I Thought I Was Done With This . . .

Trouble In Paradise

2011-10-28T18:13:00.000-07:00

(note: this was begun on the afternoon of Tuesday, 25 October)

Careful readers may remember me writing recently about the choices I was making in my life, and how pleased I was with them (it was only the second most-recent post; the most recent before this being the actual first essay I submitted to class). Even if the cancer were to go away (I had discovered about myself and my path), I would still be taking my editing course. It was quite exciting, to find myself actually fulfilling my needs and desires.

After a mere two classes, I am surprised to be finding myself not Utterly Thrilled, nor Over the Moon, but rather, Increasingly Hesitant about the prospect of becoming an editor.

People, it takes a lot of work. I don’t have time to be writing this post right now but I cannot get my brain to focus on any of the projects I am supposed to be doing, because in the event, it has turned out that I really like almost all the other aspects of my life, and editing is threatening to make many of them go away. In a nutshell, I can’t have it all.

There are several things interacting here. One is that I have had two significant changes to my day-to-day life, between applying for the editing program and actually beginning class. The first change was the introduction of medical cannabis into my care regimen. I am discovering that editors must be driven, focused, and have high amounts of energy to speedily work through manuscripts . . . and I, to put it simply, really don’t, at least not at this time in my life. On the first day of class we had a proofreading exercise, a sample test, and I was quite mediocre at it. My teacher did say that proofreaders are very detail-oriented—even compared to other editors—but I am finding that other editors are quite detail-oriented also.

The second change was the meeting with Eric Thorton the medium/healer, who removed a number of unwanted, unneeded anxieties. How much of my “drive” before was inherited directly from my father and was not necessarily “mine”? I have felt significantly less anxiety and, concomitantly, significantly less guilt over my own lack of precision, in all sorts of things in my life since seeing Eric. The result of these two things is that I’m sleeping more, I’m much calmer, I’m assuming the cancer is finally being eradicated, and all I really want to do is whatever I feel like doing at any given time. I.e.: NOT homework.

Less recent physiological issues also affecting how I would be as an editor include my eyesight and, more generally, my physical health and fitness. As far as my eyesight: I still have fluid and some small amount of cataract in my right eye. To the best of my knowledge (if three years’ experience provides knowledge), the fluid will never again be completely gone. My left eye had been perfectly fine up until recently (normal short-sightedness and astigmatism aside), when I started noticing an oval cloud over the upper right side of my focal center. This cloud has not gone away. I have an eye doctor appointment in a couple weeks, and I will have to get both eyes dilated. In case the difficulties here are not clear, let me elucidate: Editors use their eyes A LOT. Sometimes, I can’t look at a computer screen—or even a printed page—without feeling like I’m going to give myself a migraine. Other times, my eye issues are visible enough to me that I am distracted by the distortions and blockages. Certainly, I cannot always skim-read something as quickly and precisely as I would like.

Other than that, though—I don’t know that I want to sit down—physically sit down, or even stand still—for the hours needed to really be an editor. No, I think I can be even more honest: I do NOT want to sit down that much. I have found a level of physical fitness that I love, and I want to maintain it. I think I’m a medium-fast reader, and mildly detail-oriented, but I’m beginning to suspect that I’m much more interested in doing a variety of things mediocrely than specializing in just one.

(note: it’s now Friday, 28 October)

As you can see here, I do not have the same amount of time that I used to. This comes as a surprise to no one but, as you can also see here, me. Just after I left off writing last Tuesday, I called Ian (it was his birthday, but I called for advice, not with good wishes), and he talked me out of quitting after only 2 classes. “There’s a learning curve,” he suggested. “When I was working on my degree, there was a lot of stuff I had to learn how to do. And now, years later, I’m pretty good at knowing what’s important, and what doesn’t need to be worried about.” He made totally reasonable suggestions for how I might think about my return to school, I snuffled a bit into his ear, and then I buckled down and did some work. And I ended up very much enjoying class number 3.

The other thing that happened on the 25^th after I stopped writing here was that I got email back from Deb, Dr Specht’s nurse, and she said that my tumor markers had reversed their trend and, instead of taking giant steps down, they had taken a disturbingly substantial step back up: instead of 5 and 56, I am now at 8.5 and 69. Well, shit.

This led me to do some more thinking about my cancer and what I’ve done for it—I’m finding it harder and harder to hold back from the anthropomorphizing—and just how tired, bored, frustrated, and DONE I am with giving it so much attention. Yes, folks, I’m tired of sharing news that upsets people (for those few readers who may be cheering every time it looks like cancer is regaining the upper hand, I’m tired of sharing news with you as well).

I keep saying I don’t identify as a cancer patient—certainly not a cancer FIGHTER—but then, I have a hard time meeting anyone without revealing my breast cancer status. I’ve been thinking about the difference between an excuse and a reason, and I think that, without even realizing it, I have allowed cancer to become an excuse. For example, it’s reasonable for my horseback riding instructor to know my health history, and my current situation: drugs, fatigue, bone pain, etc. But a random co-worker of Ian’s at a party? She doesn’t need to know why my hair looks thinner to me than it used to.

In short, I'm going to take a break from I Thought I Was Done With This. I’ll still write in The Dilettante Traveler (coming up: Kenya, 20 November and China, late February!), and we’ll try and keep up with Orcas Estate, and occasionally update Spoover, but I’m TIRED of writing about cancer. And so I’m not going to for awhile (feel free to send me an email and ask me directly how I’m doing, if you’re interested).

Cancer doesn’t deserve so much attention.

Wherein I Return to School After Several Years’ Absence

2011-10-18T18:32:00.000-07:00

“Your assignment for next week is to write a one- to two-page, double-spaced essay,” said the teacher, “about anything you’d like.”

One to two pages, I thought. About anything I’d like, I thought. Easy! Child’s play! I write all the time—I’ll just pick a topic I can put in my blog! I thought. And there the thoughts ended.

I lead a rich life, full of story fodder. “There’s a book in that,” my mother is constantly telling me, whether I’m talking about my dogs or the horses I regularly ride; travel to exotic islands (Santo Antão, Cabo Verde; Necker, British Virgin Islands; Folegandros, Greece; Orcas, USA); or the breast cancer I’ve been dealing with for 12 ½ years now.

Of course there are stories here. For the past several years, I’ve written these stories out in blogs: in The Dilettante Traveler for all those exotic locations (dogs and horses occasionally included); or in I Thought I Was Done With This for the still-ongoing, often tedious and boring, and yes, occasionally petrifying experiences of living with cancer.

The problem for me is that I write fluidly and fluently for my own pleasure, to tell my own story on my own terms in my own time; and that the moment someone issues a command, or just a request, or even the merest hint of a suggestion that I write something specific for them, the taps shut off and the trough full of rich, life-sustaining inspiration goes instantly, echoingly, frustratingly dry.

Ugh, I thought, five days after class when I had yet to come up with a topic I wanted to write about. I’m taking this class so I can learn to be usefully critical of other people’s writing, not get bogged down in my own, I thought.

Good thing I chose Editing and not The Art of the Novel.

Calin Taylor

Keep On

2011-09-27T21:21:00.000-07:00

A quick entry as my cannabis seeps through my body, distracting me from . . . everything.

I had my first post-Healer, post-Cannabis, post-Lapatinib experiment (remember, it crosses the blood brain barrier and the other drugs don’t, which is one of the reasons Dr Specht has been such an enthusiastic pusher) MRI today. I didn’t sleep quite as well last night as I have been recently, but probably better than I usually do before scans (the drugs, they are my sleepy sleepy friends). As I was lying there before sleep, though, I was thinking about what I would do if the scan came back normal. Like, nothing at all. Well, a brain of course, but no lesions. I imagined the looks on their faces, Dr Jason and Nurse Sarah, and it totally cracked me up. But then I really thought about it—what would I do after that? After evidence of a cure? If I’d been freed from cancer, what would I do?

I would probably stop Navelbine as soon as possible, sure, so that I could start taking some high-powered antioxidants, but aside from that, I would do everything the same. I’m really excited to be starting my editing course in a couple weeks; I’m really looking forward to going back to Kenya after 15 years; I am interested in learning more from Eric Thorton even if I don’t “need” his gifts; music, horses rocksboatsknitting . . .

I would do everything the same.

I’m just so tickled that I feel that way, and that I somehow managed to notice. I don’t need to be freed to succeed. (weed)

All of this leads up to, after a long, long multi-hour wait to be scanned, nurse Sarah coming through the exam room door saying “Whatever you’re doing works well for us!” Yep, early reports are for a stable MRI! Nurse Sarah was the only one to read the scan by the time we saw her, but she had looked back and forth at several pictures and saw no new spots and no larger old spots!

Who knew stasis could be so AWESOME.

My Father’s Daughter

2011-09-19T00:21:00.000-07:00

As per my usual when meeting a new health care provider, I prepared for my first visit to Eric Thorton, spiritual healer and medium, by making a list of ailments and physical annoyances I’d been experiencing, in the interests of having a place to start, a road map, if you will, if he and my Guides didn’t come up with one themselves.

Yes, my Guides. Eric talks to people’s Guides or Guardian Angels—and he distinguishes between the two. A Guide is a spirit being that has been or could be incarnate (i.e. a dead human’s spirit could, I guess, become a Guide—I’ll need to ask); an Angel is a spirit being who is only spirit, and can never animate flesh; but aside from that they function very similarly in our lives (what their actual functions are, I am only just beginning to learn). To prepare for a first meeting with a new client, Eric does a meditation with his own Guides (and/or Angels) and mine, the morning of the appointment. In that meditation, he is shown various pictures and given various words or phrases that are important to the client and the healing that is about to take place.

Let’s just say that none of the pictures he saw had anything to do with my right thumb, which has ached off and on, with varying degrees of severity, for the last 5 or 6 years. Or, since I learned to knit.

My achy thumb was on the list because, I’m sure, it’s a relatively minor pain in the scheme of things (so if it can’t be healed, it doesn’t destroy my hope for larger issues?), and I want it to go away without my having to take pain pills, or give up knitting (which I don’t do in the summer anyway, but my thumb still pains me).

Cancer was not on my list.

How interesting it is to me, now, after the 6 ½ hour session and the things that transpired, that asking for relief for one modest physical issue was okay to contemplate—but that asking for relief from cancer was not. He is a healer after all. Why did I want to see him, if not to be healed?

In part, I wanted to see him because what he does, what he sees, if he is speaking the truth (and I believe he is), is so game-changing for the way this planet works, that I wanted to go and see if he could help me, so that maybe, just maybe, I can someday help other people. For several years now I have been practicing the Tarot both for myself as a way of communicating with my Guides, and for various friends or relatives if they happen to want a reading. I am also hyper-aware of how my body feels at any given time (these things are all interconnected). I am aware of my energy state (and have long been in the habit of ignoring it if it’s not FULL STEAM AHEAD!); both physical and more . . .let’s say super-physical. We all have energetic bodies as well as physical ones, and I can feel my energetic body and the shifts and flows in it.

I’m finding it difficult to write this post. In part, it’s because I have, from some perspectives perhaps, nothing to write about. If you don’t believe what I’ve put down here already, a blog post is not going to be the forum to convince you that I’m not only telling the truth, I’m also talking about reality. The other reason it’s difficult is that the experience really was, I think, life changing. It’s a bit too soon to tell how, exactly, the changes will show up, but some fundamentals are profoundly different. I’ll share with you some of the specifics of the appointment, and you can do what you will with them.

First, we sat on the couch in the living room of Eric’s rural King County house and he gave me about an hour’s quick tutorial on Spirit/Guides/Angels, on energy, on the transference and creation of different energetic forms, stuff like that. He wrote a book several years ago, and I read it before meeting him, so I understood—or at least was familiar with the words—most of what he was saying (and some of it I had already heard from others or figured out on my own with the help of my Guides, through Tarot or the I Ching).

We then moved to his massage table, which was just behind the couch, set at an obtuse angle so that I lounged on my back instead of being flat. The angle was, really, completely ideal—I remember noting it a couple times throughout the event? appointment? reading?. I was comfortable throughout, and I was there for most of five hours. Once I was settled, Eric called his Guides and mine (mine, five of them, came dressed in Native American garb, so he said—I still can’t see them or speak with them directly), and asked them to open up my 7^th chakra, the Crown chakra, so that he could get a better look at what was in there. The Guides did so, stretching the chakra open behind me, so that the next time Eric spoke to them, I heard him across the room, about 20 feet away.

I think, for the sake of brevity—oops, too late—for the sake of finishing a post, I will focus on only one clearing he did, and leave the past lives (two were of import for this first visit) for another time, even though it all is connected.

So. Children mimic the energies of their parents to some extent. When they are first born, and until adulthood, there are not a lot of choices kids have. They don’t choose their parents (the physical, animal body doesn’t, at least), they don’t choose their schools, they don’t choose the books they first read, the religion they first practice, their nationality, their socio-economic group, you get the picture. In learning how to be a part of their families, parental energies and practices are copied. All of these things help form what Eric refers to as the “default personality.” In my particular case, something that happened in one of my two featured past lives set me up to be particularly good at taking on another’s energy, and so the energy I had from my father was not just my energy, built up to work with him and the family, but actually a lot of his energy. “He was pretty messed up emotionally,” Eric said (or something like it—I do have a tape, but have not transcribed it yet), “a lot of anxiety. How old was he when he died?”

“Fifty-one.”

“Yikes! That’s not old! This stuff really messed up his body!”

Eric asked if I remembered anything from my childhood about Dad that might relate to me taking on his energy, and what I remembered was this: I was about nine years old, it was fall, and I had learned to blow a bubble when chewing gum. My father hated gum chewing, not because it’s crass, but because it’s noisy. Not really noisy, so’s you’d notice or anything, unless you were my dad. Then it was noisy, repetitive, and the MOST ANNOYING THING EVER. Unless you were clicking your ballpoint pen open and closed. Or crink-crink, crink-crinking your pop can after you’ve finished your drink. Or anything else you did more than one time in a row. I learned about his noise neuroses so early on that it never occurred to me to question them; I just took on the role of Daddy Protector, and warned whoever came to the house that my dad didn’t like gum chewing. He also didn’t like open-mouthed food chewing, but that was another story. In this story, young Calin ventures out to the barn where Daddy is working on a farm project.

“Daddy,” I said, going up to him as he came toward me, wiping his hands on his ever-present back-pocket grease rag, “I know you hate gum chewing, and I won’t ever do it again in front of you, but I just learned how to blow a bubble and I was wondering if I could show you. Can I?”

“Sure,” said Dad, putting his still-filthy hand on my shoulder. “Let me see what you’ve got.”

I did my best and successfully blew a bubble. “Okay,” I said, relieved and pleased. “I’ll throw it out now.”

“You can keep chewing it,” Dad said, “just this once.”

I did keep chewing, for about 45 minutes, as I wandered about the barn and Dad went back to his work, but it didn’t feel right—I felt like my chewing was probably bothering him anyway—so I spit out my gum long before I normally would have. I normally would’ve chewed a piece of gum for hours, until it was, literally, dissolving in my mouth. You didn’t know gum can, in fact, be digested? It can. In the mouth.

“I was going to say age 8,” said Eric, after this story. “That seems to be when you actively took on his energy. Well, he might want it back, and YOU certainly don’t need it! Is he still between lives?”

“Yes,” I said immediately. Is he still between lives?!? How the hell do I know? But I DID know—I didn’t wonder, I didn’t think. I knew.

Eric cocked his head, listening to something. “Yes, he is,” he confirmed. “This is great,” he went on, “he can get his energy back, and maybe learn what he was supposed to from it, and not have to repeat this life, and you can get on with your own!”

He and the Guides did the clearing, and then cleared the energy associated with my mother as well.

That evening, back at home in Wallingford, I took the dogs out for a late walk. I felt tall, and straight, and upright, and free, and calm. I did my best to measure myself against the old mark on the kitchen door, and I looked one half inch taller. Better yet, the anxiety was gone. I didn’t take a clonazepam that night when I went to bed, and I haven’t since.

It’s been particularly interesting to be out at the Ould Sod for this weekend, taking care of the farm—to see all my old haunts, and think about them now that I am less haunted. I’ve been spending time moving my energy around, flexing my chakras, bringing in Universal energy and Earth energy, feeling them swirl together, torrents of light coursing through me, causing involuntary shudders and gasps, and making me burst into laughter. Yes, really. I’ve also been taking my cannabis cure each night (I stepped my clonazepam down to half a pill when I started the marijuana, but it’s still interesting to not need any), and sleeping a lot (Ian and I are currently on diverging clocks: at sea, he’s up at 6:30 and in bed by 9:30. Last night, I was in bed by 2 and up at 11.). I’ve been climbing trees and leaping over fences, and walking to the pond, and picking blackberries, and I had L&S and Jessie-dog over for dinner and pie. I’ve also been finding myself canceling appointments . . . and just resting.

I’m amazed at how easy it is to take a break and lie down, when I’m no longer judging rest as useless, wasted time. There will always be something to do. It can wait for an hour.

Leaping Down

2011-09-13T12:15:00.000-07:00

I am slowly learning how to use my medical marijuana, which is to say that, if I’m willing to cancel all daytime appointments and sleep away my afternoons, I should take a dose in the morning. Otherwise, I should do all my daytime appointments, then take my dose when all that’s left is to be pampered and waited on by my dear husband who is . . . oh wait . . . going out to sea tomorrow morning before the almost-equinoxal crack of dawn.

Ian is going to be volunteering again as a fish counter on a leg of one of the annual survey trips down the west coast of the US. This will earn him a lot of “comp time”, so that we can go to Kenya together in November. But it means that I, for ten days, will be on my own, back to caring for my own needs and those of the dogs, and then, for the last few days that he’s out, I’ll be in Maple Valley at Mom and Marsh’s, looking over their geriatric pets while they enjoy some time away. It’s only fair, I SUPPOSE, that I pay M&M back in some small way for all the time they’ve spent watching Spackle and Hoover. THE THINGS I HAVE TO DO.

But mostly I just wanted to write this post to let you all know that my tumor markers continue falling apace: from 81, to 68, to 56 most recently!

Legal

2011-09-05T22:03:00.000-07:00

This weekend I became a legal user of medical marijuana. My sister-in-law, who is a prosecutor in the Seattle area, reacted vigorously when I told her I was going to be able to use pot with permission. “OOOH!” she exclaimed with relish (she loves her job), “I can tell you all the dispensaries not to go to because you’ll get SHOT!”

Right. Just because Washington State allows me to have weed doesn’t mean everyone is allowed to have it. And me, innocent, law-abiding, clean-living (with the exception of chemotherapies, of course) soul that I am, shy and retiring and insecure, arms full of a plant with a lot of value on the street—I’m the perfect target. And even though I am, in general, innocent and law-abiding and clean-living, and even though I am not shy, retiring, nor insecure—and I’m bad-ass buff—none of that matters to a handgun anyway.

One of the first side effects that I’m noticing from my newly cooked marijuana oil is a great need for naps. I mean, I am chill, brother. I decided that, if this oil works and cures my cancer, I would want to have a record of it, from the very beginning. I started that record yesterday (I think it may be a memoir project rather than just a series of blog entries . . . yep, that’s me, kicking around the idea of not only becoming a legitimate editor, but also writing a book . . .), but what I’m finding, at least so far, is that it’s hard to build up enough steam to do something when you are, essentially, stoned (the body is supposed to adjust to the side effects of the oil within 3 weeks, and it could be that I should be starting with a smaller dose anyway).

Dude. I’m actually relaxing for the first time in . . . who knows. Like, really just wandering around the house, having extensive, slobbering naps and in general letting things slide (with the exception of the laundry, which was really necessary). One of our friends, who may have been suspected of using pot illegitimately, and therefore may have been my drug “expert” over the last couple weeks, suggested that perhaps rest, just rest, once in awhile, might cure me. Maybe that’s the secret to the pot potions—they simply put you to sleep so your body can do its thing.

Back to procurement, though, because medical marijuana can do no one any good in absentia. Fortunately, for the avoidance of handguns, many of the medical marijuana users in the area are in difficult stages of difficult diseases—I mean, unfortunately for them of course as far as how they feel—but fortunately for the distribution of legalized pot, because there are lots of delivery options.

The industry is a weird mix of business-as-usual and hush-hush. I received my card from a Naturopath in West Seattle, at a 6pm appointment (i.e. after normal office hours), and it gives me the right to have, for my own use, a 60-day supply which comprises 24 ounces (1 ½ pounds) of marijuana bud and up to 15 plants. The appointment cost $150 if I brought evidence of current disease activity (I had evidence in spades); $200 if I didn’t, and needed the doctor to evaluate me. Payable in cash, or a money order. I chose cash.

There’s an online list of area dispensaries and other informative medical marijuana websites, and I eventually navigated to a place that could find me a pound of Indica bud (various strains) and deliver it to my house (it’s since been processed). I had to scan my driver’s license and marijuana card and email them over to the company: very official. The amount that I had to pay for my take, though—$3600—was in cash, and is a “donation”. The “donation” language is completely ingrained in the marijuana dispensers, because the law in Washington doesn’t make any provisions for how the marijuana should change hands; and federally, selling drugs is trafficking, and is a felony.

I discovered what may become my pet editing project in surfing through all this drug stuff: every single one of the websites I saw had typos, grammatical errors, and/or other unprofessional-looking issues with language. I should at least be able to help legitimize medical marijuana in a linguistic way. After the way I’ve been feeling today, though, both with doing things around the house and with writing this entry, I have a newfound understanding for the sloppiness. Does tidiness really matter? I keep asking myself, before lying down again and staring at my toes, or the patterns of shadow on the ceiling of my bedroom, or the backs of my eyelids.

On the evening of my delivery, the guy, whom I know by a first name only, called a couple times; first to say he was running late, then to find out exactly where I was.

“Is there off-street parking, or a driveway?” Marijuana Man asked.

“Uh, no, there’s not,” I replied, hesitantly. “It’s just street parking . . . I mean, we have a short driveway, but . . . just how cloak-and-dagger is this?” I finally asked, and he laughed.

“No, no, the street is fine. I’ll be there in five minutes.”

The deal came off perfectly easily, the first batch of oil went as expected, and now all I have to do is take a tiny bit every day, and see what happens.

Wake me in a couple months.

Solid

2011-09-02T11:34:00.000-07:00

The blogger interface on my cell phone only allows me to post a title, not an actual entry, which is why yesterday’s post about my tumor markers, entered from the clinic between appointments, was a surprisingly succinct commentary on the current state of my life, as compared with most commentaries. Such as this one.

Today’s title is, of course, an increasingly less obscure reference to the state of my bowels. They were, this morning, almost too, as these things go. I am having a real milk latte to compensate, but a smallish one. I’m taking pains to not share it with Hoover.

There were a couple notable things about my appointment with Dr Specht yesterday. One is that she said she was not, at this time, going to ask me to reassess my experience with Lapatinib and try it again, maybe starting at one pill per day and working up to maybe no more than three; no, she was not going to ask that at yesterday’s meeting, but that perhaps in 3 weeks, or 6 weeks, we could get together again and discuss. She did ask, in the absence of asking me to reconsider Lapatinib, that I please not deny the possibility, completely, of ever taking it again, at this time.

“Well,” I came back, “it’s a good thing you’re not asking me to reconsider today, because the answer would be a resounding NO. It was the WORST THING I have ever experienced in my 12 ½ years of breast cancer treatments.” I think that’s true even taking into account the intubation and bedpans of PCP in 2008, because at least then I was in the ICU of the hospital, with my own 24-hour butler (or nurse—hair splitting, really), and enjoying some pretty bad-ass psychopharmacology.

“Besides,” I said, “I have a couple new things I’d like to try. These are pretty out there,” I said, “and you’re going to think they’re crazy, and you’re definitely going to think one of them is crazier than the other.”

“Okay,” she said, nodding and looking doubtful. “This is not in the absence of all treatment, is it?” I assured her that Herceptin and Navelbine could stay on the roster for now. Dr Specht finds me, and my flamboyant turns of health, a bit difficult to understand, and maybe even to accept. I don’t fit neatly into very many boxes (this being a notable exception).

“First, sometime this weekend I will be making my own hemp oil,” I said. “No, I’m not going to be smoking pot, because, fun as that is, the curative powers of the marijuana plant come when you extract the oil and ingest it, in small doses, over two months. They say that’s enough to cure most cancers.”

Dr Specht’s look of doubt increased, and I understand—I’m not convinced, either, that hemp oil, even rich in cannabinoids and whatever else, will cure my cancer. But the side effects are pretty minimal, particularly if you take the suggested dosage of one rice grain’s worth per day, so—worth a try. An aside about the whole medical marijuana establishment: I believe I have found my first editorial crusade. There is not a single medical marijuana website out there that I have seen—and I’ve seen many in the past month—that is free from typos and grammatical errors. I will happily volunteer my time and skills to legitimize, if only in a linguistic way, the use of this plant.

We finished up our discussion of the hemp oil I was going to make, the process, the expected results, etc, and then I said, grinning, “Okay, and now for the one that you’ll think is REALLY crazy!”

Dr Specht looked alarmed. “What?” she exclaimed. “That wasn’t the crazy one?” Dr Specht is young, about my age (I think a couple years younger), but is definitely dedicated to her beliefs about Western medicine. This is good—she does excellent work, and knows her stuff really, really well. But I am in a new wave of young cancer patients who are living with their cancers and therefore integrating their personal health systems from all sorts of arenas—and I’m putting all those usual arenas—and more—right in her face. This is also good. As she grows as an oncologist, and continues down the path of her career, perhaps for the next 3 or 4 decades, it will be good for her patients that she's already heard about some of the “crazy” stuff out there. And she did offer me the six weeks just so I could try my things.

“Nope,” I said. “This is the crazy one: I’m going, on September 15, to visit an energetic, spiritual healer who is also a medium. He can release dark energies from people’s bodies and help them heal physically.” She smiled and nodded. “He wrote a book,” I went on, “and is pretty clear that all he can do is help release energies and, for those who are interested, help explain where they're from—but for any healing to stay, the patients themselves need to work through the issues that allowed the energy to come around in the first place.” With a final nod, Dr Specht moved back to the roundly physical, and asked about my eye issue.

“I got a steroid injection into the eyeball a couple months ago,” I said, “and I think two months is about as long as the effects of that are supposed to last. I see the eye doc again on the 15^th. Oh, in fact, the morning before I see the healer!”

“Don’t tell him!” said Dr Specht, “And see if he figures it out on his own!”

“He doesn’t want any of his clients to tell him anything,” I replied. “He learns it all from his guides and theirs!”

At lunch yesterday after this appointment, friend L suggested I wear a thick turtleneck to hide my port and my faux teton, and I called her a doubter, too. I’ll probably have one eye dilated when I arrive at the healer’s, though, and that will be hard to hide. I’m not a complete credulous rube, though. I think I’ll be okay.

And now, much as I’m sure I need to re-edit this post, I don’t have time. Riding, horses, next on the agenda today!

Markers Down from 81 to 68!

2011-09-01T11:26:00.000-07:00

Too Soon

2011-08-31T14:26:00.000-07:00

In celebration of my decision to just say no to poop pills, I made myself a giant latte this morning, my usual—split quad grande with whole milk—after days and days of being careful about the caffeine/lactose ratio (the combo can be quite the roto rooter). I had been having a mere 1 shot americano or some such thing, just enough to stave off withdrawal headaches on top of everything else.

Um, yeah. Guts not ready for the big time.

I maybe made that choice incorrectly (okay, there’s no “maybe” about it), but at least I made another choice correctly: I moved my paper med hemp “cards” from the bentwood box where I normally set my coffee, and put them on the floor behind the big comfy chair in our living room. I haven’t been able to train myself to not leave my coffee unattended on that box, and Hoover, contrary to somehow learning on his own that I’d rather he didn’t sample beverages that I leave around at dog level, has become quite the sneaky fiend when it comes to helping himself to drinkables.

Anyway, I had realized that I needed to abandon my drink but had not yet dumped it out, and was down at the other end of the house availing myself of the facilities, when I heard a terrific CRASH. “HOOVER!” I yelled and, as soon as possible, raced into the living room.

Oops. Little Dog (as we sometimes call him, since he was little when he came into the house) had made an error in judgment, and shattered glass (from one of our Bodum vacuum insulated double-walled mugs) and latte were splattered lavishly over the papers on the bentwood box, the computer power cord on the floor, and one or both shoes of several pairs that seem to migrate here to recline under the ottoman.

Hoover was nowhere to be seen.

My pot cards were dry as a bone.

I did a quick search for Hoover, found him cowering guiltily on the dim landing of the basement stairs, and tossed him outside. I didn’t even toss him particularly meanly—after all, I had placed temptation, yet again, well within his reach—but still, some recognition of his badness was necessary . . . but also, I didn’t want him to get glass in his paws until I had cleaned up.

I had to call Taya and postpone an appointment I’d been very much looking forward to, because the drive to Lake Stevens seemed like a bad idea, and so I’m disappointed about that. On the other hand, Hoover, who is a big chickenshit about loud, unexpected crashing noises that he has caused, may think twice before helping himself to my morning latte again.

N.B. While composing this post, I received a call from Eliza at the SCCA, saying, with great joy in her voice, that my three-drug mash-up of Herceptin, Lapatinib, and Navelbine had been, at long last, APPROVED! And so now I will, in fact, still have to tell Dr Specht, tomorrow in clinic, that I am NOT, NO WAY, NO HOW, going to take Lapatinib in ANY dose, for ANY amount of time, EVER AGAIN. Sigh.

A Stand

2011-08-30T17:21:00.000-07:00

This afternoon I called up Deb, Dr Specht’s nurse, so that I could tell her to pass on that I was NOT going to be resuming Tykerb/Lapatinib/Shits Unlimited after my two-day doctor-prescribed reprieve. My taste of poop-free liberty has been so sweet, so restful, and was so immediate, that I have no doubt that the drug was not the right one for me.

This morning I got a call back (!) from my case manager at GEHA, my insurance company, explaining why they were loath to pay for both Navelbine and Lapatinib. She said that, according to GEHA standards, if a combination of medicines has been approved by the FDA then they pay for it; if a particular combination has not been approved by the FDA (which is the case with Herceptin, Lapatinib, and Navelbine all together; Herceptin with either of the others is fine), then GEHA considers any use of the combination to be a “study”, and they don’t pay for studies. The very nice lady on the phone said that this was because they didn’t want to accidently pay for toxic combinations for people. She also told me that my doctors had 6 months and 3 chances to appeal . . . but I had to wonder . . . at least for me, maybe the combination of Herceptin, Navelbine and Lapatinib WAS toxic. It certainly felt that way.

I know that denying—me personally, not my insurance company—a drug that could potentially reduce my cancer load (bone-based at the moment) is theoretically risky. But unlike Spring of 2007 when I was just done, not willing to play cancer games anymore, and actively gave up all treatment, I am not done. I know that, for the time being, I need to be treating this cancer. I also know that there’s no point in a cancer treatment if it’s going to kill me before the cancer can.

Anyway, I do have a couple things coming down the pike (turnpike, I assume?), including Healer and Hemp, and without Lapatinib gumming up the works (the insurance works, obviously, not my works), Navelbine is an easy in. And while I’ve been writing this, Deb called back and said that of course I could quit Lapatinib—it was entirely my choice—and she’d see to it that everyone knew and Dr Specht and I will talk about the future at my Thursday visit.

My throat is back to normal today, and my hands feel less dry, my face looks better, and although my guts have continued quite loquacious, I’ve been able to pass gas and only gas (I think . . .).

I am so relieved.

Shitty

2011-08-29T20:46:00.000-07:00

Well . . . the desensitization that Witch Doctor Dan did for me last week over my Lapatinib, after my first horrendous morning of 5 diarrheas and almost as many Imodium pills, gradually wore off over the week. It sustained well enough and long enough for me to have quite an enjoyable riding lesson on Friday afternoon (although I was a tiny bit weaker than usual due to lack of proper food/liquid processing), but by Saturday morning my body was fully re-sensitized to the noxious pills, and by this afternoon, today, right now, my sensitivity is so over the top that pretty much all I can do is flop around on my bed, the last dregs of liquid (not already deposited in one of my tri-hourly trips to the toilet) leaving my body in thickly salted, exhausted tears (oh, well, and I can muster the strength to complain about the experience).

Seriously, this drug is THE WORST THING EVER. I would MUCH rather be bald. Again.

I met with a nutritionist at the SCCA this morning and explained my predicament which was bad, yes, but not as bad (I was led to believe) as some: I, at least, experienced some respite (I am not, for instance, typing this from the privy), and I had not had to use the extra pants/panties (trousers/pants to you non-American Anglophones) that I’ve been carrying around with me. Oh yes, I have been carryng extras.

I took only ¾ of my dose last night, hoping to calm things a bit, but no luck. Lapatinib, and Lapatinib-induced diarrhea, will not be calmed. Yesterday I had at least 5 Imodiums and 2 Zofrans; today I’ve had 1 Zofran but 6 Imodiums—the crap isn’t even slowed. Or rather, IF it is and what I'm experiencing is an improvement, I would be dead by now without the pills. Or living in the tub.

Every time I have to pee, I do number 2 too. And number 2 frequently calls upon me in the absence of having to pee. My hands are dry. My face looks dry. My voice is lower and scratchy, and the back of my throat has that long-forgotten I’m-camping-on-the-equator-for-two-weeks-and-water-is-precious achy feeling. A bit tight, a bit sore. I haven’t felt very hungry, because my guts are discombobulated, but I have been weak and dopey . . . so, I’m guessing I need some food, as well as some fluids.

But every single thing that passes through my mouth races, burbling and chortling with evil glee, through my stomach and around the twists and turns of my small and large intestines, to come shooting flamboyantly out into the splash pool, like under-demons cavorting at Hades’s water park. Seriously, they make so much noise that several times Ian has asked, with decreasing incredulity as the days go by, if that noise is in my belly.

As I was already at the clinic this morning for the nutritionist (at 8:00am!), I spoke with my nurse (well, her Monday fill-in), and Dr Specht told me (via the nurse) to take two nights off from pills (OH THE RELIEF), and she let me get my blood drawn. This way, when I have my meeting with her on Thursday to talk about how the Lapatinib is going (“Not so well,” I might say, or “somewhat poorly,” or maybe even “THIS IS THE WORST THING EVER.”), we’ll also have access to my new (and hopefully improved) tumor marker scores.

Okay, folks, I’ve just finished a supper of Campbell’s Condensed Chicken Noodle Soup (the full-salt kind—nectar of the gods!) and toast, and I am, as is my wont this past week, exhausted, so I’m off to bed.

I will keep you posted. Never fear.

Codependent

2011-08-24T20:59:00.000-07:00

In my ongoing quest for understanding of, reasons for, and therefore relief about (and maybe even from), my cancer, I do my best to ask myself, and occasionally other good thinkers around me, “interesting questions.” In fine Liberal Arts fashion, my college, Lewis and Clark in Portland, Oregon, required all incoming freshman to take a class called Basic Inquiry (BI). I don’t remember much about BI except that the entire freshman class read Beloved by Toni Morrison, which was definitely a book unlike others I had read. Did it teach me the basics of questioning? I don’t know for sure, but I think college ultimately did—at least, for the physical, human world. Cancer, on the other hand, is increasingly teaching me how to imagine the right questions to ask to gain information and understanding about the much more nebulous energetic and spiritual worlds. Starting with: is there such a thing? Yes.

A couple nights ago my friend Chiara (visiting from Wellington, where she now lives) and I were sitting up late, discussing relationships of all kinds, and I said “what if I think about my cancer as a bad boyfriend? My relationship with it has certainly been long—over twelve years—and has definitely had its ups and downs.”

“Girl,” said Chiara, or something like it, “this is one dysfunctional relationship, but yeah, I can totally see that.”

So, okay, Bad Boyfriend, but I stick with the relationship because 1) there is some benefit to me and 2) it’s known, the cancer, and there’s comfort even in that--the unknown is scary--and 3) maybe, also, there's even a little bit of inertia?

I have recently been led toward various forms, or maybe just shown directions, for spiritual healing as well as physical healing, and I’ve been experiencing an untenable amount of distress, angst, yearning, desire, frustration, sorrow, and almost debilitating indecision about what I am supposed to do with these options.

The one which has triggered the most frantic cogitation is an energetic/spiritual healer who is also a medium, and who can, I am led to understand, talk with Guides and Guardian Angels, clear “predatory” energy from people, and explain to them the whys and wherefores of their diseases/ailments/purposes here on earth (once he’s cleared the energy and given you some information, it’s up to you to make the necessary changes in your life for the clearances to stick). He wrote a book, primarily dictated by his Guides, that I’ve read since hearing about him, and much of what he shares in the book are ideas that I’ve either heard elsewhere over the last few years, or that I’ve discovered for myself in my own personal soul searches via the I Ching and Tarot.

This sounds crazy to some of you.

So what?

Anyway, one of the things that came up in my conversation with Chiara was the idea of a cheat code. She used it in reference to several men she’s spoken to through the years who have found it difficult to partner with women, and who would really like to skip all the Levels 1-7 challenges and get right into a stable relationship. What, Chiara asks them, does this mean for the value of the relationship, though? Will it be so meaningful if you don’t have to go through all the steps? Can you gain a true Nirvana without the discomfort, unknowing, and (perhaps, at least in my case here) self-flagellation?

“Exactly!” I said. “I am wondering if this spiritual healer is the next step on my path, or a cheat code offered to tempt me OFF my path! Maybe I need to learn healing energy myself for it to be effective! Maybe if I call this guy, I won’t be able to achieve that! But then again, maybe he’s supposed to be my teacher!”

“Your problem, Calin, from what I can see,” said Chiara, “is that you really don’t think enough. Maybe you should do some work on some big questions.”

I mean, the promise—even the suggestion of a promise—that I could, truly, be done with this relationship/job/stretch of Life’s Journey, and move on to something else, is mouthwateringly tantalizing. And yet, something has been holding me back, cautioning me to wait, to think, to feel, to take my time. I have—more than once—consulted the I Ching and the Tarot about contacting this healer and they have been unignorably clear: your ego is in the way of you making the right decision.

There’s a lot about Ego—capital E—in the literature about Enlightenment (capital E). Or rather, there is one repeating theme: Ego is necessary for the survival of the finite, fragile, flesh-and-blood human body; but it can easily grow out of control. An out-of-control Ego cuts off access from the Universal/Divine/Absolute energy that is needed to feed, foster and facilitate the education of the Infinite Soul. I.e., if I allow myself to grasp madly after any fluttering wisp of potential cure, or wallow in sorrow for myself and my troubles, then all I am doing is feeding the ravening beast of my Ego, and I’m unable to hear or see or accept the true healing available to me all the time.

I have, consciously, for several years now, been doing work to recognize when Ego has wrested too much control from the Whole Self. I try to be aware of and disarm judgment against others and, much more difficult, against myself. I try to remember to be grateful for the truly glorious gifts of my life, rather than feel that I deserve them, or have somehow earned them by having the challenges that I have had. We all have challenges and we all have gifts and to a large extent, how happy and fulfilled we feel is not at all based on the specifics of those things, but merely how we interpret them.

Something more subtle from the Ego, though, than judgment or entitlement, appeared sharply in my consciousness when I recently reconsidered my cancer relationship and what it has done for me lately.

Cancer has given me a crutch to lean on and bandy about in people’s faces. It has given me an excuse—easy to legitimize, but nevertheless an excuse—for not following through with any of the more lengthy or complicated side roads that I really might like to travel but am somewhat afraid of (note: my recent admission into the editing program at the UW is a first step along one of those roads). In other words, believe it or not, it has allowed me to be lazy. Or, if you don’t buy lazy per se, it has allowed me to be distractible. This same excuse keeps me from having to step out into the unknown—for all its frustrations and difficulties, cancer is, for the most part by now, also mind-dullingly familiar.

Cancer has also given my Ego pretty much endless rich, plummy, treacly shovels full of flattering sustenance:

“You’re so strong,” people will say to me. Or “you’re my miracle patient!” Or “how do you do this? Since WHEN? REALLY???” or “You,” from my mother, “are an ANGEL.”

I’m not an angel, I’m not a miracle, I may be strong but so are most people, and I’ve been doing this because it’s been in front of me, demanding my attention.

And along the way, I may have gotten into a bit of a relationship rut.

I did a visualization of my Ego yesterday afternoon, after a horrendous morning where all my worst fears about Lapatinib came true, barring the actual need (it had only been one dose so I wasn’t entirely desiccated) to go to the clinic for IV fluids. I went to an already-scheduled appointment with Witch Doctor Dan, who was able to desensitize my body to the drug somewhat (today has been much more comfortable). Back at home, after lunch and an electrolyte drink, I did a Tarot reading (Outcome: Confusion) and an I Ching reading (Acceptance of trouble, laying aside of Ego) and then, exhausted from my day, my week, my month(s), lay back on the couch to have a nap. Before I let myself drift into sleep, though, I pictured my Ego, so that I could get an idea of how to clear it out a bit.

The immediate image: a small, coal-black demon-like cat in the middle of my brain, claws and sharp, pointy fangs clinging to the top of my Kundalini (the energetic cord that, when uncoiled from the base of the spine, connects all the chakras to Universal energy through the Crown chakra at the top of the head), blocking most of the sacred energy that was attempting to filter down through my body. Okay, well, I’ve done lots of nail trimmings around here with these two dogs, and so in my mind I got out my clippers and I snipped each of the toenails on all four of the feet until the demon-cat was swinging in the increased flow of golden light, still clinging, but more desperately, by the teeth. I then procured a really rough emery board of sorts and proceeded to sand off the teeth, one by one, until the little black thing had nothing left with which to cling and was flushed in the roar of light down through my body and out into the ground to be cleansed. I slept, and when I awoke, curled in my brain, napping in a gentle glow, was a little, gray stripy kitten, and I felt refreshed, rested, and calm.

I called the healer.

The Not-So-Traditional 10th Anniversary Gift

2011-08-18T15:10:00.000-07:00

Today is Ian’s and my tenth anniversary. We have been in the habit, over the last decade, of buying a joint gift together, following (loosely, based on mutually agreed upon interpretation) the “traditional” anniversary gifts, as set out in my Graphic Image paper calendar. We derailed a bit at the fifth (Wood or Clocks), because we decided we wanted a handmade wood music stand, made by this man, who is only in Coeur d’Alene, so you’d think we could’ve found our way up there to see his work (which we’d like to do, because Ian is a novice woodworker himself), but we haven’t. And it’s been five years, or HALF of our marriage. Three (Leather) was the biggest stretch . . . we were in Greece, and saw a glass and bronze fish in an art gallery . . . a gallery and fish that I’d seen twice before on other visits . . . and we decided that fish had skin, and skin sometimes became leather, and this was a fish (and we wanted it), so, why not? For the oh-so-traditional Electrical Appliances (eighth—the stretch here being the reach of tradition, not how we interpreted it), we upgraded our stick blender from a corded to a cordless, and in the winter, I do enjoy crafting the occasional pureed soup.

This year’s Tin or Aluminum was actually pretty easy for us to justify—we gave airline miles to our dear friends in Austin since who would want to visit there in August—and they’re arriving this evening (winter clothes in their checked luggage), on an AIRPLANE, which is mostly ALUMINUM. I think pretty much everyone can get on board with that.

This morning, however, I did get, as a non-traditional celebratory toast, my second new dose of Navelbine, which meant I was in the clinic from 10:15 to 1:15 (it’s still not clear that my insurance company is going to pay for these doses, let alone future ones, but there’s now an almost-two-week window to work that out before I’m next due in). I also received my latest tumor marker score . . . 81.

The volatile cancers are supposed to be volatile both directions (up they race, and SMASH!!! they’re brought down), and I know I can feel the drug pumping through my body, into and out of my affected bones. Also, that score was from BEFORE I began the Navelbine last week, so it’s probably already lower. And even if the insurance company doesn’t pay for these last two weeks (+/- $1000, I’m guessing), it seems to be worth it for us to carry the cost. Still, this is turning out to be a day pretty representational of my life—and Ian’s life—throughout our marriage. Deep and soaring joys, intertwined with gnawing fear and keening heartache.

This last weekend on Orcas Island (we managed to get the siding boards up, but not the battens, and certainly no paint, but we worked virtually NON-STOP), Sunday afternoon came around and I had to lie down. I went into the dacha and lay on our sleeping mats (stacked together for extra cushiness), gazed out at the brilliant sun and cotton-ball clouds, and felt sorry for myself, for needing a rest, for having to take these drugs, for inflicting this on my husband. He did not sign up for this, I thought to myself, winking aside tears. And then my practical self broke in and stopped the melodramatic reverie.

He DID sign up for this. He knew about my cancer past before he asked me to marry him. The summer of our wedding, I had a recurrence and was undergoing chemotherapy treatments EVERY WEEK. Ian would come to the clinic with me, and lie on my bed next to me, and nap while I planned our wedding. Ian is DEEPLY involved in this, and has been from the start. My mom is right; he IS an angel.

In the car on the way home from Orcas, I told Ian about my musings while I was lying flat, and he said “Yes, that IS what I signed up for—you taking a break occasionally so that we can relax!”

He’s a good man. Happy Anniversary to me.

Cover Letter

2011-08-16T22:44:00.000-07:00

Certificate Program in Editing
UW Professional & Continuing Education
Seattle, Washington

To the Director of Admissions:

I was six when I first chose a chapter book for myself. I picked Emily’s Runaway Imagination, by Beverly Cleary, and I have been reading voraciously—and unstintingly criticizing writing—ever since.

Although I studied Sociology and Anthropology in college to avoid being Just Like My English Teacher Mother, the A’s I earned were in my English classes, and in the post-graduation-now-what-do-I-do-with-myself phase, I continued studying language arts in the mornings as I worked retail in the afternoons.

I found a good fit as a master’s student in Linguistics: language, but deconstructed, described, discussed. My thesis on ostensible compliments was in the Discourse Analysis sub-field, which views words, contexts and shared perceptions as a whole to explain how meaning is created—valuable knowledge for an editor.

While acquiring my MA I also acquired, 12 years ago at age 26, breast cancer, and the ongoing challenges of living with a serious disease have yielded rich fodder for my blog, I Thought I Was Done With This.

My cancer requires particular attention and management, so traditional work has been difficult to pursue. My part-time internship at Seattle Magazine, though, and my later memoir editing projects, offered me a taste of an attainable fulfilling and flexible professional pursuit.

I am ready to hone and legitimize my latent skills and long-term editorial interests, and hope to do so in your program.

Thank you,

Calin Taylor

Hey all y'all readers--I'm gonna have a career to go along with my fine living-with-cancer job! I've been kicking around the idea of editing for a long, long time. I notice language, and revel in using it, and am particular about the prose I'm willing to spend my time reading. I enjoyed the editorial internship I had at Seattle Magazine lo these many years ago, and really got a kick out of telling my mother where to get off with her memoirs. Even digging through Ian's ponderous academic/scientific articles yields nuggets of smug satisfaction, because even with his brilliant mind, he occasionally misplaces his clauses (mostly when he's been cutting and pasting a lot).

I know my own writing isn't perfect either (I occasionally publish a blog post 3 or 4 times in a row because I've had to fix something once I've read it in situ), and this certificate program at the UW will help me with that as well.

At any rate, last week I decided to apply, and this morning I was accepted and I paid for my first quarter! Classes are Wednesday evenings starting in October.

Fun!

In the Thick of it Again

2011-08-12T09:58:00.000-07:00

The good news is that my PET scan showed no cancer activity in soft tissues—my lungs were fine, my liver was fine, my heart (well, hearts never get cancer—isn’t that interesting?) was fine, my kidneys were fine, my guts were fine. So, all the organs that will help me process the new regimen designed to clear my skeleton of multiple new metastatic lesions are in good working order. Yes, hidden in that ponderous sentence was the new diagnosis from the PET/CT: my bones are exceedingly cancer-attractive right now.

I have not noticed any bone pain myself, so that’s good, but I have measurable activity in many of my vertebrae, both scapulae, some ribs, and particularly in the top of my left femur, right where old people often break their hips. So, don’t beat on me—I’m fragile. And also, I’ll kick your office-dwelling ass.

Dr Specht reported a small part of her conversation with Dr Jason about me, after the PET scan came in: “She’s not going to stop riding YOUR horses,” she said accusingly to him. Yep, that’s right, I’m not. In fact, I have a jump lesson today, and I’m very excited about it—it’s the first jump lesson since June! Besides that, or presumably because of that, my legs and, particularly, all the small muscles around my hips, are exceedingly strong right now. My body has spent the last several months priming itself to protect a porous skeletal system until it can be healed. Again.

But back to the other—well, another—side of me. My insurance company has, of course, been slowly learning—no, that’s not right—has been hit over the head with a brick of knowledge (otherwise known as my two-foot-tall-stack of medical charts)—that I am an expensive keeper. Their attempts to mitigate my costs have been unsuccessful so far, and I have confidence that my doctors and I will continue to prevail. We’re definitely having to work for it, however, and while I understand that I should have to spend some hours managing my care and cajoling recalcitrant benefactors, I find it maddening that Dr Specht, who has many more lives to save than mine, has had to spend her own precious time in Byzantium.

And at the moment, the drug they are hesitating on is the cheapest one—Navelbine—an infusible chemotherapy that takes a mere 20 minutes and costs about $300. The drawback for me is that it’s a two-week-on, one-week-off sort of drug, so I’ll have to double my clinic visits for the time being . . . but for 20 minutes (read, in reality 40) . . . I can sit in a chair on those weeks. Anyway, I went ahead and started the Navelbine last night (Ian and I can pay for that one once if they don’t cover it retroactively), and I could SWEAR that I felt it getting into some of the larger bone patches. And the Lapatinib is creeping its slow way through the back office of the mail order pharmacy and will, at some point, arrive on my doorstep. More about it when it makes its appearance.

This weekend: back to Orcas, to side and paint (we’re optimists) the Dacha!

Roller Coaster Ride

2011-08-03T12:49:00.001-07:00

I’m back in town for a few weeks, just in time to catch what appears, finally, to be a real Northwest Summer, complete with sun and warmth and lots of really, really bad drivers on the roads—i.e. plenty of opportunity for me to redirect the continuing flow of frustration and anger and disappointment that comes along with this cancer carnival ride I’m still on.

If you’ve been following along in Dilettante Traveler, you will have noticed that I’ve been very busy living and not spending so much time in clinics these days . . . well, that’s been true—the living part—but during the 19 days that I have been in Seattle since 13 June, 11 of those have included some form of medical treatment/preparation/test/infusion, varying in intensity from racing home to retrieve expensive ($50k/year) medication from the front porch, to walking around for several hours with one eye dilated, to Witch Doctory, to crawling out of bed at 6:00am after four days of no exercise (the last two enforced by a new PET/CT prep protocol) and 12 hours of fasting, to go be injected with radioactive glucose and drink down a liter and a half of barium sulfate, berry flavored. I asked if they had a simple “no flavor” one, but no. If I were just getting a CT, “water flavored” is possible, but since the CT part of the PET/CT happens a couple hours after I’ve imbibed the contrast, it has to be barium, which sticks around longer, and it has to be Berry. I cross my fingers and hope that my friend L never has to have a PET/CT. She is not a big fan of berry flavoring. My guts are growling and squeaking at me as I type this.

From the above rant, you can probably guess what I was doing this morning. Yep, PET/CT.

During the three days in July that I was home between Idaho and the San Juans, I had medical stuff every day, and it was all more proof that I need to have those medical stuff days, that, in fact, they are still necessary to allow me to have the glorious, feral days in Idaho, or the beautiful, reminiscent ones in the San Juans.

My MRI on 20 July showed a tiny new spot off in a new place in my brain, not big enough to notice from the inside by me, or, indeed, from the scan by the radiologists who read it and declared it stable. Eagle-eyed Dr Jason, however, did notice it, and went back to May’s scan and saw the faint shadow of its beginning there, and decided that now—with three, maybe four teeny spots visible—might be a good time to talk about my next Gamma Knife procedure, to happen sometime this fall, working around my travel schedule (see, it’s good to catch these things early enough to work the cancer around the travel schedule, instead of vice versa). Nurse Sarah brought in my latest tumor marker scores to get as much evidence as possible about the below-the-neck disease, and my score had jumped from 39 (slightly high) to 52 (slightly higher). Huh.

On 21 July I saw Dr Specht (she had chatted with Dr Jason the afternoon before) and she told me of my proposed regimen change, which would begin after the San Juans trip, and after the next PET/CT. No more Xeloda, the hyper-expensive drug I take at home; instead, back to Navelbine for a bit, which is an infused chemotherapy (low side-effects to the body; higher side-effects to the schedule); and, finally, the dreaded and much put off Lapatinib. Lapatinib is somewhat like Herceptin, from what I understand, working with the body to form antibodies against HER2Neu-receptive cancers, and it’s something I take at home, but it’s also very expensive and, the clincher for me, has pretty extreme gastrointestinal side-effects, occasionally causing a patient to need infused fluids to make up for all the water lost through violent diarrhea. Doesn’t that sound like a fun affliction to take horseback riding.

I won’t get any results from the PET/CT until next Thursday’s appointment with Dr Specht, and on that day I’ll probably resume Navelbine with my Herceptin infusion, and probably begin taking Lapatinib as soon as the insurance company can be wheedled into sending it on to me.

It was better, in July, easier, getting the MRI results and the blood test results after having such an experience of freedom in Jerome Creek; but I still want, desperately want, to be done with all this. This job, it sucks. I’d like to change careers, please. Maybe be a veterinarian, or a park ranger. Saw down trees legitimately, blaze trails others will use—literally, not figuratively anymore. Now that would be fun.

Overcompensation

2011-07-05T10:43:00.000-07:00

Ian and I had a lovely 4^th of July holiday weekend this past weekend. We went down to Portland on Saturday to visit dear friend L (who helped us on the dacha over Memorial Day Weekend), stopping in Lacey to check in with T&A and their kids C&E. In Portland we met up with L&S at L’s, and the five us of proceeded to have quite the 90’s revival weekend. We supped Saturday evening at Chez José, the first restaurant I remember going to once I’d left home at 17; breakfasted at the original Original Pancake House on Barbur Blvd; enjoyed ridiculously lavish Royal Feet massages at The Barefoot Sage and then snacks and naps or floor repair back at L’s; and finished off with mouthwatering jambalaya at Montage under the Morrison Bridge (I ate at Montage when it was still in a small garage somewhere up on Belmont, I think) and the Rimsky-Korsakoffee House for dessert.

It was the end of my two-weeks-on Xeloda cycle, and various things take over my body at such a time, including increased (but still pretty minimal) nausea, and occasional bowel disorders. In the case of this particular weekend, I seemed to be doomed to carry around my waste with me, my guts getting heavier and heavier, my lower abs bulgier and bulgier, as time went on and more and more deliciously reminisceable foods were enjoyed (there were good reasons for frequenting the above listed eateries).

I tried my best to take in things that would help clear the spillways—I drank a lot of water, and ate buckets of cherries, sipped lots of milky coffee, and worried that the rice with the jambalaya wasn’t, in fact, such a good choice (rice can be very damming). I kept having false alarms, but as they were happening later and later in the day (and once in the middle of the night) I didn’t really hold out much hope. I am on a morning schedule, when the trains are running.

As it turned out, I awoke raring to go at 10:30am yesterday morning, and gleefully left the bathroom after my morning ablutions 2 ½ pounds lighter. A couple more well-timed deposits left me on top of the world, as it were, by bedtime last night.

This morning, unfortunately, the evidently over-generous buckets of cherries and milky coffee caught up with me (ameliorated not at all by Sunday evening’s spicy rice), and I’ll be sticking close to home slightly longer than previously expected before beginning the 6-hour drive back to Idaho and my Wilderness Bliss.

There are certainly complicated ins and outs to this health-wellness-life-management job I have.

Delayed Gratification

2011-07-01T10:56:00.001-07:00

The last several days I have been feeling like I would very much benefit from joining CJ in prison, just so I, too, could get a rest. I, of course, don’t have time this morning to go into any great detail about what’s been happening around here in the last ten days, but I’ll give a brief rundown.

· MS is recovering nicely and, while she’s accompanying me to Idaho again on the 5^th, she won’t be riding at all until later in July back in Woodinville. She will be in Idaho merely to hike and sunbathe and relax with dogs.
· My own riding lessons have been advancing at a new pace—or maybe, I leapt up (ha ha) to a new level recently and now I am continuing to advance at my slow pace but over the higher jumps and with more of them in a row. Very exciting!
· Starting tomorrow I will be essentially away from Seattle for the month, except for three days near the end of July where I will have 1. an MRI and follow-up visit and then my legs sugared (starting at 6:30am, this day will be); 2. a visit to Dr Specht and a blood draw and Herceptin, so, several hours at the SCCA, followed by a massage; and 3. an eye doctor appointment where probably I will get only my right eye dilated—to see how it’s recovering from the needle—then I will be driving out to Maple Valley to drop dogs and pick up our boat trailer, because on day 4 we will be up early-early to haul out the boat and drive up to Orcas Island to begin our week-long San Juans vacation.
· Yesterday was my first post-bed/chair-issue-resolving infusion and I arrived just before 7:30 and without having to say anything they gave me a lovely bed in the new wing with a memory foam mattress AND a door that closed all the way. Bliss. Of course, my next one will be mid-morning after the doctor visit, so, fingers crossed, but I don’t hold out too much hope. Still, most of them should follow the new plan.
· We helped a friend move and had a small gathering to warm our new deck, and, perhaps most significantly,
· We decided to delay building on Orcas for about five years.

There are several reasons why we made this decision, although it seemed to take me only about 3 hours and one dog walk to do all the mulling. In part, I recently received back a huge loan that I had made, and our money managers recommended that, if we wanted to use it in the next year or two, we manage it ourselves in a money market account (i.e. stash it in a couple banks) so that its value wouldn’t decrease. We thought it was generous of them to suggest taking funds away from them, but nevertheless, I don’t want to be in charge of it myself, even in something so mundane as a short-term CD.

Also, we had meetings set up to get the final plans from the architect, then talk to Big Todd to figure out how we could cut costs . . . and we don’t want to cut costs. We don’t, for example, want vinyl windows or composite roof shingles or all oak floors. But as it was looking, if we didn’t cut costs, we would have no income left from my investments . . . because I would have no investments left. So . . . no more travel. No more leg-hair-pulling. No more expensive organic food, unless I grew it myself which, to be honest, I’m not that interested in doing. And perhaps the biggest yet—I would be tied to my own farm, and therefore not able to take care of K&A’s farm, and most specifically, Shadow, my favorite horse.

Shadow is already 26 years old, which is ripe old dame-hood in the horse world, and it’s unlikely she’ll have more than 5 rideable years left. And K&A themselves are entering their 70s and may not have more than 5 years left of needing the kind of house/horse-sitting I can offer. And I want to go to Bhutan and Antarctica.

So, with five years to work with, the money managers will reinvest my chunk of change, our Wallingford house will presumably continue to appreciate in value (or RE-appreciate), my golden years of sawing and riding my way through the Clearwater National Forest will likely run out, I will add a couple more interesting stamps to my passport, Ian will continue to build contacts and skills with his fish math, and maybe the Feds will even agree on a Universal Health Plan.

We’ll continue to work on comfortizing the dacha (better place to camp than a tent, I say!) and taking good care of the Wallingford house; and the next several years will continue on more or less as the last few have.

More Tying Up Of More Ends

2011-06-16T16:03:00.001-07:00

Since it's pouring down rain at the moment and I'm 38, not 28, and I've never liked being inappropriately wet, I'm going to write in my blog instead of taking Shadow out for her first ride of the season. Weather report claims that tomorrow will be sunnier; Shadow—that crest of chunk you're building up along your mane? We're going to start getting after that tomorrow.

At my last stop yesterday afternoon, the Conoco station at the junction of 26 and 395 (I bought a Coke Zero which I hadn't had before—note—I think it tastes like artificial sweetener—and Gardettos Select Premium Rye Crisps or whatever they are, which are so crunchy my vision judders when I chew them), I received an email on my phone from my scheduler at the SCCA (my phone is now only functioning as a clock, which is quite useful, and a camera, which is less so). A solution has been found for my bed situation! Starting with my next infusion and continuing on, my appointments will be at 7:30am, first of the day; they will be scheduled for 2 hours; and there will be a note in my file saying that I need a bed. I was relieved, pleased, and . . . abashed.

I've been very good at asking for what I need for my physical health—confident and secure that my requests are reasonable and appropriate . . . but really not good at asking for what I need for my physical comfort, maybe because comfort seems so luxurious? And this cancer path is supposed to lack luxury? Besides, who am I to say that my comfort is more important than someone else's? And when someone (or at least three someones) take time to figure out a way for me to be comfortable, well, I'm very glad, and I'm going to enjoy the bed, but I also feel beholden. And these people were simply doing their jobs. I don't want to dwell on it too much, but it made me think: if I, who grew up pretty indulged and very well taken care of, feel guilt requesting and receiving simple gifts—which may not even seem like gifts to anyone else—how might people feel who didn't grow up learning how to accept gifts? It might be, psychologically, a very difficult thing to be welcomed into a new environment and lavished with care and attention and belongings and relationships and, yes, expectations for response, if you weren't used to it.

I hadn't talked about this at all before, so it will just be two loose ends tied together—I recently received in the mail some recall notice from Toyota about my accelerator pedal and driver's floor mat. I skimmed the letter because I wasn't at all concerned about it, and read only that the floor mat, if wrong or not installed correctly, could get in the way of the pedals. Well, I'm pretty sure it's installed correctly. Anyway, I swung by Toyota of Seattle when I was in getting my hair cut recently, to have them check the floor mat so that I wouldn't have to make an appointment, and the guy told me that if I received a letter, it meant I needed to get my accelerator pedal replaced, and that I was at risk of it sticking and driving me into a brick wall or whatever if I didn't. That was two weekends ago, and I haven't had a chance to take the 4-Runner in for care. So, instead, I've been thinking about what I would do if my accelerator pedal did stick. I thought about this a lot on my 6-hour drive over here yesterday. In all the histrionics about these sticking pedals, I cannot remember a single suggestion of what to do if you find yourself barreling down a busy freeway (or winding country road), unable to slow down.

The first thing I would do, on my way to turning on my hazards, is turn the engine off. I would then hit my hazards and coast, as quickly and safely as possible, to the side of the road. I would then put the car in neutral or park, and turn it on again to see if the engine started racing, or if everything was back to normal. Depending on the outcome of that test, and whether or not I had a cell phone signal, I would choose my path. I thought about it the most when I was punching the accelerator to pass someone going under the speed limit, about 3 times—since I really did set my cruise control at the appropriate speed and stick with it—and, I will say, 4-Runner comported itself very well and got a respectable 24.3 miles per gallon on the way over, and performed no shenanigans trying to run away with me.

And here I am in Idaho!

Tying Off the Current Loose Ends

2011-06-14T14:11:00.001-07:00

Let's see . . .

Beds in the Infusion Room: I have a call in to Dr Specht's nurse at the Seattle Cancer Care Alliance, and she is going to be looking into what I have to do to have a bed, every time I have an infusion. Do I need to switch days? Go at the last minute in the evening? Switch weeks so my three-week cycle is a different three-week cycle? Go early in the morning, but have a permanent note in my file that says I get a bed? My initial scheduler, who picks the day and puts me into the system, DOES, it turns out, have the ability to change my preferences from the automatic 30-minute Herceptin infusion to my 90-minute one, and she forgot this last time. However, that was obviously not the only element at play last week. Also, I asked the Occult why this chair/bed issue was SO difficult for me, and it said that I have a tendency to worry so much about other people's comfort over my own that I occasionally do myself injury (psychological in this case, but real nonetheless). I had been desperately hoping someone else would just grant me Full-Time Bed Privileges, but I have to learn to FIGHT. for my RIGHT. to infuse comfortably—and I do have that right. My bed is out there; and it will be found.

Needle to the Eyeball Part II: I had my one-week check-up this morning where my right eye alone got to be dilated—the one-off dilation, with its attendant nausea and equilibrium issues always being a joy to experience. I spent about an hour in the waiting room after the drop was administered, bored because the video is still truncated, and also it REALLY doesn't work to try and read or do any other close work when only one eye can see it—very discombobulating. But I was actually happy to be bored, as I haven't had much of a chance to just sit and stare at varyingly focused nothing in several weeks. And—YAY—the fluid pocket has already shrunk a little, and I have had one set of eyedrops removed from my regimen, so I only have to administer a total of three drops per day now! I think I can handle that . . .

Fasting Blood Test Results: My HDL and LDL were both where they should be (I can't find the paper where I wrote down the numbers—because it was a scrap of newspaper and therefore tidied away when we had last-minute dinner guests last night—and the official letter hasn't arrived yet), and my triglycerides were slightly high (damn that all-fat diet), but no one is worried about them because I am in such good physical condition. I, too, am not worried about them. My fasting glucose was normal. My Vitamin D was actually quite high after supplementing for several months—84 (that's the D-level, not the number of months)—and so for the moment I'm stopping all supplementation except for Nature's Supplementation (i.e. the Sun, should it choose to appear).

Old Blogs: It turned out Ian had created Orcas Estate and had given me permission to post, but THAT WAS ALL. SERIOUS ERROR IN JUDGMENT, IAN. Anyway, I now have full permissions to do whatever I want with the Orcas Estate blog.

Microsoft Word and its foibles: Word shut down on me again at the very beginning of this post today, and, for the first time ever, offered me a little pop-up window asking if I would like to have Microsoft run some diagnostics and see if it could fix the problem, as it had noticed that Office was shutting down somewhat frequently. I said "yes," even though, to my knowledge, Microsoft diagnostics had not ever even found problems, let alone fixed them. Well, lo and behold, a problem was evidently found, and something behind the scenes was claimed to have been done to fix it! Maybe so, maybe so . . .

The Boat: is in full vigor, raring to go. If only the weather and the schedules would cooperate.

Tomorrow: Off to Idaho and Jerome Creek for the first of several summer weeks! Dog and girl (okay, fine, I'm middle-aged now—WOMAN) heaven!

Blessing in Disguise

2011-06-10T20:59:00.001-07:00

I had an absolutely awesome riding lesson this afternoon on my dear friend Gjinger, who was in a bit of an irascible mood, which only made me look all the better when she tried to buck me off every single time I asked her to canter and I didn't go off, and when she tried various tricks at the jumps to avoid going over them—even though she loves going over them—and I had the force of will to make her go over, every single time. Teri was very proud of me, particularly because I was doing a nine-jump pattern AND they were the HIGHEST JUMPS I've been over yet! Which means that a few were two feet tall, a couple were just under, and one was two feet four inches, in other words, up to my mid-thigh. AWESOME (and also, still, WAY below Olympic-level jumps).

Just after I turned out of the driveway and hit the road on my way home, though, I realized I was beginning to have a migraine. I could still see almost perfectly well, but I had a flash of anxiety and so I pulled into the local Shell station where Susan and I often stop for coffee (she was not with me today; she's in Mexico) and parked the car out of the way by a grass berm. I checked for more visual cues and they were scant, but I was pretty sure that would be changing anon. Without further ado I popped ½ a Clonazepam (the anti-anxiety med), and called Ian to let him know what was up.

There's no way it would've been convenient for Ian to come and get me and the dogs and the car out there, at 4:00pm on a Friday afternoon, and I told him I didn't think he would have to. I know the new and improved cycle of my migraines, and I thought it would be worthwhile to sit this one out and see what happened. "In fact," I told him, "I really think this is the perfect opportunity for me to see how I respond to a migraine when I'm on my own, you know, before I drive to Idaho next week."

I sat as my vision became more kaleidoscopic and ate some lunch—pepperoni sticks, some hunks of swiss cheese, and an apple—I was in a rush when I left the house—and Ian called back about 30 minutes later.

"The vision is pretty much normal again," I reported, "and nothing else seems to be going on . . . I'm going to go into the store and use the bathroom, then probably hit the road. I'll call you before I drive away."

"Okay, good," said Ian. "And if you need to stop again, you just do it, and we'll figure out a way to get you and the car home."

The trip to the bathroom was successful in its primary purpose and also the secondary one of interacting with someone—the clerk, who was happy to have me park in his lot while partially blind, even if I didn't buy anything—and the tertiary one of seeing how stable I was on my feet (perfectly stable). I called Ian back.

"I'm going to hit the road," I said. "I think I'm fine. I'll call you when I get home."

And I did hit the road, and I was fine. I set the cruise control at 60 and drove conservatively in the right lane (WHAT?!? THAT DOESN'T SOUND FINE AT ALL!!!). My hand started its somewhat expected buzzing/numbness thing as I switched from 522 to 405, and completed its cycle from thumb to pinky by the time I reached 520, when my speed slowed to 20 minutes/mile before reaching the lake. I made it home safely and called Ian to report before getting out of the car.

What I had initially realized/discovered/thought—that this was the Universe telling me I would be okay if a migraine happened when I was alone—was true. I sensed it coming on long before I was visually incapacitated; I pulled over to a safe place; I fed myself and medicated myself; it passed as usual; I continued on with my life.

And I'm no longer worried about the next one.

Unprofessional

2011-06-09T15:46:00.001-07:00

This morning I was at the clinic when the doors opened, 7:00am, to have my fasting blood draws (glucose and lipids) done. It was already broad daylight, but still early enough that the express lanes were quite expressy as I raced across the Ship Canal Bridge, after a brief stop at Essential Baking to pick up my post-blooding breakfast. Yesterday a scheduler for the SCCA called me to set up the 7:00am Port Access, and was able to move my Herceptin infusion back from 8:30 to 7:30, so that I could open that department as well. This all struck me as quite a fine plan, as it would allow me to be back at home just a little after 10:30, or more or less the time I'm ready to start thinking about the day, anyway. It would be like an infusion in my sleep!

Having finally realized that one of the only things I truly hate about my position in life as a cancer patient—hate with a passion—is sitting in those awful, uncomfortable, noisy vinyl chairs, I was excited for my first bed-anxiety-free infusion appointment. After my last visit I had asked when to come in for a guaranteed bed and was told that things were pretty open before 9:00. Well,
7:30 is way before 9:00.

Nevertheless, when I checked in at 7:25 I said, "They'll just put me in a bed, right, getting in here this early?"

"Why?" asked the check-in lady, someone I didn't know from my afternoons. "Are you having a long infusion?"

"I'm getting Herceptin, which is scheduled to be over 30 minutes, but I get it over 90," I said. "It just feels wrong to do it in less time, so yeah, I'm here for at least a couple hours."

"Oh," the check-in woman said vaguely. "Well, I'll mark down that you'd like a bed."

"Thank you," I said, and took my pager over to a seat by the window, where I could look out at the unfamiliar sights of both early morning and sun glinting off of southern Lake Union.

The lady called me back by name a few minutes later (they instituted the pagers to maintain more privacy but I guess I didn't get that this morning), and sent me to bay 45.

There are 43 sequentially numbered beds.

I went into the back, past empty room after empty room, to the chairs, just to be sure. I took one look, and turned back to the area infusion desk, where nurses congregate between patients and where bay assignments are made.

"Hi," I said, smiling, to the nurse currently sitting behind the desk. I like the nurses. They're very nice, they like their jobs, they're friends with each other. It's a warm and supportive place, the infusion room, an oasis in the blinding, skin-scouring, howling sandstorm of terror and sadness and pain that is often the cancer experience. I think it would be a difficult job. These people do it very well. "I want a bed," I said. "I came here early so that I would not have to sit in those chairs anymore. I hate the chairs," I said.

She smiled. "Oh, I understand. That's the lady in charge," she said, and pointed to another woman, up on a stool at the dry-erase chart, figuring out which patient to give to which nurse in which location. It was a woman I recognized from sometimes working in the check-in desk; she always complimented my engagement ring, so I had thought she was quite a fine person.

"No, there's nothing," she said shortly, glancing over her shoulder at me. "I have several people coming in later this morning who will be in for 3 and 4 hours."

"Whoa," said a different nurse, who turned out to be in charge of me for the day, "how about 43 right here? I'm just going to put her in there."

"I have someone in contact isolation coming in. Where am I supposed to put her?"

I started hemming and hawing, my guilt kicking in, but my nurse (I'm sorry, I really can't remember any of their names right now) said "No, Calin, go into 43. It's fine. Go and get settled."

So I went into 43 and my nurse shut the curtain, then lowered her voice and admonished the scheduler lady. I couldn't hear what she said, but I could hear the response: "I'm just doing my job! I am JUST doing my JOB."

I feel badly enough already for the cancer patients who are not as lucky as me. I know that people in that infusion room are dying. I know that people there are divorcing. I know that some are deeply in debt. I know that some have other diseases (bay 43, however, with only a curtain closure, was functionally no better than an end chair bay for someone in contact isolation who, I overheard, was happy to have a chair. I was not that problem.). I am probably the healthiest patient to pass through that infusion room. Hell—I might be the healthiest person to pass through that clinic full stop. But I have been passing through that clinic and getting jabbed and poked and irradiated, having my stomach upset and my dignity abraded, FOR THE PAST TEN YEARS SINCE IT OPENED, AND IT IS SHOWING NO SIGNS OF STOPPING.

I WANT A BED.

Part of the problem is that the amount of time allocated to "Herceptin" in the first scheduler's worksheet, the one who reserves the date and time, is 30 minutes for the infusion, which implies a visit of roughly an hour to the infusion room. Granted, that doesn't appear to be very long. I, however, take my Herceptin over a more leisurely hour and a half, and all things being considered, I am usually in my bay for around three hours anyway. This morning I was just shy of that, and there hadn't been any time for delays to build up. The infusion room nurses know my preferences and they know why—when I receive Herceptin faster, it makes my heart feel slightly, indefinably oogy. Herceptin, over time, is cardiotoxic. So far, my heart has been up to the challenge. I wish to keep it that way. And so the infusion room nurses are happy to give me a bed and let me hang out as long as I want. They don't care what the schedule says—to them I am a human being, not a time-frame.

But I have yet to figure out how to have everyone along the way see me as a human being.

You Blink, and Next Thing You Know There’s a Needle in Your Eye

2011-06-08T23:33:00.001-07:00

I saw the ophthalmologist yesterday for my regular check-up which is, roughly, every four months. My right eye continues to be slightly troubling, with a cataract across the middle and fluid under the cornea. The fluid keeps building up from tiny, tiny (well, everything in the eye is tiny . . . I think I've written that before . . .) hemorrhages in the eyeball capillaries, and as I am absolutely worthless at keeping up with my fluid-reducing eyedrops (a total of 7 prescribed per day, from two different bottles, and I have to wait at least 2 minutes between drops . . . it's a math problem I've never even remotely worked out—I think I've had 7 drops maybe three days total), at best my eye has been stable and at worst, the fluid builds up more.

I like my ophthalmologist's office. The waiting room is full of the elderly (because you're supposed to be in your 80s when you develop eye-issues like mine, and it's 10:30am when I'm there, so you're supposed to be retired); there's free coffee (although I am usually still nursing my own from home); and there's a flat screen TV cycling through a series of vaguely disgusting informational videos about varyingly disgusting eye conditions and their remedies. The office is also the most efficient medical facility I have ever had the pleasure to be associated with. Which is to say, I actually experience pleasure when I'm there, simply because the efficiency is so satisfying to participate in.

Yesterday's visit had the added bonus of a small world encounter: Holly, one of the techs, and I were chatting about what I'd been doing lately, which was not going to someplace fabulous like Necker Island, but was assisting in deck replacement. "Oh, my grandfather needs his deck replaced—I was going to see about doing that this summer," she told me. "I fell through it last winter and really bruised my leg. He lives up in the San Juans, and it was really snowy for a little while this winter."

My ears perked at the mention of the San Juans.

"He's about 80," she went on, "and I've been warning him to be careful. We might need to get a barge to get the lumber out there, though," she mused.

"Oh!" I said. "He lives on one of the islands not on the ferry line! Which one?"

"Crane Island," Holly said dubiously. No one has ever heard of Crane Island.

"Your grandfather is not Tom Temple, is he?" I asked, pretty sure the answer was no, but having to ask all the same, as Tom is the brother of A in Idaho, of K&A, my third parents and owners of the Horse Paradise that I am lucky enough to take care of on occasion, and Tom lives on Crane Island (along with, it turns out, Holly's grandfather and two other families. Crane Island is a stone's throw off Orcas and very small).

"No," said Holly, "but I know Tom Temple! My grandpa's boat engine wasn't working once when we were up to visit and Tom ferried us across to Orcas in his boat!"

Yep, we nodded, it's a small world (and the more I learn about it, the more I think Tom Temple is at the center).

I went back out to the waiting room while my eyes dilated (which really messes up near seeing but doesn't get in the way of far seeing, so they let you drive recklessly away from your appointments) and learned about cataract surgery and astigmatism . . . over and over . . . the video seemed to be missing some of its sections yesterday . . . and then was called back into a treatment room. Dr Myers came in to look at my eyes—brisk, businesslike, but also, I've found, with a good sense of humor—and told me the fluid was a little worse than last time, and she'd like to try a steroid treatment again. Would I like to do it that day, or schedule it for another time? A brief vision of my calendar for the next two months flashed across my mind, wide swaths of time and days completely blacked out, as if the censors had gotten after a war-time letter full of army secrets with a jumbo Marks-A-Lot.

"Oh, let's do it today," I said.

"Okay," said Dr Myers. "I'll be back."

A different tech was in the room with me now, and suddenly I had a realization. "Wait a second," I said. "This is going to be another needle to the eyeball, isn't it."

"We like to call it a 'micro-injection'," she said.

"But that's really just a shot to the eyeball."

"Yep, it is," she said. We were both laughing about how utterly awful this sounds, and I reminisced about how you really can't close your eye when they're trying to put a needle in it, as I learned the last time. Men, she told me, pass out way more often than women, by the way, when their eyes get poked. "I'll go get a couple things ready and check with your insurance company and I'll be right back," she said, and zipped out of the room.

Within 3 minutes—not enough time to work up even a whiff of an anxiety attack—she and Dr Myers had both zipped back in, and within the blink of an eye—or rather, the much not-preferred non-blink of an eye—the steroid was injected and I was free to go, due back in a week (another swipe of the Marks-A-Lot) to make sure I haven't developed glaucoma.

I'm feeling just fine today, aside from the brief sting of the antibiotic drops that have been added to my regimen for 7 days (those I am being SURE to administer); and the dark floater that has been careening around my field of vision (I was told to expect this), occasionally causing me to bat at my head, trying to wave away non-existent gnats.

The cataract is actually smaller. I didn't know they could do that, and I'm happy to hear it.

Clarity of vision—that what this whole journey's about, right?

Metapost: Old Blogs

2011-06-07T09:33:00.000-07:00

So, in some weird literary Iron Woman event I yesterday posted three times, and one of the times was to Orcas Estate, which should've showed up in the sidebar of this blog. However, it appears that leaving a blog fallow for four years does not somehow render it richer and loamier, but rather more or less obsolete. I can still post there, but it's too old and un-updated to even update anymore, and it's certainly too old to allow I Thought I Was Done With This to drag any information out of it. What I'm saying is that, if you do click hopefully on the link today, you will see something newer than 4-year-old pears. When I have more time I'll look into other ways of updating Orcas Estate (maybe it needs some petrochemicals or "toxic sludge").

Laundry List of Non-Breast Cancer Woes, or Tales of a Newly-Minted Hypochondriac

2011-06-06T18:28:00.001-07:00

I saw my new internist this afternoon, and found out that, as she's a resident, she will be traveling to Boise in a couple weeks for a year's exchange program. You see, the Roosevelt Clinic where I went (so that I would not have to bring three truck loads of background information) is part of the University of Washington Medical Center, which means it is part of a medical school. Residents are pretty good by the time they let them see you on their own, though, so I was okay with this.

(grrrrrr. Word just f*$ked up again and lost at least half of my blisteringly hilarious prose. I'll try to muddle on, but I'm afraid you'll see it is a muddle. A middling muddle. At least for a liddle.)

It turns out that I was, however, very nervous about seeing this new doctor, and potentially opening a whole new can of Serious Worms. I took a whole extra half anti-anxiety pill, and much appreciated the bear hug from Cousin T (currently in the back yard finishing the spectacular new deck he's building for us—I got to help tear down the old one, WHICH ROCKED—I mean, the tearing down, although the deck itself was a little loosey-goosey too—but this birdwalk has gone on too long except to say SEE Word 2007? What have you done to me? COMPLETELY DESTROYED MY TRAIN OF THOUGHT!!!) on my way off. One nice thing about the Roosevelt Clinic is that it really is walking distance, and so I was able to enjoy the lovely, lovely day on my way there.

I went through a drawn-out check-in process, considering that I had been in that same building for a medical procedure less than a year ago, then sat in a weirdly high chair (seriously, I could swing my legs) in the waiting room and wrote my list of questions, from the head down, as follows:

Plugged left ear
Infected earring
Vertigo
Underarm fungus?
Thumb pain
Finger eczema
Vit D blood test
Fasting blood sugar
Cholesterol
Spots on calves.

When I was called back I first had to correct the pronunciation of my name (this has been standard procedure for me since I could talk—"It's like Calvin, minus the V"), then I got weighed (160 pounds of SOLID MUSCLE KICK-ASS) and had my blood pressure taken (116/69). No surprises on any of that, and then my doctor came in. She was very nice, Kim, and went through each item on my list.

She did a thorough examination of the inside of my left ear and saw nothing unusual (but it hurt a little to have someone poke around with that magnifying glass light thingy) and, indeed, I don't have any other signs of allergy or snot issues, but I thought maybe there was some connection to item 3.
The earring itself was not, of course, infected, but nor, she decided, was the hole into which it was stuck. "I see no sign of pus," she reported (Pus. Isn't that an ugly word?). After my last MRI I had had some difficulty putting my 4^th earring on the left side back in, and had mashed up the hole a little. Since then, for about two weeks, I have been unable to keep my hands off the stupid thing, and so it's simply not healed yet. STOP PICKING YOUR FACE, CALIN, OR I'LL PUT SOCKS ON YOUR HANDS (and she did, too, my mother, back when I was about five and had had a dog bite just under the eye).
The vertigo is really mostly gone, and is episodic anyway, and so yeah, whatever. Don't spend so many hours bent over on the floor, cutting out dress pieces.
It's most likely razor burn, she said, having seen no sign of anything else under my arms. "Get the hairs pulled," she suggested. "That will be much better." I don't know. Legs are one thing.
My thumb really didn't hurt at all today—it pulled a beater-Chevy-with-unidentifiable-knocking-sound-when-taken-to-the-shop-for-diagnosis game—and preserved a sullen silence. Yes, maybe someday it could turn into arthritis.
I forgot to ask about my fingers. Ian has the same thing (had it FIRST, and shared it with me), and we're dealing with it well enough I suppose, occasionally using Band-Aids and ointment for flare-ups.
Blood tests are ordered for Thursday morning when I have to be at the clinic at 8:30am and so can, conceivably, fast for items 8 and 9 (in part because I am often not out of bed before 8:30. My stomach is still asleep at 8:30).
See 7
See 7
The spots on my calves are small moles, one on each. I don't think I've always had these two—I think they appeared several years ago (like, more than seven)—and they haven't changed from what I can tell. I have moles all over my body, and always have. For a while in my yoot, maybe my tween years, I picked and picked* at a mole on my upper right arm until it bled—but it didn't go away. Today, it's probably the most dangerous-looking mole on my body, but it's been that way ever since I left it alone in about 1983. Kim saw absolutely nothing alarming on my leg moles, or on two darker but quite well-defined, small and round ones on my back. "Just watch them," she said, which was pretty much her advice for all of my, as it turned out, complete non-issues. And, really, no surprises on any of that, either.

I suppose there is some chance still for bad stuff to show up in my blood tests, and even though some of my lady parts are gone, most of them remain and so I need to schedule a woman's health screening for . . . sometime . . . probably this fall when I build up another large enough head of steam for any medical issue not breast cancer-related.

In the meantime, if I do ever have an actual illness utterly unrelated to breast cancer, I have established a relationship and a place to go. As this is likely to take another decade or so, Kim's year away will most likely have no impact on me whatsoever.

*My mother-in-law once went to a cocktail party where she met a man who was a psychiatrist (or psychologist, I'm not quite sure). She said "Oh! Can I ask you a question?" The man, looking exceedingly bored at the prospect, told her she could. "Why is it that we humans love picking at our scabs so much?" she blurted out, avid to know. I don't remember if the man had an answer, but he was VERY relieved to have had such a disgustingly non-standard question set to him.

Metapost: Posting

2011-06-06T11:29:00.001-07:00

So . . . I don't know what I was complaining about, lack of energy or whatever, because clearly I've been very busy lately which is the only excuse I have for not having posted in weeks.

In the outer physical world, I have been constructing and destructing, both at the current home and the future home (or, rather, DEstructing at this home and CONstructing at that one). I have been making an attempt to lie down in the afternoon every day more often than I used to, which cuts a bit into writing time . . . but mostly life has just been rushing me along at warp speed, particularly now that it's light much longer than it's dark up here in Seattle (and that's even more true on Orcas . . . which can be a bit of a drawback if you are camping in a more or less translucent tent, with the weekend plan of hard physical labor needing much rest.).

In the inner physical world, my last MRI was stable. One tumor marker blood test was also stable, but one had jumped . . . up, unfortunately, not down. We'll keep our eyes on the jumpy one, because it might just be a reaction to one of Witch Doctor Dan's suggestions (the tumor marker blood tests measure a protein in the blood that cancer cells give off—not the cancer cells themselves—and so there's always a possibility the protein is there for another reason). Dr Specht did offer to order me a PET/CT if I wanted it but . . . lovely berry-flavored, ointment-thick CT contrast drink notwithstanding, I decided to give it a miss for the time being.

In the mental world, I have been writing and rewriting post after post, but as mainstream technology has not, heretofore (THANK GOD), allowed our every thought to be spread about the interwebs without, at minimum, intervening thumbs, none of the posts have actually posted.

In the spiritual and emotional worlds, I am continuing assertively down my path, even when I don't want to go (sometimes you have to, you know).

And back here in the blogging world, I have made a subtle but, I think, useful change to my layout (many thanks to blogger for ease of use). At the top right side of home page, you will see a new section entitled "My Other Blogs", with a list of three other blogs below. As you can see, they cover different topics and tell you how recently I (or Ian, in the case of Spackle and Hoover and Orcas Estate) have posted, so you can see if anything's new on any of them without having to take the time and emotional energy to click hopefully through, only to have your wishes dashed when you see the same pears that have been sitting there at the top of the blog for the last four years (now that things are grinding slowly to a start on Orcas, I'm thinking that blog might see some more action).

I have also listed the blogs of a couple friends below that, and will list more/take those away as requested.

We were laughing in the barn last week that we were referring to the weather as "hot" when the temperature was about 65 degrees. But that WAS hot, and today is looking to be the same, if not hotter, and so I'm heading out to do some yard work.

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

2011-05-18T19:50:00.001-07:00

*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.

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

2011-05-17T21:56:00.001-07:00

(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 cybercafé 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.

Pictures from our Second Erection

2011-05-08T12:28:00.000-07:00

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.

Perspective

2011-05-07T15:46:00.001-07:00

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.

Twenty-six.

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.

Mama Liz's side

2011-04-29T14:12:00.000-07:00

Here I am with some cousins from my mom's side, on a recent weekend whiz trip that Mom and I took to SF. From left, Cousin Katie (daughter of Mom's oldest brother), Cousin Laura (also known as Same Socks Laura--daughter of Mom's first younger brother), Mom, and me (other, youngest brother not represented by any daughters in this picture, unfortunately).

Dad's Relatives and Me

2011-04-25T11:10:00.000-07:00

On the left is my Aunt Linda, Dad's older sister. She lives in Bangkok and is quite the world traveler (runs in the family, it would seem). In the middle is my one-week-from-being-96-years-old grandmother, who just had her knee replaced and is back living at home, on her own, in the house where my dad grew up. And there on the right, photoshopped in from a 1/3-times larger picture, is me.

Bad Dog

2011-04-21T10:47:00.001-07:00

This morning has been a slightly disheartening reminder of why people save money (note—I said "slightly". There's nothing major to worry about here. You can read on.), namely, to pay for problems that arise, unexpectedly, just when you're looking outside at the brilliant sun and thanking the powers that be for the (finally!) advent of spring. I have just realized, just now, that Ian and I in general do not lead too frivolous of lives. Sure, I've been suffocating in sweaters and we could build a second home entirely out of books (almost entirely out of books that don't fit on our shelves, even—that's the next level of discharge that we must engineer); but we don't really bandy about large wads of cash.

Except in the case of our boat.

You will remember that I grew up in a power boating family. We started with a ski boat, moved on to a 26-foot cabin cruiser, and ended with a 36-foot luxury yacht (by our standards, of course, not Paul Allen's). For several years, I didn't do much boating, but then I bought Ian's and my current home in Wallingford, a mere six blocks from a lovely lake. I yearned to have a boat—a power boat—to feel the speed, to sneak peeks into the backyards of the rich and famous, the weeping willows dipping into Lake Washington, and all the faded, curving fiberglass slides that no one ever used standing as sentinels on the ends of docks. More than that, though, I wanted to be able to take said boat and visit—quickly—other islands amongst the San Juans than just those four serviced by the ferries.

I yearned for years, but could never quite make the decision to buy a boat because I knew, from deepest childhood, the troubles that went along with the joys and I also knew that my father, the Mechanic, saved us countless hours of aimless, dangerous drifting and thousands of dollars of repair and maintenance costs. It is, in fact, very true that a pleasure boat can be defined as a hole in the water into which you pour money.

Anyway, when Ian and I subsequently did NOT move to New Zealand in late 2007 (subsequent to renting our house and selling our cars and spending four months flitting hither and thither about Europe and then living for three months in the lovely but small guest room of some dear friends—all mere months before beginning this blog), I declared that we would be buying a boat. If we were here, we were going to have access to all sorts of water.

So we did, and we have. We bought a Sea Ray because they have a good reputation and it is, in fact, a really fun, fast, stable boat; and we had a radiator put in so that the normal engine cooling system—sucking up water—would be circumvented so that we could go in sea water (which, with its salt and electrolytes would corrode important parts of the mechanical workings that make the boat go) . . . and herein lies our unforeseen expensive problem, poised to chomp away the first tender shoots of a savings account that I've been so carefully tending the last several weeks.

If you alter the basics of a boat, there will be issues. In our case, the radiator that was installed to cool the engine just wasn't efficient enough and so, for the last 111 hours of engine use, even though the boat hasn't been overheating, it has been running hot, which is hard on the engine in the long run. Mercury, which makes the engine, has suggested adding some sort of pump to the system which makes it better somehow (I have a better picture in my mind than I am able to explicate here), and we need to have that installed . . . for $1,008. Or not use the boat. Or use it for many fewer years than we would like.

One thousand dollars, of non-frivolous money, for frivolous, non-environmental fun. Sure, we share this fun with as many friends as possible in the summers (and, it sounds like with the upgraded system we'll actually be able to keep the boat running all winter, thus sharing with intrepid friends all year long), and we are SO looking forward to more outer-islands in the San Juans again this year, but wow. Huh.

I stood up to shake it off after hanging up the phone with Dave, one of my friends at Sea Ray, and took a quick trip to the bathroom. I returned to the living room, my chair, my laptop, my coffee. I sat down, replaced the computer on my lap, picked up my mug, took a sip, replaced the mug on top of the cedar bentwood box Ian made me for our first Christmas together, next to my cell phone, turned back to my computer . . . turned back to look more closely at the top of the box. LITTLE SPLASHES OF LATTE EVERYWHERE. On the box, on my phone, on the pens lying there. What the . . . ?

"HOOVER." I said, and he, sleeping innocently 3 feet away, leapt up and came wagging over, tail down, ears back, a picture of guilty contrition. "YOU WERE DRINKING MY COFFEE." Apparently, EVIDENTLY, GUILTY AS CHARGED.

And a little more insight into how I view the world—I did not think "EWWW" and race to the bathroom to throw up—I thought "Damn. Now I don't have as much coffee anymore," as I finished it off.

In All Fairness to Seattle Boat

2011-04-13T12:50:00.001-07:00

When I last wrote of the Seattle Boat/Lake Union Sea Ray "struggle" (shall we say), Seattle Boat was going to get my boat down from dry stack using a large metal plate to cover the hole in the ground and then take the boat across the ship canal to Sea Ray, where Sea Ray could perform the dewinterization. Also due at this time was the 100 hour service (boat "mileage" is measured in engine hours because distances are pretty hard to judge), which involves the boat being pulled out of the water at Sea Ray's service facility. Dewinterization can be done in the water. Anyway, Ian and I thought "Great. We'll just have them do the service at the same time."

But then, the morning after I last wrote, I got a text from Seattle Boat saying the boat was in the water and Sea Ray could come whenever (NOT THE PLAN AS I KNEW IT), and so I tried to talk to Sea Ray to find out what was up but they didn't seem to know . . . but then a couple hours later someone else from Sea Ray called to say that they had finished the dewinterization and the boat could be stacked again. Whaaa??? Well, that being the case, I texted Seattle Boat letting them know they could put Dogfish away and suggesting that they choose a more accessible spot this time—at least for the time being. (You are maybe beginning to see the kinds of things I fill my day with when not actively involved in cancer, horses, rocks, or Gyrotonic: hyperbolic, maddeningly inefficient minutiae.)

The need remained, however, for the 100 hour service (and repair for a coolant leak discovered during the dewint), and so I scheduled me to drop off the boat this morning. Initially, I thought I would have to drop off the boat at the end of Ian's work day so that I could get a ride back to my car (also the ends of the work days for both boat places), but then I really looked at the distances. By water from Seattle Boat's dock to Sea Ray is, according to the path feature on Google Maps, 335 yards. Under favorable conditions, I could give Dogfish a big shove and she would glide perfectly into the slip across the ship canal, because my innate physics brilliance and physical prowess would have allowed me to give a push of just the right amount of force to counteract the friction from the lake water. The return trip by land to my car, under unfavorable conditions, was less than a mile, which I could easily walk—much more easily than trying to coordinate with Ian on top of Sea Ray and Seattle Boat. Today the conditions were, alas, unfavorable, and I had quite a wet mile-long loop. But the boat will be really, REALLY ready if we ever stop getting rain.

An aside about the rain in the Northwest this year: We have so much snow pack right now that the state is considering asking the wind farm in southeast Washington to close down periodically—because we will be making too much electricity with our hydro turbines??? Also, the reservoir up on Snoqualmie Pass on I-90, which delivers drinking water to the City of Seattle, is FULL-FULL, which it has almost never been—usually, there's a small, murky puddle of water surrounded by tree stumps. I have it on good authority that all the stumps are currently submerged. And, although I can usually have a dog walk during a dry part of the day, that hasn't been true nearly as much for the last several months. We really are fulfilling our reputation.

But back to exonerating Seattle Boat. When I arrived today Sean, the manager of the Lake Union marinas, was there and was genial. Pleasant, even, to the point of mild joking about the weather and our recent debacle (!). He showed me where my boat is usually stored, and sure enough, right behind it, affecting ONLY my boat, was a circle of cones about 8 feet in diameter, marking the place where the repair was seasoning. Sean explained that he hadn't known that the work was going to be done; my boat was the only one affected; AND I was the ONLY CUSTOMER who wanted a boat down that day. Or probably for weeks.

I'm not quite sure what the lesson is here: You never know when incompetence is going to filter down and affect you? Sure, that may be part of it. But it's probably more true to say that curve balls come at us from all directions, all the time. Some miss us completely. We deflect some without really knowing it—maybe a momentary twinge. Some graze our elbows or knees and inconvenience or annoy us. Some end up connecting directly with us and really beating the shit out of us. But for all of these, the best way we can react is with grace and empathy. Breathe in. Breathe out. There is always enough time.

Permission

2011-04-12T17:46:00.001-07:00

I saw Taya today, whose self-created bodywork system is suddenly becoming THE THING for massage therapists to learn and who is, therefore, more often these days traveling around the country teaching courses than waiting at her Everett-area office for my call, and she scolded me when I told her I was rock climbing regularly again.

"Bu . . . I . . . No, reall . . ." I kept trying to say, and she just kept scolding.

"Your body is still in healing mode! You are still on drugs! Rock climbing is hard on you! Horses, yes, ride those, horses are good for you. But this climbing! You need to be careful! You need to not overdo things!"

"I already have ONE mother," I finally managed to wedge in poutily, when she paused for breath.

"I'm the one keeping your body healthy, though," said Taya, "not your mother!"

When she finally petered out, I had had time to ready my response. "I'm not climbing high walls," I said, "I'm just bouldering. I mostly climb with a friend, for about one hour, once a week. We take turns on the walls. We stop when we're tired."

"How safe is it?" she asked.

"Very safe—there are big thick mats on the floors, and I'm conservative about what I attempt. One thing I've discovered is that, from doing Gyrotonic, I have a really good sense of my body and what I need to do—which muscles I need to use—to accomplish a climb. And if I can't do it, I can't. But climbing's REALLY FUN!"

She looked at me sideways, still unconvinced.

"Look," I said. "In my horseback riding lessons, I'm jumping, but I'm jumping two-foot fences." I held my hand off the floor—short. Two feet. "I am not jumping Olympic-level jumps." I raised my arm over my head—tall. Scary. "Likewise, in climbing, I am doing beginning-level climbs—they are barely harder than ladders."

She didn't exactly humph, but her "okay, well, I just want you to pay attention to your body," sounded humphy.

What I remember from several years ago, when I first started rock climbing, was that going twice a week was ideal. That would allow my hands to heal and my muscles to stop aching—ready to be broken down again. I also used to horseback ride twice per week, and it's possible I even Gyrotonicized two times per. Certainly, when I was doing Pilates, that was two per. But I just can't do it now, this two-timing—I don't have the energy. I'd love to be able to ride twice per week and double the speed at which my jumps get higher (because 2 feet is higher than they used to be); or climb a couple times so that, likewise, I would be improving more rapidly, and able to handle the routes that weren't just like ascending ladders. But those days aren't these days.

These days, I sleep 8-9 hours per night, usually waking between 8 and 9 in the morning (I used to rise at 7:30 on the dot—for years, really). I don't usually schedule more than one thing per day, and I get a bit worn out—emotionally, physically—if I don't have a day completely off every week (I'm continually learning this). I still revel in difficult physicality, in the day-after burn, in the intense sweats and the gulping of water—but I have to revel at half-mast now.

I've been feeling faintly frustrated by this half-mastedness; the flagrant sloth of sleeping until 9 or—heaven forbid—later some days; my begrudgingly recognized inability to anymore go all out, all the time. In part, this may be a side-effect of fully incorporating cancer into my life: I don't really think about it unless I'm directly involved in it (i.e. someone is sticking a needle into my chest to access my port, or I'm putting in my ear plugs so the noise from the MRI doesn't deafen me or drive me bats), and so whatever my body is doing to integrate the pharmaceuticals and the supplements and keep the cancer at bay, whatever incredible amount of work that that takes, I'm pretty much completely unaware of it, at least in any conscious way.

And so, thank you Taya-mom for reminding me that I am, in fact, still (always?) in healing mode. I won't take your advice and stop climbing altogether, but I will allow myself to start finding 50% to be sufficient. Glorious, in fact.

“Hanger”, Flattery, and Things Nautical

2011-04-06T17:50:00.001-07:00

Life has been gliding smoothly along without too much of interest happening these days, mostly just the warm but mild pleasures and subtle pains of day to day existence at home in Seattle with dogs and Ian. One thing that is interesting: as I've been budgeting (for real! I'm still keeping up with it! After a month!) instead of refilling my home with sweaters, I've actually found that my home FEELS FULL AGAIN, and I'm thinking about clearing out the next layer! You might think that I should hold off on jettisoning sweaters until a different season—it IS spring in the Northern Hemisphere, after all, and so maybe I'm listening too closely to immediate sensation (who needs sweaters in Spring?)—but let me and my immediate sensation tell you this: here in the Northwest, any season is sweater season, and therefore any season is appropriate for clearing them out. I've been thinking about all my piles of clothes and shoes—not only the sweaters—and what I truly use and what I don't, and how to get rid of the surplus. Garage Sale? Consignment? Simple donation? Hand-me-down to friends and relatives? It's all very exciting, all over again, this clearing out process.

As far as singing out my soul, that's coming along at a snail's pace. A s l o w snail. You see, I have taken the idea somewhat literally, and am trying to write a song, one that I've been chewing the cud on for several years now (I'll be sure to be done with the cud before I begin to sing). I thought I had made a breakthrough with the chorus yesterday morning, but then I realized as I was driving to an appointment later in the day that I had, in fact, practically plagiarized another song. Imitation being the purest compliment notwithstanding, in songwriting, it is illegal. Anyway, I took a different tack yesterday evening, and while the whole thing sounds like a honky mess at the moment, I might be on to something. Don't look for me on YouTube any time soon.

Speaking of different tacks and other things watery, we tried this morning to have our boat de-winterized so that, if the rain ever does stop for longer than 23 minutes, we can enjoy a spin around the lake. Maybe it's just our luck with Seattle Boat Company (our marina operators and a little bit my nemeses), but when the team from (their rival) Lake Union Sea Ray arrived to have our boat taken out of dry stack and dropped in the water so they could work, our boat was unavailable, and would be for at least a week. Um, hello? How about an email or phone call letting us know that this might be happening? Or even, how about a response to the text I sent you late last night alerting you to the need to get the boat down? You could've contacted me this morning and saved a lot of time and hassle—mine, yours, and the poor technician simply out trying to do his job. It turns out (after calling three levels of marina operators, ending up with the highest, who knows my name from previous issues with them) that the owner of the property (Seattle Boat is only leasing for their dry-stack marina) had chosen this week to fill in potholes without informing even the marina operators. Of course there was a huge hole right behind our boat, rendering it impossible for the giant Marina Bull forklift to reach little blue-striped Dogfish. It's okay, though—Seattle Boat has a huge metal sheet that they will put over the hole tomorrow morning—since I went through the trouble to ask for a month's moorage refunded—and get our boat down and over to Sea Ray, free of cost. I grudgingly say fair enough; I'm not missing out on anything. Today does not seem to be a day with longer-than-23-minute dry spells.

I climbed again today at Stone Gardens, between talking to levels of Seattle Boat marina management, and again my fingers are clumsy and swollen and rock-burned and my arm muscles look BAD ASS (I just checked them out). Here's a situation to muse over: one of the things that I have a hard time gauging, understanding, and preparing for, in my life as it is right now, is when I am going to need food, what kind, and how much. My long habit has been to have a 16 oz latte in the morning (split quad), which I savor as I laugh over the comics, puzzle over the Sudoku or the crossword, read my morning email, and now sum up my daily budget. After I've been up for an hour or so, I eat whatever is on offer in our house—toast with peanut butter and banana, rice pudding I made the night before (with ¼ the sugar but twice the large, juicy raisins), granola, protein smoothie. I then take a bunch of pills and go on about my day, usually at home until after noon, as the body often reacts—to pills, coffee, food, comics, who knows what all—unpleasantly, to varying degrees, before noon. Anyway, this morning was a coffee and rice pudding morning, and it was a late-ish morning, and so I wasn't hungry for lunch before I met my friend at the gym at one(ten). We climbed until about 2:30 and then I took the dogs out for a walk at the nearby botanic garden.

Dogs and I were barely inside the garden gates when I realized that I was almost dizzy with hunger. Ian seems to stay in the hangry (a word we learned from our dear friends in Texas) stage indefinitely once he reaches it—tetchier and tetchier, and more and more sure the world is out to get him; Hoover is hangry unless he is eating. Today I, however, passed completely through hanger without even noticing, straight into Imminent Full System Shut Down. My stomach groaned and burbled and began eating up my body, starting with my brain, which made the world look dark and disorderly (and made me forget I was wearing my sunnies in the woods). I lurched around the park, desperately urging the dogs to poop so that I could get back to the car and bolt down some Brazil nuts (the snack that lives in the car) and an apple (the snack that I'd brought). All I could think about were those nuts and that apple. Perhaps coffee and rice pudding aren't enough fuel if you're going to be lifting 160 pounds up and down precipices for over an hour.

As you can tell, I made it back to the car, though, and the dogs didn't poop—bonus walk! I survived on my snacks until I arrived back at home and then enjoyed a leftover bowl of the halibut green curry we had for dinner last night. Ian's home early to distract hangry dogs—Hoover began hooting at me at 4pm on the dot—two hours early—and Spackle at 5pm on the dot—and all in all, it's been another fine day in Seattle.

Metapost: Inappropriate Content

2011-04-01T10:09:00.001-07:00

Regular readers will notice that I deleted my two most recent entries. Writing a public, searchable blog where I talk about boobs means that I occasionally get hits from people searching for something more salacious than breast cancer treatments, and I do think that's darkly funny, in a sort of "ha ha—took YOU by surprise" way. However, the possibility that people who were being abused would be stumbling upon my blog never occurred to me until yesterday. But simply the words "I Thought I Was Done With This" could easily call to people suffering all sorts of emotional or physical or psychological trauma. And so having become, with the help of my husband, much less of a dimwit, I'm not going to write lightly about such things again. I apologize to my readers: known, unknown, and especially those of you struggling with difficulty, and in some cases horror, in your own lives.

Regimen Change

2011-03-29T17:59:00.001-07:00

I'm feeling a little low today, a little tired, a little pensive. I've been in high gear recently—the new budgeting (yay for free mint.com!), the excitement of New Plans, the days, newly longer than the nights (although very, very wet— I heard this morning that we need only 1 ½ inches more rain to beat the wettest March on record, and that there is a big storm coming in to grant our wishes—if our wishes are to drown simply standing outside, not even face down in a mud puddle)—and my level of frenetic activity has been unsustainably high.

Part of the problem has been that a lot of the frenetic activity has taken place inside my head, and much of that after 11:00pm when I've gone to bed and should be enjoying, as Bertie Wooster would say, my "eight hours of the dreamless." Coupling high-speed, buzzing thought with the three snoring males I share my room with is too much for me, though, and lately I've been finding myself pottering about the kitchen making midnight snacks of graham crackers and milk and doing crossword puzzles in the guest bed. I don't always stay all night in the guest bed, but one night when I did, Ian got out of our bed the next morning and didn't notice that I wasn't there. He was very careful and quiet when he got up (he told me later), as he usually is, shushing the dogs and trying to keep them (Hoover in particular) from ripping through the walls in their avidity for morning mealtime, and it struck him as odd as he carefully shut the bedroom door, that the dogs paraded into and out of the guest room several times on their way to and from breakfast. Once he'd had his coffee, he figured it out (probably before that. I don't know. I was asleep in the guest bed). In Ian's defense for not immediately noticing the absence of a loving and heat-producing wife, I had left my pillow; our bed cover is a lofty and warm down comforter; I am, of course, as lithe and slender as a young willow; and Ian is a first-class sleeper.

Anyway, many days it doesn't matter if I don't get to sleep until 1:00am or 2:00am, but on Sunday I had my 8-hour Adult/Child/Infant CPR and First Aid certificate class at the Red Cross (I passed. You may have a heart attack in my presence and I will correctly perform CPR. Please do not embed broken glass in your wrist as I will pass out into the remainder of the shards.) and I had to get up at 7, and today I had my regular brain MRI and I had to be at the hospital at 8:30. These early hours, I don't like them. Even if the sun is up (or, the clouds are gray rather than black), my body has clearly put itself on a different schedule.

My MRI was relatively stable—there is still only one apparently active spot in my brain, deep in the cerebellum, and if you look at it every two months, it's hard to tell if it's growing at all. It is possible, of course, to compare today's picture with the one taken last June when the spot was first noticed, and then the growth is visible, but Dr Jason is happy to continue the MRI-at-2-to-2 ½ -months schedule that I've been on this past year and not do anything more drastic (i.e. another Gamma Knife procedure) for the time being.

I also learned that my tumor markers are on the rise again. For the main marker that I'm used to, the 0-37 one, I went from 33 to 39. Yep, out of range. For the other one, I'm still within normal range, but higher than I have been in months and months. But (and here is the regimen change), when I met with Dr Specht 10 days ago, I told her I wanted to start taking the Paw Paw Cell Reg supplement that Witch Doctor Dan recommended. Paw Paw is a fruiting tree that grows in the southeastern US, and it is, evidently, known for its cancer suppressing abilities (much like the yew, which is used to make Taxol, a popular chemo drug that I've been on). I have complicated feelings about deciding to begin yet another supplement.

One: I somehow knew that it was time to try something more, and I was right. Yay!

Two: I somehow knew that it was time to try something more, and I was right. SUCK.

And so, I'm feeling a little low today, a little tired, a little pensive. Not enough sleep followed by mixed news that I've learned to expect, learned to live with, learned to live well with. I met my rock climbing buddy after my appointment today, and my palms and fingers are, as I've been typing this, stiff and abraded and hot and a little clumsy.

But somehow, though I'm not even aware I'm doing it, I haven't yet learned how not to hope for a clean slate. How not to value total, unimpeachable (impossible) health above all else. And so today, in my peerless, beautiful, rich, somewhat implausible life, I'm feeling a little let down.

New Age

2011-03-26T22:35:00.001-07:00

Note: This one's long. You might want to piddle before you start.

In the past week I've experienced a significant shift in . . . focus, I guess, until I can think of a better way to describe it.

You might remember that a few weeks ago I wrote about a major physical house cleaning, finishing with this thought:

"The trick will be—always is—to use this cleanse, this created breathing space, this new awareness—to change the habits that brought on the overflow in the first place."

Well, somehow writing that out, really owning that idea, opened me up to new inspirations. Before I could again quite fill my closets with 17 colors of this season's Old Navy t-shirt (they're really cheap! Because they're made by Chinese children in sweat shops!), I suddenly found myself inspired to create an ACTUAL budget, so that I REALLY knew, and that Ian REALLY knew, what we were spending each month and what we needed to spend, instead of just guessing (me with better accuracy than Ian, but then, I do manage the finances. Or rather, I "manage to spend" the finances.)

I haven't had an actual budget—where you put aside money out of your monthly paycheck for things you hope to do in the future, and have an emergency fund for items such as replacing the hot water heater or your transmission—since I was in high school, and it's arguable that that budget, supplemented with a roof over my head and loving parents, was not quite as realistic as those that most adults my age are dealing with now. When I was going into 8^th grade and my brother was going into 5^th, our parents decided it was time to teach us how to save money and budget. On a long drive (to, as it happens, Jerome Creek), we tallied up all the things Deane and I needed money for in a year—including week-day lunches (cheaper, but harder from the grocery store), clothes, gifts, and entertainment; divided the numbers by 12, and my parents gave us that amount of money each month. Dad came home from work soon after with ledger books (mine was blue and Deane's was brown, faux leather with gold piping around the edges), and each month I would carry over any balance from the previous month and add in my new $90 (it was the '80s and $90 went a lot farther than it does now . . . although I could probably get a dozen Old Navy t-shirts on a good day today), and keep track of everything I spent, down to the penny.

Deane and I were actually both frugal kids—in part, I'm sure, because before we could drive, there was absolutely nowhere we could go to spend money. There was no corner store (it was a mile away and for a treat it was easier to just suck surreptitious slurps of Hershey's syrup out of the can in the fridge), and there was certainly no amazon.com, Ian's and my current nemesis. Deane and I ended up with regular surpluses. One summer, we cashed in our savings on plane tickets to southern California and visited cousins for a week. Another time, when I was 16 and presumably could've found a place to spend my money on myself, I convinced Deane to withdraw his savings and add it to mine and we snuck off to Renton in the used, cigarette-smelly Ford Escort, and paid off and collected the dive equipment Dad had been slowing buying, with money he'd been budgeting himself, from some neighborhood car repairs he'd been doing.

We drove out to the barn that spring afternoon in 1989 and found Dad, greasy, grimy and hard at work on someone's farm pick-up. We jumped out of the car and slammed the doors, our faces aglow with the surprise.

"What's up, kids?" asked Dad, coming around from the engine of the truck and wiping his hands.

"We took out our savings and we went and got you your wet suit and your oxygen tanks!" I cried.

"You what?" he asked, incredulous.

"We got you your dive stuff!" said Deane, "From Renton! That you had on layaway for months!"

Tears filled his eyes as he shook his head in disbelief. "Wow," he said, marveling. "You kids aren't bad. You kids aren't bad!"

He spent the rest of the afternoon in full gear, breathing slowly at the bottom of our swimming pool.

When Dad died in 1992, Deane and I inherited his share of some family property that ended up in a lucrative sale a few years later, and on my 25^th birthday I suddenly gained control of a sizeable chunk of change. I didn't become a Gates or a Hilton by any stretch of the imagination, but when I was diagnosed with breast cancer a year and a half later and my graduate student insurance covered a mere $2,000 of Round 1 (three surgeries, two 3-month stints of chemotherapy and six weeks of radiation), I was able to pay for it all without adding financial stress to the baffled horror of being a 20-something cancer patient.

I was in the fortunate position to buy a house in Seattle at the very leading puff into the housing balloon, and I've been able, for the last 13 years, to pretty much have whatever I wanted whenever I wanted it (oh, curse you Amazon Prime for aiding and abetting me so, so seductively with your fulfilled promises of music, books, wine glasses, wool clogs, cameras, glitter fabric, and more!). In part, I have not completely lost the practicality I had as a child and so I bought a top-end 4-Runner instead of a top-end Range Rover, and this has kept my practices relatively sustainable over the years. Also Ian, always looking out for my happiness above all else in our lives, has greeted each new purchase, be it clothes, housewares, or dog toys, with words of praise. "Good job, Sweetie-pie!" he says earnestly. "Isn't that a beautiful sweater/mixing bowl/squeaky shark!"

And it has been lovely, and I do like these things, and I have enjoyed giving in to my shallowest whims and barest inklings of desire. But there's always been an undercurrent of guilt that, try as I might, I haven't been able to completely stomp into submission. No matter how many sweaters from Anthropologie I layer onto the face of this guilt, I have never quite been able to suffocate it. And, frankly, I myself am practically suffocating in sweaters now.

I have tried to use my cancer as a justification to spend what I want—I'm a poor, poor thing who has a difficult challenge and so I should be repaid, or at least rewarded, for my suffering—but to be honest, deep down, I don't buy that (as it were). No, deep down, I know we all have struggles and we all have gifts, and in this world, you don't get monetary rewards for having cancer.

I have claimed to myself that shopping is an artistic outlet—and there is a tiny kernel of truth in that for me—I do find satisfaction in putting together outfits and decorating my house and entertaining my dogs—but that claim also smacks of me doth protesting too much.

Ian and I also don't have kids who need their own clothing or their own food or their own squeaky sharks or future schooling, and so why, I ask myself, shouldn't I have a fourth pair of perfect jeans to go with the three pairs I already love?

Here is why:

Because I have music in my life, and it doesn't give a shit if I'm wearing that J Crew sweater that's the perfect shade of dark orange, a pair of purple cords and one of the Old Navy t-shirts (a nice mushroom-colored one), or simply the red fleece robe my mom made me that, let's face it, I'm in a large proportion of my waking hours.

Because I have nature and animals in my life, both under my daily care and under my periodic care, endlessly entertaining and challenging and thought-provoking, and they don't give a shit if I'm drinking wine out of glasses with daisies embossed on them or the mug someone gave me in college.

Because I have writing in my life, writing which allows me to have a profound relationship with my inner being, and with the inner beings of my friends and relatives, and writing doesn't give a shit if . . . okay, well, writing does actually find the squeaky shark annoying.

The point is, this last week, I watched a performance that tipped me into a new chapter in my life. A friend of mine, competing in a jazz singing contest, got up on stage at Jazz Alley here in Seattle as herself, her true self, doing the thing she loved most, and that she's held onto through her own pretty unbelievably difficult life, and sang her heart out. It was one of the best live performances I have ever experienced, on a completely different plane from the rest of the contestants. I sat blinking back tears, shivers running through me as her music, her soul, filled the room. She didn't win the competition, but I don't see how she could have. She wasn't doing the same thing as the other people at all.

Anyway, I'm tired of filling my house and my life with facsimiles of truth and meaning. I'm tired of giving in to the first impulses of my over-indulged ego. It was fun while it lasted, but I've grown out of it now.

I'm ready to sing out my soul.

Healing

2011-03-23T09:41:00.001-07:00

Ian, clever boy that he is, decided he'd better start healing before I got tired of being the coddler rather than the coddled, and so he's back on his feet (shoulders?), and able to drive the fun new manual transmission Hot Chocolate Mini Clubman again. Which, SIGH, means that he does drive it, and that I'm back to my big ol'—albeit comfortable—and, I've found, mildly threatening—red 4-Runner. You see, a Mini is small. Smallness is inherent in the name, after all—MINI. And people see a Mini coming up the street that they want to pull out into, and they look the driver in the eyes as she nears, they give a faint sneer, and they pull out, forcing the Mini driver to make evasive maneuvers. In my case, these maneuvers are consistently coupled with honking (the Mini has a fine, musical horn) and creative profanity. No, that's not fair—the profanity isn't creative at all. "WHAT THE F**K?!?" I yell as I hit my brakes/swerve/flip the bird/tootle at the a**hole who is getting in my way—obviously because he or she is insanely jealous of how cool I am in my Mini and must get back at me by being a jerk.

In my big ol' comfortable red 4-Runner, though, people tend, I have noticed, to stay out of the way. I still occasionally honk and swear at them.

The other thing about driving the 4-Runner is that it really is a very slightly more comfortable ride for the dogs, who are my almost constant daily accessories. When Ian and I looked at the Clubman model of Mini, whilst car shopping, we saw that there was plenty of surface space for two largish dogs to lounge comfortably if the back seats were down. After bringing the car home, Ian sewed a two-part, two-tone blue bed for the space, and it really is quite luxurious. Spackle, who can leap with great self-satisfaction into the back of the Mini (someone, at this time invariably me because of Ian's handicap, must always lift 74-pound Spackle into the much taller 4-Runner), feels like a pasha on his palanquin when he's riding with us, because he is a lounging car-rider anyway, and now the windows are low enough that he can see out as we bowl along. All that's missing from his perfect experience is a slave fanning him and languidly feeding him jerky treats, one by one (because too many grapes can be poisonous to dogs).

Hoover, on the other hand, is a very erect car-rider, which in the 4-Runner allows him to survey and comment vociferously on the world around him with ease, but in the Mini gives him a crick in the neck—while he is completely blocking the rear window. Hoover really does make a better door than a window, if a door is pugilistic and barks histrionically at any dog it sees in the world, as well as at people deemed to be off their rockers. In his defense, though, Hoover does seem to have a sense of crazy. I generally agree with him about the dogless pedestrians he barks at—they look bats.

But I digress. Ian is doing very well, with twice-weekly physical therapy and icing (on his shoulder, not the cupcake kind), and is already able to take two dogs for a walk at one time, if he makes sure to have Hoover on the left. He sat on his bike in our sunny, spring-morning back yard today and thought about it, but decided to take another week before attempting cycling on the road. He's needing much less coddling these days, but nevertheless hasn't quite gotten around to recoddling me . . . I can only assume that's just around the corner.

2011-03-12T21:30:00.000-08:00

I thought I'd eke the last bit of mileage out of my new haircut--it won't look this good once I go to bed tonight. And no, I haven't had any colorist other than Helios. Blonde streaks are a direct result of spending so much time these last several months in warmer, sunier climes (two of the four of which have experienced major flooding since I've visited them . . . maybe I should start traveling to drought-stricken areas.) If you haven't seen me much since January of 2010, here's what I looked like then.