Decadron crash!

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.


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:

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.