Memorial Day Weekend Last Year

I started this entry a couple days ago—that is, I wrote the title, saved it, and haven't had a chance to get back to it until now. The gist of it was going to be that last year Memorial Day Weekend I spent 10 minutes every morning getting my whole brain irradiated, among other things. I have, because it turns out I'm not, at heart, a tidy person, left my mask on the floor of my study since I brought it home. One year ago.

Also one year ago, I didn't have the breath or the energy to walk very far at all—my girlfriends were all in town, and we took the boat over to Luther Burbank Park on Mercer Island, and I was winded and spent by the time we reached shore. This year, we took L&S and our two dogs to Luther Burbank, and I was able to ramble all over the park, up hills and down, with no effort.

Last year, we girls all had breakfast one morning at Voula's, and my friend A (a Brooklynite), commented that she wished she'd known how close it was—she would've walked. It was less than a mile, and there's no way I could've made it. This year, I wanted sushi Sunday evening, and I wanted a walk, and when our local place turned out to be closed, never mind what they published on their website, I decided to walk to a different place in Fremont, a half-mile further.

Basically, night and day.

Today I got some information that made me pause and worry, questioning the evidence of my senses, the fast-coming, overlapping, vibrant nows that I've been experiencing. Speed boating with tropical drinks (turns out a "staycation" with the Taylors is like a trip to paradise), hikes in verdant greenspaces with two (almost always) awesome dogs, a trip to the spa with my mother and full-body scrubs to release all my little hairs, and yesterday, jumping again in my riding lesson. I tell you, it was awesome. A year and a half of staying on the ground and practicing simple riding technique, and building my strength, really made the jumping easy. Basically, I feel GREAT.

But, my tumor marker score, which has been steadily dropping for the last year, went up last week. Not by much, just one point. But it was 49, and now it's 50. And 49 feels disproportionately closer to 37 than 50 does.

Even I, the patient, the one expected to panic about rising numbers, realize that one point isn't very much (even while I feel disappointed that it didn't go down, and tired of the whole cancer thing). And fortunately, I live with a husband who does stock assessments for a living, of populations that cannot be counted outright—that must be sampled. The tumor marker test is also, more or less, measuring a sample, and the fact that there is a 37 point range even within "normal" means something. And my marker, when it was being sampled regularly several years ago, showed up to a 7 point range in scores. Granted, that's when my population was a subset of the normal boundaries, rather than an abundance.

At any rate, before I get too mired in probably erroneous statistical concepts that I have no right or education to present, I will just say this: one point up is not remotely enough evidence.

Tomorrow we head back to Austin—me to help paint the new home of our friends there, and Ian to dork out on the couch with J, and all of us to eat a lot of barbeque and drink Pimms. And I am going to spend all my moments there.

Uh, Oops.

I have always liked to sprinkle a bit of vanilla powder on top of my lattes at the Essential Baking Company, so a couple years ago, I bought some vanilla powder at the PCC and a little spice jar, and had some downstairs in the coffee kitchen. It was consolidated into the rest of the spices when we "moved" a couple years ago, and has never made its way back downstairs.

Several weeks or months ago (I specifically remember doing it, but not when), I remembered the vanilla powder, and restocked our supply at PCC, in preparation for the new coffee habit we were going to develop. I bought in bulk, and evidently, at the same time, restocked our supply of garlic powder.

You see where this is going.

This morning I prepared a beautiful latte (I've actually been cheating a little—just heating my milk up on the stove instead of steaming it, because it cuts down a lot on the time and the spatters of milk along the walls, the ceiling, and the beautiful espresso machine), scraped a little fresh nutmeg onto it, and remembered the vanilla powder upstairs. Up in the kitchen, I pulled the vanilla off the bottom shelf from among the latter letters of the alphabet (yes, I alphabetize my spices, more or less), and remembered, when looking at it anew, that the replacement vanilla powder—granted, procured several years after the original—had had a different granule. In fact, looking at the two layered in the bottle (like a rudimentary one of those sand-filled bird bottles you can put together at the state fair), I thought the newer vanilla powder actually looked a lot like granulated garlic. There was a little left over in the spice bag, though, and I looked at the twist tie, and I had clearly written "vanilla" on it. So I opened the container, sniffed it, found the smell to be inconclusive, and shook it into my coffee.

Now, coffee is fairly pungent itself, and so my first couple sips weren't screamingly different from normal coffee. But I wasn't getting any of the admittedly subtle vanilla flavor, so I opened the little bag of overage, wetted a fingertip, and tasted the contests. EW. Definitely garlic. I then pulled the jar labeled Garlic Powder off the shelf and wrenched open its sprinkle top—yep, definitely vanilla—albeit garlic-scented. I briefly attempted to pour the garlic off the vanilla powder in the original jar, but quickly saw that it was not going to be possible to get entirely unadulterated vanilla, so I dumped the whole thing into the compost bin and stuck the jar in the dishwasher. The garlic jar seemed to be entirely full of vanilla—except for the bits of garlic that had adhered to the sides of the jar—but I decided that was enough adulteration to destroy the whole lot, and that went into the compost too.

Being the non-wasteful child of my parents that I am, I attempted to continue drinking my coffee, but the garlic aftertaste, and the garlic-and-coffee burps, finally got to me and I poured it out. I'm very glad that I saw Witch Doctor Dan only yesterday and he worked on my nausea issues. I was definitely testing his work this morning.

I made myself another, smaller coffee (because I really had drunk about half of my first one), and added some sugar and no spices, to be sure and have a completely different coffee experience in my immediate sense memory, and it has been very good. I plan to refill both our garlic powder and our vanilla powder—in two separate trips to the store.

I blame chemo brain.

An Encounter

I took the dogs to the Woodland Park off-leash area after my Gyrotonic today, before leaving them at home while I went to my infusion. When I arrived at the park, the parking area was practically empty, just two other cars along the road. I usually park under the trees at the east end of the strip, but for some reason, today I drove on. I almost pulled in one other time, then finally brought my car to rest about 4 feet to the west of the second car in the lot, a rather nondescript blue sedan.

I glanced over at it as I put on the brake and turned off my lights, and noticed first that the man sitting in the passenger seat with the window down was black and wearing a white do-rag, and that the woman behind the wheel was also black (not the minority normally seen at Woodland Park). I then noticed that they did not have a dog. I am embarrassed to admit that my reflex response was fear and concern that my car would be a target when I took my dogs in to play. I told myself I was being racist, though, and stepped out of the car.

I caught the man's eye as I was grabbing the handle of the back door, to change from my wool clogs into my rubber park boots, and I said "Hello." He said hello back.

I pulled a boot out of the car, and, balancing on one foot, folded my pant leg around my ankle and stepped in.

"Can I ask you a personal question?" the man said.

"Sure," I replied, neutrally, glancing at him then reaching for my second boot.

"Do you have any experience with cancer?"

"Uh, yeah," I said, and pulled off my hat, revealing my chemo-calico peach fuzz.

"Because I just found out yesterday that I have pancreatic cancer."

He paused, and I put my boot back in the car and turned to face him. "I am so sorry," I said.

"I'm only 35 years old," he went on, "and I don't know what to do. There's just me, and my fiancée, and, I just don't know. Can you tell me anything, give me any advice, help me? I'm sorry to ask, I just . . ."

I could see the naked fear in his face, and the tears of the woman in the shadow past him in the car, and I thought what can I say? What have I distilled over the last 10 years that could offer some comfort to this man?

"Well," I said, "I've been dealing with this off and on for ten years now, since I was 26, so it no longer feels like a death sentence to me. I've lived with it, so I know I can live with it, and it's taken me a long time to get here, but for the most part now I can accept it." I thought about it for a minute. "One thing that helps is to stay in the moment. I know," I said, "that telling you not to worry is pointless." He nodded a little. "But worry doesn't do any good, because all we know is this moment, right now. This moment, the people we love, the trees here, life, that's all we have: right now. So when you do find yourself caught up in worry, stop and remember to be here, now."

"Yes," he said, "when I was 25 I didn't think about it at all, but now I feel like all my life is made up of moments, that I need to hold on to."

"Exactly. So take a deep breath and remember: 'I am here. These people love me and I love them. This is a beautiful world.'" I looked around at the light filtering through the trees, and was glad that they'd chosen this place to sit together and talk. "Another thing I've learned, I guess, is this," I went on. "Everyone has something hard that they have to do. We all have a struggle. We all have things like this cancer, and we can't know, really know, how anyone else is feeling about their hard things. There's no point in being jealous, or angry, because we all have something. Not to say that I'm not ever angry—I was, a lot, and I still am sometimes. I don't know," I continued, "if this cancer is going to kill me. Something will, and it may be this. But I don't have any control over it."

"I know!" he said. "I've been in bad situations, in gunfights, I mean, really bad situations, and I never felt like this, like it was this bad!"

"I know," I said, agreeing wholeheartedly. "You have absolutely no control over this, and it's scary!"

"Yeah, it is. It is."

"I'm not religious at all, but the last few years at least I've been thinking a lot about my spirituality," I said slowly. He nodded for me to go on. "I've come to think that there is a reason, or a purpose perhaps, for everything we experience--but that we, with our limited view, just don't have the perspective to know what that purpose is. We're too intimately involved in living our lives to step back and figure out why things are happening, what we're supposed to learn from them. We do learn, though, simply by living through the events. And we need to trust that what we have to deal with is only what we need, and only what we can handle."

As I stood there thinking of what else I could possibly share with him to help, I remembered something I'd read in a book by Malcolm Gladwell, several months ago, about class differences in talking to doctors. Basically, upper middle class parents encouraged their children, from early on, to feel comfortable asking their doctors any questions that they might have. Minorities and poorer mothers, though (usually the mothers in those families), taught their children that doctors were authority figures who should be respected without question. This man has so many strikes against him already—socially, as well as having virulent pancreatic cancer—that I wanted to try and give him as many tools as possible.

"When you talk to your doctors and nurses," I said, "don't be shy about asking lots of questions."

"Okay."

"When I first started out, I thought 'Gosh, my doctor's from Harvard! He must know everything!', but the thing is, even the best, smartest, most dedicated, nicest doctor, is not you. Only you are an expert on you. You must look out for yourself. Ask questions, ask for what you need. You can keep track of you—they are all keeping track of lots and lots of people."

"I knew something was up yesterday when, all of a sudden, the nurses started being really nice, like 'is your blanket warm enough?' and 'can I bring you some water?'"

"Yeah," I said, "I know. But they are nice, and they do care about you. One last thing, I guess, would be this. Trust the people around you. Trust their love. Allow them to help you. Allow them to show you their love."

"Okay, I will. I will do that." He reached out and we shook hands.

His fiancée leaned closer to the window and nodded, tears on her cheeks.

"Thank you," he said, and I smiled and went to get my dogs.

They were still there in the car when we got back, and after I put the dogs away, I noticed that his window was still open. "One more thing," I said. "Do some visualization. When you go to bed at night, picture yourself surrounded by light, being supported by light." He nodded. "We're all part of one thing here," I said, somewhat clumsily. "We're all made up of the same atoms. So picture yourself as a part of that greater whole, not alone, but cradled in light. It helps me."

"Thank you so much," he said, then, "Thank you for parking there."

No, thank you, Universe, for allowing me the great privilege to help someone begin his own healing.

Off the Wagon

I first became addicted to coffee at age 17, when I went away to Lewis and Clark College. I had had some prior experiences in high school--my father had created a recipe (following the tinned "General Foods International Coffees" trend) for instant, jitter-inducing mint mochas (instant coffee, non-dairy creamer, sugar, cocoa powder, and pulverized-in-the-blender Starlite mints), which I would drink when I had a paper to write, and I did come prepared to college with a recycled plastic Costco nut jar full of the stuff, and we all did drink it. We were in college, though, and more sophisticated than Maple Valley farmers, so we went primarily for real beans and the personal grinder (thanks, Anne!). I had received a black mug with a white piano keyboard printed on it as a graduation present, and for the first quarter of school, late August to just before Thanksgiving, I never once washed it. I used it a lot, so I'm guessing there wasn't too much time for bacteria to grow, and the inside of the mug was likewise black, so it hid a lot of grossness, but I was also young and stupid. At any rate, I had coffee in it every morning, and hot chocolate or, more frequently as the term went on and I eased out of the home fold, hot chocolate with peppermint schnapps (young drinkers don't usually start out with Gibsons, in my experience).

The coffee we bought was trendy flavored beans from the local (rather grotty) Fred Meyer--Irish Cream, Hazelnut, French Vanilla--and was prepared in the shared floor kitchen in a little 4-cup Mr Coffee. My sophomore year, when I became a Resident Assistant on my own floor, I obtained my own small Mr Coffee. Every morning I would drink half of my carafe hot, and put the rest in the fridge. When I came back to my room in the afternoon and needed a pick-me-up, the rest of my morning coffee was icy-cold and ready for enjoyment.

Somewhere during my late-sophomore/early junior year the latte, and maybe more specifically for me the mocha, took off. While I was in Kenya my junior year, I actually had a dream about being back in Oregon and ordering a raspberry mocha. I had never had one before, and when I got back to the States, I tried it. Sweet, but very good.

Sometime my senior year I believe, I acquired my first espresso machine--a simple Krups one that would make one latte using just steam power--enough to drip through the coffee grounds for a shot, and enough to steam a small amount of milk. I also decided that chocolate morning and evening wasn't the healthiest way to live my life, and started drinking plain lattes.

Ah, the homemade latte.

I updated my espresso machines a couple times (wore one out) and purchased a stove-top maker to fill in blanks between actual machines (it's also great for camping).

Then, when I was going through my 3rd cancer bout, in fall/winter 2006/2007, I decided I didn't want to be addicted to anything anymore, and so I began the process of cutting coffee out of my life completely. After a few fits and starts (coffee in our Scottish B&Bs in June of 2007 was shockingly good--French roast French presses and cream every morning), I got over the physical addiction, and stayed pretty much caffeine-free for about 18 months.

I have been drinking decaf lattes most mornings for the last year or so, and enjoying both the ritual of the stovetop maker and the taste of the milky bitterness, but something was missing. And then I saw Taya to get some bodywork done soon after recovering from a nasty cold, and she said I felt spongy--like I needed to drink a lot of water and take a diuretic for a couple days--and I thought "Well, regular coffee is the best diuretic I know," and so Ian and I agreed it was time for the next chapter in our espresso-drinking lives: the La Pavoni hand-lever espresso and cappucino machine. Not only does it look like a diving bell; it also makes excellent espresso. Ian has taken to have a decaf in the evenings; we're both having caffs in the mornings.

I argued with myself for awhile about whether or not coffee was something I wanted to drink again--if this was a physical habit I wanted to encourage again. After all, I do believe there are important physical and psychological benefits to be found in not being addicted to anything, and I did, on the couple mornings over the last 18 months when I was too sick to want to get up, appreciate not having a withdrawal headache when I didn't get my fix. Nevertheless, like all good addicts, I was able to make the arguments necessary to get what I craved: i.e. a return to the nipple of the dark goddess. Coffee is pretty much the single most available drug on the planet. I shouldn't have any trouble feeding my habit.

And isn't the La Pavoni a beauty?

Nothing Much to Report

I just realized that my last post was over a week ago! If it hadn't been good news, I'd feel worse about leaving you all in the lurch, but maybe a lurch isn't so bad if you've been left with a good taste in your mouth.

Anyway, this last week I've been enjoying my good health by 1) no longer having any nausea whatsoever because I seem to 2) no longer have any anxiety. Having my next MRI scheduled for the end of June, instead of the end of summer, helps a lot in my peace of mind—I won't lie (if I didn't lie to you about constipation, I shouldn't lie to you about peace of mind either). But yeah, really I've been feeling well. I still seem to need nine hours of sleep per night, and I haven't really been getting that this week, but I've been doing okay.

In stuff unrelated to health, we took both our mothers and their consorts out to lunch by boat, and Ian's brother and sister-in-law came with their newly adopted baby (although they drove, because our boat has a passenger capacity of 8 and the new baby tipped the scales)—and here's the kicker—we went on Saturday, and managed to beat some of the crazy mom-brunch crowd, and BluWater Bistro over in Kirkland still gave the three moms free mimosas, even though it was a day early.

Let's see . . . one of the crazy number of babies/potential babies in our lives was born on May 3 (8 days late), the next to come (we expect), was due on the 5^th and seems pretty comfy just hanging out inside. Twins were born in Maine, and a boy in DC. We had friends for dinner last night who are due 4 June, and just found out that someone else is expecting, to add to my riding instructor (not currently my riding instructor) and my Gyrotonic instructor, due at the end of the summer. Is it really just my circle, or is everyone having a baby these days???

In health news, I seem to be cycling through some old physical traumas as a result of my craniosacral work. I need to ask how long it usually takes for things to show up after a treatment. Beth likes to see me once every two weeks, so I'm assuming things show up by about a week and then resolve by two weeks, ready for the next work. These "trauma revisits" are generally shorter and milder than the original experience was. Two things today (one week out) were a migraine—the first I've had in weeks and relatively mild—which happened right as I finished tacking up my horse (my instructor generously postponed my lesson 30 minutes for my vision to resolve and then I rode . . . which made the lesson happen at the time I'm usually ready. Today I had actually made it to the barn on time, early even, for the first time in weeks—no, says the Universe, 11:00am is too early for you to ride . . .), and my sore/stiff/out-of-alignment sacrum switched from aching on the left side, where it was for 3 days or so, to aching on the right side. I could call Taya to fix it, I suppose, but I'd like to give it a couple days to work itself out in its own time.

Anyway, aside from the fact that I'm ready to do a bit of sunbathing in the backyard and nature is currently keeping that from happening, things are going very well here these days.

Early MRI Results

I'm hungry, because an MRI scheduled at noon with a doctor follow-up at 2:00pm makes for a missed lunch, but I just got back and wanted to let you all know that my MRI looks like the other ones have, some things slightly smaller and other things the same. In other words, the anxiety and nausea that I've been feeling have no cause in my brain, as far as Dr Jason can see. In other words, my anxiety and nausea have most likely been causing each other. And I know that Dr Jason et al my Western doctors don't really believe Witch Doctor Dan is doing anything; but I happen to believe wholeheartedly that he can help end the cycle of anxiety and nausea. If only I could get in to see him, now that he's gotten so popular (okay, okay, I can—I have an appointment in less than two weeks, and I think I'll be able to survive until then).

To make sure we're keeping on top of things, my next MRI will be only six weeks away. This is not designed to keep me on edge; rather, Dr Jason wants to make sure, now that we're a year out, that if things do start to move, we'll catch them early, and try other things. I'm good with this plan, particularly as it continues to allow me to go to Austin at the end of this month, the San Juans at the beginning of July, and Dr Jason's parents' place in Idaho in mid-July (can't wait!).

Frog Eye

This photo was taken with my cell phone in the car today right after my eye appointment. As you can see, only one eye needed to be dilated. This may have contributed to the sudden nausea I felt, right as the dilation reached its peak. I can't help thinking my mismatched eyesight (20-20 in the left eye compared to an impaired 20-70 in the right) is, in general, giving me the queasies. It lasted for quite a while, too--Natalie, one of my Gyrotonics instructors, said it looked like I had a frog eye. It was pretty weird closing first one eye and then the other--I could totally tell the difference in the amount of light each was letting in.

Note--Having just looked at Spackle's eye very close in, as he sits six inches from my face and whines about his dinner, I would say my eye looks very like a DOG eye, instead of a FROG eye.

Management

For a long time, the job of cancer recovery was pretty basic, pretty ho-hum, pretty non-time consuming. I mean, I had the general cycle of weeks that took some small amount of work simply for existence—the day at the clinic, the night without sleep, the day of wired noodlyness, the day of exhaustion, and then four days of increasing (relative) normalcy until it all started again. Nevertheless, even after several months, I don't think I really understood what kind of effect those drugs were having on me physically. Psychologically, I don't think it was all that hard.

Recently, though, things have been hard. Starting in January I added eyedrops to my daily drug regimen. About a month and a half ago I added, briefly, pseudoephedrine (which is no longer really an over the counter drug because it's evidently one of the ingredients in meth—little rant here—so even though my left ear was clogged and messing with my equilibrium, I couldn't refill my box at the local Bartell's because the pharmacy was closed after 4 on a Sunday. And when I tried to buy the 96 pill pack, which would've lessened my issues considerably, I was told—two different days in a row—that it was out of stock, but should be in soon. And so I asked to buy two packages of 24 and they said they could only sell me one and a time. And I got mad, and before I could even get really mad, another pharmacist said to sell me two packages. And then I switched to Claritin a couple days later anyway. And now I could make some meth myself, with almost two full packs of pseudoephedrine. And my ear is still a bit full of fluid, even with drugs. Any drugs. Rant finished.).

This week I had an appointment this morning with the eye doc, tomorrow I have my moved-up MRI to see if all the nausea I've been feeling lately is related to brain activity, Wednesday I see the craniosacral person (okay, after I get to horseback ride for an hour), Thursday I have an infusion. Friday I collapse in utter exhaustion. And I have all these things to take, and they all come at different times of day and in different amounts! I think it's time for an updated meds/supplements list.

At the SCCA:

Weekly Premed:

1 Zofran

Weekly Infusions:

2 Navelbine

3 Herceptin

Monthly:

4 Lupron

Occasionally:

5 Pamidronate

At Home:

Daily:

6 Bactrim

7 Protonix

8 Folic Acid

9 Claritin

Twice Daily:

10 B-6

11 Calcium

Four X Per Week:

12 Neupogen

Eyes:

Four X Per Day

13 PredForte (stopped today, replaced by other drop because my eye pressure is too high because of the steroid in PredForte)

Two X Per Day:

14 Xybrom

15 Alphagan P

If Needed, Eyes or Body:

16, 17, 18 Various other drops for various other purposes (purpi?)

19 Compazine

20 Zofran (pill form)

These last two have been needed quite a bit of late, so I have to make sure I have them in my purse. Along with various eyedrops. Frankly, I'm bored with this post now. I'm bored just thinking about all this managerial tedium. I really, really wish I could have a bit of time off from it. But . . . not for the moment.

 

Outside

I woke up feeling pretty well today—no nausea first thing, and with energy. Of course, I had my infusion yesterday evening, including my IV Zofran, so who knows. But then again, that's one difference between the mechanical nausea (I'll call it) I've experienced this week and the same thing a year ago—last year, every morning from early April for about six weeks, I woke up, rolled over, coughed, and had to go throw up. I don't think it's been happening that first-thing this year. Regardless, a little while after I finished my latte, I was feeling a bit queasy (but this was normal queasy—you see—I'm in a constant state of observation and definition over here, and it's getting a bit old). I had a piece of bread with peanut butter and banana—no honey, because there's no point in sticking up the house when it's so easy to wipe down—then tacked up the dogs and walked off to Fremont to get a baby gift for a shower that I'm attending tomorrow.

Once we returned home (only a moderate apeshit from Hoover when he saw a dog parked in front of the kids' store—the dog was far enough away and I'd brought a squirt bottle and was beaning Hoover between the eyes), I did a strenuous 10 minutes of clipping all the dead branches off of a not-quite-drought-resistant tree in our yard, then 35 minutes of lawn-mowing with our old, rusty, dull push mower.

It seems that a 2 ½ mile walk followed by a workout in the yard helps one feel pretty darn good.