Wednesday, May 18, 2011

Wherein Witch Doctor Dan Makes a Diagnosis* that is Subsequently Corroborated by the Western Medical Establishment

*my words only. Dan cannot and does not actually diagnose.

When I met Daniel Lane NIS Specialist several years ago, he was already known amongst friends as the Voodoo Man. Being a professional and responsible practitioner of his craft he did not, however, introduce himself to me as such, and I was left to draw my own conclusions. My mother used to sing "My friend the Witch Doctor (not quite this version)" to me as a kid, so naturally that's where I went after my first appointment with this seemingly incongruous method of healing.

In that first appointment, Dan fixed a low-grade acid reflux issue that had been subtly dogging me for years. It was subtle enough, and had been going on long enough, that I generally took no notice of it except to take the occasional Tums (I prefer the berry-flavored ones), and I don't remember even mentioning it, but Dan caught it in his initial scan. "You have four valves in your digestive system," he explained, "and they're supposed to fire in a particular order. Yours are firing out of order, and we're going to put them back."

I lay there fully clothed on my back on the clinic table and maybe clenched my teeth, or maybe held my temples or other pressure points (at Dan's direction, and I don't remember which points, it's been a long time), my right arm up at a 90 degree angle, and Dan held some pressure points, said "hold strong" and pressed against my upraised arm. Nope, couldn't hold it. I could feel the weakness as my arm jigged back and forth against his hand. Dan tapped my head, or swiped back and forth on my upper thigh, or whichever of his methods was appropriate for this particular fix (I have obviously not been surreptitiously studying up on NIS myself), and then said "okay, now hold." He pushed on my arm and I held—rock solid. Huh.

For about 24 hours, my guts felt WONDERFUL, which is to say that they did their job without any fuss and so I couldn't feel them at all, but then the reflux refluxed. I saw Dan a couple weeks later and told him, and he said that yes, since the valves had been off for so long, they would need about 3 visits before they would hold (the same is true of pianos that have been untuned for years—they incline toward the familiar kinks and string lengths and so should be retuned every couple weeks for up to several months, until they learn the new preferences). Sure enough, 3 visits later and my guts have been excellent ever since, with only very occasional misfires associated with stress, viruses, and chemotherapies—easily fixed at one of my regular visits (I see Dan about once per month, barring pressing issues).

Over the years, Dan has helped me with all sorts of unmeasurable health and wellness issues. Not just internal organs, but also structural aches and pains and psychological trauma—including, as he did recently, migraines and acute anxiety. It's his recent suggestion of possible pituitary damage and mild hypothyroidism that I want to focus on here.

The pituitary gland secretes hormones that help with, amongst other things, thyroid function and blood pressure. If the thyroid is not functioning up to speed, any number of symptoms might appear, including increased anxiety, low basal body temperature (consistently below 98.4, which mine is), difficulty with cold temperatures, dry skin or hair, thin, brittle fingernails, and any number of other things. Dan did some tapping to wake up my brain to awareness of the pituitary damage, and then suggested that I start taking two drops of an iodine supplement (Iosol) daily, as well as adding a thyroid PMG to my collection of daily supplements. I have not had another migraine/panic episode since my visit to Dan.

Yesterday afternoon during my appointment with Nurse Sarah, I told the story of the migraine/panic episodes, said that I'd seen Dan and they'd stopped, and said that he hadn't seen any evidence of external interference—no viruses, bacteria or fungi—but that he had noticed damage to the pituitary gland.

"Yes, we start to see that around the two-to-three year mark after full-brain radiation," said Sarah matter-of-factly. "And you're at . . . just about three years. Yes, that's when pituitary and thyroid damage start to show up."

"Dan just gave me PMGs for my thyroid, and suggested 2 drops every day of an iodine tincture! I've been feeling a bit fatigued, and I couldn't figure out if it was normal aging, or somehow related to this cancer thing!" I said, excited.

Nurse Sarah and Ian and I then talked a bit about what I do, what I want to do, how I've been feeling lately, what my mother does, what Sarah's mother does (not enough, she thinks, if I am looking for a role model on the opposite end of the spectrum of ant-to-sloth), and how to deal with all this. For starters, I'm going to have a thyroid-level blood test drawn tomorrow when I go in for my check-up with Dr Specht, to get a baseline, but REALLY for starters I'm going to continue on with the supplements that Witch Doctor Dan suggested.

I have always trusted Dan, because for several years he has consistently, if not absolutely invariably, helped my body make changes for the better. He is deeply invested in what he does and in his patients; he's bright, he reads a lot about all sorts of things that can add value to NIS, and he's become remarkably intuitive as well as skilled. But I've never before had such clear proof, verifiable and witnessed by one of my allopaths, that he really knows his shit.

So, yes, I'm aging, as all people do, and the elongating healing time-frame and the increasing need to take it easy are completely natural effects of life. I am also, however, being impacted by physical issues that were foretold (if shunted aside by me during the hyperintensity of the lifesaving going on in late May 2008), and recently rediscovered by a favorite alternative caregiver, progressing right on schedule. This doesn't mean I won't have more migraines and panic attacks, or that I'm suddenly ready to jump into rock climbing, horseback riding, and weeding the front yard—separated by dog walks—all in the same day. I don't know what other side-effects might appear now that I'm three years out from that life-saving brain barrage. But I feel good—I feel like I've been placing my health and well-being into good hands.

After the appointment yesterday Ian and I were standing in front of the elevators, waiting and waiting for a ride back up from the bottom to the third floor. I was grinning—I am right now. "Dan called it, didn't he," said Ian, looking in my eyes.

"That is EXACTLY what I was thinking!" I exclaimed back at him.

"You and me," he said, motioning back and forth between our heads, showing the paths of telepathy.

The elevator hadn't arrived and I was bouncy, full of life. "Let's take the stairs!" I said, and we raced up them and out into the sun.

Tuesday, May 17, 2011

The Woes and Complications of the Elderly (i.e. those approaching 40)

(oh dear. this has gotten very long.)
Aging gracefully—slowing down, taking time for aches and pains, easing gently through middle age and into a sedate and orderly dotage—has not been well modeled to me. My mother, 30 years my senior, has taken her retirement as an opportunity not to enjoy a new interest, but rather to cavort gleefully about in a vastly inventive amusement park of new interests (none of which, she reminded me today, includes dusting or seasonal cabinet-cleaning). She lives on the 15-acre land where I grew up and, while she's given up raising livestock and has taken down the intra-proprietal fencing (except for the white rails that define her expansive yard), she does dig around in several acres' worth of flower beds, as well as raising various berries and fruit trees and a giant vegetable garden. She has a now-dwindling collection of elderly pets, and tramps daily through her woods and down her hill to the almost completely silted-up pond with Loper-dog, who is on his teetering last legs but doesn't seem to know it. She takes an exercise class at the nearest Y, and sometimes swims laps in the pool, although as soon as it's barely warm enough to be humanly possible to be in her own pool, she is there swimming with the algae and the waterbugs, getting her daily exercise minus the chlorine. She has season tickets to the opera and to a couple of theaters; she attends choir concerts and the occasional show featuring a grand-niece (to date, the grand-nephews have not taken so strongly to singing and dancing)—as far away as central California.
Mom is also a member of a group of equally garden-obsessed ladies calling themselves the Garden Girls; a book group of long standing; a writer's group of longer standing; a community band; and a brass quintet which she developed, organizes, hosts and cooks for (plus any family members they may bring to rehearsals) once a week. They put on quarterly concerts at a local community center, and Mom organizes those as well.
She also finds time for dinners out and movie nights with friends; she frequently hosts meals at her house; she travels both for visiting within the US but also to tour the world, and she is generally up for an outing when I have something to suggest.
She is not alone in this lifestyle, sharing many of the above interests with her friend Marsh—and aren't I glad she and he have each other (although Marsh could've maybe slowed her down a bit, instead of just having his own endless drive)—but still, for someone (me) who is post-menopausal (well, medically so), taking chemotherapy, and supposed to be cautious of overdoing it so that she can live as long and healthy a life as possible, my mother at almost 70 is setting a very bad example.
My father also set a bad example. He owned his own business until I was about 11 (he was 42), when he "retired" from 7-day work weeks down at the car repair shop and instead spent 7-day work weeks constantly busy doing every other thing under the sun. He built major projects around—and into—our house, took trips to Alaska to work for months at a time in fish camps, had a lively labor trade going in the community, and was instrumental (ha ha) in developing the talented and still thriving Washington Wind Symphony. It occurred to me the other morning that perhaps he somehow called that little hornet to him that awful day 19 years ago on Stuart Island because he couldn't figure out any other way to have a rest. "Hell is if you live a bad life, and as punishment you get reincarnated and have to come back here," my dad would say to me. "Heaven is if you live a good life and when you die, you're dead. That's it. It's all over." I tend to believe in reincarnation rather than any sort of Hell, but I like to think Dad is having a good, long, well-deserved and unjudged nap before working out who he's going to be the next time around.
Even Dr Jason's parents, my almost-parents in Idaho, are awful. They, too, are hovering around 70 and they have 80 acres and still horseback ride and raise cattle and Christmas trees—which his petite mother, A, shears by hand with a big machete. They primarily heat with wood in the lengthy and frigid winters, and K puts up the wood. It's possible they've recently invested in a wood splitter, but I wouldn't be surprised if K still does most of the splitting with an ax.
Perhaps you are getting a sense of some of the difficulties I am facing here.
I am 38 ½. I am strong; healthy. As far as I know, I don't have high cholesterol, low iron, low vitamin D, borderline blood sugar levels or anything else that people my age are starting to worry about, because of all the things to be youthfully prodigious at (piano, writing, cooking, languages), I chose breast cancer, and I haven't actually had any of those other tests done in recent memory. Nor do I seem to catch most of the bugs touring the general population—"working" the way I do, I don't spend a lot a time in the company of the unwashed, germy riff-raff. Earlier this year I mentioned to Dr Specht that I was thinking of getting an internist so that I could keep up on the normal registry of aging in America. She seemed to think that was an okay idea, nothing too important, but yeah, since I was apparently going to be living, against all odds, maybe I should see if my diet of sausage and whole milk lattes was on the road toward killing me instead (not quite her words, of course). I have an appointment in early June for a standard physical, so maybe I'll find out something new and I will get to add one of the common struggles of the middle-ager into my collection of health concerns to manage.
In the meantime, though, I have absolutely no fundamental understanding of what a normal aging process is supposed to feel like. In my world, aphorisms like use it or lose it carry a lot of weight—if I can, I do. And if I can't, instead of simply not, I immediately worry that I didn't use it enough and now it's lost. Even though I am consciously aware that I almost died in the hospital three summers ago and now I am in the best physical shape of my life—I know this—I am afraid that taking an afternoon or a day—or heaven forbid even 15 minutes—to lie down and rest means that I'm dying. I'm not just losing muscle tone or balance or bone density or the sun-streaks in my hair—my life is ending; the cancer is getting me after all. The thought that I might simply be tired, and that rest might, in fact, be good for me, might be a gain, in fact, instead of a loss—is something that I rarely ever consider. And yet I know from personal experience in many disparate parts of my life that a healthy mix of work and rest keeps everything functioning smoothly. The obvious irony here is that these thought processes themselves are exhausting.
I used to do a better job of mixing work and rest, and maybe having cancer has messed with my ability to take time off. Simple enough, I suppose—it is daily pounded into my soul that I have no idea how much time I have left, so I want to DO SOMETHING, and taking a nap has never counted as valuable in my book (since infanthood, I'm given to understand). Anyway, several years ago when I was in my mid 20s and studying in Portugal, Mom had just retired and was struggling with coming down off the frenetic days of her 30-year-long teaching schedule (I'm not sure that she's succeeded). "Calin, I need help," she said to me in one of our rare overseas phone conversations. "I am too busy, and you are so good at doing nothing!" I obviously took offense at this (enough, perhaps, that I've already used it in this blog), but she wasn't trying to insult me. She was trying to figure out a way to spend her days the way I was—walking, reading, learning a new city—whatever I felt like, whenever I wanted, in an easy-going way.
The problem with asking me for advice on doing nothing—back when I was 25 and living in a residencial in Porto—was that there was nothing I had to do. My room was cleaned daily, breakfast was included, I sent my laundry out. I didn't know how to knit yet, I didn't have a sewing machine or a piano or even a laptop. It was 1998, and I paid for one hour of computer use each evening at a little cybercaf√© across the Avenida dos Aliados from my inn, then came back to my room and enjoyed Portuguese television: classic American shows subtitled, not dubbed, so it was no work at all to keep up with the antics of Maxwell Smart or, more modernly, Remington Steele. (note: the Portuguese did rename these television shows while they were subtitling them, and the names had varying degrees of success. "Get Smart" was changed to "Olho Vivo", "Keen Eye"—the pun didn't really work in Portuguese; but Remington Steele, which could've just stayed the same, was greatly improved by being called "Quase Modelo, Quase Detectivo": "Almost Model, Almost Detective". Much more descriptive.)
I now own a house, and have responsibility for dogs and Ian and the home, plus I've learned to knit and I have a sewing machine and a piano and a kitchen and a yard, and I live in a city with a rock climbing gym and horses nearby—and so there is always something to do that needs doing, or something that I want to do. At the moment, I suck at doing nothing. The trick, Mom, to being good at doing nothing, is to take away everything there is to do.
The standard 2-month MRI that I had today (stable) and the subsequent appointment with Nurse Sarah ("You are still leading a charmed life!") have left me with all sorts of new things/additional insights to write about, and this particular entry has gone on quite long enough, so stay tuned over the next few days for me to continue musing about the aging/cancer/life choices/using vs. losing/medical practitioners/happiness/anxiety questions.
In other words, stay tuned for another post.

Sunday, May 8, 2011

Pictures from our Second Erection

Our Orcas Estate is becoming quite the enclave, and you can see pictures of our second building not quite completed here. I added a few more since hiding a link in the previous post--as Ian pointed out, I had forgotten the ones from his camera, which were the ones that actually included shots of me working. Very important that you all should see that I, too, can work.

We're hoping to add pictures of the building completed . . . sometime.

Saturday, May 7, 2011


I've been feeling sorry for myself for the last couple weeks. I've been stuck here at home, my passport gathering dust in the safe (or mold—seriously—we now keep a bowl of dehumidifying pellets in there with the important documents). The weather SUCKS, verifiably so, and things—just all sorts of THINGS—don't seem to be going my way. For example, as you know, I began a serious, for real, grown-up budget recently. It was pretty exciting to start the process, to figure out where our money goes, to self-satisfiedly pat myself on the back as I don't just buy a book because I happen to like the look of it, and I don't just hand over the VISA (or rattle off the numbers from memory, including security code) for dog treats/chocolate/shoes/a handbag or whatever else strikes my slightest fancy—in other words, I've been feeling that I am quite righteously hiking the moral high ground . . . and yet, it seems that every week or so, for the past couple months, I've received a bill in the mail for around a thousand dollars.
Yes, it's true, some of those bills have been from the Seattle Cancer Care Alliance (my 10% co-insurance payment for my Herceptin infusion every three weeks: about $900.00), and it's the beginning of the year and we have to pay and pay until we reach our out-of-pocket co-insurance maximum (which we are hoping we have—a maximum, that is. It's new insurance and very difficult to understand so we can't be quite sure) . . . but a lot of them have just been bills, and I've felt, petulantly, that I'm actually being punished for trying to rein in the motley and flamboyant Wild Horses of Flagrancy.
I came home after attending a somewhat sobering dinner party last night, though, and realized that the bills I've been receiving (minus, to some degree, the cancer ones, but even those . . .) are all signs of the unimaginably unfair advantage I have in life—taken in a global sense, but even in a national sense—being an upper middle-class American living in the Pacific Northwest. My bills are all, with the exception of the Bs for Boat, from the A-named services of the Affluent. I have had to pay the Accountant. The Attorney. And, because Ian and I are particularly fortunate, the Architect as well. Waaa, waaa, waaa. Tiny violins.
Nevertheless, this gushing outflow has stressed me out a little, not least (as Ian points out) because we are so very well aware of it now.
On top of the financial "woes"—or rather, over, under, around, and interposed between the very molecules of the financial "woes" and every other part of my life—are my health "woes". I don't mean to be flippant with the quotes. I know (I KNOW) that living with my state of health is a constant trial. Usually I don't think much about it; usually I'm perfectly functional if not quite perfectly fine; and/or I'm off in some exotic part of the world where it's easier to deal with the vagaries of day-to-day life (i.e. sub-Saharan Africa) than it is here where the vagaries are endless subtle variations on a theme: Is this new tickle/stumble/lost word/sense of fatigue/pinprick-sized spot/etc. ad infinitum, a sign of my imminent death? But for now I am here, and I have to learn to be here, in the present moment with the vagaries of home, and none of the distraction of curly-headed children asking me for one pen or ladies in kangas trying to sell me live chickens to take with me on the bus.
And, I had been doing quite well here. Happy, feeling more and more confident in my physical health and mental health. Getting above my "predicament" and actively making some plans for here, for home, instead of only reacting. And then, a week ago Thursday, at the end of a day that involved picking up new mastectomy bras, bringing lunch to my grandmother, several hours of infusing in an uncomfortable vinyl chair at the SCCA clinic, and dinner with Mom and Marsh and talk about a building project we were getting ready to do that weekend on Orcas (leaving the next day), I got a migraine. My first in several months. And following quickly on the heels of the opening strains of visual aura came a panic attack—out of the blue, and very scary. As my vision stopped fracturing and came back into focus, everything else around me pulled away, including my own voice. I lay in bed (it was about 9:30pm at this point) almost unable to nerve myself up enough to reach behind me—10 inches away—and take ½ of an anti-anxiety pill. Ian came in and I spoke with him, but my voice seemed to be coming from a thousand years from here. One of my friends said it sounded like a drug trip; the disconnection and surrealness is a little like being dangerously drunk (not that I would have any idea about that, Mom), but much, MUCH scarier. Panic attack; dread attack. Ian lay next to me and held my hand, the dear, reminding me that I had been through these before, and they pass.
And this one did pass, and I got back out of bed and packed my bag, and Friday we drove up to Orcas and over the weekend built the second stage of our little cottage project, and drove back Sunday night, and Monday night I got another migraine, followed closely by another panic attack. This one happened slightly closer to bedtime and so I just took my nightly pill and called it a day, and the experience was less bad than previously.
Witch Doctor Dan had a cancellation Wednesday morning and worked me in and gave me the not really comforting news that he thought these neurological episodes hadn't been psychological like previously, but were instead physiological—namely, my pituitary was displaying signs of damage. This is not particularly surprising news, as Dr Jason warned that the full-brain radiation would have side-effects and after-effects for years to come, but it was . . . draining. The whole several days have been draining. I mean, again and again and again, I thought I was done with this.

And again and again and again, I'm reminded that I am not done with this. That there is only one end to this, because this is my life.
We had dinner last night at the home of a colleague of Ian's. The wife of his workmate, a beautiful girl, excellent chef, funny, bright, well-spoken in her second language, arrived in the United States for high school in 1998, from Transylvania, Romania. She went on to become a concert pianist and then, maybe a couple years after that, was diagnosed with a brain tumor. The only way to treat it was surgery. They did the best they could, but she lost just enough motor skill that she can no longer perform. Then, a couple years ago and completely unrelated, she discovered that she has early stage MS. I didn't ask her age, but starting high school—high
school—in 1998—she can't be much older than 26.

It's true—maybe she wouldn't have survived the brain tumor—already—if she hadn't left Romania. Nevertheless, she did leave, and did survive, and now what she has to look forward to is a lifetime of degeneration. I don't. Maybe I'm not such a poor thing after all.