Cancer On My Mind

Ha ha - I couldn't help myself.

My dedicated readers will recall from my last post, "The Other Shoe," that although Xalkori continues to be totally amazing at controlling the cancer in my body, it is not doing so hot in my brain. 

So, as I predicted, I have amped up my participation in the medical appointment world, and have seen a radiation oncologist, a neurosurgeon, corresponded with several lung cancer specialists, and had a high-definition MRI. Having cancer is definitely a part-time job. But on the upside, I now have a RAD onc!

Both the rad onc and the neurosurgeon expressed some skepticism about the two tiny spots that the MRI picked up, questioning if those were even brain mets at all (there was no question on the 9 mm one). The repeat MRI used 1-2mm slices rather than the standard 5 mm slices, so that they could get a very high definition picture of what was going on in my brain. The stereotactic radiosurgery (SRS) is highly precise, so they need to know details down to the millimeter.

The good news is that, as far as they can tell, the two tiny spot were not actually mets at all, so there is just one met to treat. Who would have thought I would be happy about being told I have one brain met? It's all about perspective. Maybe they should take this approach with all diagnostic testing.

My SRS is scheduled for Monday, October 26. They do the planning scan in the morning, then I hang out all day while they sit around and chat plan my "brain surgery" (that involves no cutting), then they do the procedure that afternoon. They said to expect to be pretty wiped out the next day, but I shouldn't experience any major side effects.

Oh, technology!

On the home front we have done some major rearranging of the rooms in our house. It is something we have discussed several times, but hearing that the cancer is on the move again pushed us to take the plunge. The kiddos now all share the largest room, an odd-shaped attic space that is actually a much better room for kids than it was for Jason and I. Parts of the room are too small for an adult to stand upright, and there are weird little nooks that were kind of wasted space for us. Now the kids have an art nook, and dress up corner, and a comfy reading spot. And they are still young enough to think it is cool to all share a room. Jason and I have one of the rooms downstairs now, and the other room is a guest room/study. Knowing that we have a space where grandparents can sleep when they help us out is a great comfort, and it helps ease the worry that we may be needing more help in the future.

AND I got to do something I've wanted to do since I was a kid. I always said if I ever owned a house I wanted to paint it. Not in the normal paint-a-wall way, but to just grab some paints and start decorating it. So, we all did just that and painted the stairwell leading up to what is now the kiddos' room. The kids have asked if we can do this every day, and there are still blank spots, so why not?

A Monster Calls

 
I just finished an incredible young adult book. It is the kind of cancer book I would want to write if I ever write a cancer book. It has monsters and talking trees and tells the truth the way only fiction can. It is so very sad, and it gives me hope. Not the I-think-I-might-be-around-for-a-long-time kind of hope, but the scary, painful, they-will-still-be-okay kind of hope.

"Stories are important, the monster said. They can be more important than anything. If they carry the truth."

The illustrations are stunning, so here is a "book trailer" (I guess that's a thing now?) that gives an overview and shows some of the amazing artwork.




The book was written by Patrick Ness, but as he explains in the Author's Note, the story was conceived by Siobhan Dowd. "She had the characters, a premise, and a beginning. What she didn't have, unfortunately, was time." I'm sure you can guess what caused Ms. Dowd's death at age 47.


Zander saw me reading the book and asked me, "But I thought you didn't like to read scary books? I thought you said scary books and movies give you nightmares?"

What I said: "...Oh, I don't mind some scary books."

What I didn't say: "I already have nightmares about the stuff in this book. Reading it helps me deal with the fears."

To all my cancer pals out there with young children, give this book a read. Or don't. It is powerful and beautiful and very painful, but I'm so glad I read it. When my kids are older, I think they might want to read it, too.

The book is being made into a movie, to be released in October 2016. And my first thought was the same first thought I always have when I think of something scheduled for the future.

I hope I'm still here to see it.

Assorted thoughts on twins and more

As the shock of raising two babies at once (with an almost 3 year old in the mix, too) is wearing off, I am starting to see a lot of wonderful things about having twins.

Autumn

It seems no matter how we place the girls in their crib, the wriggle wriggle wriggle until their heads are touching and they are holding hands.

Autumn, Mikaela

It reminds me of their first night in this world. See, in the womb they had been positioned head to head, with the top of Mikaela's head touching the side of Autumn's. Their first night in their incubators, Mikaela, tiny as she was, managed to scoot all the way up to the top while Autumn wriggled all the way to the side. I think they were trying to find each other.

Mikaela

I walked into their room the other day to find them chattering to each other in their crib. So adorable. And they both giggle in their sleep! What's up with that? Z did it too. Quite wonderful.

Mikaela

I am getting excited about going back to school in the fall and starting work on some creative projects coming up. I'm not sure how it is going to feel juggling work and the newly-enlarged family, and I get little pangs of sadness to think that I might miss out of those great moments that the kids have. I was complaining to Jason that it is hard having both a family and work that I love. Then I paused and we looked at each other. He said, "Isn't that exactly what we have been trying to create?" Oh, yeah. I guess I am actually incredibly lucky. Nice to have it back in perspective.

The first time Z saw one of his sisters spit up, he recoiled in disgust (which is particularly funny to those of you who recall how much he used to spit up). Then just the other day, his sister spat up and he casually got a kleenex and cleaned it up. Jealousy issues and all, he is still a pretty great kid.

So he does alright most of the time, but when the girls get particularly needy, Z kinda falls apart. It reminds me of this idea I had years ago of doing a variety show lit entirely by the audience. Upon entry to the theater, each audience member would receive a miner-style helmet with a light. There would be several things happening on the stage at once, so whatever grabbed the attention would be lit, and everything else would go dark. I realized it would probably just dissolve into a bunch of attention-getting tricks. This is pretty much what happens to Z. "Oh, the girls are crying? Well . . . look at me! I just dumped out all my legos! Still nursing? Um . . . then I will dump a water bottle on the couch. Did you see that, Mommy? Look at me! Pay attention to me! Mommy! Mommymommymommymommymommy!!!" Totally transparent, totally understandable, and totally exhausting.

The world's cutest triceratops

The jealousy issues we are experiencing are basically the typical new baby problems that every older sibling has, only more so because, well, two babies. Plus we cannot go anywhere without attracting at least a few gawkers. While I am the first person to agree that the girls are gorgeous, these onlookers fail to notice that they have an equally wonderful older brother who stands silently by while people "ooh" and "aah" over his little sisters.

So if you are one of those people who likes to stop someone pushing a twin stroller and comment about the babies, please take a moment to notice if there is an older sibling you are overlooking, and send a little love that way.

Zander sharing his buddies with Autumn

Melbourne Arts Festival

I happened to be in Melbourne during the annual International Arts Festival. There were events throughout the city, both indoors and out, and most of them were free. Here are the ones I went to see. I've included their press info in italics, just because I think it is interesting to see how artists promote themselves (I might get a bit theater-geeky here, so beware).

Ride-in Movies
The days of the old Drive-In Movies may be all but gone, but the nights of the Ride-In Movies are about to begin! Put on your best pair of walking shoes, jump on your bike, catch a train, tram, bus, and join us at Federation Square every evening from 6pm to 7pm. Ride-In Movies features nightly screenings from the home movie collections of notable Australians from around Victoria, as well as the home-made, hand-spun movie-making enthusiasts, auteur hobbyists and backyard directors of the ACMI Archives.

Each day had a different theme. Here's the one for the night I went:

Soap Operatics
Social training films from the 1950s are given shiny new narratives by some great Melbourne writers.

The setting was really cool, with a projection onto the side of a building in Federation Square, right downtown. Beneath the screen was a small stage where the host and the people reading the voice-overs stood. There were folding chairs set up, plus the Square is nice and open with steps all over the place that people were sitting on.

It was a device that I had seen before, where they show one of those old films (this one was about how to find the right man to marry) and people record a new soundtrack. The films were pretty funny, though I was annoyed by the lack of precision with the voice-overs. Sometimes they would have the character keep talking when a new one on the screen had started, or they would have very long lines when visually the charater only said a few words. It threw the comic timing off and made the whole thing feel sloppy. There were some funny moments, but overall it was pretty mediocre.

Lone Twin
UK performance duo Lone Twin make work dealing playfully with ideas of travel, place, endurance, human interaction and kindness. Since 1997 Gregg Whelan and Gary Winters have worked across contemporary theatrical, live art and dance contexts to make generous, entertaining and publicly accessible work. They are now set to take Melbourne by storm.For the first time ever, four works by Lone Twin can be seen in the one place as this performance pair settle in for a Festival residency sure to be remembered. You might see them in the street, on their bikes or by the Yarra, but to really understand what Lone Twin are up to, come and share in their four incredible unique performance works.

Here's the one I saw:

To the Dogs

Armed only with two small folding bikes Lone Twin will cycle around town by day and return each evening at 7.30pm to deliver a performance-dispatch of the day’s events.

An interesting note about this is that the first night it was seven minutes long, then each subsequent night they add another seven minutes so by the end of the week of shows they have a 49 minute production. I saw it on the second to last night.

This one was also in Federation Square, and the audience sat on a staircase with the two performers at the bottom. It was getting dark when their show began, so it was lit mostly by the surrounding lights of the city, plus they were wearing reflective bicycle outfits. They looked pretty funny, but the writing was weak and they were not at all theatrical. It was a lot like two guys standing there talking about stuff they had seen that day. This photo shows the the most movement they did during the piece. Since I have a total bias toward movement and physicality on stage, this bugged me. The audience seemed to enjoy it, but I wonder if it wasn't just fun to sit out on the steps and watch something, regardless of the quality.

Theatre for One
The Late Great Libido: Rock Opera
Come inside the custom-built Theatre for One to experience a unique and very clever video-based piece performed just for you. Behind the red velvet curtain inside this single-seater theatre you can be the sole audience member for the 20-minute theatrical installation The Late Great Libido: Rock Opera. This multimedia presentation from creator Justin Harris incorporates elements of music, video and sculpture in an intimate and creative representation of a live concert.

I was totally intrigued by this idea. It some ways, it seems entirely contrary to the idea of theater since it isolates the audience member and removes the communal experience of seeing a show.

I loved the set-up, which was essentially a booth in the plaza area in front of a building. Behind that red curtain (see the picture above) is the single seat where you watch the show.

When I went around the corner to pay my $2 entry fee, I was very disappointed to discover that it was sold out. But it got me thinking, if only one person at a time can see your 20-minute show, you're really not going to reach many people. Again, what a weird thing to do for theater. I talked to the ticket guy about this, and he said that there was major corporate funding for the festival, so there wasn't a concern or even a real attempt to make any money on this. He also said that the artist was more focused on the rock opera, and that the Theatre for One idea was sort of an afterthought to get people interested in hearing his music. Well I guess it worked, since it was sold out. I think it is a cool idea, but kinda feels like you are shooting yourself in the foot.

Xu Zhen
The last few mosquitoes
From inside the body
For the Festival, Chinese artist provocateur Xu Zhen brings two installations to Spacement: The last few mosquitoes and From the body.

Finding this place was a challenge, and I actually walked past it and had to go back searching for it. The Spacement building is at the end of this alley, and around the corner to the left. Can you see the sign that says Spacement? No, me neither.

Once I finally found the building, there was a steep, dark staircase into a warehouse-style basement. On the left was a large room painted all white. When you look closely you can see several mosquitoes on the wall, about two inches long. Upon closer inspection, you discover that their bellies consist of a thin glass tube that rhythmically fills with red fluid, then drains out again. I'm guessing this was the installation called "The last few mosquitoes." It looked kinda cool, but didn't do much for me.

Next to this is another empty room. There is a wide, white wall, onto which three images are projected. Each camera is aimed at a brown couch, all identical. A man enters the left screen at the same time that a woman enters the right. The center couch remains empty. The man and woman each sit and remove their shoes and socks. As they are doing this, they start to notice a smell. It builds slowly, with just a distracted sniff as they untie their shoes, but gradually they become obsessed with finding the source of this smell. (To the theater geeks out there: it is basically a Lecoq-style minimum to maximum scene.) As they are searching for the smell, they sniff all over the room and all over themselves, removing much of their clothing in the process (they keep on tank tops and underwear).

They eventually wander off toward the center screen, and a few moments later enter and sit on the center couch together. They are being polite, but are clearly distracted by their desire to find the source of this smell. This again builds until they are climbing all over each other, sniffing and searching. (If there are any Rough & Tumblers reading this, it reminded me of the scene we did with Kristin and Michael trying to sit on the chair.)

Overall, I really liked this piece. The man was particularly good at playing the low levels, and his subtlety made it really funny. The woman had a bit of the "gosh, what is that smell?" look to her, which was annoying at times (for the Dell'Artians out there, I think Ronlin called it "playing at the thing"). My main criticism is that it built to nothing. Both endings just fizzled out (when the two left their individual screens and when they left the center screen). I kept thinking "Where is the white moment?" Or for the non-theater-geeks, "When do you realize yourself and what you are doing?" Even if they didn't go with the white moment that I've come to expect from all that wacky physical theater training, they needed some sort of completion to their journey. The build was great, but ultimately it felt like it built to nothing.

In spite of this, I really liked the piece. It was odd and kept my attention, and it is not every day that I get to sit in a dark room watching people frantically sniffing.

Expo 2005

Expo 2005! A chance for all the countries of the world to present something at a giant festival where we can learn about each other and the environment (the 2005 theme).

Expo at night.

Expo was cool, but totally crazy. The lines were insane. Some pavillions had lines with wait times of over 3 hours. Needless to say, I did not get to see all of them. Some of my favorites:
- UN Pavilion which had a fantastic photo exhibit from around the world (I have snapshots of some, but due to technical dificulties I can't put them up right now. Perhaps I can fix that later.)
- The French Pavillion had a great movie which took a very honest look at what everyone (specifically France) is doing that is harming the environment. Really well done.
- The Lithuanian Pavillion had great beer and really cool people working there.
- The Korean Pavillion had a poignant animated movie about the destruction and rebirth of the natural environment
- The Turkish Pavillion won the coveted Tori Low Prize for Best Design.

The Turkish Pavillion

- And of course, the Toyota pavillion where James was performing.
Tickets to get into that show are an incredibly hot commodity. James was able to get tickets, but it had to be done in secret. We had to meet at a certain location at a specific time for the drop.

On Tuesday, I went to that secret location.

A young woman sidles up next to me.

"You are, perhaps, a friend of James."

"Yes, perhaps I am."

She slips me an envelope with the tickets and walks away.

The show was pretty entertaining, with robots that can dance and play instruments. Plus there is a fantastic aerialist (James) who flies around above the dancers looking pretty cool (though James thinks the costume makes him look like a chicken).

Finally, I will offer you my experience with the Linimo.
The Linimo is an elevated train that is powered by magnets. The train itself hovers slightly above the track because of the like charges. As a result, you have an incredibly smooth ride. This train line is what you take to go to and from the Expo site. Expo, as I have mentioned, was packed. Taking the Linimo home at the end of the day was an intimate experience in squishing together with a bunch of strangers. Fortunately, the train is air conditioned because it was stinking hot and humid in Japan.

On my last day at Expo, James and I stayed until closing then joined the thousands of other people who wanted to go home. There we were riding along, packed in like sardines when all of a sudden - - - whoooooom - - - (you know that lovely sound that happens when the power goes out), and the lights go out, the fans stop, and the train DROPS. Not far, just an inch or two, but enough to make everyone in the train gasp and go totally silent. We sat in that heavy silence for about 30 seconds, then people began murmuring things to each other. What was going on? What happened? How can we get out of the train? We are several stories up, what happens if we fall?

There is static and the train conductor comes on. He says something in Japanese. We sit and wait. It is getting really really hot and stuffy. Finally the train starts up again. We start going, and just as suddenly it happens again. Whoooooom, drop. More waiting, more silence, more tension, more announcements. We start up again, and eventually make it to our stop. I have never been so happy to get of a train before.

Ah, Tokyo

What a city. Such a huge range of things to do and see. I would need weeks to get a real sense of the place. As it was, I got an overview and a strong desire to come back again one day.

A view of Tokyo from the top floor of St. Luke's Tower.

James' old Japanese teacher Michiko and her husband Hiroyuki showed us around Tokyo.

Some highlights:

We had a dinner of Okonomi Yaki, where they bring you a bunch of ingredients and you cook it right at your table any way you like it.

At the Edo-Tokyo Museum they had a replica of Tokyo as it was during the Edo period.

This was a replica of a Kabuki stage.

Meiji-Jingu is one of my favorite places in Tokyo.

The archway that marks the beginning of the pathway to the shrine.

The path to Meiji-Jingu.

The shrine itself.

James and I did a lot of wandering around Tokyo. We were walking through Yoyogi Park when we heard music in the distance. "Something cool is going on over there." We headed out toward this plaza area and sure enough, there was a hip-hop festival going on with music and - best of all - a break dancing battle.

This was right by Harajuku, which is where the goths and punks hang out. There were some totally fabulous outfits, like a goth girl wearing this long white fur coat and huge fur hat thing. Uh, I'm not describing it well but I was not game to try to take a picture after my subway incident.

Late one night we went to Shinjuku, the red light district of Tokyo. What a place. Historically, this was where the black market sprang up after the end of WWII. People could come here to get anything they wanted. Strange how it has kept that element throughout history. Now they have really stylin hosts and hostesses, I believe they call them. Dressed to the nines and walking around the street trying to encourage people to go into the bars, have a "date", etc. It was a cool place to see with awesome looking people everywhere. As a side note, the majority of the really hip looking people appeared to have their hair done by Jen LaMastra. I guess her teacher was right when she told her she had a very Asian sense of hair design.

Speaking of which, I decided to get my hair cut while in Tokyo. It was a cool experience with lots of pampering. The shampooing was very different. To rinse they used a dish and sort of scooped the water over they hair, and the water was oh-so-hot that if it were one degree hotter it would be too hot but it was absolutely perfect. This reminds me of something I've noticed here. There is such attention to detail. To give an example, we were sitting in a coffee shop and I reached for the sugar bowl. When I picked up the spoon, the way it fit in my hand made it feel like it was created just for me. The balance was perfect, the angle of the spoon exactly right. It seems like such care is put into everthing from the design of a room, to way someone hands you something, to the placement of the piece of tape on a package.

Anyway, the salon was great, and they brought me tea while they were cutting my hair. Here's a picture of my new haircut.

Back when I lived in Boston my favorite restaurant was Roka. Wheneven I talked about how great their yakisoba was, James would tell me that I haven't had REAL yakisoba until I tried it from a street vender in Tokyo. Well, now I have. And it IS really good (though I still think Roka's was pretty good, too).

James eating yakisoba.