I'll Live

La dolce vita

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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.

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