If It Weren’t So Completely Terrifying

I haven't written a lot recently, as you know, Joel R and a few other dedicated hangers on, but I've been thinking about a lot of entries I could write, and I'm finding that the words I want to use are words that are sort of inherent superlatives. Like PROFOUND. Or SPECTACULAR. Or EXHAUSTION.

I'll start with that last one, just to explain the recent radio silence. It's not that either the cage screwed into my head, or the morning spent bolted into the radioactive distributer cap turned me into a pumpkin (by the way: total billed cost for that morning's procedure? $72,312.); rather, that morning was just one in a long series of intensive medical events bookended by wildly exotic international travel. We had to send our passports in for extra pages. Oh yes, I have been living the gloriously vertiginous life of high-to-low-to-high-to-low-again swoops—and I am still glad of it—but I realized last week before going in to see Dr Specht to talk about the necessary change in my care (made more necessary by the two lesions found on Gamma Knife day that turned the brain event from an anomaly into a trend), that I was in no position to make a decision about anything more important than what shoes to wear that morning, let alone a matter of life and death. MY life and death.

I was EXHAUSTED. My swoops and plummets, glorious though they were, had caught up with me, and I NEEDED A REST. Fortunately, Dr Specht understood, and also had something else she was going to follow up on, and so our original agreement—of me getting three months to try something on my own—is going to stand. I'll meet with Dr Specht in early May to discuss our changes, then I'll head off to Idaho for a couple splendid weeks, and then I'll return and get started.

In the next few weeks I hope to continue ramping up my use of MMS—the perhaps hyperbolically named "Miracle Mineral Solution"—I couldn't tell you yet if it will prove to be bald truth for me; and perhaps dabble in the mysterious world of oleander and African "cancer bush" supplements, but more on those another time.

A part of my experience for the last year that I haven't spent all that much writing about, which is taking on much larger proportions of my brain power these days as I'm trying to "take it easy" for a bit and am, therefore, perhaps less distracted by "real life", is the anxiety I've been feeling since the day after being freed from Taxol last April. Yes, the day after hearing that my cancer was confined enough that I could stop the most toxic of my drugs, I woke up to a feeling of slight disconnection that has been with me to some degree or other for most of the last year.

I have had several days, several weeks even, recently, when I've felt consistently right here, active in my world. I usually feel more engaged and more present at night, less engaged and less present earlier in the day. At the worst, I've felt a deep, relentless dread—that I'm going to drive off the road, that I'm going to have a seizure, that something will happen to Ian on his way to school—but specifics haven't been necessary to feel the dread. Sometimes, often, it's completely focus-less. Just chilling, debilitating dread. Up until recently, if I took an Ativan, an anti-anxiety pill, the dread would drift away and I would come back into focus, right here in the immediacy of this world we live in. But last week I took an Ativan when I thought I wouldn't be able to make it to my therapist's office without it—I woke from a nap feeling like, in about 30 minutes, I would feel like something awful was going to happen to the world—and the Ativan did nothing to stave off the anxiety attack. Fortunately, my therapist, who has done a lot with anxiety and post-traumatic stress, was able to talk me down pretty quickly once I arrived.

Today, however (and here I'm about to use the other two words at the top of this entry), the Ativan failed me PROFOUNDLY. I woke up feel a different kind of anxious today—the kind that makes you want to run on the treadmill for an hour, instead of the kind that makes you want to curl up in a ball deep in the corner of your bedroom with a couple dogs as doorguards keeping you safe. It was actually a nice change—I felt more connected with the world, which pleased me because I was off to see Taya and Debbie for some bodywork and some cranio, and I really wanted to go—and visiting them helps with the anxiety. I didn't have time for an hour on the treadmill though, or DDR as it is these days.

At any rate, dogs and I got into the car and hit the road, and I was feeling pretty good, a bit fizzy in the chest, but happy. But then the fizziness grew, and I started to feel antsy and like I couldn't keep calm in the car. I pulled off I-5 in Lynnwood—happened to be at a little park—and got out of the car to walk around and take deep breaths. I walked for about ten minutes, used a restroom, then got back into the car. I called Taya and told her where I was and that I was feeling anxious and she assured me I could take all the time I needed. I took an Ativan and a half—since the one hadn't worked---and sat for about five more minutes. I felt myself calming down (too soon for the Ativan to kick in, but I thought it would catch up with me along the way), and so we went back to the road.

Somewhere close to Everett I felt myself start to space out a little, and I noticed a bit of a tingle between my first and second and third fingers of the right hand. Now, I do drive with both hands on the wheel and I was gripping, and I had knitted for almost 2 hours the night before, but this felt potentially different. I started talking to the dogs and myself out loud, to keep myself present. "You're almost there," I said, "Only a little over ten minutes." I merged onto SR2 toward Lake Stevens, speaking quietly and comfortingly to myself the whole while. It sounded like my voice was coming from outside of my head.

All the while, the tension? Fervor? Expectation? Dread? grew on apace, and about 5 minutes from Taya's house, right after turning away from Lake Stevens onto route 9 north, I realized I had to pull over the car again—what was happening was not going to wait.

And it was SPECTACULAR. I pulled off the road at a conveniently empty bus turnout with a comfortingly vast yellow-striped "don't park here" section, well out of the way of traffic, turned off the car where I didn't belong and put on the brake and the hazards, just in time to be taken over by the most mind-blowingly petrifying panic attack I have ever even heard of. I thought I was going to pass out. My fingers started to tingle and buzz, then my face started to tingle and buzz and stiffen. I found myself remembering to breath, and to help myself in this task, I ran my buzzing hands up and down my buzzing cheeks, my mouth O-shaped, hooting air in and out. And the the buzzing spread, down my neck and across my torso, and back and forth across my abs, coming and going in waves of varying intensity. I felt like I would electrocute someone if I happened to touch them. It seemed that I could power my car just by thinking about it. I thought, dimly through my almost hysterical mindlessness, that I was really sorry I'd left my blood pressure cuff and my oxymeter at home. I called Taya.

"I am having a really hard time of it here," I said, breathlessly, a sob catching in my throat, when she answered. "I'm almost to your place, but I can't drive right now." She asked if I would like them to come and get me, and drive me to her place and I said "Yes, YES! THANK YOU!" out of a mouth strangely stiff, and seemingly frozen in my breathing O.

A life line.

I sat in the car and rubbed my cheeks and opened and closed my jaw and talked comforting words to the dogs and marveled at the sheer intensity of the electrical current arcing through my body, completely terrified that life as I knew it was ending. That Ian would have to ride his bike to Lake Stevens to take us home. That I would have to get out of the car right here, at this busy intersection, and pee behind the door because I was this close to not caring about propriety. That I would never be allowed to do anything on my own again. Not that it would matter, because I would be dead. There was no getting around that.

They finally arrived, just when I thought I couldn't take it anymore. I stumbled out of my door, body buzzing at 10,000 volts, and got into the back seat, telling Taya as I passed her that I was pretty sure I was having a seizure. She watched me walking and talking and operating the door, and got in to the front seat. I put on my seatbelt, then took it off briefly so that I could lean forward and offer information—how to put the car in gear, where to find the emergency flashers (I eventually just reached up and turned them off), how to release the brake, that the beeping from her not putting on her seatbelt would go off in a minute.

Gradually, as Taya pulled back onto the road toward home, someone turned off the energy taps that had taken over my entire being, and five minutes later, I ran competently into the bathroom and peed a gallon.

I have not had an outright panic attack in years, and this was by far the worst I've experienced. But the buzzing, the absurd, full-body high-wattage electrical generator, was INCREDIBLE to experience.

Sucked that it scared the crap out of me.

Photo Journalism

Here is the gamma ray distributer cap--not the part that I had screwed into my head; the part that my cage kachunk-kachunked into.

Me, pre-cage.

All locked in for one of the treatments.

The pit crew (physicist and radiation oncologist) between treatments, using screwdrivers and allen wrenches to rearrange the apparatus.

In this picture, of my third and last treatment, my position had to be manually (more manually than the first two even) determined. "I feel like I was in a Prius, and now I'm in a '67 Mustang," I said, as they maneuvered my head this way and that, bolting and screwing and kachunking again.

Me in my cage. It makes me woozy to look at this.

A Hole in the Head

Welcome Home, Calin!

This morning, less than 48 hours after returning from a robustly fish-themed first-ever trip to Japan, I went in for my much-awaited Gamma Knife Procedure. It's true, the Gamma Knife was much awaited. From the beginning almost two years ago of this latest episode of cancer (which episode has helped me realize, I think, that it is not actually a fourth beginning but, instead, the fourth upswing in a single long episode of cancer that I have learned to call "one aspect" of my life path) I was interested in the focused radiation part—the "knife"—itself, and the more I heard about it, the more I was also interested in the the somewhat gruesomely barbaric preparation necessary to be able to hold my head still enough for the "knife" to do its remarkable focused radiating.

As you know, a routine MRI uncovered a tiny new spot in the left ventricle of my brain less than 48 hours after returning from my last overseas trip, to Cabo Verde and Portugal and England, and my "surgery" today was the direct outcome of that and the ensuing several more scans that I had in the three weeks before Japan. I've read recently that the shift in earth energies is causing more and more people to experience major things more and more often, in an attempt to help us learn to live in the moment—there simply isn't enough time to stew before the next major thing—and I have to say, in the past 3 months this has certainly been true for me.

Anyway, this morning at 6:00am we headed off to Harborview Medical Center and its Gamma Knife Center (one of 4 in the city, I believe, from research Ian was doing while waiting for things to happen—maybe I'll ask him to write up a quick post about Gamma Knife itself . . .). I checked in at 6:30, was first on the schedule of 4, and arrived back home close to 2pm.. It was supposed to be closer to noon, but the process is slightly different for every patient, and what was expected for me—that I would get in, get one spot done over a period of about 20 minutes, and get out, turned out to not be reality.

The first thing that happens is you get a metal cage screwed into your head by a neurosurgeon, one of three major players in the Gamma Knife experience. Even the cage itself doesn't go on the same way every time, because it has to be in a position that is out of the way of where the radiation is going. Most parts of the brain are accessible no matter where the cage is placed, but not all parts in any one placement. So the neurosurgeon comes in and says "I understand we're putting you in position to get treated for a lesion on the right side."

"No," I said, "I thought it was the left side."

"I'm pretty sure it was on the right side that Jason showed me," said Dr Bob.

"It says here the left side," said one of the nurses helping with the prep.

"Well, I'll be right back," said Dr Bob, and left the room. "Just as I said," he informed us as he returned, "the lesion we're aiming for is on the left side. In the left ventricle."

The placing of the cage was, in fact, the most difficult part of the day. Four shots of lidocaine were pushed searingly into my skull, then the screwing (by hand) began.

"Um, that really stings still," I said, and Dr Bob immediately pushed in another syringe of the numbing agent (my scalp has only recently started regaining feeling), in three of the four screw sites. The numbing hurt, a LOT, but it was the pressure of screwing the plate into my skull that really made me woozy. "I think I'm going to throw up," I informed my nurses, who started pumping saline into my IV and told me to take deep breaths, in the nose and out the mouth. The wooziness passed, to the gratitude of all.

Once the cage was installed, I was wheeled on a gurney up to MRI and had a picture taken of my brain including the coordinates of the cage, so that I could be placed perfectly in the Gamma Knife machine to hit only the spot we were focusing on.

I was then sent somewhere to rest and eat breakfast (Ian had been given $5 to spend on me at the hospital cafeteria) while Dr Jason reviewed the MRI to make sure he could perfectly identify the coordinates of the spot. Except that it turned out there were two additional new spots, both on the right, one, in fact, in a place where it almost couldn't be treated because of the placement of the cage.

The other two new spots were also very, very small—treating them in addition to the first one was not much of an issue since I was already there and prepped, provided the one under the cage could somehow be reached (and it was). And, in and of themselves, they, too, did not offer any serious risks at this time, either in size or in the locations where they were.

What they represent is a new surge of activity, presumably from the body, and delivered to the brain through the blood stream, because the original lesions in the brain are non-reactive at this point.

What this means is that maybe I don't, in fact, have time to try my own thing, even for three months. I'm going to sleep on it, though, a whole night tonight (jet lag allowing), and for the weekend read over the options Dr Specht has suggested to me, as well as continue my own research, and decide where I want to go from here.

I feel so healthy and fit and well for the most part, that I don't expect to see anything at all in my scans anymore, ever. I was surprised by the spot when I first found out about it in February, and I was surprised it was still there today. I mean, it was small—why couldn't my body, my supplements, my Herceptin and Letrozole, my general good health, my love, love of my life and all the richness that is in it, why aren't those things enough? And I felt bludgeoned in the face by the two new lesions.

I know that this is my path. And I know that today's experiences are all part of the richness. And I know that I am lucky to be alive, to be who I am, to have this wealth in its endless variety.

But sometimes, for just a little while, it SUCKS SHIT. No poetic language here.

On the Schedule

Reporting to you from Yokohama, Japan: I am on the schedule for my gamma knife procedure on 18 March, two days after getting home. I'll be called the day before with specific instructions, but I will definitely be checking in between 6:30 and 7:00 in the morning. Depending on my position in the schedule, 1^st, 2^nd or 3^rd, I'll be done at 2ish, 4ish, or 6ish. I'm assuming jet lag will help me with that.

Lots of Results

I saw Dr Specht this afternoon and heard about my scans from the last week. Let's see if I can get it all. So, we know about the tiny spot in my brain MRI. We also know that my spinal cord itself seems to be in good shape. There was a slight anomaly in the neck vertebrae, maybe, that showed up in the spinal cord MRI. However, the bone scan was great—and looked better, in fact, then the last one from 2008. I think that means that even the scar tissue is better? I don't know. At any rate, the bone scan did not show any new activity, including in the neck. And finally, the PET/CTs. The brain scans of the PET showed nothing at all out of the ordinary, but the tiny thing from the MRI may be too small to suck in enough glucose to be visible. The rest of the known lesions in the brain showed no unusual activity, and indeed many seem to be calcifying, which is supposed to be good. The PET of the rest of my torso (down to and including the pelvis) showed three areas of very, very minimally unusual activity, in a couple vertebrae and one back rib. It is likely that this is also cancer activity.

I'm in an interesting place here right now. For one thing, Dr Jason will probably call me and schedule a gamma knife surgery for pretty soon after Japan, to take care of the teeny spot that the MRI has shown, before it has time to cause any more trouble. For the body, though, what to do?

There are lots of options to try in the medical oncology world, and I've been sent home (well, sent to infusion, where I'll be for the next 3-4 hours) with information on two proposed changes to my current meds which, it appears, aren't working quite as well as we'd hoped for keeping everything down. I asked, though, and Dr Specht is tentatively willing to let me try something weird and alternative instead, if I can do it while on Herceptin and Letrozole, and she will scan me again in 3 months and we'll see what's happened. I told her I would write her a research paper on the two things that I'm interested in (I can't remember what they're called at the moment and I'm too lazy to look them up right now), and then make my decision. Several months ago, when I heard about these things, I thought to myself that I wasn't interested in taking any of them at that time—I was evidently in remission and what was the point—but that, if there were a circumstance in which evidence of disease was reassuringly small if not non-existent, I would maybe like to try something new. Not dive in from the very top of the cliff, but jump from a place where I could almost dip my toe, and be sure of not bashing my head in.

This is looking like that opportunity . . .

Ask and Ye Shall Receive

The poem that I posted over the weekend is the first poem that I've written since Mom's Creative Writing class in 10^th grade. I'm not really a poem person—for the last couple decades, I've been a very concrete, spell it out sort of person. I'm a scribe, telling stories I've experienced, evoking people, places and things that exist, that I have known. I am not a novelist, creating worlds that exist solely in my imagination. There's a lot of poetry that I don't really understand, and for the most part I'd really rather be told the point and move on. Poetry seems to be, to some extent at least, a blending of the two modes—documentation and embellishment—and I really haven't seen the point, up until last Friday, when I came radiating out of my bone scan (no results until this coming Thursday) and couldn't leave the clinic until I'd jotted down a rough draft. I sat there on the bench in front of the second floor elevator, digging through my mental thesaurus, weighing grams of meaning against milliliters of implication, rhyme against alliteration, meter against free verse. My recent trip to Cabo Verde and more specifically Santo Antão, with its soaring mountaintops and crashing seashores, and our attendance at Avatar last Tuesday (Science Center 3-D IMAX woo), had towering heights and tumbling depths and swooping flights all topmost in my mind.

And this is the landscape of my life, pinnacles and pits, and the journeys between. I'm not living in Kansas.

I'm on one of the "vertiginous flights" right now, with three scans behind me and one ahead of me tomorrow, then a couple days to wait before I find out if I'm landing on a mountaintop or in a deep valley, or if maybe I just have to hike around a bit. And for the last couple days, I've felt it physically. My head feels just a little heavy, and my body's not yet used to hauling around the extra weight, so if I shake my head or turn too quickly or nod and walk at the same time, I feel a bit at sea. I had both eyes dilated today, too, (it's always something), and that definitely did not calm down the gentle, almost imperceptible motion of the earth. I've also been sleeping with my window open, just above my head, and my left ear is plugged, so there are tangible physical explanations for my perceptions. But that doesn't make the spiritual explanation less valid.

I had a dream this morning, between Ian getting up at 7:15 and me crawling out of bed at 8:30. I was on an island somewhere in the Mediterranean, and tons of people were around. I knew a lot of them (Cousin S and her mom, Dr Jason's dad K, my mom, the kid I went to prom with senior year of high school, among others), and interacted with some of them, but what I remember most clearly is this:

I was standing on a clifftop, a black, volcanic, vertical cliff with lots of little ledges and handholds, maybe 100 feet high—an awesome place to rockclimb—above a clear blue sea. The water was so clear that I could see perfectly tumbled lava boulders through the waves washing back and forth. My father was next to me, and then in one motion he leapt and dove off the edge of the cliff. I was petrified and ran to the side to watch him enter the water, sure that I'd see him dash his brains out on the submerged rocks, which were too clearly visible to be deep enough to avoid. He entered the water without a splash, his flexed feet burbling through with a small eddy at the end. He swam off to shore, completely unharmed. I found myself midway down the cliff face, holding a rope and kind of rappelling backwards, cautiously, carefully easing my way down to a place where I felt I'd survive the fall. About 10 feet above the surface of the water, I closed my eyes, screwed up my courage, and dropped in feet first.

The water was delicious. Clear and cool and buoyant and gentle, the rocks deep down and interesting, sunlit. I woke up before I could climb the cliff and try again, but I wasn't afraid of the leap anymore.

What I wish is this.

Life Wishes

I do not harbor wishes to survive
To be upon this earth only alive.

I wish to thrive.

To revel in the pinnacle of incandescent heights,
The vertiginous flights above the shadowy abyss.

Sometimes touching down in a deep, dark place,
Which elevates, enhances,
Illuminates the bliss.

What I wish is this.