Enter the lists

From "Frog and Toad Together," by Arnold Lobel (HarperCollins, 1979).
From “Frog and Toad Together,” by Arnold Lobel (HarperCollins, 1979).

This was how my life was before. Before getting cancer for the third time. Before going back to work for about five minutes before cancer struck again. Before getting cancer for the second time. I used to make myself a list the night before of things to do the next day. Sometimes I would even figure out what time blocks I’d use and put things in chronological order.

Even with a list I still probably only got 35% of each list done each day. I didn’t know steroids could help with that. When I was high on Decadron, I never dropped a single ball. And I never made lists. Everything was clear in my head. laid out, almost a choreography of what needed to happen when. Do I miss that? Do I miss not letting things slip? Maybe a little. But I don’t miss it enough to go back to sleepless nights (or knockout drugs for sleep), or the manic, uncharacteristic gregariousness that I couldn’t control if I wanted to. Now, when I ride the subway, I’m no longer worried I’m going to talk to strangers. I’m not worried about starting conversations with people I usually avoid.

Last night was my most successful night of sleep since kicking the nightly Ativan habit. I did wake up at 5 a.m., but somehow coaxed myself back asleep. I think it was putting the pillow over my face to block the light that helped. Why is it so light out at 5 a.m.? Who needs that? And why do the birds have to make such a racket then? Some respect, please, birds. Sleep is still very hard work for me.

I wonder how much of the sleeplessness is part of my general anxiety. I placed a call to Nurse Practitioner K today, to check in and to find out exactly how I’m supposed to keep taking dabrafenib, the wonder drug, if it can elevate my liver function and I wouldn’t know it without a weekly blood draw. She said that I need to stay attentive to my general well-being, and that if I start feeling more tired than usual (hah – I will have to work very hard to figure out what my normal baseline is there), I should come in. This means tuning in to myself at a whole new level.

I feel like I am pretty aware of what’s going on with my body, generally. I can tell that my system has gotten over the worst of the steroid withdrawal. I didn’t spend the entire day in bed today, just a couple of hours. And I made it through a solo evening with the boys tonight without coming close to freaking out. (Even when Young A peed all over the just-cleaned bathroom floor due to bad aim.)

But I think the sneak attack of the brain tumors has probably changed me forever. I had headaches – just headaches – and I didn’t know what was happening to me until I had trouble talking. I wasn’t scared last fall, when cancer made a move on my lungs. I was pissed off, but not particularly scared. Now that my brain is involved, maybe I am a little scared.

In a couple days, I’m going to do something I haven’t done since junior high – go see a therapist, one who works with cancer patients. I’ve gotten pretty far for years with the self-talk I’ve done in journals or other writing (like this blog), but I think I may be at a loss for how to cope with the anxiety that builds up in between scans. My next scan is July 13. That’s not very soon. The lack of information concerns me. Maybe I’ll learn some new ways to cope with it. Maybe I should make a list of topics to cover, so I don’t misspend my hour.

Perfect Day

http://muppet.wikia.com/wiki/File:SS1969Cast.jpg
http://muppet.wikia.com/wiki/File:SS1969Cast.jpg

All I ever really wanted out of the experience of living in New York City was what you see above. That was imprinted on my cortex pretty early (and until second grade, via a black-and-white TV). When I first moved to the city, my housing situation had a company town feel to it (it was subsidized by my job), and then when I moved in with J to a hundred-year-old building two doors down, there was the gritty griminess of old NYC without much of the charm. (Except for our formal dining room. Ah, that room. It was almost enough to make you forget the mice and roaches.)

When we moved to Brooklyn, and particularly when we had a kid, and then two kids, in Brooklyn, Sesame Street began to happen. It became easier to stop and talk to neighbors, particularly the ones who tended to park themselves on the sidewalk anyway. One of our neighbors is essentially ageless, and we lose track of each other for months at a time. When I see her re-emerge from her building once the weather is good, our reunion is always joyful. When Young J was about two and a half, they ran a race against each other – she pushing her walker and Young J with his doll stroller. (I am pretty sure she won.) She likes to talk about her childhood in Alexandria, Egypt (and then sigh at how much the world has changed for the worse).

My experience of cancer in Brooklyn has also been a bit Sesame Street-like, though I don’t know that they’ve covered that topic on the show. The conversations I’ve had recently, the magic realism of my life here – in this seemingly dire circumstance, yet surrounded by loving and caring neighbors and neighborhood fixtures, practically feels like a ready-made episode… brought to you by the letters M and Q, and also the number 8.

A few weeks ago I tried to insert myself into the planning process of our block’s annual block party. I showed up at a meeting, and was very hopped up on steroids, and thought I could actually get shit done. I didn’t realize how difficult that would be. There was an unbelievable set of competing priorities and people talking over each other and frankly, unchecked discussion of hip surgeries. It was not going to happen. I tried to be helpful via email – also difficult. After designing one flyer that simply disappeared into the ether because I needed an email addresss to put on it, I gave up. One positive change over last year was that the NO PARKING signs went up much earlier in the week. As if by magic, by today we had nearly no cars on the block. So, even if nothing else happened, the kids were going to have a ball, biking and scooting and running amok with no traffic.

Today was the big day. It started rainy, but as the hours went past, the weather improved until it was the most perfect day ever. No humidity, sunlight filtered by the tall trees on our end of the block.

We took the kids for pizza, and discovered another block party happening one block away. They had a bouncy house. We took the kids over there to bounce. It was a little feral in there. And then we let ourselves be distracted by conversation with other parents we knew, and suddenly I saw Young A take a nosedive to the asphalt. After ascertaining that his head had not broken his fall (despite a couple scrapes on it) we left the premises immediately. I was instantly thrilled that our block hadn’t managed to scrape together the money for a bouncy house. Who wants that kind of liability? I was excited for our block’s non-event!

We got back to the block and Young J’s lifelong friend S and her mom came over (they used to live upstairs). After Young A recovered from his fall (with an hour of Netflix) they all went out to take possession of the street. This, to me, is the greatest luxury a parent of a young child in New York City can enjoy – the ability to lose track of your kid for many minutes at a time, and know they are at one end of the block or the other, and they’ll come zooming back by you presently. I know we could move to the country and enjoy this on a regular basis. But I can easily settle for once or twice a year. There were also stoop sales, a little girl selling jumps on her jump rope for a dollar, lemonade stands and bowls of free candy and chips – everything you’d want out of a day like this.

J, in the meantime, got his guitar and joined some guys from the next building over, who he’d found jamming on the sidewalk on Memorial Day. They set things up nicely today, with mics and everything. And they played this Dylan tune that just made my afternoon. (J tells me this isn’t the best version but it’s what I could find.)

Thank you, Sesame Street. Thank you, neighbors. And thank you, cancer, for hopefully buggering off for a while, so I could enjoy it all.

Decadron crash!

image
Wrecked German, by Peter Kirkeskov Rasmussen on Flickr, licensed under Creative Commons

I slept most of yesterday. It was good to be able to do that, because last night I had a rock show to go to.

We got home late. I was up a little later. This morning I managed to walk the kids to school, stop at the cafe for some tea and to finish reading a book, but since then it has been sleep punctuated by more sleep. I can barely keep my eyes open to type this. Ouch. Ah, just lowered the brightness of the phone screen to the minimum. Much better.

This is what it feels like when Decadron leaves your system. It leaves you shipwrecked, bereft, completely taken apart. Every muscle sore, every thought incomplete. And it may be a couple days until it gets better. I might place a call to the nurses now, just to get a sense of how long I’ll feel this out of it, but of course they can’t tell me, and they might tell me to take some more steroids, and then I’d be back to square one. Nah, not calling.

Last night was one of the highest highs of the week, even better than finally getting the frame off my head on Tuesday. I went to hear a band called Ride. They were an integral part of my college years, and then they squabbled and broke up and I’d only gotten to see them once, in 1991, the rock show that convinced me to wear ear plugs to rock shows ever since (I didn’t fully get my hearing back for two days after that one). I truly never thought I’d see them again. Last November, I think it was, our friend Jeff, acting on a hot tip from a friend, let us know they’d be playing in June and did we want to go? DID WE WANT TO GO? Well, I sure did. J hasn’t known their music as long as I have.

I can’t remember when in November it was that these tickets were bought. I do remember wondering how I’d be doing by June, that distant calendar page that held so much promise, but also so much uncertainty. I do remember being sure I’d still be alive. But last November was a wash for me, life-wise. I spent that month tethered between the bed and the bathroom, not realizing how hard my immune system (and the half-dose of the drug I was able to get before getting sick) was working to rid my lungs of tumors completely by the following spring.

I also didn’t know I’d have brain metastases and that I’d be having noninvasive brain surgery a mere two days before this concert. But that all happened, and by the time I got to the concert venue, despite my aching feet, no one could have been happier than me to be standing there.

After we endured the opening act, Ride took the stage and opened with the most perfect opening number ever, their towering, psychedelic anthem, “Leave Them All Behind.”

I had to sob. Just a little. For what I’d been through this week, this past eight months, the past two years plus. I squeezed J’s hand – hard – and I let the tear tracks dry on my face while the music swirled around me.

This music kept me from ever being interested in drugs. It was my drug. I remember countless times putting a Ride CD in the player or a tape in my Walkman and waiting to be transported. (Probably when I should have been writing a paper, or thinking hard about my future plans.)

Wheels turning round
Into alien grounds
Pass through different times
Leave them all behind

That works, I thought. I’m perpetually looking for metaphors and it seemed like a good one. “Them” – the tumors. Rejecting them. They are behind me for good. Yes. The sound was up way loud. I felt vibrations in my shoes, all the way up through my stomach, even into my infirm brain. It felt therapeutic.

The song goes in a different direction by the end though:

I don’t care about the colors
I don’t care about the light
I don’t care about the truth
I don’t care about the truth

Obviously, not my reality. But I sang along anyway. Because the music is part of the fabric of my experience and even though it’s not metaphysical poetry or anything, it’s a part of my past self. I felt lighter and younger and much less sick last night. Thank you, Ride.

Given my propensity to endure all kinds of pain, I managed to get through the entire show standing without falling over, even though my feet were screaming in pain for the first hour or two (they sort of went numb after that). I’m seeing the podiatrist on Monday. I honestly don’t think he will have anything nearly as high-tech or amazing as gamma knife technology to offer me for my bunions and foot pain, but I’m hoping at least to figure out what is wrong.

This weekend offers us a slight break from the kids, a block party, a trip to the theater with the kids. I hope the Decadron doldrums clear in time for me to enjoy these things. My bed is very comfortable, but I know its contours too well by now.

Gamma knifed!

Good evening.
Good evening.

I haven’t posted a photo of myself here yet. I guess this is as good a time as any. I think the photo of the woman with two band-aids on her forehead in the brochure was a mock-up. She hadn’t just been through gamma knife surgery! Or she had and she allowed them to slap some makeup on her. Or she had been the first patient of the day, not the last. Young A saw me with my band-aids and said, “You look good with your two band-aids, Mama. Well, sort of.”

I remarked to the neurosurgeon, Dr K, that I was used to going last because of alphabetical order in school. He was literal-minded enough to reply, “Hmmm, well, today we’ve gone P… D… A… W.” Dude, you could have just said it was alphabetical. I’d have believed you. No, actually it was the number of sites to be treated. The others had one or just a few. I had nine. NINE. I don’t really go in for half-measures, do I? Is it better to have nine small tumors or one huge one? Are these questions going to keep me up at night? (No, it’s the 10 mg of intravenous Decadron that will probably do that.)

After the fentanyl and an Ativan that melted under my tongue with no water required, I got a hold of myself. J visited me (also to escape the other families waiting in the microscopic waiting area and agreeing out loud with the TV which was showing Fox News nonstop), but I was so out of it with exhaustion I didn’t feel like talking much. Also I kept hoping they’d come for me. I saw stretcher after stretcher roll by. It wouldn’t be my turn until after 1 p.m. I’d been fasting since midnight. We’d arrived at the hospital at 5:30 a.m. I told J that the thing that made it more tolerable this time around, unlike the endless wait for my melanoma surgery two years ago, was that this time, they had already given me some drugs. The drugs helped. I may be learning to accept them. Not recreationally, but as a means to an end. Also, around noon, I was allowed to drink some water, and then some apple juice. The nurse forgot to bring the bendy straw with the water right away, and when she swooped back in with one she laughed seeing me try to find the right contortion to sip water with my head in a frame. Bendy straw it was.

Last night I again attempted to sleep without the Ativan-melatonin combo. Guess how that worked, the night before surgery? Turns out J and I lay next to each other all night not sleeping. At least we weren’t 7 years old and didn’t turn it into an all-night slumber party with lots of giggling. I feel like that may have happened once recently, when I was on the heavy doses of steroids. I will neither confirm nor deny.

Awkward transition time!! Something that today’s hospital marathon had in common with last fall, when my lung collapsed following a biopsy and I spent 36 hours in the ER, has to do with a monthly visitor. Male readers of this blog should either walk away now, ears covered and singing LALALA, or suddenly become much more enlightened and able to handle some female realness. OK?

I don’t have any particular fondness for my period. I was thrilled to see it go bye-bye for a full TWO YEARS each time I gestated and then nursed a baby. Thrilled. Lately, my period comes with migraines, if I don’t exercise like a madwoman before it comes, and if you’ve been following my life these days, that isn’t always possible. Last fall, I wound up having to stay at the hospital overnight in the middle of it, and with a collapsed lung I was hooked up to suction in the wall, so trips to the bathroom were inconvenient. They gave me a bedside commode, which the nurse had to empty. Totally humiliating.

Yesterday, after a week of anxiously waiting for it, Aunt Flo arrived. It was a relief, as I’d been hoping not to have to stop by the pharmacy to buy Plan B. A baby can’t happen to us right now or ever again. The factory is closed, we can’t keep babies in file cabinets and have no further room to accommodate one, and Miracle Brain Cancer Drug is NOT friendly to fetuses. And there’s no telling how many years of follow-up blasts of radiation I’m in for until I’m given the all-clear.

After sighing with relief I realized: Today was gamma knife day. Today would be my heaviest day. I’m glad I wasn’t attached to an IV pole, was not excessively sedated and therefore fully ambulatory, and a short walk from the bathroom today. Other than that, it sure wasn’t much fun to haul my sedated ass out of bed when I didn’t want to.

(Ladies, you may bring squeamish males back in the room.)

Finally, after the rest of the gamma knife suite was cleared of patients, I was walked back to the treatment room. The gamma knife suite is in the basement of the hospital, a good portion of which is under construction due to damage sustained during Hurricane Sandy. (While J was in the family waiting room, he heard some jackhammering and quipped, “I didn’t know gamma knife was supposed to be so loud!”)

J had given them my phone, which I pre-loaded last night with a playlist labeled “gamma knife.” I think the staff found this funny. There wasn’t actually a need to make it a playlist, because it was all of the tracks from the same recording – Jean-Yves Thibaudet playing Erik Satie. It turned out to be a fair-to-middling choice, because even though the gamma knife machine is completely silent, there was a constant quiet beep during treatment, and classical music is notoriously hard to volume-control, even more so when you have to do it via microphone while you’re inside a multimillion dollar gamma ray machine, having your brain zapped. I think I missed most of the first three Gnossiennes.

I went into the room and I told them I didn’t want any more sedation. Just the music. I used to be claustrophobic. That is what freaked me out at age 9 while on a tour of tunnels that went under Niagara Falls. I still get claustrophobia when I’ve tried on a too-small item of clothing in a dressing room at a store and am having a hard time getting out of it. I no longer fear medical claustrophobia. I knew this machine (which has doors that slide open to accommodate you when it is switched on) was going to help me, and in that sense it was even a more worthy machine than the merely diagnostic CT or MRI. I made friends with the machine today. What I didn’t have time to do was ask the neurosurgeon or the physicist to explain the different parts to me. They were a little busy and/or wiped out.

I sat on the “couch” (as they call it) and carefully leaned my framed head back. It needed to make precise contact with a clamp on the couch that would click me in and completely immobilize my head. My head was pretty heavy with the frame, which is where having strong abs helped me. I didn’t think my abs were very strong until one of the nurses commented on it. I was glad I’d been to the gym the day before, and had done lots of abs work. My abs are super sore tonight, and I can’t be sure if it’s from the gym yesterday, or from the workout today, lying down and getting back up with a titanium frame bolted to my head.

I had to reposition myself a couple times, but I finally lay back and heard a click. Then, they buckle you down to the couch. I guess they can’t risk someone really freaking out. I felt totally calm. They put a bolster under my knees, which was okay but not high enough. I probably took up the whole length of the couch. I was the last patient of the day, and also the tallest.

I asked for a break after maybe half an hour. I didn’t deserve one or need one. I think I needed to pee, but, not knowing how big a deal that would be (and not having access to the certain bag in my purse I needed), I let that slide and just enjoyed a break. The radiation oncologist came in with the nurses, and encouraged me to stretch. I was a little overzealous, and bashed my elbow on the side of the couch. They looked extra alarmed, but I reassured them I was fine.

I got strapped back in for the rest of the ride. I heard myself snore intermittently, quite loud when it bounces off the wall of a machine that is about a half-inch from your nose. I checked in via microphone one more time. There were 54 minutes remaining. I decided not to check in again for a really long time. The next time I checked in, there were three minutes remaining! Three!

Getting up from the couch was where the abs were most tested. The nurses sort of pulled me up by my frame but very slowly, so my abs had to werk. I felt fine, because I wasn’t all whacked out on Ativan, so finding my footing was easy. (I’d seen the other patients leave by wheelchair.) I walked back to my room, and then they got my frame off.

It took two nurses, a screwdriver (forgot to ask what kind), and a bowl. I asked whether the bowl was to catch brains. The nurses kind of jumped/gasped, and then laughed. The gamma rays did not affect the humor tissue. Yay. Getting the frame off was pretty much as uncomfortable as getting it on and as uncomfortable as my entire orthodontic journey. (I silently cursed the memory of my orthodontist.)

Then darling J was there, with a slice of pizza, a strawberry doughnut, and the nurses brought me apple juice, and I drank and ate unencumbered by a frame over my face. We had a good chat with Nurse C, who grew up not too far from me. She also taught me (while removing my IV) how to get tape residue off your skin quickly and easily – alcohol swab. We packed up, she walked us up to the lobby, and I hugged her.

In thinking over the day, perhaps the most bizarre aspect was the attire of all the medical personnel involved. Two years ago, when I had melanoma surgery, it was standard OR gear – scrubs, gowns, hairnets, masks. Today, the nurses wore regular scrubs, and the doctors? Were all in suits and ties. Not wearing gloves or masks. The machine was in an enormous room, and once treatment started, I was completely alone in there. I was told there were video cameras aimed at me in the corners of the room. I’d shift my legs from time to time.

You’ll notice I haven’t posted a photo of myself in the frame here on the blog. (I have posted it elsewhere for those who know me elsewhere). There’s a reason for this. Last night, I went on Flickr and also Google Image searching for treatment diaries by people who’d been through gamma knife surgery. I found several. I found that all of the people whose faces I’d seen in the frame hadn’t made it. It was a sad discovery.

Please understand that I in no way compared my situation to theirs – in fact I made a point of not finding out much about their clinical histories – but I do dedicate this post to them, especially anything that was remotely funny. Because they all looked like people who enjoyed a good laugh. Why else would they have taken a frame selfie?

I’m trying to learn to be a better cancer “citizen,” and part of that is honoring people who went through similar experiences and did not get to triumph, perhaps because their circumstances were different, or their insurance or lack thereof barred access to better treatments, or because they simply got cancer in the wrong year, before all of the things that have benefited me could have benefited them. There are so many permutations and so many reasons why things go right or wrong. I’m so sorry things did not go their way.

Now I’m going to take advantage of my brief hiatus from dabrafenib (today and tomorrow) and eat a yogurt at 10:20 p.m. This is what living it up looks like for me these days.

In progress

They screwed the frame into my head. The worst moment was the tightening of it. Reminded me of getting my braces tightened. The lidocaine shots in my forehead stung more than the ones in the back of my head. None of it was unbearable. Then I had an MRI.

I have some fentanyl coming through the IV. Before they gave it to me I was sobbing intermittently. I was so excited to get here and then I got here and it was real and much more scary. My nurse seems to recognize me from my time in radiation. I didn’t remember her but she reminds me a lot of my friend S, a nurse midwife. Same calm vibe.

I did ask them not to sedate me completely as I am still hoping to take this process in and remember it. We’ll see. Right now I’m starving. And sleepy. More later.

Chastened

I spent an hour! An hour on tagging today! I made a list of great tags and funny descriptions of them. And then… I tried doing some tagging. I went allll the way back to the dawn of this blog. I looked at the first entry. I edited out a sentence. I applied some tags. And then my face probably looked like this:

image
Bloodhound trials Feb 2008 -79, by John Leslie on Flickr, licensed under Creative Commons

I realized a few things:

1. To tag every entry in this blog, I’ll need to revisit my very sick November. Every nuance of it. Because I want to tag accurately and these entries are very wide-ranging.

2. I am having brain surgery tomorrow. Today may not be the day to get a labor-intensive, legacy-type project done.

3. Legacy project?! I’m going to be fine!

4. Mom called and I needed to meet her at the subway.

Mom’s here! Mom’s here! And she respected my wishes and did not bring more Lego into our home. (This time.)

Off to enjoy my evening with my mom and the boys while J plays basketball (and then wakes up at an ungodly hour to accompany me to the hospital).

The nurse from the gamma knife department called to give me instructions for tomorrow. I listened, took notes, gave her more info than she needed in response to her questions. I asked if I could bring my own music and she said, “Ummm… the physicist can probably figure that out.” At the end of the call I said, “I’m really looking forward to this!!!”

Suffice it to say, they are probably already a little scared of me.

Tagging!

image
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.

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?)