I do so love a bargain.

I can’t get the steroid drops, and I know those are important for reducing inflammation. I decide to set my sights on Rome, where we will be starting the following evening, and see if I can get the Prednisone drops there.

I spend a lot of time searching Italian pharmaceutical websites. They identify what I need, but they don’t indicate if it is available for sale in Italy.

Monday: When we arrive in Rome, the only information I need from our Airbnb host is, where is the nearest pharmacy? While J and the kids explore the neighborhood, I spend a good half hour at the counter of the small pharmacy, trying to say the right thing to yield the Prednisone drops I need so badly. The pharmacist even comes out, a kindly and rumpled older man who has more patience than the white-coated women who work the counter, but at that point I’m stuck on Prednisone, and they just don’t have it.

By 10 pm, I am still researching possible solutions, and I think I have found a brand name to ask for. I find the farmacia di turno closest to where we’re staying which is open until midnight, and speak to the pharmacist. Vexol? I ask him. Do you have Vexol? He says he doesn’t think so, and goes off to check.

“Vexol,” he comes back to say. “No, we don’t have it. It is not sold in Italy.”

Okay, I say to myself. Okay, I found the brand name on an ITALIAN WEBSITE but it is not sold in Italy. Got it.

“It’s not sold in Italy,” he goes on, “but you might try the Vatican pharmacy.”

Right. The Vatican. How did it never occur to me? Let’s see… because this is MADNESS. I search the Vatican pharmacy to find their hours and in passing, I learn that it one of the busiest pharmacies in the world — 2000 customers per day. I envision sitting glumly waiting for my number to come up (only to find they don’t have Vexol or that I need a written prescription), while J and the kids take in the Sistine Chapel.

I keep searching and find a forum where regular Italians write in to get advice. A woman is very worried about her boyfriend who has uveitis! An Italian ophthalmologist answers her! They have a back-and-forth exchange of messages that almost seems like it was placed on the Internet for my benefit! And I learn the name of the drops I should have looked for all along: Luxazone. It is not prednisone, but it is dexamethasone (aka decadron, the steroid that made me a manic monster for months! I figure/hope that in eye drop form it hopefully won’t change my personality). I write it down, then go on to happily book Vatican museums tickets for all four of us.

Tuesday: The next morning, I go back downstairs to the pharmacy, and the rumpled elderly pharmacist hears my request for Luxazone and produces it immediately, with a “why didn’t you just say so” look on his face (or at least that’s what I perceive with my one good eye).

I use the Luxazone every hour, as Dr D had indicated. I dilate the eye about four times a day. I don’t keep very good track. But, I also keep in mind that the last time I went through this, it took months and months to get better because prolonged steroid drop use will raise the pressure in your eye to a dangerously high level, which then needs to be controlled with beta blocker drops.

As soon as my eye felt better, I eased up on the drops – no more dilating, and less of the steroid. In another day, I stopped the drops completely. My eye hadn’t been very red or irritated or photosensitive and seemed much improved. I have to keep my own counsel, because even though I’m not Patient Zero here — these cancer meds are approved and the ocular side effects have been documented, just not extensively, because they only happened in 1% of the trial group. I wish I could feel better about being part of the 1%.

Once back in the States, I go see Dr D for a previously scheduled followup. There are no cells in the vitreous. The pressure is fine. He dilates my pupils and finds nothing amiss. My vision is good. His father in law being at death’s door concerns him much more than the state of my eye, which is as it should be.

There’s so much more to tell. But I’ve told you a story from a Tuscan hilltop, another from the canals of Venice, and still another from in and around the pharmacies and websites of Italy (and the Vatican). My thumbs are tired — as usual, like an idiot, I have typed this whole thing on my phone. And I need to eat some lunch.

I’ll be back with something a little less far-reaching next time! Signing off with a selfie from Dr D’s waiting room, where I am wearing my new t-shirt which is the only statement I plan to make this year.

Ciao, for now.

We’re at the airport! We won’t leave for another hour at least. And while I will have phone service, I’m planning to go easy on the social media.

Stay cool, and I’ll be back!

I’m still waiting for the very busy Dr K to come in, but here are early results from today’s scan. On the left, the spot they treated with gamma knife last November. On the right, that spot today.

As a bonus, I found a tiger on my scan today.

Rrrrrowrrrrrrr! Onward to 100% focus on the trip.

Brain MRI tomorrow. Fly to Italy on Friday. Have to acknowledge the strong stench of hubris in the room in order to get past it. Actually, it is the peculiar stench of hubris + anxiety. Yes, they can coexist. The anxiety part is what keeps me from being 100% focused on trip planning, I think. Or else it’s the lack of sleep due to anxiety and anticipation of the trip. I think Dr K is imminently leaving the country too, which means even if there is something that needs doing, it won’t get done until we are both back.

I haven’t been even remotely symptomatic, but I did have a brief skin scare over the weekend which led to a visit to the dermatologist yesterday. A sort of humiliating one. Pro tip: Avid bicycling can make your skin do weird things in weird places.

Just to not leave you on that unpleasant note, here’s some encouraging graffiti I saw in the waiting room at Dr P’s last week. Sometimes the implicit needs to be made explicit.

I keep meaning to start a new post, and then life intervenes. This is good, life intervening. Except today, and for the past few days, but actually for as far back as I can remember, life includes contending with news of horrible deaths. Just in the past week: A thirteen year old girl stabbed to death in her sleep. Restaurant patrons hacked to pieces. Bombings. In this country, still more black men shot to death by police, on a daily basis. It is too much to absorb, but it is not possible to look away. It is not possible to accept it as the status quo. Because we are human.

So I have been focusing on the kids. How I can be a better, less lazy parent. (It’s easier to do that when they are in camp all day, and come home exhausted.) They are loving camp this year, even more than last. And they seem to be making real progress towards learning to swim, especially Young J, who is having fun swimming underwater to be sneaky when he plays tag with his friends, learning how to fence, and what LARPing means. Young A is in his glory, playing gaga and boating.

Last night, I needed to get sandwich ingredients for the boys’ lunches today, so I sent them around the corner with instructions and money. I waited on a bench out of sight. It was pure joy to see them succeed in their small enterprise! And to watch them carefully account for the change they brought back. (They haven’t been to the store on their own often enough yet to realize they could also buy candy…) Yet another moment I am so glad I haven’t missed.

Last week, I also heard live music – we all went to hear the Orpheus Chamber Orchestra in Central Park, with a Japanese pianist who has been blind since birth. We arrived too late to score seats or a bench, so we plopped ourselves down on the asphalt tiles right in front of the stage. It was uncomfortable, and having Young A sit in my lap, all forty-seven pounds of him, didn’t make it less so. But it was a beautiful night in spite of threatening rain, and the all-Beethoven program was perfect, and halfway through the first half, Young J and Young A switched places, and got sleepy, so I soon found Young J’s head nestled gently in my collarbone and I rested my head on his, and vowed I would remember that feeling as long as I get to live.

Two nights later, I was at Madison Square Garden for the first time ever, watching yet another band from the distant past, The Stone Roses, resurrect itself. It seemed as though most of the crowd was from the UK, which meant the concert had the feel of a football match. Lots of singing and rhythmic clapping, more than one usually sees at rock shows in the US.

Which reminds me. Last July, J and I and our friend T took part in the recording of a new album from a band of even longer standing, The Mekons. After the recording session, we waited with great anticipation for the result. At long last, one of the songs recorded that evening has made its way to YouTube. You can see me towards the right of the screen in some of the crowd shots (and T too, if you know him, but not much at all of J). I can also just spy in the crowd another woman who was there that night, with a scarf covering her bald head, who had the look of a chemo patient. I really hope she’s still here, getting to watch this too.

https://youtu.be/tUxm_Pd0XRw

I haven’t been back on my bike since the great big ride, in case you’ve been wondering. It has been a slow couple of weeks for exercise. We gear up now for what is coming in just over a week, our departure for Italy. I’m still in a fair amount of disbelief that we’re going. I have my next MRI scheduled for two days before the trip, which seems unfair, but I am assuming it all will turn out well. (I had a checkup with Dr P yesterday, and all of my bloodwork was fine.)

If all is not well, I will take steroids, and talk my way through Italy. Which reminds me, last week I also took the kids to Coney Island, where a fortune teller machine had the following to say to me:

I don’t think it got the memo that I’ve been off steroids for quite some time now, and nowhere near as chatty as I was then. Since the advice about not talking so much isn’t particularly accurate, I’ll assume the advice about staying home is also not right.

I almost forgot to mention another reason this post got postponed: I’m back to writing poems. I’d had a particular writing contest in mind for weeks now, and I had been assuming I’d write an essay to submit to it (they were accepting entries in poetry, fiction, and nonfiction). When I sat down to work on it, however, a poem emerged. I thought I’d write it, then move on to working on the essay. And then another poem emerged. It’s as though I had immigrated to another country and completely stopped speaking my mother tongue for decades, then one day woke up and opened my mouth and suddenly it was all I could speak. For me, translating lived experience into poems has always been a process that requires long gestation. So this week, I think I finally allowed myself to start giving birth to those poems. I wrote two, and found another I had started last November, which I completed. I submitted them two hours before the midnight deadline, which, for a procrastinator like me, was noteworthy.

This change of language in which I express myself is also timely, because in a week, I will go back to Italy after a long, long time. My words may be a little creaky at first, but I can’t wait to reinhabit my Italian persona. This time, though, it will need to coexist side-by-side with my English-speaking mom persona. (The thought of the language gymnastics makes my brain a little achy and tired in advance.) We’ll be there two weeks. At this age, the kids may pick up a fair amount of the language just by listening carefully. By the end of the trip, my modest goal for them is that they be able to order their own gelato… so that I will have more mental energy to focus on choosing mine.

All the anxiety, all of the mental and physical preparation, and whoosh – the day came and went.

Friday night, we had dinner at J’s parents house and left the kids there to spend the night. We got home around 9 pm, aiming for a 10 pm bedtime. Which we managed, pretty much, except by then we’d decided that we’d need to be up by 4:30 am. So we weren’t going to get much sleep.

We were up at 4:30 (okay, maybe it took us a few minutes longer) and got our stuff together quickly. I took my dose of Tafinlar at 5, much earlier than usual, because it has a three hour fast on either side of it, and I knew I wouldn’t want that to impede fueling up for my ride.

We took a couple of bananas (turned out they were uncomfortably ripe) and I made us each a PB&J to eat on the ride. I knew there would be breakfast at the ride, so I packed some mixed nuts and a bunch of the kids’ fruit leathers to ride with, and that was it.

Then J went out to get our bikes on the new car rack. We’d tried it out last weekend, with all four bikes, and it had gone fine. This morning, I think the nerves got to J. Once both bikes were strapped in, he was assailed by doubts, and wondered if the whole thing wasn’t too loose. I was standing there trying not to implode from stress. It got later and later. Finally, J decided the bikes were secure, and we were on our way. I kept an eye on both bikes in the rear view mirror almost the whole time.

I’d been hoping to get to the ride at 6:30. We didn’t start out until after 5:30, and it was more than an hour away. It felt good to leave the city though – whenever we cross the Triboro Bridge and head in either one of the directions that take you north, it feels exciting. (Especially if it is early enough that you don’t hit a solid wall of traffic in the Bronx!)

En route, I texted S, a friend from my early days of motherhood, who now lives upstate. We hadn’t been in touch for a couple of months. I figured she might not live too far from the finish line, and it was worth a shot to see whether she could make it. To my happy surprise, she seemed amenable to it! And J’s parents would be meeting us at the finish line too, with the boys.

But all of those happy reunions would be hours away. Little did we know how many hours. When we got to the venue we had no idea where to park – luckily spaces were available across the street, rather than at the designated event lot that was almost two miles down the road. There were waivers to sign before we could get our jerseys. We had to change into our jerseys, release the bikes from the rack, get sunblock on, and scramble over to the start. We saw breakfast laid out, and it looked lovely – quiche, Greek yogurt, fruit – but all we had time to grab was half of a giant blueberry muffin to share. Forget coffee. At least we’d eaten those bananas!

The 100 milers set off, and then the 50 milers, and then suddenly, it was our turn. We got in the very back of the chute and I’m pretty sure we were the last to start!

The moment I crossed the starting line, I got a little teary. I’d been thinking about this ride for a long time, training for it, and to cross the start line, even, was huge. I soon got over it, because we were entering the West Point military installation, and I knew I’d probably not have many other chances to see it. It’s a stunningly beautiful campus, many historic buildings, and I noticed the library as we passed (also gorgeous). Suddenly, a hill came up and smacked us in the face like a wave. It went up and up. And that was just the start of the ride!

Once we left West Point, we had a little respite, but then the hills really began (see first circle, above). We saw other riders stopped on the first big hill for photo ops, so we joined in:

None of the things I had spent so much mental energy worrying about came to pass. I didn’t fall off my bike. I didn’t have trouble starting again when we stopped on a hill. No major components fell off my bike (although a reflector attached to one pedal became very loose and rattled and drove me a little nuts). In the days before the ride, I’d been congested and worried I’d wake up the day of the ride too sick to go. But I was fine. Completely fine.

Once we’d been through the first big hill, I had a better sense of what the hills would be like. The trainer I worked with, Joanna, had advised that a good strategy for long hills was to not look up. When she said that, I imagined a big hill rising above me, like a wall. But what there really was, of course, were endless twists and turns, hills rising around and out of sight so you couldn’t predict where the top was, and if you did try to predict, you were wrong.

I suppose if I’d gone to the trouble of mounting my phone on my bike, I could have had an app tell me when the big hills were coming, but perhaps that would not have been as fun. I would have missed everything I saw. Small towns and stone walls and oddly, a solar phone charger in the middle of nowhere with an unseen person’s phone hooked up to it. Birds of prey circling as we took a rest stop, prompting us to look alive. Also, on the Storm King Highway, cars zipping around blind curves at 50 mph. (In the morning while J had been racking the bikes, our neighbor passed by walking his dogs and when we told him about the ride, he mentioned that he likes taking the Storm King Highway curves in his BMW. So I guess we’d been warned!)

Instead of looking at my phone, while I pumped hard to get up those hills, I thought of Kate, my sister in melanoma blogging, who died in April. I am profoundly sad that the advances in treatment to date fell short of what she needed. And I also thought of another friend who will soon begin immunotherapy treatment for a different type of cancer. Grief and hope in equal measures.

J rode with me, but he’s taller and stronger than I am, so what that meant was, he rode ahead and checked back every so often to make sure I was there. I sang camp songs to self-motivate. One about how the world is a narrow bridge, and the most important thing is to have no fear. To amuse myself, I remembered the first time the world got to see Kermit the Frog riding a bicycle, with unseen strings pulling him along, in The Muppet Movie.

At the rest stops, we gorged on strawberries and peaches and drank Gatorade and marveled at all the local people who had come out to help with the ride. We also met another rider, a woman originally from Poland, who has had cancer run rampant through her family. Her mother died of lymphoma, which seemed connected to Chernobyl. We rode together for a little while.

There were many SAG vehicles, and more than once, they seemed to be riding my tail, making me think we were the last ones out on the road. Not literally the case, of course, but we certainly took our time. The last hill was murder – on a stretch of road that was not shaded, and at high noon. J soldiered on, but I finally gave up and walked for a piece. Then a SAG wagon showed up and they refilled my almost-empty water bottle, and that gave me the push I needed.

The end of the ride was amazing, dramatic – we got to ride on a highway, with one lane blocked off for us, then up the exit ramp and back into the town of Highland Falls. The steep descent to the finish was precipitous, crazy fun. I felt as though I were playing one of the video games the kids like. I stood on my brakes at times, making them squeal and almost smelling burnt rubber. The broken pavement added to the adventure. By the time we rolled up to the finish, about five hours after we’d started, I was exhilarated and exhausted. Seeing the kids and J’s parents, with a “GREAT JOB” sign and huge smiles, made me cry all over again. We were officially photographed. S arrived and I gave her a big, sweaty hug. Then J & I got massages and ate great food and heard a good band and drank beer and wine and S & I caught up a bit at last. I even got to take a shower! And the kids bounced in a bouncy house three times the size of our apartment.

The announcer at the finish line said I was a cancer survivor. I’m sure that was meant well. It isn’t quite accurate, though – not from my standpoint. I still take medication. I am still being monitored closely with scans, and anytime something weird happens, I call the oncologist first. It may be a long time before I lay claim to the title of survivor. As Mary Elizabeth Williams‘ doctor told her, “You can call yourself a cancer survivor when you die of something else.” And don’t call me a warrior, please. I take pills and I get scans. That’s not exactly jiu-jitsu.

If I’m not a survivor, then I find what I accomplished yesterday difficult to label in an easy way. Surprise, surprise – I have always deflected easy categorization. What it was, was this: I survived a tough bike ride, one year after brain metastases and gamma knife surgery. The lungs which once had tumors in them are now free of them – thanks to cancer immunotherapy – and they helped me get up and down some brutal hills without quitting. That’s what happened yesterday.

But also – more than a hundred donors to our fundraiser showed us their love and support, and stated with their donations that they, too, hope for a future where cancer once and for all stops its ruthless march.

Although the ride is now over, fundraising continues through the summer. If you’ve been thinking of giving, you still have a chance.

Thank you, thank you, thank you.

I did something very unusual this afternoon, as the school year for the kids ebbed into its final hours, and then its final minutes. I had a lot of prep to do for their special last day of school dinner (their fave, a chicken & broccoli & mushroom stir fry, which requires a lot of chopping).

I had watched, earlier in the day, the beginning of the historic sit-in for gun control legislation in the House of Representatives. I was stirred by John Lewis’ words, and I sensed this was some Grade A political theater.

When it came time to chop veggies I propped my laptop on the counter, and I kept watching. To say I have been disengaged from politics in this election year is an understatement. But I cannot stand by and watch mass murder after mass murder happen on my watch. Some of the speakers today stayed on message, some of them did not. A letter from Gabby Giffords, a victim of gun violence who has started her own organization, Americans for Responsible Solutions, was read on the House floor.

By the end of the day, I wasn’t sure where the sit-in might lead, and I’ve had to stop following it closely, in favor of family time. My heart hurts, my brain is fried. And I don’t want any more bullets sprayed into any more bodies.

Tonight, John Lurie posted a new image of one of his paintings on Facebook, and it just slayed me. Such a perfect encapsulation of the current mood. Such a perfect shade of blue.

I’m pushing aside the things I need to do right now. Just for a few minutes I will enjoy the serenity of my bedroom, the door to the balcony open to birdsong.

The weekend was cuckoo bananas, wall-to-wall fun. We were catapulted into summer:

Lemonade stand:

block party, outdoor concert, Father’s Day, school picnic, bike ride:

AND to top it off, a barbecue.

I love summer. I always have. I love the heat, the humidity, the loud hum of a field full of insects… and the bright, endless sun.

It just isn’t fun for me anymore. Sometimes I dread leaving the house, when there is bright sun. And there will always be sun.

For most of my life, sun was no problem at all, it was a treat. Sunscreen applied in a perfunctory way, and bare shoulders and a pair of cheap sunglasses. I recall dragging a lounge chair out of the garage to the backyard and lying out. I cannot believe what a terrible idea that was. And yet, according to my surgeon, the damage was not done in adolescence, but earlier. All those peeling sunburns as a kid. And who knows? Maybe the UV light I logged time under as a jaundiced newborn.

I can’t really enjoy the bare shoulders anymore. I still bare them, but now there is a sense of danger. I’m exposing myself needlessly. I may as well take up smoking or chewing tobacco, when I’m out in the sun with skin exposed. When I’m walking in the city, it becomes a race from shade to shade, crossing the street at inconvenient places, just to stay out of the sun. Swimming is less fun, now that I have to wear a shirt while doing it. A shirt that feels okay in the water, but when I come out, clings to all the wrong spots, not unlike plastic wrap.

I hate the panic I’m necessarily instilling in my children about the sun. Especially the one who is paler and who freckles like I do. I hate bringing up issues of mortality while I apply sunblock to his writhing, uncooperative limbs. I hate how much good sunblock costs. How it will undoubtedly ooze from the tube or bottle I send in each kid’s backpack to summer camp, covering everything with zinc-y sludge, but only if it doesn’t get lost on the very first day of camp.

But I still love summer, and the sun. It’s just that my love has gotten more complex – fraught, tinged with resentment, concerned with the need to protect myself. I’m guarded. But I know that one day very soon, I will hit a sweet spot, I will be wearing plenty of sunscreen and a hat I don’t hate and I’ll have a summery drink in my hand and J will too, and a light breeze will caress my bare shoulders while the kids, properly sunblocked and behatted, are off playing at a distance.  Then I will have a moment of ease, and forget that that feeling used to last for three months.

Once again, I am angry, devastated, and unsettled. Once again I want to grab a thousand lawmakers and lobbyists by the lapels and demand that they back down, back off, disarm. We are a continent of lead, awash in blood. How much longer will I be able to conceal the true horror of it from my kids? If they knew what happens here every day, every hour, they would probably never sleep again.

Or would they, as we do, assimilate this somehow as part of their everyday reality? In the absence of a nationwide uprising against our current situation, this is what those of us whose lives have somehow failed to have a ragged hole cut through them in the latest outrage seem to do.

As I did, yesterday, with my family. We headed to an amusement park for the day, with J’s nephew. It was a beautiful, warm, breezy day. People had died and been injured horribly overnight, but not close to where we were, so it was possible to do such a thing.

I think that the sinister event cast a shadow over the park, or maybe it was my thought overlay, as I looked around. There were staff everywhere in orange t-shirts, but I noticed none of them seemed to be security guards, save for two guys we only saw when we were leaving. And scores and scores of families queuing up for their next go-round on the next gravity-defying experience. I noticed at a certain point that many of the rides came from Germany (which felt creepy to me), and on the haunted house ride, one of the last we rode, there was a faded banner with the name of the ride in German, “Der Rickscha,” and a pervasive smell of mold as Young A and I sat in the dark in our rickshaw, pulled by a zombie with a black bag over its head, whipped around hairpin turns to horrors that were more annoying and ridiculous (except for the blood-curdling screams, those really were awful).

There were flying swings, which are my favorite ride, but the park is crammed into such a small space, they didn’t give the feeling of soaring, and it was hard to shed the idea I might smack into sign posts or other rides. I closed my eyes for a bit, that made it better.

I rode a kiddie roller coaster with Young J and Young A, but it wasn’t quite junior enough for me. I closed my eyes there too, which helped a little, but mostly, I felt myself click into Endurance Mode, something I’ve developed for use when called every two months into the tunnel for my brain MRI. This wasn’t a medical exam, though. I had opted to do this for fun! And it wasn’t remotely fun. I was enduring it and trying to gauge how Young A was handling it. He looked terrified by the end, but perhaps not, because by evening he said it was one of the best rides he’d been on all day. He is one complicated little dude.

The best ride of the day, for me, was J and I sitting in the back of an antique car while the kids sat in front and pretended to drive. A ride that was charming and mindless and most importantly, not trying to thrill us, not even a little bit.

I wasn’t sure, when I started training for the big bike ride I have coming up, that I really needed professional help training for it. I’ve been riding for a long time, after all, and I did the Five Borough Bike Tour once, and all I did to train for that was ride the steep hills in Riverside Park in very high gear.

But guess what? It turns out that over the years, any number of fears, real or imagined ones, crept into my riding. So when a friend mentioned a trainer that she’d worked with for triathlon conditioning, I did think about it for a second. Then Thrifty Brain took over and said nah, just get the miles in. So I did that for a little while, donning my trusty 20 year old bike shorts, which now provided about the same amount of padding as a panty liner (the vestigial kind, for “light” days), a fanny pack with my necessities, and my clunky stainless steel water bottle rattling around in its cage.

And then, I saw the route profile. Which told me that riding the shortest distance of the three available wasn’t necessarily going to be the easiest. The little diagram helpfully hinted at a total elevation of “~2,379 feet” – as in, “approximate, we’re not quite sure, the last person in charge of measuring it passed out while climbing the last huge hill.” This was turning out to be more than I bargained for, and I realized if I didn’t get some solid advice, I was probably going to bomb this ride.

So I got in touch with that trainer, Joanna Paterson of Bodiesynergy. I spoke with her first on the phone and she seemed direct, professional, and very, very knowledgeable. By which I mean that she wasn’t trying to do more than I needed. She understood that I’m training for this ride for a very specific reason – because cancer immunotherapy is in part responsible for my being on the surface of the earth instead of beneath it – and she got that I wasn’t trying to turn into a triathlete. As a bonus, she is a native of New Zealand and has a great Kiwi accent.

We made a date for the park. Before that date, I needed to acquire proper biking clothes. I went to a shop in Park Slope, where I heard someone call my name. It was P, the wife of M, whom I met in my librarian job ages ago. I’d seen plenty of photos of her on Facebook. We’d never met, but she’d read my blog before, which made me feel like a minor celeb. She was lovely, and she helped me choose clothes. I began to realize something that Joanna told me more concretely at the end of our session today – that not only have I improved my skills, I’ve also started to create a community – the people riding in the park, the people who work at the bike shops. (She’s right. Last week when I went to get a ticking sound looked at at a different shop closer to my house, Ricky, the guy who rescued my ancient bike from decrepitude a couple years ago by upgrading crucial components, remembered me.)

I bought those new biking clothes about two hours before meeting Joanna for our first session. I put them on at home, feeling like a total poseur. This feeling was magnified by what happened while I was riding to the park to meet her. For the first time, EVER, I failed to check the crosswalk was totally clear before I started up from a red light, and I rolled into a pedestrian. I didn’t knock her down. She may or may not have been wearing white pants. I was mortified! I rode to the park beet red, and as soon as Joanna and I had shaken hands, I burst into tears. She handled it with aplomb, and smartly encouraged me to get off my bike until I’d collected myself.

At our first session, I learned a lot about gearing and how to not run out of gears on a hill (at least, not on the modest hill in our nearby park). I learned how to hold my line (aka not zigzag all over the road). Joanna showed me how to drink while riding (my subsequent practices on that skill, including one time when I almost knocked over another rider, left me feeling it was a bridge too far for me at this stage). And she raised my saddle to the appropriate height for someone like me, who is about 80% legs. I have such tremendous leg power while riding now, it’s pretty amazing.

Joanna gave me homework after that session – three workouts, including one of hill repeats and one of six or seven laps of the park, with the third one being my choice of the other two. A strange thing happened though – with the higher saddle, I began to dread getting on or off my bike. Towards the end of my first six-lap workout, I both fell over when stopping to get water, and somehow forgot how to stop and dismount the bike when I finished (I eventually figured it out). I’d been riding dehydrated, because I was too afraid to stop!

I decided to schedule another session with Joanna this week, to focus exclusively on starting and stopping and turning (something else I suddenly forgot how to do, after I’d fallen over that time). I was letting my fears grow gigantic, and this was not the way I wanted to go into the big ride.

Today we met in a sunny and very windy park, and Joanna drilled me on starting and stopping. She didn’t force me to change my way of pushing off, just suggested things to pay attention to when I was doing it. She did offer solid advice on downshifting before you stop, so you don’t get caught on an incline stopped in a high gear. And she made me practice turns in both directions. All throughout she encouraged me and guided me. I think we finally released all the butterflies today.

I’ve been extremely lucky through this cancer ordeal, meeting people who have a fantastically unique and adept way of tweaking my perspective. Working with Joanna is the latest example. I’m going into the big ride with a secret weapon: The Kiwi-accented voice in my head. It’s telling me to “cape piddling,” “hold your loin,” and it’s going to get me up some pretty steep hills, the steepness of which Joanna has told me not to look at as I climb, as a tactic for making it all the way up.

I’ve never been much of a long-range planner, so that last piece of advice should suit me just fine…

To donate to our fundraising effort for the Answer to Cancer bike ride, please visit our team page. Every amount helps us get to our goal. Donations can come in until September 1. Thank you so much!!