What I Learned With a Little Time Off, and Some Assistance From the Wilds of Idaho

Tomorrow is my PET/CT. In a way, it really is my PET/CT, more than any of the other ones have been, because it's the one I insisted on getting after spending a few months treating my cancer in my own way, before adding any new Western treatments. I should capitalize that: My Own Way. Back in March, at my last set of tests, new cancer was discovered in a variety of places, but at a low, low level. It was, in fact, the opportunity I had been wishing for: enough cancer to measure so that I could try some of my own things, but little enough that I could try my own things for a few months without putting myself in the position I was in two years ago.

Don't get me wrong or tell me to be careful what I wish for—I also wish to be entirely cancer free forever and ever. I wish that my full-time, 24/7 job would fire me, boot me out the door, let me paddle around in unemployment for awhile, then let me maybe put some serious thought into switching careers. But it's not going to do that—not in this lifetime—and so instead I accepted the opportunity it did offer me.

My Own Way has been very different this year than it was in 2007. In 2007, I got my boob sliced off and then I washed my hands of the whole matter. I attempted to move out of the country, and took that opportunity to cut ties with Western medicine. I pretty much figured that I could beat the whole thing with force of will.

We know how that turned out.

This year, I took supplements: MMS (the Miracle Mineral Solution) and oleander. I read information, I listened to people, and I knew that simply doing nothing was not an option. I have also been seeing a talk therapist (well, sometimes just talking over the phone), and doing my best to let out emotional and spiritual sludge and decay. I have also been trying to incorporate my cancer more into my understanding of my life. I know I've talked about my tapestry, but even so, I kept feeling that time at the clinic was a step out of my real life. An empty space that had no bearing on what I was really all about. I would lie in my scans feeling, if anything, vaguely inconvenienced, but usually it's my habit to simply lie still, occasionally wondering how I got to be in that tube. I'm trying to change that mindset, to allow my life and all its threads to blend together a little better.

And what I've come to, having had the freedom to explore My Own Plan, having had the time to manage that in the middle of everything else in my rich existence, and having had two weeks of utter joyful satisfaction in LIFE and what amazing things I can do with it, is this: It doesn't matter where the care comes from. The only important thing is that I get to continue, as long as possible, hauling bales of hay. Riding 4 miles out of my way, and falling into bed, so blissfully comfortable and muscle-fatigued that it's a singular pleasure to lie awake. Waterskiing. Visiting foreign lands. Writing. Cooking. Clipping the nails of our incomparable dogs. Sharing spur-of-the-moment projects with Ian. Tortilla soup. Working out the etymology of a word. Piano. Morning coffee. And an infinity more.

There is no value added by the simple fact of me choosing the drugs. I don't have to have that control.

And so, tomorrow: my PET/CT. To my surprise, I find myself completely indifferent to the results. The scan will show what it will show, and I will make a choice.

Such is life.

By the way . . .

I'm Dilettanting these days, until 21 May. I never tire of Jerome Creek, Idaho, but if you do, be forewarned, that's all you're going to get for the next little bit.

How Does This Work?

Okay, so, of the $72,304.35 that Harborview charged for the Gamma Knife Radiosurgery, my insurance company, being a partner of Harborview, was actually charged (after "network savings") only $19,364.26. And I was charged $28.74.

Insurance should be available for everyone.

The Plan

I met with Dr Specht today (after seeing my eye doc this morning and spending the next several hours with one eye dilated), and did not receive any new results from any tests from her, aside from the usual blood counts which were normal (not including tumor markers, which won't be available until next week, although the last ones from a month ago were, I think, 32, which is still within normal range, but higher than they were before). She was expecting me to tell her which of the three options for changed care I was interested in; at the close of my appt with Dr Jason on Tuesday, that's what I was expecting to talk about today, too.

But, yesterday at Taya's, I had a spectacular emotional breakdown about going back on chemotherapy because, it turned out, what I really wanted to do was have my next set of diagnostic tests (PET/CT, specifically) BEFORE anything else, because I really want to see if the MMS and Oleander that I've been taking since mid-March have done any good at all. Taya is a great person to have emotional breakdowns around, because she's seen them, and she's had them, and she's pretty calm about this whole life thing most of the time. And so, while I'm lying on her heated massage table, sobs wracking my body, my arms and legs and abdomen and face buzzing with 10,000 volts of energy just like in my panic attack, but not freaky because I knew why it was happening (more to investigate about this, I think), she sat there and chuckled and said "Good. Good! You're in a really good place now! Good for you! This is how you get more familiar with your intuition—break all these barriers away!"

Anyway, I felt quite calm and resolute going into my appointment today. I knew what I wanted to do and why; I'd done my research on the next steps and knew what those meant, so I could talk to Dr Specht about changing my treatment; but I was clear on what my intuition was telling me, and—even though it is scary to trust myself, and not just capitulate and start a new chemo immediately—I held strong for updated diagnosis before updated drugs.

Dr Specht was reluctant, but ultimately agreed, cautioning that she was getting more and more worried as time went by. I know she cares very much for me, and wants me to live as long as possible, and wants to do her best to help that happen, and doesn't really believe in a lot of the things I believe in, but she does, I think, trust me and what I need to do for myself. I know, also, that she thinks things will look worse on my next scans. But I don't think that—but, nor do I think things will look better—I can't keep an opinion on the matter at all. I just want to see what they say. I explained that I was not trying to put her off indefinitely; that I know that my situation is serious, if not at the moment presenting as acute. But that, if what I've been doing has, in fact, been clearing cancer from my body, I want to know that. She should want to know that.

I didn't put on an exam gown today, and so my sleeves covered my arms. There didn't seem to be any need to make a point of my tattoo, so I let it stay hidden. I think Dr Specht was worried enough about me today, without me essentially thumbing my nose at her.

And then I went and had my Herceptin infusion.

And now I am exhausted.

Two Down

Met with Dr Jason today after my first post-Gamma Knife MRI. Two of the three spots are completely gone, and the third has shrunk. My brain doesn't seem to have sustained any damage, from what the MRI showed. He looked at it three times to make sure, and my other spots appear to have stayed the same, and nothing new has shown up. I'll have another MRI in six weeks.

Dr Jason did, however, recommend that I go back on some systemic treatment (read: chemotherapy) anyway, because if the stuff in the brain already big enough to see isn't doing anything, then maybe the cancer cells are sneaking in from somewhere outside the blood-brain barrier. Also, last body scans I had, three months ago, did show some "marginal uptake" of a couple places in the skeleton, if you'll remember. Last night I read through all the proposed drug information Dr Specht left me with three months ago (not such a good night's sleep after that), and I asked for his recommendations to go with hers and my own guts. On Thursday when I meet with Dr Specht, we'll decide what to do next.

Dr Jason did suggest I not show the below to Dr Specht (his way of chastising me),
the new tattoo that I got last Wednesday, on the inside of my right arm. The reason I deserved scolding was that I had lymph nodes (some, not all) removed from under my right arm 11 years ago, which means that I am at greater risk for infections and lymphedema (uncomfortable swelling due to the body's inability to drain with a compromised endocrine system) on that arm. I haven't had my blood pressure taken or a single blood draw done from that arm since April 27, 1999--I know the risks. That was where I wanted the tattoo though, and it is, after all, my body, and so that's where it went. It's an orca and I love it. Dr Specht will live.

Rest and Relaxation

It's been my goal for the last few weeks to rest and relax and recover from some of the arguably frenetic activity of the last six or so months. On March 8, when we landed in Tokyo and successfully passed through immigration and into Japan, we visited our fifth continent in just over six months, if you count a trip to Mexico in August as our visit to North America, instead of simply living here. If you count simply living here, then we hit five continents in less than four months. This was nothing compared to the travel Ian's coworker, J (who was with us in Japan), has done in a similar amount of time—he figured he had crossed a world meridian—either east-to-west or north-to-south and vice versa—something like 80 times in six months (might have only been 60, but still). Much as I love travel, I think even for me that would be a bit much. Jet lag would stop even being a separate concept—it would just be the state of one's being.

Nevertheless, we were overseas a lot, and when we were home, I was pretty much in the clinic having radioactive tests and learning new dire information, or getting pins screwed into my skull so only the cancer in my brain was destroyed by the crossed beams of cell-destroying gamma rays, and not all the very important healthy tissue.

As you might imagine, it's been exhausting.

Before going to Japan, I had chatted with Dr Specht about trying a couple things on my own, and she'd given me three months to do so, but then I would have to decide on a new course of (Western medical) action, because some of the scans between Africa/Europe and Asia showed marginal new cancer activity. She offered me some information about suggested new chemotherapies and hormonal therapies and off I went, expecting to read about them in Japan.

Well, I didn't read about them in Japan, finding myself hugely distracted by Japan, and then two days after I returned home, we found during the gamma knife day that I had two additional spots in my brain, turning the one-spot anomaly into a three-spot trend. I was pretty sure that that information blew my hopes for trying my own, slightly less toxic? onerous? dictatorial? therapies, and I started getting really anxious and stressed out.

I feel like I've made some poor choices in my life (don't we all), and part of my recent anxiety has been not trusting my own intuitions to tell me what's best for me. I have come to see, though, that they are always telling me what's best for me; that the times in my life when I've made poor choices, I can remember that I've very clearly been ignoring my inner voice. Anyway, the day when I went in to visit Dr Specht, about 3 weeks ago, I just felt EXHAUSTED. Mind, body, spirit, emotion. WIPED OUT. It suddenly came to me that I was way too tired to make a decision about the future of my care—that, regardless of what the scans had said and what Dr Jason had found on Gamma Knife day—I wanted to take the remainder of my three months, the next six weeks (well, seven because of Idaho), and concentrate on rest, on recovery, on rebuilding my immune system, and on the couple of things I wanted to try. Dr Specht understood, and was willing to give me that amount of time, just so I stayed on Herceptin and Femara, even if they weren't 100%; and so I've been doing my own thing.

First off, I am not good at resting. Even though I've been doing it for a few weeks now, today is only the second day I've had completely unscheduled and without Ian around since 19 January. Since that was only a couple days before going to Cabo Verde, though, I'm pretty sure I didn't spend it lying about the house reading novels. I have been sticking close to home, and I've been reading more, and blogging less (well, not blogging more), and turning down a lot of social events, and allowing myself to feel what I'm feeling. I haven't had another panic attack, but I've also not driven farther than Greenwood—and not that driving itself freaks me out—but if I am freaking out, for some other unknown reason, worrying about being a safe driver does make it worse. I've done a lot of yard work, and have pretty much kept the household running smoothly the way I always do, but I feel like I'm taking better care of myself. And I tried MMS for a few weeks, and now I'm taking Oleander and South Africa's Cancer Bush, and in another few days I'll put them together and see what happens.

I mentioned to Ian the other night that, if cancer is my full-time job, it's also one in which I am on-call 24/7. Nevertheless, April has been a month off, as much as it can be. Part of my rest, I will admit, has included the beginning stages of planning a trip back to Kenya, and I haven't been to Australia yet at all (or Antarctica for that matter), and Ian and I sent in our passports for additional pages and so those need filling now, but for the moment I am learning self-trust and self-care, and I am, in fact, less exhausted than I was.

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.