I got some good news from the MRI today: The images on the screen are still not x-rays of beetles! Also, my tumors all “shriveled”! A resident who was in to see me before the doctor was having a hard time suppressing her excitement at the good news, finally removing herself from the room “before I steal Dr K’s thunder.”

It was a long, weird day. The CT scan was first, and I had to fast for that. Then I had to drink down a whole bottle of barium sulfate. I’d photographed it before, but today I chose to photograph something one step removed: another patient who was photographing his bottle of barium sulfate (image altered to protect his privacy):

I barely flinched when the IV went in today. I’m a good little cancer patient now. I don’t get teary or anxious. I get to keep all my own clothes on during scans because I know not to wear any metal. Today I realized the person who tells you when to hold your breath over the loudspeaker is in fact saying it live, it’s not a recording, because it was a different voice today. The technician in the room asked me the usual questions, like if there were any chance I could be pregnant. He actually pantomimed a pregnant belly with his hands, which cracked me up.

Unlike last time when I had a scan double-header, this time I knew to ask them to leave my IV in. They were fine with it, and covered it up for me, but it was mighty uncomfortable. And it felt like I was concealing something as I walked around waiting for the MRI.

I was able to drink water, but since I didn’t have any break from the cancer drug today, I had to figure out timing for when to take it, respecting the two hour moratorium on eating before and one hour after. That meant that, even though I was starving from not eating anything since yesterday around 8 pm, I still had to wait to eat. So I spent the time between scans walking around looking for shady benches. I found one by the hospital, then tired of it because there weren’t any trees.

I showed up early for the MRI and they saw me right away. I wore all my own clothes in the machine today, opting only to take off my shoes. There was classical music playing (and I made sure that they’d actually paid for a subscription to Pandora so my ears wouldn’t be blasted off with ads, like last time). But I couldn’t hear much today – not even the announcements and questions they were asking me over the intercom. To tell the truth I think I was half-asleep most of the time (the scan took about half an hour).

The only moment I came even close to crying today was when a mom had to bring her son in for an MRI. He seemed to be about ten years old. He was putting up a brave front in the outer waiting room, but once they took him in alone to prep him for his scan, he was just screaming. I sat in the waiting area next to his mom, and tried to think of something to say, but I’m not on steroids anymore, so I let the urge pass. Besides, I really had nothing useful to say. I know for sure I’d be a complete wreck in the same situation. Poor kid. Poor mom. I hope they’re doing better now.

After leaving the MRI place, taking my cancer meds and having to wait an hour to eat and longer to see Dr K, I walked up First Avenue and passed this ravine, which occupies an entire block, seems to be unclaimed by any real estate concern, and houses a homeless person’s encampment:

I couldn’t see anything wrong with the place this person set up camp. There was shelter, transportation (a walker) and even a clothesline. A view of the East River and natural features (the bedrock of the city, Manhattan schist). A flagpole with a flag.

I walked a block north and was in the shadow of this iconic building:

Which, because I am an incurable Hitchcock fanatic, immediately brought to mind this scene from North by Northwest:

I wasn’t exactly a case of mistaken identity today, like poor old Cary Grant. No one called me by the wrong name, poured liquor down my throat, and made me wind up in jail (etc etc). But it did feel like I was walking around with something to hide. It made me happy not to be stuck inside the hospital, shuttling from one floor to the next. Just being out in the world with a sword of Damocles dangling over your head, and maybe for part of that time an IV in your arm awaiting its next use – especially on a day with nice weather, when nothing seems like it could possibly be wrong? That’s kind of hard.

So… I am really goddamn happy I got good news today. Hoping for similarly sunny skies when I see Dr P for my CT scan results on Wednesday.

I’ve nearly made it through the weekend before Scan Day without losing my mind. However, there is still an entire day to get through with the kids. Young J is having a playdate, and Young A has asked to have a subway adventure. He wants to go to Grand Central and get a cookie. It’s a beautiful Sunday, though, so I’m going to upgrade that to an outing in Bryant Park, the most quintessentially New York park I can think of. Many times I have repaired there after a job interview, or to hear poetry readings, or just to sit at a table on the gravel walkway under the tall trees and pretend I am in Paris. I’ll see if Young A is amenable to being that existential. (If not… there is always the carousel.)

I’ll undoubtedly be exhausted by the end of the outing, but a happy Young A is worth all that and more.

Twenty-three years ago, I spent a few months going to school at the Centro di cultura per stranieri,  in this building, Villa Fabbricotti, in Florence, Italy. This photo looks more or less like the photo that appeared on the brochure I got before I went. I didn’t really believe I’d be going to school in a castle on top of a hill.

I showed up a couple of weeks before classes started. I had a lot of work to do. I had a room in a weird monastic hostel for a week, and then I had to hit the newsstand, buy the local print equivalent of today’s Craigslist, La Pulce  (The Flea), and start cold-calling about sublets. I was guided by the experience of my friend L, who had gotten there a few months earlier and been through it all already, but didn’t have space for a roommate.  Many calls later, I found a place, a marble-floored gem with two scenic balconies, a view of the Duomo from the shower, a laundry sink outside – which my mom, when she visited, pronounced “deluxe” because it had its own washboard attached – and one lovely Italian roommate and one completely psychotic Mexican one (naturally, she was the one to whom I paid rent). Once I moved in and bought a pillow and some candles to light on Shabbat (“You in the dark?” asked the hardware store owner), I played tourist until it was time to start school. I bought myself a school notebook:

School began in April. It was a bit of scam, taking classes for two and a half months and earning credit at my university for a semester’s classes (I think I earned three classes’ worth of credit). We did have a lot of lectures but they were sprinkled liberally with field trips and Easter break:

Sadly, the spring course at the Centro was all I could afford. My parents had paid the equivalent cost of my semester back home, and I filled the gaps with money I’d earned at my clerk-typist job. Good thing I got a school ID that enabled me to eat my main meal, most days, at the mensa of the University of Florence. Three bucks got you a complete meal: pasta, “meat,” a vegetable, bread, and beer or wine from stainless steel dispensers (back home, I wasn’t even legal drinking age yet). It wasn’t half bad, and occasionally the Italian students (particularly the ones from the South, who were friendlier) would deign to talk to you.

At the Centro, I discovered on day one, there weren’t a whole lot of Americans. We numbered maybe a dozen, recognizable by our clothing even before we opened our mouths. There were about 200 students there, which meant everyone else was from everywhere else. Truly. I’m pretty sure every continent was represented. This was my first experience of full-on globalization – except that we were all there to be immersed in one culture, one which wasn’t our own.

Something else I learned early on was that many of the people studying at the Centro had been born in a country different than the one they were a citizen of. Certainly that was true in my case (I was born in Brazil). By the time I went to get my ID card made, the office staff were completely exasperated by this incongruity – there were a lot of people there in my same situation, and the ID form had space for place of birth, which was supposed to be the same place as where you currently lived. Perhaps this is what predisposed us to go study in another country, to really immerse ourselves in another culture. I certainly hadn’t wanted to be in an American program, so I wound up with the polar opposite experience. I spoke Italian all day long, even with people who spoke English passably or even very well. I didn’t have long to spend in the country, so I really wrung out my experience there, as thoroughly as I wrung out my socks after soaking them and scrubbing them in the deluxe laundry sink on the balcony (on the clothesline, they’d dry into cardboard, and get sooty from passing trains).

I became fast friends with a girl from Hungary, who began teaching me words and phrases in Hungarian, which intrigued me enough to take a semester of Hungarian when I got back home. (Major failure.) She eventually got drawn in by the local Hare Krishnas, who had a lovely villa outside Florence. I wonder if she ever got back home. Her name was the Hungarian equivalent of Ann Smith, so I’ve never had any luck looking for her. There was a group of eight girls from Scotland at the school, and after fumbling through unintelligible conversations in English with them, I eventually preferred speaking to them in Italian. There were a brother and sister from Switzerland, whose parents had emigrated there from Naples. The last day of school, our previously-beloved Italian language professor suddenly revealed himself as a total racist, directing most of his bile towards Southern Italians. It was an awful way to end the course, and this brother and sister were particularly distressed by his offensive rhetoric. I think someone went to talk to the head of the school, a white-haired figurehead, and it’s possible we got the guy fired. (I hope so.)

I had a small group of friends I’d go out with in the evenings – A (American, of Argentine descent), V (French, of Italian descent), and J (Swedish, I didn’t know his background but he was a lot of fun to hang out with). We were all pretty broke, so happy hour was a major draw. There was one Mexican restaurant in Florence at that time, Caffe Caracol. For exactly one hour, from 6-7 p.m., a pitcher of margaritas cost $20 instead of $40. The drinks were extremely strong. I wouldn’t say we were there every day, but we were there more than once. So were entire platoons of soldiers. At 7 p.m., a bell would ring and the prices would go up. We’d stumble out into the early evening, drunker than anyone else on the streets. I learned how to behave sober even when I was ridiculously drunk, because I wasn’t about to make a spectacle of myself. Oh yeah – I also saw lots of Renaissance art and learned how to find the Medici crest on buildings (they were everywhere). (Obviously, I learned volumes more than that.) I was pretty depressed for at least a month when I got back home. I had evolved, developed an entirely new life and new personality in another language in Florence, and it was over so abruptly.

I think of my experience now because it was perhaps the first time in my life that I lived so intensely for such a compressed period of time. I hope one day it will be parallel to my experience with metastatic cancer, a wild ride which I still can’t believe only started last September. There is a feeling that I’ve lived about a dozen lives since then. This time around, I’m hoping for nothing but joy when I repatriate, from Cancerland to Perfect Health City. I know that’s asking a lot. Also, it’s going to take a lot longer to get my visa to go there – five years, at least, if nothing else goes wrong.

I also think of my Italian experience today, because yesterday I saw my Swedish friend J, for the first time in twenty-three years. He has been visiting New York with his son, who is now 18. I had a great time showing them around Brooklyn. And it was like no time had elapsed at all.

A week from today: Next CT and MRI. Also, same day, my follow-up with my neurosurgeon, Dr. K, which means I’ll get a sneak preview of the MRI results at least. For the rest, I will wait two agonizing days until I get to see Dr. P.  The intervening day will be visiting day at the kids’ summer camp (a/k/a the day I paw through the lost & found to find the 800 items that have managed to go missing since they started last week).

How am I at waiting these days? It doesn’t keep me up at night. Nothing keeps me up at night, unless I’ve eaten a bunch of Halloween candy because I’m partying because I am off dabrafenib for a week due to my freakishly thick footsoles and can eat candy at all hours. Yes, we still have a bunch of Halloween candy in the house. I don’t keep it from the kids, but I don’t exactly remind them it’s there, either. It’s also on a shelf about 8 feet off the ground. And so picked over at this point, there isn’t much there to excite them. Or me, really, except when I am at liberty to eat candy at 10 pm. That’s not tonight though. Tonight I’m sitting here typing this in bed while J eats his second dinner, having just come back from playing basketball and then doing an unusually long grocery shop, because the meat cooler was out of order and all meat had to be paged from the basement tonight, and they sent up the wrong thing the first time. The delights of coop shopping.

Coming off of a weekend in the Eating Vortex (also known as my parents’ house), I’m redoubling my efforts to rein in my eating habits. Which makes tomorrow difficult. In a social frenzy reminiscent of my high-dose steroid days, I arranged a lot of social opportunities tomorrow: a walk in the park, lunch, coffee, and drinks in the evening. I knew I was stacking everything up but somehow it didn’t bother me. On Wednesday, I get to see a friend I haven’t seen since 1992. That will be grand.

Today, though, I had a day “off.” Yes, the morning started dreadfully – the kids, who went to bed at 10 pm last night because it took us seven hours to get home from DC yesterday, barely dragged themselves out of bed, and we actually saw the bus go by before we reached our corner. Luckily, the bus was a bit early. Young A said to me before we crossed the street, “You know, Mama, it’s too bad you can’t run.”  That pissed me off so much – both the implication that the lateness was my fault, and the fact that I couldn’t run – that we wound up running a full block, hand-in-hand, before lurching across another street and towards the school bus.

I had been planning to walk a loop of the park after dropping them off. Instead I had to come home and recuperate for an hour from the stress of the bus dropoff. I almost packed it in and went back to bed. Now, devoid of steroids, my entire life seems like one big fight against the force of inertia.

I also decided last night that I’d significantly drop my daily calorie intake this week, just to see where that gets me. That, plus the two hour eating moratorium required before dabrafenib (which I went back on yesterday) meant I fueled my park walk with a cappuccino and small banana consumed before 8:15 am. I didn’t eat again until almost 1, because I stopped at the library, and then I had a high lunch concept that took a while to realize. I thought I might go mad, but… maybe I need to remember how to experience hunger again.  I’ve had success in the past with Weight Watchers, but my health situation seems too precarious to be that punitive with myself just now. I’m pretty clear on the general concepts, like STOP EATING CRAP ALL THE TIME, DRINK WATER OFTEN, and COFFEE HAS LOTS OF CALORIES, THE WAY YOU TAKE IT. So, we’ll see how things go.

My biggest concern about next Monday, really, is lunch. I have two scans, the first is the CT for which you fast from midnight on. The second is the MRI, for which you don’t need to fast. I may just spend the rest of the week I need to wait considering the various logistics involved and whether there is a doughnut shop in between Scan A and Scan B (although wait – I’ll have to respect my eating moratorium due to medication, arrrgh) and maybe bring a contingency sandwich if the scheduling goes all pear-shaped.

I think that logistics becomes its own coping mechanism. Obsessing over logistics, like where my scan day meals will come from, makes me feel more like a hamster in a wheel – purposeful, because I don’t have an outsider’s view of the purposelessness of my activity – and that way, maybe I feel less like being in the middle of a dark wood.

Wow, that is one heavy title. I’d bet you think this blog post is going to get at something really existential and heavy. Nah. Sorry.

One of the things that doesn’t really get explained to you when you start treatment with an immunotherapy drug is, weird things happen to you when you’re taking these drugs. Yes, last fall was on the weird-bad (VERY bad) end of the spectrum. The temporary mania I experienced this spring while on Decadron I have to say was more on the weird-good end of the spectrum.

And then there are all the other side effects that the steroids masked, which are showing up now. On Monday, I went to see Nurse Practitioner K about my post-vacation crud. I’d read that dabrafenib can cause cold-like symptoms and cough, and wanted to rule that out. She ruled it out (and also, after listening to me breathe, didn’t see the need to send me for a chest x-ray, which was a huge relief, since I’ve had pneumonia about four times since 2008).

She also did her usual taps on my belly and upper back, and I asked what she was looking for. Anything solid that might be there, where it is usually hollow, she replied. Yikes. Anyhow, she didn’t hear anything solid.

Then it was time for her to take a look at my feet. My feet are a pre-existing condition if there ever were one. Genetically, I have been bequeathed a lot of wonderful things – a sense of humor, some talent at writing, height, red hair… but also, bunions. Terrible, terrible bunions. They forced me to hang up my running shoes before I was able to do much more than a half marathon (it amazes me now that I ever even ran one). I loved doing modern dance, but I don’t know if my feet could take me through a 90-minute class anymore.

I’ve slowed down a lot since I got metastatic cancer. I stopped running after the kids (luckily, they are nearly past the stage where that is necessary for safety – now, it merely makes me less fun). I was never a fast walker but now I’m just the slowest, even though my legs cover more ground due to their length. But actual, debilitating foot pain was not a thing with me until very recently. I visited the podiatrist last month, and he scraped off inches of thickened skin from the bottoms of my feet. I felt like an old woman. He guessed it was the steroids that had caused it, and sold me some ointment to use to keep them from getting that bad again. I used it a couple times, but it’s messy and you have to wear cotton socks to bed and… ugh. I also bought a tool to scrape dead skin off my feet. I used it once, the night before our trip to Colorado. I didn’t draw blood or anything, but that tool caused me more pain in the following days than I thought was imaginable. I was never happy on my feet. That’s why horseback riding was so grand, but the thought of hiking made me cringe.

When I mentioned to Nurse Practitioner K that my feet were messed up, she took a look, and I’d say she looked pretty grave when she saw them. Especially when I shared that they were kind of tingling too, in an unpleasant way.  Turns out it’s not steroid damage, but caused by dabrafenib. It can cause skin thickening and also the tingling. She told me to stop wearing sandals, use the ointment, and wear socks. She also mentioned in passing while checking for swollen lymph nodes that I had indeed developed “chicken skin.” (My skin has bumps all over it. Like a plucked chicken’s.)

What sort of support group do you go to, exactly, to complain about your tingling feet with thickened skin on the bottom of them? Where do you unburden yourself about unpleasant-but-harmless “chicken skin”? These are piddling concerns, compared to what other cancer patients, who face chemo and radiation side effects, are dealing with. So, I continue not to go. Also, because I’m selfish. I don’t want to get to meet people who are great, and who might “die out” of the group.

A friend forwarded me this article yesterday, though (which I missed because it came out in March, when I was busy working as a librarian, suppressing all thoughts of being back in Cancerland again), and it gives me hope that soon, there will be more support and more outlets for people like me, going through what are still not widely-known treatments, which carry random and perhaps odd side effects. I don’t particularly relish the idea of being a cancer “lifer,” like the people profiled in this piece, but if that turns out to be the case, at least there are people blazing that trail for me. If I reach that point, there will be many more books for me to read. Groups for me to join (though I’ve never been much of a joiner). Bowling tournaments to participate in. By then, I hope my feet feel better.

We arrived home from Colorado last night. The kids were awake enough to eat pizza at 10 pm (because it felt like 8 to them). They didn’t get out of bed today until almost 9. It’s going to be a struggle to get them on the bus to camp tomorrow at 8:20 a.m.

The new app on Facebook that offers to tell you what happened on this day in your personal history helpfully reminded me today that last year at this time I was in the exact same shape after our vacation – sick as a dog. I’m coughing up stuff, it hurts to cough, and I’ve already drunk about a gallon of Throat Coat tea today. I’ve barely left my bed, in part because it is so far superior to any bed I slept in on vacation.

Because I’m not feeling well enough to talk to a resident today, I’ll wait until Dr P’s office opens tomorrow to see whether they think this is dabrafenib-related or just shitty luck. If the latter, I’ll need to go see my primary doctor, Dr S, whose office is nearby but where the wait times are ridiculous. She also gets a little bent out of shape when I show up after a few months and she hasn’t heard from Dr P and I have to tell her what’s been going on. And what a doozy of a tale I have to tell. “Oh, since I saw you last? Not much, just a touch of brain tumors. A sprinkling. Okay, a dozen. And some laser surgery and the medication that may be making me cough my lungs out right now. But hey! Good news! My lungs are clear now! At least, they were in mid-April. I have another scan in a couple of weeks…”  (Dr. S will be too busy furiously typing all this in to the computer system to scowl or look shocked, of course.)

So yeah. Another scan in a couple of weeks. There are those couple of weeks to get through. In the meantime, my fruitless search for employment is ongoing. I just got a “passive rejection” (my coinage), meaning via a departmental listserv from the place I work very part-time during the academic year, I learned the name of the person they hired for the job I applied for months ago without hearing anything. So that’s settled, then. Maybe I’m done with library work. It may be done with me. If that’s the case, maybe I wish I hadn’t had the brief reminder earlier this year of how good I was at it. That would just make it suck even more.

Absent the steroids, the air has gone out of my sails (or maybe it’s just the post-vacation malady/exhaustion talking). I need to return to a few writing projects, but I’ll probably fall asleep in the middle of working on them. Now that the steroids have faded I have been checking into the side effects of the other drugs, and for one of them it’s fatigue, for the other it’s “weight changes” (in my case, gain). Awesome. So as long as I’m on dabrafenib, I’ll stay on these two other drugs, which make me fat and sleepy. Good thing it isn’t summer and I don’t need to be seen in a bathing suit! No, wait – I mean, good thing it’s summer and the bathing suit I now have to wear may as well be a burqa!

It was simpler up in the Rocky Mountains. There wasn’t much wifi. There were lots of horses. I couldn’t look for news on how screwed up the world is at the moment. I’m happy for gay people who want to get married and now can. I’m happy someone went and took down the Confederate flag. But I’m afraid of weaponized crazy people, both at home and abroad. And I’m worried this is pneumonia (an affliction with me that even predates cancer) and I’ll have to rest for a whole month. I want to start moving again.

The boys learned to ride horses this week. We saw parts of the national park you can’t get to by car (and we didn’t see hikers either). It’s yet another thing we can do now, when we go to places where it’s possible.

Our last night in Estes Park, we walked over to the pasture where the horses were grazing, to say goodbye. I was lagging behind as usual (medication-induced foot problems, damn you!), but J told me that as soon as the horses heard the boys’ voices, every single horse’s head raised and turned in the direction of the sound. A moment of perfect beauty I may have missed witnessing myself, but just its description fills my heart with peace and other good things.

Greetings from Estes Park, Colorado! Above, the way we started our day. J, Young J, and Young A (the latter two being total novices at horseback riding beyond guided pony rides) did great. I sat tall in the saddle and had to suppress whooping for joy because I didn’t want to scare my gentle old horse, Sarge, whose primary interest was bending down to munch on grass whenever we stopped.

I made it. We made it. It has been ten weeks since my brain was found full of lesions, since my language was scrambled, since the unthinkable was happening – good news about clear lungs followed immediately by very bad news. There is no way I could have gotten here so quickly without Dr P, Nurse Practitioners R & K, and my neurosurgeon, Dr K, and his team.

Today, I spent an hour on horseback, my heart bursting with pride seeing my kids take their first real ride and not be afraid at all (though perhaps a bit cautious at first). We climbed higher and higher, and got closer to the snowcapped peaks we hope to see even closer today by car.

It was strange to wake up to such an amazing experience, because last night I had a dream which I remembered, for a change, and it was very bad. I was walking in some city and saw a van take take a corner too quickly and skid on slick pavement and crash through the wall of a construction site. I rushed to the other side of the site, heard a construction worker with a German accent calling 911, and then I saw the woman who had been driving. She was African-American, wearing a bandanna over her hair. How can we see faces in dreams of people we don’t know? I didn’t know her. But here she was, convulsing and dying right in front of me.

It wasn’t until just this moment, writing the dream down, that I had the slightest clue what the dream might mean. I’ve been thinking a lot about the massacre in Charleston. We’re staying at a place here in Colorado that draws a lot of white guests from the South. I can’t speak to them without wondering whether they fly the Confederate flag outside their houses, or display it on their cars. This dream is some kind of allegory.

I woke up after it happened. It was about 2 a.m. J was awake – he hadn’t been sleeping at all. Perhaps the altitude affects us in these strange ways. It took a long time for us to fall asleep again. I closed my eyes and tried to change the direction of the dream. I willed the woman to live, to survive this unsurvivable accident. I don’t know if I succeeded, even though the entire premise was born of my own brain. (My own, hopefully no longer diseased brain.)

I am grateful to be feeling this well. But I am in great spiritual pain for our country, for the ease with which guns, ammunition, empty or inflammatory rhetoric, and racism, flow, violently.

Last night we sat by the very engorged Big Thompson River, after eating s’mores. The boys threw rocks and pebbles into the torrents with glee. When Young A asked what would happen if he put his arms in, “just” his arms, we knew it was time to leave the river bank. Retreat. (Still no clue what the German construction worker represented. Open to guesses.)

The school year ended. It’s only when it ends that you let yourself perceive how much of a weight it has become by the end. The kids’ disappearance from the house in the morning accelerates into something that feels like it’s only a half-hour long, and their restlessness is palpable. I’m sure no one becomes a teacher because of the last week or two of school, when they are forced into roles more akin to cat herder… or prison warden.

We made it. We all did. It wasn’t long after the year began that my lung metastasis showed up. And then the brain stuff in mid-April. So in a way, my metastatic cancer experience has sort of bookended the school year.

It was a banner year for both Young J and Young A. Last night as we ate Indian food for our Shabbat dinner, I asked them each what had been their favorite thing about the year. (Some of their teachers may be reading so I won’t report on their findings. Let’s just recall that kids can sometimes have much better short-term than long-term memories!)

Then I wanted them to know what I was most proud of. Young A began reading this year, and became quite a role model and official reader in his class. It was easy to praise that.

Young J’s greatest accomplishment, in my opinion, was not academic at all. This year, Young J learned how to be a friend, and found good friends, three of them. Going through his school notebooks yesterday (always a dodgy prospect when you have a kid with ADHD), I found one of his math notebooks had been repurposed into a notebook for listing out how the school could be made better. It has about five chapters worth of ideas, and it seems clear that Young J was the official recorder – some of the candy suggestions, for example, were things he’s never tried and I’ve never heard of.

And then, not willing to leave well enough alone, I told them that my favorite thing about the school year was that I was still around by the end of it. Of course, I did not phrase it that way, and I’m hoping my kids don’t learn for a very long time how serious my illness was (is?). I told them I was happy to be feeling better at last.

I’m strapped in an airplane seat right now. We’re heading to Colorado for a week before the kids start camp. We’ll be in Denver visiting J’s aunt, and then go with her to Rocky Mountain National Park. I was in Colorado once before, at age 14, when my brother U played in the Aspen Music Festival. I’m looking forward to sharing the majesty of the mountains with the kids. I hope neither of them is afraid of heights  (what a time to discover it). And we’ll also do a lot of railroad-related activities. And maybe some horseback riding, which I was cleared to do during my last call with Nurse Practitioner R.

Mainly, though, I want to shout from the mountaintops that science has allowed me to survive (thus far) the tests of the past months, and I have a community that has supported me and sustained me and cared about and for the kids and J, and also patiently listened when I was a raving lunatic on steroids. Turns out we didn’t need that trip insurance after all. I’m glad the fee went to waste.

I’m feeling good enough to ride a horse. Nothing else really matters right now.

I’m glad to be rid of them. Really I am. It’s another step towards wellness. I’ve been sleeping so well at night, we almost all overslept this morning, waking at close to 8.

But they are making their absence known. I’m – as you may have noticed – a less prolific writer than I was. Also, I woke up yesterday morning with a pain in my wrist as though I’d broken it, or slept on it wrong. By today, it was even worse. I called my primary doctor, but she wasn’t going to be able to fit me in before I needed to pick up the kids from school. I considered going to urgent care, but that threatened to eat up my day. A day to spend in pain, granted, but a day all the same, not to be wasted in pursuit of healthcare.

I went to the gym and managed to get through class with no pain, except when putting away my equipment. I even managed to do fifty squat jumps over a Bosu ball, something I certainly hadn’t tried since my little brain problem showed up. And it was fine! I didn’t fall over!

After gym class, I placed a call to Dr P’s office to consult with Nurse Practitioner R about my predicament. I figured it might be related to the steroids. When she called back, she confirmed my suspicion. The steroids were anti-inflammatory and therefore masking the joint pain that can be a hallmark side effect of dabrafenib.  I’m glad I called, as always. And glad I looked up the list of side effects once again, because I’ve been experiencing hair loss too. I have very thick hair, so it’s noticeable only to myself. I hope I’ll get to avoid the other symptoms, but at least now I am prepared. Thickening of the skin can also be a side effect, as I discovered at the podiatrist the other day, when he shaved off about three inches of calluses from the balls of my feet.

The highlight of my day, though, was the arrival of cousin R in town. We see each other usually once a year, because she lives in North Carolina. But she wasn’t at Thanksgiving last year. We’ve bonded lately over illness and science dorkdom (although she is actually studying for a degree in biology, where I am a mere dilettante in oncology). Also, what she has been through medically in her young life (she is 24) kind of makes me feel like a dilettante too – she had a kidney transplant at age 13. She’s a tremendously accomplished and smart person and I’m so excited to see what her next move is. Go R!

I’m back in the doldrums again now though, heating pad wrapped around my bum wrist, while J makes dinner before going to play basketball. (The kids won’t get baths tonight, by executive order of Mama.)

Whoa. Several days of silence here. I’ll eke this out right before I crash for the night. Thank you for not worrying about me. I mean, I hope you haven’t been. This is much more like me, not on steroids – letting a few days slip past before posting or replying to emails or getting things done. I have some pages in the printer that I sent to print three days ago. I haven’t looked at them yet. Meantime, today I somehow crammed in about three things I needed to do, right before picking up the kids from school at 3. If I hadn’t spent two hours in bed with the AC cranked, recovering from my grocery shopping trip on a very humid day, I might not have had to hurry.

J and Young J returned from the school camping trip today, happy and unscathed and unrained on and not a tick on them. Young J lost neither his good hat nor his water bottle. (But I was glad J was there to keep tabs on this stuff. And the teachers appreciated his help, too.)

Next week is the last week of school. Then we leave immediately for a trip to see some very tall peaks. There is a strong possibility of horseback riding, so today I placed a call to Nurse Practitioner R to see whether the proscription on my doing any activity involving bouncing is lifted yet. After she ascertained that it was horseback riding, not skydiving, I was planning to do (I guess they rule nothing out with me, ever since I made the bold move of eating avocado when I was about to develop a rip-roaring case of colitis), she said to do what I like if I’m feeling up to it.

I’m hoping this time around I get a super mellow horse, but prior experience tells me it may not happen. I’ve been horseback riding about seven or eight times, maybe ten, tops. So I’m not a maven, but not totally new at it. I’ve in the past managed to: get the horse who’s rearing back on its hind legs in the stall and is named “Feisty”; get the horse who knows a shortcut none of the other horses would dare take, which maybe pins my leg between its body and a tree for a short while; have my stirrup somehow come undone, halting the whole group, on a steep descent in Simi Valley; or get the horse who gets a little too close to the edge of a cliff on a very sandy trail, while we descend from a mesa in Chile. I wish I were making all this up. It’s extreme sports kind of stuff, and I am decidedly not an extreme sports person. Maybe it’s a vibe I give off to horses. Maybe they see me approach and know I am a  person to mess with. Anyhow, I’m hoping the hypothetical Colorado horses are not in on this vibe. The horse in 2001 who escorted me across a lava field in Iceland in February’s freezing rain did not misbehave. (Maybe it was too cold to?)

Anyhow, this week I trained for being outside my comfort zone when I went to Young J’s last day of soccer class festivities. There were four or five moms there, two little brothers (including Young A, who sat clutching his backpack and refused to participate). We played “Clean Your Room,” which involves making sure all the balls wind up on the opposite side of the room to where you are. We played three rounds of tug of war (moms vs. sons, we let them win). And finally, we played a game of soccer. I am not a sporty person. Never have been. I managed to make a goal for the moms’ team because the ball rebounded off my shin into the goal, and we were playing in a very small space. Did I mention I’d had a pretty bad headache going into all this? That there was pop music playing to pump us up? And that the way the sound bounces off the walls of the gym made me feel like my very head was melting off? It was 77 degrees in the gym, according to the thermostat, which I lowered in the hopes some unseen source of ventilation might kick in. I truly felt like I survived that hour, way more than I feel like I survived brain surgery. (Brain surgery was actually way more relaxing, and the musical accompaniment was Satie.) Young J was so happy to have me there, so for his sake, I was glad to suffer. A horse in Colorado should be no problem, compared to that. As long as its name is not “Feisty.”

I met my new shrink this week. I really liked her, but she doesn’t take our insurance. According to my calculations, I’ll have to see her 21 times before our out of network deductible is met and I see any kind of reimbursement at all. So I’ll have to see how this works out. On the plus side, she had me fill out two forms, one screening for depression (I decidedly don’t have) and one screening for bipolar disorder (I definitely do have… when I’m on Decadron!). I filled out the bipolar questionnaire with my recent steroid experience, and then quickly explained as she looked through it that none of what I had marked is true for me normally. She did tell me I seemed like I had things together, which is so nice to hear from someone officially certified to tell you so. Still, I think I can still benefit from talking with her – there are a number of things in her background which make it a good fit. I hope to find some work soon to finance the head shrinkage. I’m not looking super aggressively, and certainly not looking for a daily commute type job just yet. It sure would be nice to have some more translation work fall in my lap. It’s all about where you place your lap, I suppose.

I’m looking forward to a classic summer weekend – swimming pool, picnic, BBQ. The only thing is, I’ll be stuck in the shade the whole time, unless the elusive gift of cloud cover without rain lets me emerge from the shadows. I’m feeling lucky. It could happen.