Book Report

I recently finished reading In Defense of Food: An Eater's Manifesto by Michael Pollan. He also wrote The Botany of Desire (which I did not read) and The Omnivore's Dilemma (which I did and enjoyed very much). Pollan is a good writer, easy to read and yet full of valuable information. He doesn't shy away from science, although he also doesn't overdo it with statistics. His chosen topics are also important for us in the world we're in today . . . and make me happy to be in Seattle where, for the most part, with PCC and farmer's markets and Whole Foods, I can eat the way he suggests, which is usually the way I want to eat. His catchline for In Defense of Food is "eat food, not too much, mostly plants."

Well, what do we eat if not food? Turns out, lots and lots of nutrients, or fortifications, or additives, including artificial flavors and colors. And lots and lots of corn and soy. Not too far into the book, I started noticing uncanny similarities between what has become a "nutritionist" food culture in the US, and our pharmaceutical culture as well. Basically, our scientists have learned to isolate various aspects of food—protein, fiber, carbohydrate, fat, etc—and have been adding and subtracting these components (and others) from our foods for several decades, working on making the perfect healthy nutrition system for the American people. Of course, we all know that Americans aren't particularly healthy, and have, in some ways, been getting less healthy as this "food science" progresses. One thing that scientists are discovering is that taking some aspects of a food away means adding other aspects is more necessary for health—it starts to seem like having a prescription drug to assuage the side effects of the other prescription drug you're on.

I know I mentioned several weeks ago a quote that made a lot of sense to me, that brought me around a little (before I even knew how much I'd have to be brought around) to Western medicine. It's from Judith Orloff, and what she said was "God was in the laboratory when they created these medicines." I don't believe in God as a being, but I do believe in a spiritual, Universal Force, and I can see that, of course that Force was in the lab when my medications were created. But . . . that Force would also have been in the lab when Snackwells were created, and those aren't good for us. And hydrogenated vegetable oil isn't good for us. And so, I'm back to being a little bit ambivalent about things created by humans. The thing is, they're not necessarily all for our "benefit", just because we've created them. At least, we don't have the perspective to know what's exactly for our benefit and what isn't, or what it even means to "benefit" from something. Maybe being overweight and diabetic is what we need to learn, and so eating a high-corn sweeterner/low omega 6 diet is of benefit . . . but I'm glad to have someone like Pollan remind me that "healthy" is maybe a very different thing.

At any rate, I decided maybe a year and a half ago that I was no longer going to jump onto any "diet" bandwagon. I was going to eat what I wanted, when I felt like it, should be damned. It's amazing how easy it is just to eat what you want, what you think will taste good.

Well, it was easy until I couldn't really taste anymore.

One of the Worst Nights Ever

Last night, after my day of extreme fatigue, was a very bad night. Not a bad night as in "I got shot and had to spend hours in the emergency room getting a bullet yanked from my thigh," or "I was puking all night long until I ended up curled on the bathmat, tears leaking from my eyes," or even anything remotely related to the things I'm supposed to watch out for—no seizures, no major headaches, no sudden loss of motor skills. No, last night was bad because my nose was plugged and I had to breathe with my mouth open and I, therefore, couldn't sleep longer than about 45 minutes without flailing awake to drink more water and moisten my arid-seared soft tissues.

This was bad in the way that things are bad that are almost perfect except for some diabolical detail. I once stayed in a perfect apartment in Greece for a week—complete with kitchenette, sitting room, bedroom, bath, right in town, only $10.60 per night . . . before the Euro, of course . . . except that there were never fewer than 2 mosquitoes in the bedroom at night no matter how many mosquito coils I used and how many I smashed, and someone had left meat in the fridge and it had been unplugged (this was late September and I found the meat so who knows how long it had been there) . . . so collecting my yoghurt in the morning was an invariable exercise in gag reflex control. If the little apartment hadn't been so absolutely perfect in every other way, I probably wouldn't even have registered the mosquitoes (although the meat, well, that would've been hard to ignore).

Anyway, I was tired last night, and happy to be in my bed—so happy—because I really was so tired yesterday. And yet, even during the 45-minute naps, I wasn't sleeping well—I was dreaming, but not about anything coherent or, I believe, helpful—mostly about water bottles, but water bottles that were supposed to be constructed into something else . . . The dreams made sense to my sleeping self—more or less—in a frantic sort of "stop-this-cycle-I-get-it-already" way, but the sense fled as soon as I dragged myself awake and drank some water. And of course, drinking so much water meant I needed to pee a lot, which I did, wondering each time if it was really worth it to put all that effort into going all the way to the bathroom right then or if I could put it off. At 8:00am, I finally dragged myself all the way out of the bedroom end of the house and to the kitchen, 20 feet away, and made myself eat some breakfast. I wasn't particularly hungry—I tend to feel a bit oogy in the tummy anyway if I haven't had enough sleep (like for those early morning flights where you have to leave the house at 4:30am)—but I choked down some yoghurt and took my pills . . . and blew my nose.

And suddenly, it was as if the heavens opened and the angels sang again, and kittens and puppies cavorted together, and then, tired, lay down and slept. With my nose clear, I was able to go back to bed, and, breathing entirely nasally, sleep for four hours. It took me at least three more naps throughout the day to make my way up to my normal level of fatigue—maybe a 7—but I did it. Sleep, real sleep, is glorious.

SO TIRED.

For some reason, today I have really understood the meaning of "fatigue," when the nurses ask you, on a scale of 1 to 10, how yours is. Today mine has been a 10. I understand very well now that it hasn't been before. I'm not sure why it is today—I had an infusion yesterday, yes, but it was my 5^th so I wasn't really prepared for a reaction like this. I did take an extra Benadryl before bed last night, because I wasn't sure I'd be able to sleep because my throat was feeling dry and scratchy, but has that really carried over into today? I also made sure to dose myself well (not over-well, I thought, but reasonably well) with anti-constipation aids, and maybe that's part of my problem, because I did seem to dose myself over-well. Oops.

I have mostly been staying in bed today, which is one of the signs that I'm SO TIRED. Another is that I've actually taken 2 or 3 1-hour naps. Here are a couple other signs—I have been thirsty and unable to nap too long because my throat just gets dry, but I've had to make a concerted effort of will to even go into the kitchen and fill my water bottle. And then, when the water really wasn't seeming to keep my mouth moistened, and I thought of pear juice and fizzy water, I thought but the pear juice is behind two other juices in the fridge on the bottom shelf, and I'd have to get a glass and a straw from two other places, and all that work was almost too much for me to handle (but I did, and it was tasty).

And food today has been the not-terribly-nutritious but very simple graham crackers and milk, and yoghurt-covered almonds.

And now I'm going back to bed.

Addendum: Ian pointed out that Dr. Specht hoped, at the beginning, that the cancer would start to respond to the chemo quicker than my body would respond to the chemo--that is, that I would start to feel physically better, lung-wise, before the build-up of drugs caused me to feel physically worse, whole body-wise. Today is probably an example of those two aspects coming together.

My First Mental Hiccup

So I missed an appointment with my Witch Doctor. I had written it into my paper calendar correctly—24 June—but somehow in transferring it (using my brain only, I admit, and not my eyes), I put it in my online calendar on 30 June. He emailed tonight to make sure I was okay, and of course I was, only embarrassed a little. In fact, I think this is the first appointment I've ever outright missed in my life. I suppose I have the best excuse possible right now.

While I was composing my email reply to the Witch Doctor, Ian called from the kitchen to ask me if I had already put soap in the dishwasher. It was almost full earlier, but we had decided to put in a last couple glasses right before bed and run it then. "No," I called back, "I didn't put soap in."

"Are you sure?" he asked. "Because there's soap."

"I'm sure," I replied.

"Oh . . . right," I heard him respond a moment or two later. "I put it in myself about 5 minutes ago."

Ian said he was pleased that my confidence didn't seem to be shaken by my hiccup. I hope his isn't, as well.

The Pre Wig

Wig Number 2

Wig Number 1

Almost Backwards

I've been slowly weaning myself off of the dexamethazone that I've been taking to keep the swelling down on the tumors in my brain. That is, Dr. Jason has been slowly weaning me off the steroids—I am choosing to take anti-nausea meds only when I think I need them, but I understand that I am not the best judge of the necessity of all my pharmaceuticals. Anyway, I went from a buzzing, jumping, Red-Bull-and-Jolt-cola-cocktail 16 mg per day at the beginning (a bloody lot), while I was doing the radiation and for a week or so after, and now, a month later, I'm down to a total of 4 mg per day. My chipmunk cheeks don't seem to be keeping up the taper at quite the same pace. At any rate, I still feel the slight rush of jitteriness, and my handwriting and my voice are still quavery and 98 years old, even with only 2 mg in the morning and the evening, but I think the rest of my constitution is adjusting. In some way.

You see, I am not really sleeping at the normal times anymore. During the height of rush time, I was sleeping mostly at night (rather than during the day), but for maybe 3-4 hours (not all at one time), often up at 5:30am. Or 3:30am. Or occasionally all night. Then I gradually adjusted a little until I was sleeping maybe 6 hours per night, which was nice (you stop noticing that your six hours are divided into 3 separate time slots by drinking and peeing). Now, for the last couple days, the days in which I've dropped down to a morning and evening mere 2mg of my dexamethazone, I seem to have needed a lot more sleep. Which is lovely, but I seem to have needed it from the hours of 10:00am to 5:30pm, nighttime be damned. And lunch dates.

This is not entirely true—I had a lovely lunch date with my friend Dr. Tess today. But I had just risen from a 2-hour nap when she arrived at noon, and I fell into bed when she left at 2:30 and slept until 5:20, and I fear that I'm going to find, again tonight, that I'm still wide awake reading A Good Man in Africa by William Boyd (I am enjoying the book—British foreign service in Africa trying to make a go—but I despise the main character) at 4:00am.

More sleep is obviously very, very welcome. I'd just like to tweak the timing a little.

Monument

This courtesy of my brother.

Cosmetic

My family was not very "fashion forward" when I was growing up. My father was a mechanic and worked on our farm so most of his clothes—except the ones Mom could hide from him for special occasions—were stained and holey with grease, battery acid, mud and whatever else you might find around truly filthy places. When Dad, left to his own devices to go to a meeting, dressed himself in "nice" clothes, he was usually in a pair of polyester work pants, a short-sleeved plaid cotton shirt, and an acrylic plaid shirt over it for warmth. I loudly voiced my disapproval when I caught him in such a get-up (in a weird case of the past repeating itself, Ian wore a very similar outfit the other day, different only in that all the fibers were natural. The plaids still did not match, however. I bought him two sweatshirts when we got home.)

Even Dad's hands were cracked and marred with years of heavy, dirty work and of course no moisturizer. I never knew him to wear his wedding ring, simply because it didn't fit. His fingers were too thickened. I can still feel his hand holding mine—the coarse, rough skin, the blackened cracks in the surfaces of his fingers—and marvel that this man, often filthy and as often completely unaware of it, played French horn like an angel, and was truly one of the most sensitive and talented musicians I have ever heard.

But pretty? No.

My mom was better—she was a school teacher, and so was aware of appropriate attire, and did, I felt, a pretty good job of choosing her clothes. A couple of noteworthy times that I didn't agree with her include once when she and Dad were on their way to a party and I, about four years old, asked Mom "Is everyone going in their pajamas?" Of course, this would've been in the Seventies. Another time, in high school, I borrowed one of her dresses—one she had been keeping in the regular rotation—to wear as a dowdy housewife in a play. That dress didn't see the classroom again. In general, though, Mom is a good dresser. She cares about what she wears and she has a style. She branches out into new colors (sometimes with some prodding from me, but she's getting better at just doing it herself), and she has learned to mix and match her wardrobe so that her array of separates—bought as outfits—are not all worn as suits. My one criticism is that she wears her pants too big—she doesn't like to feel them, so virtually every pair—buttoned and zipped—can be pulled right off—but they don't actually fall off so I usually only mock her gently while we're shopping and leave it at that.

My great-grandmother, Granny, Mom's dad's mom, was evidently quite the clothes horse and Mom likes to say that I, as a shopper, am Granny's girl, but I'm not really any more Granny's girl than Mom is. She just didn't have the money to spend on so many clothes until later in her life than I.

But clothes are completely different from cosmetics, and in our family there was virtually no help with those at all. My memories of Mom in the morning, getting ready for work, are frantic and rushed. She has the same haircut that she got at age 15 (usually cut herself, using a mirror that would ride around her neck on a plastic noose), so by then it already took no time to style. She got out of the shower, dried it, brushed it once, and hair was done. She didn't wear eye makeup at all—her clear blue eyes and blond lashes were completely unadorned. For several years she wore contacts instead of glasses; I have no idea if this was merely because she could see better, or if it was because she thought she looked better. She eventually stopped wearing them. She did frequently wear a bit of blush, and she also wore lipstick. Sometimes, I think, she just used a bit of the lipstick on her cheekbones. Once, when my brother was about three, he went digging in her purse for Chapstick, and by the time she looked in the rearview mirror to see what he was so quiet about, he'd managed to generously coat his lips and the surrounding area with bright pink paste. Deane, whose favorite response to any commentary was a belligerent "I know dat!" was not pleased to be laughed at for his blunder. Mom also wore cologne, although not anything she'd picked out. I think, in fact, that they were usually men's colognes that my father had received free for buying spark plugs for his shop. I know we had a green glass car full of scent sitting on the back of their toilet.

My several aunts were always much more put together, as far as make-up went. One in particular, a tall, slim, dark-eyed beauty, still has quite the morning regimen (which has, in the past, included separating mascaraed eyelashes with the tip of a pin—which always makes me think of earthquakes and kind of makes me queasy, even though I've done it myself on occasion since hearing the trick), and still looks fabulous. One morning though, when her youngest was about 3, he got up early and came to see her before she had begun. "Oh!" he gasped. "Mama UGGY!" Definitely not true. But by his standards, my mama was also uggy—but all the time.

Again, definitely not true.

For some reason, I gravitated toward eye beauty regimens more than lip ones—maybe I just don't like the idea of lipstick on things. But I do like my blue eyes, and I have cow lashes if I don't do something about them—they point down instead of up—so for years I curled them religiously (including—and this was crazy, I see that—during a 5 ½ week trip to Kenya with a friend, even when we were staying in tents and hung over every morning). I also started plucking my brows, and I like the curve they have now much more than the bushy caterpillars they were before.

But this modicum of beautifying behavior has not put me in a very good position for where I am now in treatments. I am completely bald, and I know that the rest of my body hair—including my eyebrows which are so well-trained, and my eyelashes which are . . . well . . . still blondish cow lashes, are going to be with me for only a short time yet (maybe three more months if I'm lucky). A friend asked the other day about applying some false lashes . . . and I just have no idea where to begin. I tried, years ago, and looked like I'd done it in the dark with tongs. Not only not subtle—not remotely attractive. I'm going to ask her if she, an actor, can offer me some suggestions or assistance, because lashes are not only pretty—which is, in fact, important—they also keep dust and gnats out of your eyes.

Although I do not have a stellar background in makeup, I do care how I look. In part, this is because I don't want random people to feel bad for me on the streets—I don't want strangers to think "Oh, the poor dear—she looks like she has cancer!" Not because I don't want their sympathy—I just don't want them to feel like they have to offer it. I don't feel bad about the cancer—why should someone else? But I'm also lazy, and so even though I have an awesome wig (pics coming soon!), and I fully intend to—finally—learn some things about beauty regimens—I'll probably mostly just throw on a scarf over my bald head (and leave my bare face bare when it comes to that), and go about my days.

Beauty vs ease? I choose both.

CT Update

This morning I had my first check-up CT and follow-up visit with Dr. Specht. I had grunted, so I was in much better shape than yesterday, and I felt that I could definitely hold my breath more easily in the exam than I could a month ago. I didn't feel at all like coughing when the mechanical voice said "breathe in, hold your breath," although I recognize that the days of 2 minutes and 20 seconds of breath holding are behind—and before—me at the moment. I didn't have to have any contrast at all, so no sticking me anywhere (my veins are still a phlebotomist's dream today, but I'll take what I can get).

That said, the CT did not show any significant improvement. It didn't show anything worse than before, and I am tolerating my treatments very well, and when Dr. Specht listened to my lungs, she was pleased with how clear they sounded while they worked through their issues. Also, my vitals have slowly been getting better, at least from what I can tell—my blood pressure is back down to close to 100/60 and my pulse rate was 80 this morning instead of 107, and, as I've said this week, I walked 10 blocks one afternoon, and it was easier to hold my breath for the test. Basically, I feel, and Dr. Specht feels as well, that things are on the right track, and we will know a lot more in another 3 weeks or a month when I see her again. A dramatic improvement would've been a nice sight after basically three chemos (yesterday's can't count much for anything appearing in a scan today), but having my body perform so well and take maybe a bit longer is probably even a better sight.

And I had a nap for two hours this afternoon, which was glorious. I'm happy.

The Man Grunted as He Lifted the Box

The euphemism for a bowel movement in my mother's house when she was a child was "grunt". "Did you go grunt?" Grams would ask the kids. "Do you need to go grunt before we leave?" With four small children in the house by the time Mom started school, no wonder she had no idea the word had any other meaning.

One day in first grade, the class was having a reading lesson and it was Mom's turn. She loved reading, and loved reading aloud, but she scanned ahead in her reader and saw the sentence "The man grunted as he lifted the box," and she was horrified. The man grunted, lifting a box? It must have been a heavy box, and he must have gone in his pants. Mom was shocked, appalled that such a thing would be in a first grade reader. She could not—would not—say that awful word in front of the class and her teacher, though, so she read the sentence through, skipping the obviously scatological verb.

"Elizabeth," said the teacher, "you missed a word."

"I don't know that word," said my mother, looking directly at the teacher with her blue eyes, long blond corkscrew curls waving gently but firmly back and forth.

"Well, you can sound it out."

"I can't." Resolute.

"You can—just try. Grruhhh, come on, repeat after me."

"I cannot." Not giving an inch.

She never did read the word, and I don't know how much time passed before she knew what the dictionary definition was.

Today, the day of my fourth infusion, I have not grunted. I also had a new medication added today—Pamidronate—and my tummy is feeling full and acidy. I am bloated with liquid, too, because I had probably 3 or more liters of saline or dextrose and drugs dripped into my port today. The veins on my hands are distended—an avid phlebotomist would be thrilled to give me an IV. My rings are a bit tight. My pants are a bit tight. And every time I pee (which isn't all that often, surprisingly), it's all very yellow, so I know my kidneys are already working hard. One difficult thing about so much infused liquid is that it doesn't, in fact, make my mouth less thirsty. And for some reason today, my throat is a bit more sore than usual as well. So I'm currently drinking ginger tea with a little honey, trying to settle my stomach and my throat.

The Pamidronate is for bone health. Since my estrogen is being taken away, I'm at a greater risk for osteoporosis. And since Pamidronate strengthens bones, it will also help the chemo get rid of the metastases there. It takes 2 hours to infuse. There is another option, called Zometa, which is evidently newer and takes much less time for infusion, but I tried it twice several years ago and it made me puke. Not acceptable. Still, the Pamidronate isn't exactly easy on the belly. I'd love to be able to just lie down and go to sleep through this, but I'm not tired at all. But the Tylenol PM might just come in handy tonight.

Ten Blocks of Steps in the Right Direction

Yesterday afternoon I had my first long-awaited massage with Luata Bray, who is absolutely added to my stable of people. Actually, "stable" is perhaps more insulting and inappropriate, in some ways, than "arsenal". I'll keep looking for the right adjective . . . Anyway, she was fantastic. Warm, sweet, funny, highly accomplished. She massaged my sides, she massaged my belly, she massaged my inner thighs, which, even though they haven't gripped a horse in a couple months, still carried remnants of tight. She massaged my head, and pointed out a huge benefit to cancer baldness. It was heavenly, that head massage, with no hair in the way.

After my massage, which took place in the neighborhood of a dear friend who's also gimpy right now, I chose to walk, s l o w l y, up to her house to visit for awhile (Ian came and had dinner after work). It was ten blocks in the less-than-70-degree hazy June Seattle sun, and it was glorious. It's the farthest I've walked in a month, I think, and I did okay. I didn't breathe hard the whole time (did I say I was s l o w?), until I reached her house, and climbed the, oh, 15 stairs? up to her flat. I collapsed on the couch then. She was lying face down on a massage table, because her back is out and she's been told by her physical therapist that tummy time is necessary for stretching. Anyone with an infant will understand her attitude exactly—she was not enjoying it—tummy time seems to be fun for no one.

She's been on her own collection of steroids and other drugs, so we had a quavery conversation for about an hour, then I conked out on the couch for 45 snorey minutes before dinner, completely spent by my exertions.

But I had exertions!

Slightly More Side Effects

Well, the shots seem to have started giving me the bone pain. Not too bad, mostly just a lower back ache where my pelvis is thickest. This is the most likely spot (thigh bones are second, I believe), considering the heft of the bones there. But it did help keep me wakeful last night.

As for guts, it seems that the farther I get from the infusion Zofran the better I am. Also, I forgot to mention that my visit to the Witch Doctor last week resulted in two days of normalcy before that infusion Zofran kicked in. I'm currently on a 3-week schedule with him, so we'll see how things go.

Side Effects

Finally, the long-awaited (or merely long-forgotten) promised post about side effects.

Side effects seem to have become big business for the pharmaceutical industry, because virtually everything you can take can—and likely will—have them. There are definite benefits to typical Western pharmaceuticals—don't get me wrong. I have had some amazing primary responses to some of my drugs—almost immediate cessation of nausea with the Zofran (slightly less quick, but—you guessed it—smaller guttal side effects with the Compazine), overnight clearing up of the thrush with the Fluconazole, evident (from lower nausea in the mornings and no more muscular headache over the right side of my scull) reduced swelling of lesions in my brain from the dexamethazone.

However, there are the drawbacks, and there are lots of secondary drugs you may have to take to help you take these primary drugs. As we all know by now (too well, I'm sure, for some of you), Zofran is great on the tummy, hard on the guts. I've been taking Senna, Colace, Miralax, Milk of Magnesia, yoghurt, and a lot of fruits—cherries and grapes and raspberries, prunes and dried apricots, peaches and pears and apples—and drinking a lot of juice, mostly mixed with fizzy water because otherwise it gets a bit sweet—grape, and prune, and pear, and Goji berry citrus (a new favorite of Ian's, although the citrus gets me in the back of the throat a little). Periodically I'll have a large decaf latte, which also helps a bit, but doesn't actually add any volume to the gallons of liquid I'm supposed to be drinking every day while my kidneys flush craps from my lungs. Aside from my chemo day last week when I got a small drip of Zofran as part of my pre-meds, I've been avoiding it in favor of Compazine. I've found that, over all, I'm in slightly better shape.

The dexamethazone is the other major side-effect producing pharmaceutical I'm on right now—and it's a little tough. It's a steroid, and it makes me jittery. My voice sounds jittery and emotional (I keep having to tell people I'm not, in fact, choked up, merely drugged), my hands are jittery, my handwriting looks jittery. My signature is not at its best right now, so I'm sure it's good I've been doing all my shopping online. Not only that, but the drug has changed the way my face looks—I have puffy cheeks now, and a little bit of a second chin. Combined with baldness, I would have to say I am no longer looking quite as fabulous as when this whole process started a month ago. In fact, my face now looks like it does in my driver's license photo (and I wonder a little why that is. Why was that pic so bad?). To make up for the jitteriness of the dex, I could take Ativan to calm my nerves, but when I took it a couple times last year for the calming effects on my panic attacks, it kind of deadened everything. Instead, I'm choosing to sleep when I'm tired, which is mostly at night with one or two naps during the days, depending.

The Neupogen, the $1700/week shots I give myself, has a side effect of bone pain, because it's a massive stimulant of bone marrow function. It makes the white cells go a little nutso (normal high is 10,000 and mine was 43,000 the first week), which is great for the otherwise chemo-compromised immune system. So there—already a drug treating a side effect. To treat the side effects of Neupogen, one can take Tylenol, or even the much more interesting Tylenol 3. I haven't yet had any bone pain from this, and don't remember having it more than once or twice seven years ago.

Of course the infusions themselves come with various side-effects. Perhaps the most obvious is the hair loss. In my case this time around, the hair on my head has fallen out because of the radiation; from what I understand, there's some chance that it will not grow back as thick as before, or maybe not at all on the sides. I'm choosing not to be freaked out by this, because I won't know for at least 8 months anyway and that's a long time to hold on to a panic. The rest of the hair on my body—and I mean all the rest, even the peach fuzz on the belly—will fall out by the end of my treatments. And that looks a bit weird, too. We don't realize how much sheen body hair gives to a person, until it's entirely gone. And I'm sure other people are deft at applying false eyelashes . . . but I certainly wasn't. Better just to embrace the Olympic swimmer look. Along with hair loss comes a loss of skin color—chemo patients are processing a lot of chemicals, and a lot of toxins both internally from their diseases and externally from the cures. Your largest organ shows the strain. Of course there is also the nausea, the fatigue, and occasionally things like "chemo brain" when you feel like you're just not thinking as well. Oh, and nearsightedness. If I weren't already not allowed to drive, I would probably make the prudent choice to not drive anyway, because my glasses prescription simply isn't good enough right now. I think this has something to do with yet another side-effect—dehydration. That's a hard one to keep on top of, except for infusion days when I'm getting an extra liter of simple saline solution, simply because who wants to drink all the time? Talk about tedious.

The radiation side effects that I'm continuing to experience include a sore back of the throat (particularly last night when I slept with the window open right above my head—big mistake), scabby inner nose, and scabby ears. With the sore throat comes the lack of taste—and by that I mean ability to taste, not cheesiness of course. That's been a bit hard. Fruits are pretty easy and I can taste them, but savory seems a bit more bitter, or simply flat. I'm trying to cook by memory when I spice things, because one of the primary savories I can taste right now is salt, and other people don't necessarily get all their pleasure from that particular sensation. Although even I recognized that our traditional ground-beef-and-tomato-sauce spaghetti last night was a success. Oh, and of course there's the peeling head and baldness. I seemed to have avoided the possible loss of short-term memory and the possible loss of multitasking skill . . . although Ian picked those up for me (he's adjusted quite well now, but it was a funny week or so—like an hysterical pregnancy).

So, yeah. Responding to effects—primary, side, tertiary—beyond, I have no doubt at some point—is definitely one part of my current full-time job description.

Upcoming Schedule

I have my fourth chemo coming up on Thursday morning. This will be another 7:00am blood draw/port access, then an 8:00am infusion. The one issue with this last week was that I finished my blood draw at 7:20, then had to sit in the waiting room of the infusion room until 8:05 when the nurses got out of their meeting and all the patients finally went back to their beds (I mean, it's early morning—wouldn't you rather be in a bed than a waiting room?). My nurse (Judy this time, who I also knew before) suggested that I ask at the front desk if I can just go back and get settled, knowing that nothing is going to happen before 8:00. I am perfectly fine spending 45 minutes lazing around doing virtually nothing—that is my life these days—so I'm going to try for it.

This Friday morning at 9:00am I have another chest CT scheduled, followed by an appointment with Dr. Specht to see the results. Of course we are hoping for some significant changes in the lung nodules, and I think we will see some. On days that my guts are behaving more like normal, I can breathe pretty (comparatively) easily—lots more room for the diaphragm to stretch out those lungs—so I'm feeling pretty good about the results.

I have my next brain MRI and follow-up with Dr. Jason scheduled for July 1, so in a couple weeks we'll have more information about everything and the next steps.

Do You Want Me To Be Uncomfortable?

When I was probably about 10 years old, my mother told me an anecdote about shopping with her mother that shocked me to my grade school girl core. My grandmother, Grams, was a small but forceful woman. She had dark brown eyes, shortish, curly salt-and-pepper hair, fingers gnarled from years of arthritis, and a self-confidence that could, in a pinch, be mistaken for any number of less-constructive attributes. On this particular afternoon, Mom had taken Grams to the local drug store for some supplies. They had trolled the store and found what they needed, and were standing in line at the check-out counter, several other customers behind them. Suddenly, Grams let rip a battalion-strike fart—long, vociferous, odiferous. All the people in line behind her shook their heads, wrinkled their noses, shot disgusted looks at Grams, and left the line for clearer skies. My mother, stuck there where she was, cried "MOM!" in shock. "Well," said Grams matter-of-factly, "do you want me to be uncomfortable?" "Yes, Mom, yes I do!" my mother said. And I, hearing the story, wholeheartedly agreed with her.

Until now. Now, with my guts the way they've been recently—blocked, or blocked and gassy, just gassy, or gassy and loose—I have been in no mood to be uncomfortable. And, I admit, sometimes the gassy is bad. The kind of bad where you're awestruck by what you've managed to produce. The kind of bad that makes a dog back from the room, sneezing and shaking his head, even Spackle, who has been known to do that to us with his own farts. Bad.

It's a good thing I'm spending so much time home alone these days.

Nights

Starting with my visit to the emergency room back before Memorial Day Weekend, I've been on steroids and anti-seizure medications morning and evening. I believe it's the steroids, dexamethazone, and not the anti-seizure meds, Keppra, that are keeping me boosted when I'm trying to sleep. I was offered Ativan, to level things out a bit so that I could sleep more easily, but I took Ativan a couple times last year when I was having the panic attacks and I'm really just in the mode of absolutely no more than is completely necessary, so no Ativan. I did buy some Tylenol PM, over the counter of course, but I have, heretofore, chosen not to partake.

A typical night for me has been to hit bed (slightly jittery) around 1am or 2am, read until I can't keep my eyes open (The Yiddish Policeman's Union: A Novel right now, which isn't totally gripping me yet . . .), sleep until about 3:30am, use the bathroom, drink a ½ liter of water or more, sleep until 5am, drink another ½ or more liters of water, up at 6:30am with a bunch more water and then breakfast. Not, after all is said and done, that much rest. The other night, after infusion 3, I actually finished two liters of water in about 5 hours. When I wake up in the night, no matter how short a time I've been sleeping, my throat is typically dry and sore, my nose aches from the thinning of the membranes and the dryness of breathing, and I am desperately thirsty. And I have to pee. In all, not a good bed partner, so Ian and the dogs have been sleeping in the guest room.

Fortunately, we bought two excellent organic latex mattresses when we moved back into our house in December, so he's almost as comfortable as me. Of course, so that Spackle feels like top dog, we've been allowing him to sleep with us (individually) on the guest bed—me when I occasionally take naps there, Ian now that he's been sleeping there every night—while Hoover continues to spend the nights in his crate. This is all very sweet and congenial, except that Spackle is much more of a mover than I am overnight, and Ian has several times found himself on the very edge of the double bed with four dog feet pushing into his side. One morning, Spackle decided that 7am was time for breakfast, so he squirmed his way up to the top of the bed and snuffled in Ian's ear, then laid his head on Ian's chest, where he proceeded to breathe hard, and in a very awake manner, until Ian got up and gave him breakfast. So actually, Ian probably isn't getting much more sleep than he'd be getting sharing with me. But I haven't been worrying about him at all, which is a huge benefit for me when I'm gulping down water or staggering, bloated, to the bathroom in the wee sma's.

Last night was actually a stellar night in some ways—we were in our respective beds at around 11:30pm, and with only three trips to the bathroom and restocking on water, I managed to not wake up for good until 8:30am. I almost didn't know what to do with myself so late in the day. I was particularly hungry at 5am so I may add some graham crackers to the pile of supplies on my bedside table, but I was evidently tired enough to get through it and go back to sleep.

Sleep is good, you know.

Insurance

I'm writing this on my new computer, and it's running Windows Vista . . . which I have to say I haven't heard a lot of great things about except this joke: "Intel Giveth; Microsoft Taketh Away." The new computer has a fancy new Intel chip and seems to be quite fast . . . but it hasn't been exactly working consistently yet, so we'll see how this post goes . . . during my first attempt, the computer simply shut down and restarted on its own. Hmmm.

It's impossible to write a blog about medical issues without touching on medical insurance, probably many, many times over the summer. I haven't gotten to it before now because right in the middle of this first month of treatments Ian started a new job and our insurance changed, and I wanted to at least have it somewhat settled before trying to get any of my thoughts about it down on "paper". Well, it's somewhat settled, so here goes.

First of all, the insurance that Ian carried as a graduate student did a fine job of almost covering me for my past cancer treatments. We had a $100,000 yearly limit per person, and I only went over that for about five years. During those five years I also carried the Washington State High Risk Pool private insurance, which isn't real insurance per se but counts as it, because for most of those years I think my infusions alone cost something like $130,000 per year. The only issue with using these two insurances concurrently was that each one preferred to be secondary. The Washington State Health Insurance Pool won for secondary, but the University of Washington Medical Center kept forgetting that, so about every three months I'd have to call in and ask them to switch the order of the insurances in their files. I would've preferred to be able to leave it alone, but, well, sometimes you just have to do tedious things. Anyway, out of pocket expenses were low, and ultimately the system worked very well for us.

In January of this year, I cancelled Washington State Health Insurance Pool because it started costing almost $400/month for the premiums. Fortunately, with Ian's new job, I think this will work out to our benefit. Anyway, with the new job came a couple options: 1. Group Health, which I used growing up and which my mother, a retired school teacher, still uses—a fine option, and one of the first HMO-type organizations (from what I understand), and pretty well respected in the area; or 2. Uniform Health, the public employee's typical choice. We had originally considered choosing Group Health—I thought that if I was going to be doing cancer stuff, I'd maybe like a change of scene—new nurses, new docs, new infusion room—but then, when the pesky brain mets appeared, it suddenly became clear that having access to the UW, and Dr. Jason, was MUCH MORE IMPORTANT than any sort of scene shift. So Uniform it is, and, although I've heard accessing financial support for occasional treatments—certain brain surgeries, gamma knife radiation, etc—is sometimes a bit like pulling teeth without even Nitrous, ultimately Uniform pays out a lot of cash.

There are hoops, however. Prescription coverage, for one. The shots that I'm giving myself? Those ones where the first six cost $1700 (note: still have to submit that to the old insurance for reimbursement)? Well, we needed to pick up our new prescription for those last Thursday when I was having my second chemo. So we gave our new insurance info and were told no problem, we could pick up the shots at the back window of the pharmacy until 10pm. Except that, at the end of my long day of infusion and being moved about, we couldn't actually pick up my shots—which I needed to start injecting the next day—because of some issue with the insurance not wanting to pay for them. Ian (the sweetheart) spent probably an hour on the phone the next morning with various people trying to work things out, and found out that I couldn't just pick up the shots at the local pharmacy because they fell under a unique category of "special injectible" with our new company . . . and therefore had to be mail-ordered. Hello?

Fortunately, it is possible, if you don't want to self-inject, to go into the clinic every day and have a nurse do the shot, which is then included under "infusions" and therefore covered by the insurance in the same way that infusions are. Of course, then you have to go into the clinic every day. And every time you go into the clinic, you check in, you wait, you get your room, you wait, you have your vitals checked, you wait while the drug is ordered, then you get your injection (which, in and of itself, takes about 1 minute). So it's at least a 45-minute round trip, and we're lucky and live only 10 minutes away. Talk about tedious. And, undoubtedly, much more expensive for the insurance company.

But we were able to expedite our order (again, thank you SO MUCH Ian), and it arrived on Wednesday afternoon, in time for me to self-inject my last dose of the week. The only problem with the order was that they sent crap syringes. First of all, they're not the smallest needle available, and I'm sorry, but I am not willing to hurt myself every day—I want the insulin syringes. Second, the needle part isn't even screwed on to the syringe part, so when you pull the cap off the needle, you pull the needle off the syringe. It seems somehow both more dangerous and more dirty. So back at the SCCA yesterday for infusion 3, we simply purchased—with our own money for a very good cause—a box of good syringes that will cover me for most of the summer. I do have about 50 bad syringes if anyone wants them (actually, I probably can't legally offer that).

Health insurance websites are also probably among the least user-friendly, least intuitive sites out there—just trying to log on to one (and so far I think we each have something like four different log ons for various elements of this particular organization) makes my brain float out the window, and trying to navigate around, once on the site, is like being way too drunk. I keep thinking I'm a smart person, and how can less smart people function at all? I'm sure it's part of why insurance is such big business—people can't function, and pay probably millions of dollars a year for treatments that are supposed to be covered. Also, I can get angry almost instantly because I feel like sick people should have the benefit of ease in this case, and they really don't.

However, we do have insurance, and it does cover amazing treatments in this country. Herceptin, for example, which I was on for five years and which Dr. Specht suggested I might be on for the rest of my life, is something that is available in New Zealand for a maximum of six weeks. Yes, that's a big difference. And, in fact, enough to make us really glad to be here.

Although we are really, really glad to be here for so many other reasons as well.

Small Ironies

One of the things Ian and I thought we'd do after I was done with cancer once and for all last year, after the mastectomy, was to start a fmaily. We thought why not? We're young, healthy, we'd make great parents. Of course anyone could see that because of the spectacular way we've raised our dog.

However, we didn't manage to get pregnant for a year, and then I started feeling nauseas in the mornings . . . and yet my morning sickness wasn't related to pregnancy . . . and we all know what happened.

But then I got a call from a nurse the other day, and Dr. Specht, looking at my blood, saw that my folic acid was low, so I'm on a pregnancy-prescription strength folic acid supplement for the next three months.

But, one of the benefits of these treatments I'm on is that I won't actually have periods anymore, and that's nice because it's so much more convenient to do things if you don't have to worry about that. But, this morning when I, er, released, I saw some blood. Nothing had hurt, so I was surprised, and a little concerned. But the next time I went to the bathroom, I saw that it was, in fact, a period. Presumably my last.

Sigh.

The Witch Doctor

My friend Tami, with her fancy new red Mini, took me on some errands yesterday including my first visit to Dan, my Witch Doctor, since at least a month ago when he told me he was at a loss.

I was worried about seeing Dan, a little, because I trust him and his practice so much, to be able to diagnose issues, to be able to treat them, and just because he’s a good, stand-up guy who I feel comfortable with and who has become a friend. I was worried that he would feel he had somehow failed—that what my body was clearly hiding from him was stuff that he really should’ve seen, really should’ve figured out.

But the first thing he said was something like “So how has it been to baffle all your practitioners?” and I immediately felt better. Yes, he was baffled, but so has everyone else been. All the oncologists and radiologists who have been studying my scans, all the other people I see, friends, relatives, strangers—people have been baffled by my overall health, by my lack of serious symptoms (and, I admit, that has been part of my self-centered joy in this whole experience—that I have been able to be baffling.)

I was, not surprisingly, exhausted after my appointment. And I slept better last night than the night before (well, the night before I had a strange waking time where I, literally, got up at 3:00am and had a snack after having not slept at all, then didn’t go to sleep until 5:30am. Note: at this time of year, birds start to sing at 4:15am and suddenly more cars pass up Wallingford).

And this morning my guts were much better.

I'm Not the Only One

Check out this article from Scientific American.

I Ching

A couple years ago, when I was in the nascent stages of expanding my spiritual horizons, Ian brought me home a copy of the I Ching, or Book of Changes. The I Ching is an ancient Chinese oracle, and the particular book I have has been translated both into English and into modern, sensitive, but fairly prosaic language. An oracle, of course, is designed to make you think—not to answer your questions in any cut-and-dried way. But it’s nice to at least know where you stand. I do have another I Ching book, and the translation is beautiful, but there’s a lot of “climbing mountains” and “sitting by the quiet stream” and things like that, which can be less than comforting in times of angst.

My first profound moment with the I Ching was last year, when I had found out that I had breast cancer again and I was panicking. Literally, I had several panic attacks and thought I was dying during them—and thought I was dying when I wasn’t having the panic attacks. Cancer still seemed to be a frightening, out-of-control assault that I needed all my warrior strength to deal with, even though at the time it was just in my breast, and I was able to clear it completely with the mastectomy.

Anyway, the night of my darkest fear, I threw my coins (three 1967 quarters, just because they’re older than me), and the hexagram I received was #24, FU/RETURN. A time of darkness comes to a close. It likened my current experience to the winter solstice (not too far off, actually, in the calendar at the time), where the darkest night, the most abject fear, the greatest feeling of hopelessness, has arrived, and what is left is only the return of the light. It was profound, for me and for the couple friends who had been intimately a part of my panic. And the light did return from that time on.

I don’t consult the I Ching often, and when I do the hexagrams I generally receive are useful but not the life-changing event that one was, in part because I am not usually asking life-changing questions. But about a month ago, when all this started, I did.

I was making a shopping list in the living room yesterday and found a clipboard with a question on it: “How can I love my cancer?”. This is not the question I asked last year. This is not a question I would have asked last year. It’s a question that I have learned to ask over the last several months, to incorporate love into all my life, instead of strife and hatred and fear and battle. Nevertheless, I was surprised to see that that is how I chose to word my request, presumably the day I came home with my new diagnosis of lung and bone metastases, before I even knew about the brain. And the answer, which I reread last night, was again profound, and profoundly suited to how I am being with this cancer now. It’s not too long, so I will include the whole answer below:

# 5: HSÜ/WAITING (NOURISHMENT)

To wait with a proper attitude invites the assistance of the Higher Power.

There is a situation at hand that cannot be corrected by force or external effort. The Creative will provide a solution to one who waits with a correct attitude. This is a time for patience and careful attention to inner truth.

Do not give in to doubt and agitation now. You are not meant to wait in a state of desperate longing but in one of patient inner strength. Without certainty in the power of truth, success is impossible. Attempts to force a change, rather than allowing it to mature naturally, will only cause misfortune.

You would be wise to strengthen and reaffirm your reliance on the Creative. When you indulge in fear and doubt, you flood the arena where the Higher Power is attempting to work. Your principle responsibility in life is to keep this arena—your own consciousness—free of negative influences.

By accepting things as they are and not making fruitless comparisons to the situations of others or some imagined ideal, one engages the power of the Creative. If one then remains balanced, modest, and independent, good fortune will come to hand.

Wow.

Correction

Dr Jason Rockhill pointed out yesterday that he is not, in fact, the head of his department. Considering administrative duties associated with head positions, this seems to be excellent news for anyone needing his assistance. I'm happy, certainly.

News Trending in the Direction of Our Goal

Yesterday I had my last initial staging test, a full-spine MRI. This took about an hour, maybe a little more, and the backs of my knees were sweaty by the time I was done. Strange. For the first time, I was able to have a test using my Power Port as the access for the markered contrast, instead of having to get yet another IV stuck into my arm. It was quite the pleasure.

Because of the location and size of the one particular lesion at the base of my skull, there was some concern that cells from it would’ve seeped down into my spinal cord, setting up home and compromising its integrity somewhere down my back. If that were the case, we would have to come up with something besides the typical chemo/brain radiation scheme to take care of it, because the spinal cord fluid is, much like the brain fluid, separated from the rest of the body by a membrane (or maybe even the idea of a membrane—I think the blood/brain barrier isn’t actually a membrane per se, although the dura is . . . basically, I don’t know my anatomy all that well). Anyway, the pictures showed a clear white path of fluid all down my spine, unencumbered by any strange swellings or pushings. Of course, the MRI did remind us of a couple bone lesions in a couple of my vertebrae, but they were expected and, considering, look likely to be stable as they’re dealt with by drugs.

The other bit of news we liked the sounds of was that the lesions in my brain seem to have changed very, very slightly for the smaller and more necrotic. The large one in the base of my head looks perhaps a millimeter smaller, and a little bit dead in the middle. The test yesterday was not designed to check specifically for the brain mets—I have another brain MRI in about 3 weeks which is really designed to do that new staging (the radiation takes some time to work, so they weren’t expecting to see much yesterday)—but as Doctor Jason pointed out, we take as much information as we can possibly get, as we get it. He made it clear that things were, very slightly, calming down—but that I am still at high risk, still not to drive, still to take it easy, still to be aware of any symptoms that might bother me suddenly. Another good sign, the radiation oncologists felt, was that I myself am feeling better—much less nausea, and my headache of a couple weeks ago went away.

So—the philosophical question of the day is, then, why did I not just title this entry “Good News”?

That is a good question, and I’m not yet sure how I feel about the answer. I hit a trough in my surfing earlier this week, when my hair started to come out, when my throat started to hurt and my sense of taste hit about 30%. By about Tuesday afternoon, I realized that the things I was eating I theoretically liked a lot . . . but they were mostly just texture. By my infusion Thursday, and the incredibly busy day at the SCCA that made me be moved 3 times in the 8 hours I was there, I was tired and grumpy.

But even in the trough, I recognized a deep joy in life. We have troughs—we have days, sometimes many days—where the surface is hard, is unpleasant. But it’s a wave, a cycle. And I knew, below my disgruntlement, that I was good—that I was happy—that I was strong—that I was getting well.

Also, I still very much believe that my cancer diagnosis was not bad news, it was simply news. Yes, we’re human, and we are emotional creatures, and so there was some euphoria in the fact of my three metastatic diagnoses, and I did find (still do), the awful, awful pictures and cautions genuinely hilarious. They were just too much to not be. But if that’s not bad news, is news of a clear spinal column good news? I guess, to be fair, it’s not—it too is just news.

Don’t get me wrong—I am thrilled with the news, because I hoped for it, because I expected it, because it is our goal. Because this is the news we need and want and pray for if I am to live through this, if I am to learn life from this experience and not death. And I do want to learn life from this—I do very much want to come from this experience with a deeper understanding of love and relationship and purpose and interaction. And I want to ride again, and travel again, and drive again, and expand my physical world again back out from the beautiful, comfortable, cozy and well-cared for, but limited position it is in right now.

So for now, News Trending in the Direction of Our Goal.

Second Chemo

I have my second chemo today, and again it’s going to be long (but not as long as the 14 hours I was away from home last week). I start with a blood draw at 1:20pm, then my infusion is scheduled for 2:00pm. I’ll probably lie there on my bed, snacking, dozing, watching movies, reading and piddling a lot, until 8:30 or 9:00pm. I’m still getting an extra 3-4 hours of hydration (probably for a few weeks yet) to keep my kidneys moist, so that takes some time. I’m not convinced that I’m ready to ask for Sandy to “push in my Benadryl really fast!” yet, but maybe sometime soon.

The grind, as it were, has begun a bit—Ian and I are a little short-tempered with each other, and with having a puppy (of course, there’s not really ever a good time for that, but it’s easy to forget when you see their fuzzy faces and goofy, disjointed galumphing). We’re both eminently reasonable people, however, and so we’re doing our best to keep things even keel.

We cut off several inches of my hair last night—it’s about a chin-length bob right now—because I wasn’t quite ready to shave, and yet it’s coming out by the handfuls now. I still seem to have about half of it . . . but ask me in two more days. I am planning to get a wig or two—they’re fun, plus it’s occasionally nice to not have random people automatically know you’re on chemo.

We also saw The Kingdom of the Crystal Skull last night at Cinerama, and I enjoyed it. I like it when entertainment wraps up nicely.

Constipation

For about the last 24 hours now, I’ve been singing “constipation will destroy ya”, to the theme of Paranoia Will Destroy Ya. It turns out that cancer treatment and the road to discovery about life, meaning, usefulness etc, is not always full of beautiful philosophy and thoughtful words.

Some of it sucks.

The hair falling out part actually doesn’t suck like this does—hair falls out. We know that. It grows back—probably (the head radiation is new for me and I’m not sure what my future hirsuteness actually contains at my dosages)—but it’s months from now, so there’s no point in worrying or fretting. Enjoy the fascination of pulling, and let it go (although I’ve been pulling it out and dropping it on the floor, to pick it up when I’m bored, and Hoover this morning was way too interested in what was going on. That was a bit gross, having him snuffling around at my hairy feet).

Anyway, it is one of the drawbacks of the fast-acting Western prescription medications that they can be so effective in some ways (seriously, overnight with the thrush, within 15 minutes with the antinausea), and yet their effectiveness is . . . not really compromised, because they are effective . . . but rather enhanced by lots and lots of side effects. And one of the enhancements, for me at least, seems to have been constipation.

Last week I had a day where I got rid of a lot, and boy was it a relief, and I had high hopes for a turned corner. But then it became clear that it wasn’t the beginning of a new practice—I had another couple days when I didn’t get rid of anything. I can tell, too—not only can I not feel my hipbones when I lie on my stomach and they theoretically press into the floor; I can’t even feel them when I lie on my back in bed, because of the curve of my lower abs.

Now, if I weren’t hungry, this would be much less of a problem. But I am hungry. My stomach is fine—it empties like usual into my bowls, and growls, and the dexamethazone helps it insist on regular feedings . . . but then things kind of stop. I am a bit gassy still—I know there’s a modicum of activity going on down there—but it’s nothing like the oh-so-longed-for days of morning regularity.

Yesterday was truly torture. Yesterday was two or three days after the last release, and it was time. My body knew it was time. My brain knew it was time. My husband, hearing my moaning before he was able to escape to work, knew it was time. But oh, the sphincter didn’t want to help. Things were plugged up down there, and it took as much force of will as force of muscle, over a period of about an hour, to actually get anything to happen. When it did, it was two days’ worth at least, and clogged the toilet (not, thankfully, to overflowing). But it was a hard job. I sat, and moaned, and cried, and sweated (more than I have in months), and ached, and knew that I simply had to get through it. I even went so far as to bring my decaf latte—a last resort for softening things up—into the bathroom with me (normally: food in bathroom=serious yuck).

The relief was beatific, however. Angels sang, the rain turned to golden light streaming in my windows, the dogs came to my feet as lambs and writhed in a frenzy of exultant joy. I basked for hours, until I ate again and felt my belly start to bulge.

I do have some options for dealing with this. It does seem that, for the time being at least, I am free from actual blockages—things are just slow. So I’ve been taking high doses of Senna, of Colace, of Milk of Magnesia and Miralax. I eat a lot of prunes, drink a lot of grape juice and hot water with lemon, and try to focus on fresh fruits and veggies. This morning I didn’t feel nauseated when I woke up, so I chose not to take my Zofran, which ultimately is probably the way to go.

Ian pointed out that, out of all that could be bad and wrong about what I’m going through right now, this constipation is a bit ironic, and he’s right. The simplest things can lay you low.

Shedding

It seems that my full-brain radiation treatments have finally gone to my hair. Starting yesterday afternoon, when I ran my hand along my head near my ears, clumps of hair came out. No bald spots yet—I’m starting from a pretty good place—but it’s time to look into wigs. I know it’s radiation baldness and not chemo baldness because chemo baldness feels different—like the follicles just aren’t big enough to support life. It kind of hurts until the hair’s gone. It also takes a bit longer, so if there’s any hair left in a couple weeks, chemo will take care of it. In the meantime, I’m suddenly plunged back into the sort of disgusted fascination of pulling the hair out of my head and collecting it in soft piles. It’s a little like picking off scabs, the fascination. Like, how am I producing all this? And how easy it is to get rid of it!

I also have a bit of a sore throat today, and sore mouth. As those were also listed as possible side-effects of the head radiation, I think it’s likely they’re related. The thrush seems to have been cleared up capitally by the prescription, but nevertheless I think it’s probably in my best interests to enjoy the rich gentleness of the lasagnas people have been bringing us instead of filling up on spicy fish tacos every day.

Doctor-Patient Relationships

I think of myself as a pretty egalitarian person. I have friends with a variety of interests, and a variety of strengths, and in general I feel that we humans are all equal, so I don’t carry a lot of judgment of people who live their lives differently than I live mine. We all have different circumstances, different strengths, different challenges and struggles. We’ve all made different choices about our paths, and we all have different interests and foci that we find important, and that make culture and society such a full and fascinating place.

We can’t possibly know what others around us are truly feeling about their lives—cancer may be easy for me, hard for others. A seemingly excellent, interesting job may be easy for some, hard for others. I cannot assume that my challenges are more important to me than other people’s challenges are to them. It’s an issue that comes up occasionally, because cancer has such hype, but I try to be clear: what challenges you are going through are as big to you as my challenges are to me, and giving me dispensation because my challenge is obvious gives cancer way more power than it deserves.

This is not to say that judgment never comes in—back to the question of choice and control, it’s pretty easy to deem someone’s response to a situation improper simply because we would’ve done something differently. I think this is frequently where people get angry at one another—when one person feels a choice was made without consultation, and which can therefore feel like a judgment. Your idea was going to be bad, so I simply didn’t consult you. I do like to be consulted—it helps with the necessary illusion that we employ most of the time—of some sense of being in charge of our lives.

But these are pretty day-to-day situations. I don’t have a boss, I’m not generally in an environment where I have to even pretend that I think someone’s ideas—and therefore another self—are superior to me. In fact I do like learning, and am avid to pick up skill sets I didn’t have before from experts in their fields, and I feel no sense of inferiority.

Doctor-patient relationships, however, are not egalitarian. I understand this, but I’m not entirely comfortable with it. First of all, when someone consults a doctor, it’s for a basic, fundamental need: health. Without health, without our bodies as our allies, life—choices, activities, relationships—is much more difficult. And so every meeting with a doctor, even a routine physical, can be fraught with tension. Maybe my cholesterol will be high. Maybe the fatigue I’ve been feeling is a sign of something larger than busy days at work and a lack of sleep. Maybe that rash on the back of my arm is melanoma, not just dry skin. It’s easy to freak out.

And then you have the known serious problems, and the real necessity to see highly trained specialists, and the gulf widens. As a linguist, I cannot ignore the semantic framework that also accompanies the relationship: doctors spend years in medical school, and they earn the right to be called “Doctor”. And you, the patient, are “Calin”. Even the most Northwest-casual doctor-patient relationship has that dichotomy. I do now have a couple of doctor friends, and we don’t refer to them as “Doctor” except in fun, like “Doctor Tess”. It’s helped a bit, for me to feel more equal in my skin, to know that they are bright, motivated people like myself, who have simply chosen to focus their supreme skills and abilities in a different way than I have.

But it is strange to be in a dichotomous situation where the only real difference between me and the person helping me is some education and a need. The residents for my needed specialties right now are my age or a little younger, the full doctors are my age. It’s one thing to look at someone who could be your father and call him Dr. Livingston and appreciate how much older and wiser and more knowledgeable than you he is, but it’s quite different to look at Dr. Specht and think of her 18-month-old and wish you could simply be friends and call her Jennifer. I appreciate being able to call Dr. Rockhill Jason, and I appreciate knowing his family. But I found it a little bit difficult to switch to calling the first resident we spent a lot of time with Dr. Loiselle instead of just Chris. He seems like a nice guy—we’d probably like to hang out in different circumstances.

I read once of someone choosing to change her own medical lexicon, calling herself a “client” instead of a “patient”. It makes a lot of sense to me—she is contracting with someone for information and assistance, but is choosing semantically not to lower her value as a person because of her needs. However, “client” does seem a little aloof, too.

There is an obvious comfort in being a patient, in being taken care of, and having a doctor use her considerable skill and knowledge to help you do the right thing. It’s a comfort I struggle with a little, because I am used to making my own decisions and thinking my own thoughts. But I am also coming to recognize that there are clear times when experts deserve our full attention, and our full commitment to them.

Maybe someday Jennifer and Chris and I will all be friends, but probably not. But that’s okay.

Solstice Party

Hello readers—we are going to be throwing our (almost) annual Solstice Party on Saturday, 21 June. I’ve sent out the Evite to as many locals as I could think of—if I somehow don’t have your email address and you’re in town and would like to attend, please drop me a line and I’ll add you. We’d love to see everyone! And of course the weather will be good . . .

New York Times Article

Since Patrick Swayze developed pancreatic cancer, and Ted Kennedy developed a brain tumor, cancer has been in the news a bit more than usual lately. Both of these forms of cancer are notoriously difficult to “cure”, much more so than a body full of metastasized breast cancer. An article in the New York Times Sunday paper this morning discussed (without speaking to either man) their responses, and cancer responses in general. It was interesting, yes, but I found myself disagreeing with a lot of the hype. I guess I’d call it hype, because there is a lot of hype with cancer these days. It’s become a pretty common disease, in some ways kind of like a long-term, serious cold—and it’s also become big business.

Of course breast cancer has been big business for the last decade or so, with pink ribbons everywhere and Race for the Cure and Athena water—and all of these organizations have been hugely helpful to thousands of women and their families, and I have nothing against them at all. But as I’ve said, I have not jumped on the cancer bandwagon that they represent.

As for the commonality of cancer these days, I think that’s one of the reasons why the infusion nurses enjoy their jobs. No longer are people in their care because their cases are terminal—in fact, the SCCA has recently extended the hours of the infusion center to 10:00 pm because a lot of people are coming in to get their treatments after work. The patients arrive, chat with each other about their lives and their families, what they like to cook for dinner, where they’re taking vacations, their jobs. It’s become a bit of a six-month social hour, and for the most part patients seem to see it as a time to relax and be cared for and have some down time. Attitude is important, of course.

My nurse, Sandy, also told me, while she slowly gave me my Benadryl injection and I went, 30 seconds in, totally loopy (like, room shifting around, couldn’t shut up, but couldn’t stay awake), that some of her younger clients urge her to push it in fast—just for the rush. So even the treatments have some benefits.

But the thing in the article that I did not agree with was the interpretation of the public response people are giving to their cancers. For example, Patrick Swayze just showed up at a Laker game in LA with his wife, looking fit and chiseled-jawed, and Ted Kennedy recently gave a thumbs up and then raced in a sailboat race. Referring to the event, a doctor said “‘If Ted Kennedy wanted to stick up his middle finger,’ Dr. Lerner added, ‘that would be the more appropriate finger, but he’s doing what he is supposed to.’”

Well, how do we know? Maybe he’s “doing what he is supposed to,” but maybe he’s doing what he feels. Maybe he was excited to be boating—I know it makes me feel great—and maybe he truly feels good right now. Maybe he’s okay with his road and its curves and U-turns and hills (an alternative metaphor offered in the article to the typical “fight a battle” one, which, as I’ve pointed out as well, pits you against an enemy and someone is going to lose), and maybe he was expressing his true beliefs about his case.

Yes, it’s true that cancer can be incredibly difficult for the friends and family and strangers around—at times, in ways, much more difficult than for the actual person experiencing the disease and the often difficult therapies. But that doesn’t mean that a cancer patient is being dishonest when she or he is being “strong,” or “optimistic,” or “funny.” Those things are all at least as much a part of me as fear and sadness, and lately I’ve been gratified to find that they’re been much more.

“Putting a brave face on a difficult time” is perhaps just living life. Honestly and wholeheartedly.