Thursday, December 24, 2009

Cycle 5, Day 9: Christmas Eve canyon walk

This is a pretty different Christmas for us. For the second year running, Joe and I are not exchanging presents. This is financial in origin, but really, this year, we're so grateful for each other that no other gift matters.

Joe had a rough night last night. Yesterday he started having the lower back pain that is a side effect of a shot that he self-administers the day after chemo to boost his white cell production. This side effect -- sharp pain in his sacrum and femurs, where white cells are produced -- proves that the drug is working, but is excruciating. The first time this happened a couple of cycles ago, we had no idea what was going on, and Joe ended up spending the night in the hospital. It took them 4 hours in the ER and dilaudid, morphine, phentanyl and ativan to knock the pain out. This time, we were ready, so started Joe on vicodin yesterday afternoon. This worked, but every few hours, the pain was back, and we were awake, trying to get him comfortable, out of agony and back to sleep.

We slept in this morning (until 8, which believe me, is late for us), made the lasagne for Christmas Eve dinner, then headed into the woods in Marinwood with Jasper for a little amble. The last time we walked out at Blackstone Canyon, Joe took us up some ridiculous deer-track, straight uphill, breaking trail, sliding down steep slopes in his usual style. What a change today. Joe's red blood cell count is so low that it was pretty slow-going. We turned around long before we would have normally. Joe was really not fine, not fully recovered, and felt each step deep in his poor bones. But we did it anyway, shared the sweetness of that lush, shady canyon, looking forward to the day when we will once more crash with abandon up and down the hills.

Joe now sleeps sweetly on the couch, exhausted by last night and by the last 13 weeks of chemo. I keep watch, treasuring every second of this time together, this Christmas like no other.

Sunday, December 20, 2009

Just Leaving the House is More and More Like Backpacking

One of the many things I love about backpacking is the ten essentials, the items you're always supposed to have with you to ensure your survival in case the weather goes south and/or you lose your way. There is a certain exhilarating liberation about only having access to what you brought and to bringing only those things that are essential and functional. Anything can happen and you're good: you're set for a couple of days. I'm wild about that kind of self-sufficiency. When my bag is packed, I'm ready for anything. Bring it.

And it's a good thing I like that self-sufficiency, because it's been occurring to me that every time I leave the house nowadays, it's a little bit more and more like backpacking.

Of course, since I don't want to buy plastic, I bring along my Klean Kanteen. Since I don't want my coffee habit to add to the landfill, I tote a thermal cup. Thanks to the generous folks at ToGoWare who gifted my work with sets for each of us, I carry my own little kit of utensils -- fork, spoon, knife and chop-sticks. And who leaves the house anymore without a reusable shopping bag or two, so I'm carrying those, too. The days of a purse just big enough to accommodate my phone, calendar/notebook, writing implements, wallet, lipstick, compact are over. This kind of self-sufficiency demands a bigger bag, no way around it.

I'm not complaining. I like it. I think it makes sense. But I also think it's funny, and an interesting aspect of modern life, where we're like nomadic cavemen carrying all this shit around. I'm going to add a lighter to the mix, just for fun. You never know when you might need fire.

Saturday, December 19, 2009

Cycle 5, Day 4: A fine day (except for the mania and nausea)

Today was a fine day, all things considered. Joe is mid-way through the course of prednisone that is the final drug of the chemo; the prednisone tends to make him feel super-manic and really hungry. At the same time, he is weak and generally nauseous. It completely messes with him: food is disgusting and yet he's starving; if he's eating, he feels fine; as soon as he stops eating, then he feels gross. We just have to get through this first ten days, then everything gets better -- and guess what, we only have to do this one more time. That makes it so much more bearable!

Today was a good day, though. We went to Fairfax and hung out with Lisa, Alex and Nicholas for a bit (that's Alex and Joe pictured above, life-long friends, at Revolution 9, sharing the cozy couch with a gigantic stuffed Totoro). From there, we made our first visit to the medical marijuana dispensary. Everyone in there is trippy and SO nice. And I love how they refer to everything as medicine. Which, of course, it is. Incredible, and our right as Californians. As instructed, I'm hanging on to the receipt for the weed-infused honey we bought, just in case The Man tries to bust our chops. I left the dispensary filled with gratitude for the people who put themselves on the line to make this possible - to defend the availability of pot to patients.

A sure cure, we've learned, for Joe's nausea and jumping-bean mind is long busy stretches outside. We spent a delightful several hours in the garden after we got home from Fairfax. We took down frost-damaged veggies, weeded, spread mulch, raked leaves, fed the compost. Utter bliss. And even in this darkest time of the year, such sweet things to eat: carrots and the last pomegranates from the tree, delicious.

Now that it's nighttime and we've had our dinner and are settling in for more of The Wire and then early to bed, I think we're both satisfied and happy about this day. It wasn't easy for Joe. Chemo sucks, but with friends and plants and each other, we're sailing on through, as happy as can be.

My New Diet

Yes, of course it's true that I've gained weight recently. With all the hullabaloo in our lives lately, I've been a very bad patient myself, forgetting to take my daily thyroid medication, letting the prescription run out, having none, no pills, for over a week. Not the smartest move. So I've noticed my jeans a little snugger, yoga pants a little less forgiving. The good news is that I've re-upped my thyroid meds and am back on the straight, if not the narrow.

The new diet has nothing to do with weight or food, however.

Instead, for the past 38 days I've been on a new diet of daily poetry, working my way through a book of poems by Mary Oliver, "Why I Wake Early." I first heard Mary Oliver read aloud in a yoga class, a poem about rushing into the garden in the early hours of morning, in her nightgown, to adore a peony. Both Joe and I, when we heard those lines, recognized ourselves, our barefoot crazy-eyed wonder and passion for flowers and bugs. Perfection. Delight.

I've owned this book of poems for some time, periodically taking it down and reading one or two, but never feeling as though the way to proceed was to read it all at one go. Too blurry.

Recently, an inspired yoga teacher read Oliver in class, so I took her off the shelf. Since then, I've read one poem a day, just one, slowly, and sometimes repeatedly, savoring the phrasing and imagery, thinking about its construction, the deliberate pacing. I try to read in the morning, while my first cup of coffee is still hot, before the rush-rush of the day begins.

Amidst the hullabaloo, this daily reading provides deep solace. It is, for now, my form of meditation.

Recently I purchased a second book of Oliver, looking ahead to the day when my daily practice would exhaust my store of poems. I will eventually move on to someone else, I suppose, but for now, her words are the ones I need to hear, the ones that re-train my eye on everything I love most - birds, frogs, snakes, the morning and joy.

This morning's reading put me in a genius frame of mind for the rest of the day. It's one that Stefanie read us in class recently. I just can't get enough of this one, "Mindful." [Apologies that I cannot replicate the indentation on lines 2-4 of each stanza. Looks much prettier in the book!]

Every day
I see or hear
that more or less

kills me
with delight,
that leaves me
like a needle

in the haystack
of light.
It was what I was born for -
to look, to listen,

to lose myself
inside this soft world -
to instruct myself
over and over

in joy,
and acclamation.
Nor am I talking
about the exceptional,

the fearful, the dreadful,
the very extravagant -
but of the ordinary,
the common, the very drab,

the daily presentations.
Oh, good scholar,
I say to myself,
how can you help

but grow wise
with such teachings
as these -
the untrimmable light

of the world,
the ocean's shine,
the prayers that are made
out of grass?

Saturday, December 12, 2009

Sacrificial Tree

I heard on the radio two days ago that 30 million households in the US have cut Christmas trees, 50 million have artificial trees. And of course the artificial tree numbers are growing, as are concerns about the plastic they're made of, the lead contained in some of the older models. I suppose I understand the attraction of the artificial tree and imagine you just take it out of the box, pop it open like an umbrella, plug it in and voila. But the pagan and eco me just can't get comfortable with a plastic tree, even if it does come with lights.

Last year, for the first time, we sidestepped our annual debate on cut tree or living tree by not having a tree at all. Cutting a tree for the holiday seems murderous to Joe (which is ironic, I think, given that his line of work exists only due to tree-icide). We had cut trees when Laurent was little, but since we moved to this house we've mostly relied on living trees. Living trees obstinately don't like to be indoors, and our efforts to keep them season-to-season were not generally successful. Those that survived are planted across the street in Joe's guerrilla forest. But the truth is that I never really liked the living trees so much. They're generally sad Charlie Brown trees, unable to bear the full load of ornaments. So last year I made do with a bowl of ornaments and some lights. Man, that reads so pathetic, but at the time it satisfied.

The 2009 edition happened by accident. A couple of weeks ago we pulled the bottle-drying rack normally reserved for beer-brewing out of the garage to support some unexpected honey bottling. Once we were done, it occurred to me that the bottle-rack has an ideal shape and could serve a different, celebratory purpose.

Behold, our 2009 "tree": lots of room for holidays cards around the base, just enough space for select ornaments, and the obligatory lights. It's goofy and I love it!

Wednesday, December 9, 2009

Epiphany: now I get why the 9-5 makes me crazy

I've been trying super hard to fit everything in this year, perpetually feeling behind-the-8-ball on various obligations, trying to cram all the things I want and need to be doing into each day and feeling lame when I can't pull it off.

And hating the hell out of my job.

So duh, little drive-time epiphany: I decided to stop trying to figure out why my job bugs me so much, and start instead thinking about how I would rather spend my time. Flipping the question around like this helped me get clear about what's not working for me and why my battle to do it all is a big loser.

Consider how I would prefer to spend each day:

- 1 1/2-2 hours of yoga
- 1 - 2 hours of hiking or otherwise being outside with Jasper
- 1 hour minimum of reading
- 1 1/2 - 2 hours of watching something entertaining (not mandatory)
- 2 hours of writing and thinking
- 1 hour of Home Ec: housekeeping, gardening, beekeeping, gen'l tending

That's a 12-hour day right there. Duh. Ain't no way to do that and keep an 8+ hour a day job.

Time to play the lotto.

Tuesday, December 8, 2009

Cycle 4, Day 14: Gray Area

Behind today's door on the "Advent to Freedom" calendar that Nancy made for Joe, is a small cartoon of Keith Richards and the words, "ROCK IT!" We are doing our utmost to do just that, rock it, rock this whole cancer bullshit.

Today Joe finally heard from his oncologist about the results of the PET-scan. [I, of course, regret not having been on the call since my insatiable urge to take notes has therefore gone unmet.] Overall, the results are positive. The doctor was pleased.

But there is still Something on Joe's right tonsil. Those who've been following all of the gory details may remember that the first PET-scan, before Joe started chemo, showed spots beyond the big tumor in Joe's abdomen, one of which was on the right tonsil. That stubborn little bastard is apparently still hanging on.

Some good news: Joe will only have 6 rounds of chemo. Had the results of this PET-scan not been this positive, there was a chance of extending to 8 rounds. Joe was really clear that he would cry for two days straight if he wasn't done after 6. So that's some consolation.

And we're hanging on to how positive Dr. Maloney was on the phone to Joe.

But there's that Something.

After the chemo is finished, Joe will see an ENT to explore what's going on. The doctor today mentioned a biopsy.

So it's pretty gray, this zone we're in right now. Not 100% positive, and sure not 100% negative. But gray. And a little scary.

Last time Joe had chemo, the lovely nurse Susan told us how some people really only realize the full horror of what's happening to them when the chemo is over, and then they have something akin to post-traumatic stress disorder. When they aren't preoccupied with the poisoning of chemo, with the side effects and getting through them, then they have to deal with the emotional side of it.

With this news today, I do feel like we're in a different stage, one we didn't fully anticipate. I think we were really expecting 100% good news from the PET-scan. I didn't budget enough reserves for the fear that this latest sorta-news would unleash for me, for the scariness of this gray area.

We're still rocking it (thanks, Nancy, for the daily inspiration and reminders of your love), but god damn, we'll be so glad when this is over with.