Tagging!

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Tomcat 19, by Peter Kirkeskov Rasmussen on Flickr, licensed under Creative Commons

I find myself with a free day tomorrow and lots of pre-op nervous energy, so I’m FINALLY going to properly tag the posts here by subject, as a public service. I’ve been hoping other patients will find their way to useful posts regarding treatment, or even parenting with cancer, but in the blog’s current state that would necessitate a LOT of wading.  And people may or may not have time to wade.

I’ll keep posting the same random shit I usually do, so not to worry. You won’t feel a thing.

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Ground Control to Racer X

Racer X (from http://speedracer.wikia.com/wiki/File:Racerx.jpg)
Racer X (from http://speedracer.wikia.com/wiki/File:Racerx.jpg)

This post has been promised for a while now. I’m finally getting to it, G.

My brother G requested that Racer X, from the cartoon Speed Racer, be his avatar for this post. I am happy to oblige, even more so when I catch myself up with this character and read he is “[an] heroic, mysterious, flamboyant, selfless, sympathetic and often brooding soldier of fortune.” Okay, maybe the soldier of fortune part is a bit much. But heroic? Yes. Mysterious? Yes. Flamboyant? Yes, I think his oft-embarrassed teenaged children would agree. Selfless, sympathetic and brooding? Yes. YOU KNEW WHAT YOU WERE DOING WHEN YOU CHOSE THIS PICTURE, G.

I’m trying to remember my earliest memory of G, but to me he was always around, ready to involve me in some manner of mischief, or just a new discovery. Once our parents were old enough to leave him “in charge” while they went out, we developed a new ritual as soon as the door closed behind them. G would say, “Let the wild frolics begin!” We’d imagine swinging from the chandelier, but in actuality the frolics usually involved making popcorn. We didn’t have Jiffy Pop around, or a popcorn popper, so by necessity this involved taking the biggest pot available in the kitchen, coating its bottom with inches of Mazola, probably having the heat up too high, and not shaking the pot enough, resulting an ungodly stench of burnt popcorn and oil throughout the house. I don’t how the pot ever came clean. Sorry, Mom.

We fought a lot, but there were never fisticuffs. G is almost six years older than me and that wouldn’t have been very sporting. There were lots of insults and fake-insults and slammed doors. Speaking of doors and fisticuffs, G managed to make his way – via fist – through any number of doors in the house in which we grew up. Most were in anger or frustration, though one time I actually slammed my bedroom door on his fist. Another time, while G entertained me and my best friend M with a silly dance in the kitchen, his heavy Hebrew school shoe flew off his foot and right into a closet door. He got familiar with spackle and paint, but not particularly gifted at it.

Against all odds, and against all we know about learning as we get older, a few years ago my family assembled at a Mexican restaurant that had been in favor but which we quickly realized was going downhill. At the end of the meal, Uncle G was entertaining Young J and Young A by pantomiming a game of – I can’t remember now, tennis? Football? I think it was football. He took a few running steps backwards and tried to make a thumping sound against the back wall of the restaurant. His arm went right through it. It was a moment that would have horrified and embarrassed a normal family, perhaps. Having never been a very normal family, we had to hustle ourselves – all dozen of us – outside onto the sidewalk before our peals of laughter further offended the restaurant owner, who was decidedly not happy. I watched through the window as G apologized and offered to fix the damage himself. Somehow they didn’t take him up on that. He did pay for the repairs.

Thus far, I have made G/Racer X sound like a clown. You know what? He is. But he is obviously a lot more than that. He had a paper route, which I would help him with when I felt like waking up at 4 a.m. (once, maybe?). And he had a burning need to be an entrepreneur from very early on. In high school, he ran a bike repair shop out of our basement. He made up business cards, he made enormous orders of supplies and inventory which I was allowed to help him unpack, as his unpaid assistant. He did not need 24 tubes of chrome polish, but they did come in a handy display box which impressed me very much. Ditto on the dozens of rolls of handlebar tape.

G logged hours teaching me to drive, a project that spread over a number of summers owing to my initial lack of interest, the availability of only stick-shift cars in our family, and maybe some general familial inertia surrounding the youngest member learning to drive. G was the one who spent hours with me working on parallel parking on humid summer days in the high school parking lot, with one of the worst cars in our fleet – no power steering. After those practice sessions, I must have had biceps to die for. I couldn’t move my arms, either.

G and I also spent innumerable hours at one of two seasonal hangouts: the local pool and the ice rink. I was never a particularly gifted swimmer or skater, but G wanted to play hockey. My parents refused to let him. Result: Today he not only plays hockey, he coaches, and one of his daughters is a very talented goalie on her team. He’s also a very active fan of the local NHL team, and has done the unthinkable by getting my mom into it as well. Every Mother’s Day on Facebook, G posts a photo of Mom wearing a team jersey and looking bemused and also maybe a little befuddled, like she’s not quite sure how she got there. I love it.

Long story short, and because there has been lots of drama in G’s life in the past dozen years, Racer X is the person you want on your team. In a crisis, he’s on the scene practically before you call him. And you better let him help out, or else. Last fall, when I was just starting to feel sick and called Mom minutes after she’d been in a very dramatic car crash, I hung up when the ambulance reached her. I called G immediately. He was at the hospital when she got there, even snapping a photo of the man who’d caused the crash, and eavesdropping at very close range on the police officer’s interview of him, because G (like me) does not look like someone who speaks Spanish. G has always been fascinated by police proceedings, and one of his cars is a decommissioned cruiser that still has certain features which delight my kids: a loudspeaker and an air horn. (G’s neighbors must love it when we come over.)

We are three siblings in my family, and G and I have similar (and melanoma-prone) coloring. When I was diagnosed, G made sure to go get himself checked out. After all, we’d grown up in the same place and gotten the same awful sunburns. He got a clean bill of health from the dermatologist… for moles. However, a touch of MRSA was found in his scalp. (It must have come from the locker room. You see why Mom and Pa didn’t want you playing hockey, G?)

Recently, G moved his business offices. The process was so time consuming he had no time to pack his office. When he got to the new one, he dumped everything out on the floor and forced himself to deal with it. This was obviously going to need to happen fast, because he’s a CEO. But being as prone to distractions and sidetracks as I am, a project was born that I never could have imagined. He found some old issues of our high school literary magazine (he and I had both been staffers, at different times, with the same advisor). This was not some mimeographed and stapled affair. We won national awards and there were amazing writers represented . He decided to use the fancy new scanner at his office to create electronic versions of the issues he had. Then he put out a call on Facebook for issues from other years. (I’m sending mine with Mom next week to get scanned.) And he did it as a tribute to our advisor and teacher, P, who was extremely influential to many, many years of students. When I learned of this gesture, I was in the car, on our way back from a day trip that had begun with another thing that had nearly made my head explode (in a good way).  My heart was filled again with such love for G, and this truly random (but… maybe not) act of kindness that made a lot of people very happy.

I looked for a clip from Speed Racer, which we used to watch together on Saturday mornings, and found this one that seems so perfect for what I’m trying to say. (Except, of course, that G never knocked me out cold before the helicopter arrived.)

Guided visualization

I’m looking for images to hold in my mind’s eye next Tuesday. Here’s a good one.

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Explored: No. 2, by frankieleon on Flickr, licensed under Creative Commons

I think I’ve decided on an All-Satie soundtrack, because it turns out the gamma knife machine is quiet enough for you to actually listen to music without the jackhammer intrusions.

Meet the neurosurgeon

Today I entered a new province of the hospital – Neurosurgery. Different view from the waiting room, different forms to fill out. The neurosurgeon wants to know which side you favor, right or left. Good thing he isn’t talking politics. Neuro neutrality. The neurosurgeon is more of the Sergeant Joe Friday of the cast of medical characters I’ve met so far: Just the facts, ma’am. (Not as hard-boiled though. A nice, mellow Canadian.)

He did ask me about my professional background. That was interesting. Maybe it was all just calculated to make me talk and see if I was slurring my words? Hardtosay. I gave him a brief CV.

I did get up close and personal with my brain imagery today. Here’s what I saw:

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Holy moly.

Looks like a bunch of x-rayed beetles, I know. Let’s zoom in.

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The top image, the MRI from the ER, shows the area with the largest tumor, in mid-April. That’s the large white rose-like area. The bottom image shows the same area, last week. Notice a difference? Looks like something off The Weather Channel. I prefer the bottom forecast, don’t you?

So, insurance and other things permitting, I’ll be going for a ride in this thing next Tuesday.

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http://www.neurosurgery.pitt.edu/sites/default/files/Perfexion.jpg

The party starts early, 5:45 a.m. But – like so many things in my Cancer Journey thus far, it hopefully ends right in time for lunch.

Right now, though, Q train, pleeeeease don’t let me down. I’m going to hear some Baroque opera at the Alliance Française, and I’m hoping not to be late.

(Hoping Not To Be Late: A Cancer Life. Eh? Ehhhhh?)

Numbers game

Nurse Practitioner K got to break the good news today – my liver numbers went down! As of today. In case you don’t know what that looks like, here they are and what they looked like as of last week:

These are your liver numbers. Rightmost column: These are your liver numbers on dabrafenib. Off the charts, you might say.
These are your liver numbers. Rightmost column: These are your liver numbers on dabrafenib. Off the charts, you might say.

You don’t need to know anything except the left hand column shows what the normal range is. The rightmost column shows where I was last week. Off the freaking charts.

What did that actually feel like? I wish I could tell you. The steroids are to blame for pretty much everything I’ve experienced, but I’m down to just 1 mg a day of those, so the effects are diminishing each day. You don’t suddenly get a pain in your liver. I couldn’t point to my liver if you asked me to. (I’m a librarian, I know where to look it up if needed. And my brain is maybe slightly compromised right now, so I am adding new information to it only on a need-to-know basis. Also, sorry – I haven’t watched the recent PBS documentary on cancer. Do coal miners go home from work and watch documentaries on Newcastle?)

What today’s miraculous numbers correction reminded me of was an episode during my pregnancy with Young A. I was hoping to use the birthing center at the hospital, and give birth with a midwife on hand – because my idea of fun is to be stubborn and see if I can put up with lots of pain. When it came to childbirth, morbid curiosity about how much pain I could withstand was basically my birth plan. (I didn’t know Young A was going to come out 9 lbs 7 oz, with a head circumference that was proclaimed “off the charts” once measured.)

My blood work came back slightly ominous one day. My platelet count had dropped precipitously. If I didn’t get it back up, I was going to “risk out” of the birthing center I’d been so looking forward to using. My amazing midwife (and now friend) S suggested I take a supplement called Coenzyme Q10. I remember distinctly her telling me, “We don’t know why  it works, but it seems to.” I found some and faithfully popped a capsule every day.

Next blood work results, success! The numbers were back up to a normal level. I got my birthing center birth, an Alice in Wonderland-like midwifery induction of labor that included Greek takeout from across the street (EAT ME) (promptly vomited a few hours later), the swallowing of herbs in liquid form (DRINK ME), many walks up and down a flight of stairs (WALK ME), realizing the jacuzzi tub was way too loud to enjoy during labor, but feeling too embarrassed to jump out immediately since it had taken so long to fill (ENDURE ME).

Speaking of which, last week when I saw Dr P, I told her how much my treatment was making me think of Alice in Wonderland. She stated her preference was to be the Mad Hatter. She’s got a lock on it for the film version.

Home again, home again

We were truly terrified of the drive back home today. Sure we’d hit a solid wall of traffic. We’d left early on Friday morning, and that had served us well, so we tried to leave “early” again today. That never quite works out for us, when we’ve been visiting my parents. There is the general chaos the kids cause, the feet-dragging on my part because I hate saying goodbye to them (even though in an enclosed space and over a three day holiday weekend, we probably all need some space from each other). By the time we’re rolling out of the parking garage and towards the highway, I’m pretty sad. And it is never early. Today we maybe left at 10:30 a.m.

And yet – and yet- THERE WAS NO TRAFFIC. I guess everyone stays put on Memorial Day, until much later in the day? We even made our rendezvous with our favorite hole-in-the-wall Chinese restaurant in a timely way, right at the midpoint of our trip. Really, the only part of the first half of the trip I’d have skipped was Young J puking in the car and not getting him a bag to do it in right away. He was remarkably calm about it, and he had done us the favor of basically eating nothing all day up until that point, because he hadn’t been feeling well, so cleanup was (according to J, who just finished) not so bad.

Last night, J and I met up for ice cream with my friends N and R, not seen for years and years. We attended the same junior high, but I switched schools for high school (as did R) and I had run into N years later in New York, but not for a long while. She’s always made efforts to meet up when I’m in town, and last night things finally aligned. We ate our ice creams and then we opened the tailgate of our car and we just hung out in the parking lot talking until they started shutting off the street lights. It was good to touch the past and the present together, like jumper cables connecting to terminals. It was energizing, this reunion. And it helped me put pieces together. I know that’s pretty much all I’ve been doing this past month (or have I in fact been doing it my whole life? That’s my current Big Question).

We got back home and the kids slid into TV, Young J requesting a new show on Netflix that I had to pull teeth to understand was something one of his friends at school watches. Lately there’s been a lot of that mean-spirited Thomas the Tank Engine crap playing so I was hoping this show wouldn’t be quite as bad. It turned out to be about soccer, take place in France, and seemed to be populated by children with no parents around. At first I thought they were all orphans, but then Young J explained they were at some kind of boarding school. I’ll have to sit down and watch an episode with him tomorrow to vet it. It looks… eh.

After dinner, J took Young A out on his bike, and Young J and I started drawing a comic together. He loves collaborative drawing projects, and he loves my drawing – something I’ve had to learn to accept as the truth. I grew up convinced I could not draw a thing, and school certainly didn’t convince me differently after elementary was over. I never imagined it would take an 8-year-old – MY 8-year-old – to finally get me to feel less self-conscious about expressing myself through drawing.

We took his little cartoon notebook which has each page divided into six frames. He titled the first one: THE PASTA PILEUP. We’re only about halfway done, but the scene is set. Italian restaurant, two customers, one a dreamy children’s book author (male), one a possibly bitchy woman who demands her pasta be AL DENTE. There is a closeup of the stove in the kitchen, where two pots are boiling, one labeled spaghetti and one farfalle. After they order, the man calls across the restaurant to the woman: “Howdy.” (It’s a cliffhanger. Tune in tomorrow! Maybe!)

This is how Young J reels you in, I’m realizing. We share some close moments having fun with a drawing project. Then he asks me to keep him company while he takes a bath. I do. Then he lays on the heavy trip. “Mom, why did you quit your job? Why didn’t you just put it… on hold or something?” I start trying to explain to him the complexity of my situation, the work situation, our financial situation. It was all a little much. Ultimately I told him that if I hadn’t quit it would have been much harder for me to get well as quickly as I have. He still remembers me last fall. I had hoped it had faded like a bad dream, but I don’t think it has. Not enough, anyway. He was wrapped in his bath towel, leaned forward and kissed my nose, like we used to do when he was much younger.

While he was putting on PJs he said, “You know, things seem different than they were a couple of years ago.” I asked him in what way. He said, “I never thought you would get cancer. And there have been plane crashes, and that car on fire…” I loved how he brought together the global, the familiar, and the totally random. There was a car on fire down the block – last year. We’d seen it on the way to school. I guess it made an impression.

I was crying by this point, and told him what I’ve said here and said to friends: That the thing that feels worst to me is I don’t know how it feels to have a sick parent. I never went through this as a kid. I told him that more than anything I wish I could take away this feeling. But I also made sure to tell him that good and bad things have been happening since the world began. It’s just that at his age, he’s starting to hear about more of the bad ones.

Then it was my turn to read a story with Young A. He dismisses so many of my favorite books out of hand now. “Those are for toddlers,” he said tonight, witheringly. I managed to find one we hadn’t read in a while, a derivative work, but with cute illustrations and a tale of friendship and loyalty. I just didn’t realize how much it would relate to my conversation with Young J about my job, until we got to this page:

From "Harry Cat and Tucker Mouse: Starring Harry," by Thea Feldman, illustrated by Olga and Aleksey Ivanov, Based on the books by George Selden and Garth Williams, New York : Square Fish, 2011.
From “Harry Cat and Tucker Mouse: Starring Harry,” by Thea Feldman, illustrated by Olga and Aleksey Ivanov, Based on the books by George Selden and Garth Williams, New York : Square Fish, 2011.

I got through the lullaby without crying, then had to scramble for a substitute spray bottle to use for the bad-dreams-away ritual spraying of the bedroom. I found a travel sized one, because my usual spray bottle was outside, cleaning vomit in the car. Turns out they don’t really care what size the spray bottle is, as long as there is one and I follow the proper protocol dictated by Young A (“window-Young A-closet-Young J-door-Mama-spray Daddy later”).

I sprayed everything with my empty spray bottle. We’ve been away a few days, it’s possible bad dreams accumulated in the corners. It was the least I could do.

Just tell me the boatman’s name wasn’t Charon

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My kids, asleep until 8:30 am. THIS NEVER HAPPENS.

A decent drive down to my ancestral home. An amazing reunion with my family. Lots of food (of course). Lots of exhaling. Eating – did I mention eating? – at any hour thanks to no moratorium on eating thanks to break from cancer drug. Today, a good long walk in nature, and some excellent food too. And Young J walked my brother’s dog.

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Young J walks J.

Only letting go of the leash once, which I have to say is pretty good for Young J.

We also took White’s Ferry back home. The last time I had been on it was July 1992. I remember specifically it was then, because I had just flown back from a very significant few months studying in Italy – my first time abroad on my own, finding my own place to live, deciding what my priorities were, oh yeah, and studying. It sure was hard to come back from that experience.

Perhaps my dad intuited this, or perhaps he wanted to avoid traffic. In any case, from the airport, we took winding country roads through Leesburg VA until we wound up at the ferry landing, with a stout overgrown Boy Scout indicating to the cars which line to get in.

“Welcome home,” the entire scene screamed to me. “This is the Potomac, not the Arno. This is a car ferry, and it’s not taking you to Elba. No, you didn’t find yourself a boyfriend in Italy, but that was just as well, because the options were ridiculous, and it wouldn’t have lasted. It will take you about a month to stop being a big snob about your time in Italy.”

It’s no Giuseppe Ungaretti, I’ll grant you that. But we don’t really get to choose what inspires us. I went back today to the ferry of my discontent of 23 years ago. It hadn’t changed, but I had. In infinite ways. And the boys loved the ride.