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
something
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.

Sunday, November 29, 2009

Bee-donkulous: lessons learned from bugs this year

We've been spending a lot of time in yoga lately talking about the coming close of this year, the opportunities presented by the start of the new year. What's your vision? Who do you want to be? Where have you been this year?

This has been a crazy year for us for sure, more ups and downs than I am prepared to list here (though that list is coming, you have my word), but today's cold honey harvest is really making me think a lot about some of the big lessons I learned from bees this year:

- keeping bees entails managing conditions. The bees will do what bees do naturally - all the beekeeper is really in charge of is ensuring that the conditions are right: that the hive is dry, sizable, cozy enough. The bees do the rest. Honey just happens. This is a lesson we learned a long time ago with compost - that with the right conditions, it's something that just happens. Honey is the same deal. Actually, everything is the same deal. In yoga, when you create the conditions - set up the pose, align yourself in it, feel it -- then grace happens, illumination.

- keeping bees requires getting comfortable with death. We discovered the death of our first hive this week, but long before that we learned that beekeeping involves a little death almost every time you open the hive. Every time we approach the hive, open it up to ensure conditions are good, our intention is to do as little harm as possible, but it's virtually impossible to work the bees without crushing a few unwittingly while moving frames in and out, back and forth. Losing an entire hive (the queen died late in the season, well past when the workers could make a new one) was hard. Opening what was previously a thriving (though not our strongest) hive and hearing quiet, the place empty, was rough. Not long after the queen gave up the ghost, the entire colony died. Boy, have we lived with death this year. Three cancer diagnoses in the last twelve months -- my sister, our Jasper, our Joe. Death is always there: how much grace can we muster when we face it? That's another lesson learned from bees.

- keeping bees means letting go of what you learned from a book or a lecture and really learning through doing. No amount of classroom preparation can really teach you what you need to know - the actual Doing, the experience itself, suiting up, stoking the smoker, repeatedly opening the hive and observing -- builds the life-experience that is the real learning. As our beekeeping teacher said one day while standing in a cloud of bees, "you have to let go of knowing."

- keeping bees involves making errors (sometimes fatal) and recovering. We managed conditions to the best of our amateur ability on Hive #1 - we checked them weekly during the summer, supplemented their food in June when it was clear their stores were empty, reduced the entrance when we were concerned they were not strong enough to withstand the incursions of yellow jackets and other robbers. We watched them and did everything we could think of to keep them strong. But clearly we made errors, mis-read the signs, didn't re-queen in late summer, and now they're dead. And we recover, pouring what we learned into our attentions to the two remaining hives.

- finally, keeping bees allows deep drinking of the nectar of life. The addition of bee hives to our garden has brought us so many gifts. We are still struck dumb by how beautiful they are, how remarkable their society, how perfect their comb, and how tasty the fruit of their labor. Living with bees we sit down more often, stop and watch them as they go about their busy bee-ness, marvel at their labor of love, their ecstatic rolling in pollen. And now with a late, unexpected honey harvest, we are savoring, in the dark of winter, the bright taste of sun and flowers.

I am grateful for so many things this year, but deeply, deeply grateful to these bees, the living, the dead, and those yet to come. Without them I would have missed so much beauty this year, beauty that is literally right in front of my face. With them, I see more and more clearly, on a diet of honey and delight.

Friday, November 27, 2009

Fanmail for some freecycle

I'm so glad that Joe and I are now living in a time in which everything we were so into ten/fifteen years ago is or is closer to becoming common practice, part of the shared vocabulary: taking our own bags to the market, composting, growing our own food, conserving energy. We would have been crazy for freecycle back in those wild enviro-vegan days of our youth, as we are now, except of course, let's not forget there really wasn't the internet we have now to facilitate it. It's one of the benefits of the recession, I suppose, that people are being creative in this way, looking for ways to save money, which ends up being so much more conservative of resources.

I've been jumping around about freecycle, about the constant stream of emails that come through, people looking for things, people giving away things. So of course I decided to track what found a new home in the North Bay in one 24-hour period this week, in no particular order (although you may imagine that I am longing to categorize and sort it - kids stuff, home stuff, office stuff...):

- fireplace implements (Novato)
- red children's rug from Ikea (Central Marin)
- trike
- melon scented lotion (Greenbrae)
- glass for frame (San Anselmo)
- kid/family board games
- several large bird toys (San Rafael)
- moving boxes/packing paper
- antique freestanding mirror
- 3-ring binders
- magazines
- web camera and microphone
- marble slab
- italian language books
- men's XL shirts and one pair of shorts
- 2 book cases
- shipping boxes, packing peanuts
- wool berber rug
- headrest for auto
- candle gift sets
- 50 pendaflex folders
- Thomas roundhouse (toy)
- Fisher Price roll-arounds Drop & Roar Dinosaur

That is a whole lot of stuff that would otherwise just be sitting in someone's garage, or gone to Goodwill (where who knows what happens to it), or gone to landfill. And it's all free. There are rules about how it works of course, its own particular language. When you have something to give away, the subject line of your email reads, "OFFER [name of thing] (city where you are)." Some of the items on offer require "porch pick-up." When a poster of an item receives responses, they write back to the list that the item is PROMISED, sometimes including in the text of their message how many back-ups they have (i.e., how many other interested parties in case #1 falls through). I love the structure of it all.

I am also intrigued by the things that are posted as WANTED: cowboy boots, dehydrator, espresso machine, treadmill for walking dogs on in the winter when it's cold and dark out. I love that people in this e-group just ask for what they want. Why not? Someone might have one and be willing to give it to you.

We haven't yet posted anything. I did try to get some mason jars but was too late, but am looking around at what we might want to part with, what someone else might be able to use.

And it's all free. That's the best part of all. Free entertainment and free stuff, just running on the honor system and yahoo groups. Find a group in your area at www.freecycle.org. Super, super cool!

Wednesday, November 25, 2009

Cycle 4, Day 1: here we go!


We are now into the second half of Joe's chemo. I am aware of how ridiculous it is for me to say "we" when it is only Joe's poor body enduring this flood of chemicals, but truly this is a shared experience, not just his, not just his and mine, but also that of everyone we know and love who is along with us on this crazy, unexpected ride.

Today was another amazing experience at Kaiser. I, we, continue to be floored by the quality of the care, by the humor and compassion of the nursing staff. And they're just so much fun it's ridiculous. We spent the first hour of chemo today sitting with our nurse Susan as she regaled us with stories of her repeat visits to Thailand. For eight years she has gone to the same place for a month each year, with her husband and friends, and climbed, dived, snorkeled, eaten and chilled. Between checking Joe's vital signs and making her rounds of other patients, she filled a page in my notebook with her instructions for a perfect visit to West Railay Beach, the places we should eat, where we should stay, what not to miss. It was such a boon to travel with her, via her photos on the web, to a beautiful beach and turquoise water, filling us with longing and excitement for the adventure that we have so handsomely earned in this extremely difficult year.

Joe's regular doctor was gone for the holiday, but his replacement was amazing, stunning us with how much he knew about music, about cycling. He managed to build an almost instantaneous bond of trust with Joe by making these very subtle references (Pyrenees, criteriums, funky bass), to the point where I believe he has supplanted the original doctor in our affections. Honestly, these medical professionals caring for Joe model the very best treatment you could dream of. How great is that?

And of course, I can't let this moment go without mentioning how grateful I am to Kaiser in general. That for the amount deducted from my check pre-tax each month to cover my little family, I am able to walk out of the pharmacy with a shot valued at $3,721 for just $30. Following a specialized course of lymphoma chemo that is probably valued at close to $12K for just $40. I have loved Kaiser's clever "Thrive" ad campaign (can't not love something with Allison Janney as narrator), but honestly the receipt for the shot is all the ad they really need. Get quality, loving care for a price that won't put you in the street when the stress of having a life-threatening illness is bad enough. I know that's no tag-line, but it sure rings true to me. To us.

It's with a very full heart that I watch my bald husband drowsily watch tv this afternoon, so so grateful for everything that is promoting his recovery from this crap. Big, big thank you to our nurses, to our doctors, to our family and to our friends. The finish line is in sight.

Sunday, November 22, 2009

Grace follows Sadhana

Each of the past eleven mornings, I've read one poem by Mary Oliver. Just one from her "Why I Wake Early."

I find that eating just one at a time allows me to really savor the flavor, take the rhythm of that one poem in and really hear it, let it echo for a day. It helps that each poem is a gem, this morning's "Have You Seen Blacksnake Swimming?" closing with the image of the snake's "usual gentleman's smile." Each one makes me want to jump around, reminds me to go outside and soak it in.

The theme in yoga yesterday was that "grace follows sadhana." Practice, devotion, commitment brings grace in its wake. This fits in so well with the recent focus on resolution as the year comes to a close and a fresh opportunity presents itself.

But also it puts me in mind of Mary Oliver. Each of these delicious poems I am enjoying in the mornings is the result of so much devotion and singular focus, that shining bit of grace on the page no accident but the happy consequence of a poet's constancy in pursuit of her vision.

Tuesday, November 17, 2009

Cycle 3, Day 14: Savoring This Sweetness

Joe bounced back late last week and has been feeling great. He rode Saturday and Sunday -- ok, not as long as usual or as fast -- but chemo be damned, he was out there. We had a sweet, low-key weekend of hanging out at home, capped by some bowling for Laurent's birthday. Just so nice. So far this is how it goes: 10 days crappy, 11 days good. Ok, we can handle it.

We're really savoring this time, these 7 remaining healthy, comfortable days before we start the whole damn thing over again. The next chemo will be the day before Thanksgiving, but the good news is that it'll be chemo #4, so we'll have passed the half-way mark. Yeah! And so that chemo doesn't ruin the holiday, we'll be having Thanksgiving early at Joe's parents, the night before the treatment. More nice.

On the 30th we go back for another PET scan, to confirm what we are sure is the case: that the Potato and all the other little tubers are GONE, destroyed, evaporated. That'll be such a relief, to see proof that all of this chemical warfare we've been waging on poor Joe's body has been worth it.

Right now just savoring how free of misery Joe is: no nausea, no pain, no shots, no pills, just his usual sunny self, light and strong.

Monday, November 16, 2009

Cancer, chemo, bla bla bla: November is so much bigger than that!

As a wonderful distraction from all of the present-day chemo crap we've been dealing with, I've had the delightful fall-back of my usual November nostalgia, something that tends to take me over every year as Laurent's birthday approaches. In this photo, I am probably just barely 25, Laurent a few months old, still in his delightful harp-seal incarnation.

It used to be that I would look back on my pregnancy with so much compassion for what I went through. I loved Laurent, even in utero, with a ferocity that has never abated. But at the same time, I was miserable, broken-hearted, lonely, as I went through most of that time either abandoned by my then-partner, waiting for his return or waiting for another abrupt disappearance. I loved being pregnant, loved the feeling of it, the cozy shelf my gigantic belly created for my arms. I didn't love the hokey-pokey with the biological dad that consumed those months, as he tried to make a decision without making a decision.

I was luckier. My decision was made: Laurent was happening, growing to the mammoth 9 pounds he would be at birth, best and most powerful experience of my young adult life. After twelve hours of natural labor on November 15, 1987, our midwife Holly delivered Laurent into a patch of sunlight illuminating the bed and we beheld this remarkable creature. Glorious.

That day was hard, so painful, so fascinating in its total consumption of me -- no thoughts, nothing but presence inside a mighty unimaginable pain. I look back now on that day less with compassion than with awe - at my own courage, at my own insistence on feeling every bit of what was happening to me, at my embrace of motherhood, even on my own, even at my age, no matter what it would require.

Every year at this time I am filled with memories and with gratitude. I re-feel some shadow of the labor, keep time to remembered contractions for a long stretch of time, until 2:16 pm, when finally, finally, I meet my child face to face. And therein lies the gratitude: gratitude to the 24-year-old me who chose this path, gratitude to to my family who were there every step of the way, mostly gratitude to Laurent himself, who continues to dazzle me just as much now as at the beginning.

Thursday, November 12, 2009

Cycle 3, Day 9: Woe and Courage

I've been remiss in describing the first week + of this last treatment, so this is going to be a longish post.

Based on our experience with the first two rounds (Joe felt crappy but still worked and rode his bike), I think we mistakenly believed that we would skate through Chemo, trip lightly through this landscape of poison and side effects. To say we've had a rude awakening is understatement. The last 8 days have been very hard, 1 in particular was the hardest day we've lived through in our more than 20 years together. And throughout, we are cataloging Joe's symptoms, something which is challenging for us even in the best of times.

Way back when, I used to joke about keeping a calendar of Joe's ailments, what happened to him at work or on the bike. For a month or so in the late 90s, I actually did mark everything down and we'd laugh about it. Little did we know what good practice that would be for Right Now. Honestly, up til August of this year, there was already PLENTY to remember, mostly bike-related: crashing, getting doored or hit by cars, breaking helmets with the force of impact, hitting deer, breaking bones, scraping off knuckles, leaving behind large swaths of epidermis on roadways throughout Northern California. There is so much more, I'm sure, but I can't remember it all.

So I'm grateful that since Chemo #3 Joe has been keeping a daily record of how he's feeling. I share it here, his telegraphic Litany of Woe.

Day 1: 3rd Chemo, out at 1pm, got hiccups at 2pm (lasted, on and off, until 10pm), a bit sleepy, numb fingertips. 8pm: headache, weak, nausea.

Day 2: Woke at 1am, nauseous. Fingertips not as numb as yesterday. Still nauseous at 7am. Nauseous all day. Hiccups on and off. Constipated.

Day 3: Feeling foggy at 7am, right fingertips numb, a little nausea. Constipated.

Day 4: Only a few hours sleep, nausea, headache, numb fingertips. I don't think sleeping sitting up helps with the nausea. Numb lips. Constipated.

Day 5: Depressed. Numb lips and right fingertips. Constipated.

Day 6: Numb lips and fingertips. Back pain. Constipated.

Day 7: Same as Day 6, more back pain, slight cold. No longer constipated. [Thank you, Dieters Drink. Man, does that work!]

Day 8: All of the above, weakness, diarrhea, bad back pain.

Day 9: All of the above, constipation returns.

Looking back on all of it, the impact of the meds is clear: the Prednisone Days 2 - 6 gave us Depressed on Day 5, the Neulasta shot on Day 2 gave us the bone pain that started Day 6 and continues this morning. And while tracking it is deeply satisfying, we also know it won't necessarily help us with the next cycle. The effects of the chemo seem to change each time. We can't predict how it will feel, what will happen. Something new will probably come along to scare the crap out of us. This reminds me of so many other experiences, like being the parent of a new baby. Just when you think that you have it wired, that you *know* when the creature will sleep so you can wash your hair, the whole shebang changes up on you, and you get to start over from scratch.

That's where the courage comes in. Sure, we have woe a-plenty, but lots more courage, thank goodness, since courage is all that is required no matter what we face. Courage, it seems to me more and more these days, is the expression of a ferocious and abiding love. And that, my friends, we've got.

Tuesday, November 10, 2009

little serpent-love: Mary Oliver, I bow down at your feet

I took my second class last night from Stefanie Renard at Yogaworks in Larkspur, and for the second time she blew my mind not only with the quality of her instruction (and the sheer ass-kickery of the practice) but also with the words she shared during savasana. This Mary Oliver poem, from a book called "Owls and Other Fantasies" (the title of which, alone, confirms my deep reverence for this poet and her way of regarding the world), swept over me, took me to tears and back again.

Long Afternoon at the
Edge of Little Sister Pond

As for life,
I'm humbled,
I'm without words
sufficient to say

how it has been hard as flint,
and soft as a spring pond,
both of these
and over and over,

and long pale afternoons besides,
and so many mysteries
beautiful as eggs in a nest,
still unhatched

though warm and watched over
by something I have never seen -
a tree angel, perhaps,
or a ghost of holiness.

Every day I walk out into the world
to be dazzled, then to be reflective.
It suffices, it is all comfort -
along with human love,

dog love, water love, little-serpent love,
sunburst love, or love for that smallest of birds
flying among the scarlet flowers.
There is hardly time to think about

stopping, and lying down at last
to the long afterlife, to the tenderness
yet to come, when
time will brim over the singular pond, and become forever,

and we will pretend to melt away into the leaves.
As for death,
I can't wait to be the hummingbird,
can you?

~ Mary Oliver ~

Sunday, November 8, 2009

I am bullshit

I'm stunned and trying to square the yoga training with how fucked up I feel right now. I've spent the better part of the last two days arguing with Joe, and am just so angry and fed-up -- and all of that wrapped around a 5.5 hour meditation training about how we're all just emanations of glorious Shakti, bla bla bla. Isn't it glorious to be alive?

Saturday, November 7, 2009

The Big Kiss-Off

Almost a year ago, my youngest sister Carla was diagnosed with a brain tumor. [See my December 08 post: http://tinyurl.com/ych3rf9] The whole experience was horrifying, naturally. Martine and I went into over-drive, set up a caringbridge site for Carla. I tried to visit as much as possible, tried to keep her feeling how much love was pouring in from friends and family. Martine and I both tried to stay in pretty constant touch. This was our sister after all.

Her situation was desperate -- at that time, we were under the impression that she had months to live. She was about to turn 40 and had a daughter who would be 2. We'd never been close -- which I suppose is not surprising given the 6-year age difference -- but that didn't matter to me. Her husband had a lot of anger against my parents and our family in general, but again, this was my sister, so I tried not to let that get in the way.

Still, understanding Carla's choices in this past year has been particularly difficult. From the very first day that Jean-Paul and I visited Carla in the ICU, it was clear that there was a sense of entitlement from Carla's husband and mother-in-law: that somehow we Trelauns had done something very wrong and that it was our turn to pay. There was a protracted drama concerning payment of the medical bills, which somehow were believed to my parents' responsibility. There was quite a bit of ugly blaming. It wasn't the first time that we'd heard the rejection of the Trelaun side, but this time she made it clear that she wanted nothing to do with us (unless, sadly, it was money).

Which is so the opposite of how I would do things -- I'd want everything, everybody I could possibly get around me, to get me through that experience, the more love the better -- but have made my peace with what she wants. Even though I think it's stupid and not a little related to the fact that there is pressure on her brain stem.

Since I'm a Pollyanna, I can say that good things have come of her total rejection of the Trelauns -- I have my parents back in my life in a better way than ever. The pain of Carla's illness compounded by her terrible behavior (partially excused by her brain tumor) and that of her husband (no acceptable excuse) has been very hard on them. In light of all of that, I sucked up whatever bullshit problem I had with them, and have come to see them as they really are: remarkable, generous, delightful, inspiring. Yes, crazy, but who isn't?

Since sometime early in 2009, there has been little contact from Carla. The pattern was, for me at least, that when she was hospitalized, there would be a flurry of phone calls and texts. I would go to visit, keep her company, take her things. As soon as she was home again, a pall descended - total silence. There was an unpleasant email interaction with her husband in May, after he was unspeakably rude to my parents. Then nothing. Not one word. Friends would ask me how my sister was and I had nothing to tell, no idea what was going on with her.

Martine has been the good one, reaching out repeatedly, trying to sustain some connection. And thanks to her, we now know where we are. Wednesday morning, before leaving to take Joe to chemo, this is the email we received from Carla. Martine had written to say that she'd be out visiting from the East Coast and was there a time she could stop by to visit.

I don't think that I'm up for any visiting. As Ariane put it so succinctly in her email to Sidino some months ago, she hasn't had a relationship with me for years and has come to accept that. I too accept the fact that I have not had a relationship with my family members and I also take responsibility for my part in creating that fact. This year has been full of struggles and hardship for us and my focus right now is with my family, that being Sidino and Elizabeth.

I think that I am better served focusing my energy and strength on my treatment and getting back to some semblance of normalcy (as much as we can achieve that.) I really hope that you can respect my decision and choices as I do not have time to dilly-dally. The neuro-oncologist estimates my life expectancy at around 2-3 years, though there is no way for her to know exactly of course. The current chemotherapy is actually shrinking the tumors and I thank God for that, but there is no guarantee as to how long that'll last. I've been in and out of the hospital many times in the last few months and I don't know what I would have done had it not been for Sidino's vigilance, love and care.

So we're done. My mother responded with beautiful email about how they of course respect her choices but that she will always be their daughter and they love her. I haven't written her a word. The words I'd like to say fill my head all night and wake me up in the morning, but for now, I'm not sending them to her.

Thursday, November 5, 2009

Cycle 3, Day 2: The Cancer Social Club

Yesterday's treatment was a bit of a whirlwind. The infusion clinic was packed with people, the nurses short-staffed, but somehow we managed the trick of getting the one private room with a bed in it. Personally, I credit Joe's tendency to instantly become the teacher's pet, or the nurse's pet in this case. It could just be luck of the draw. But we've been lucky three times in a row...

The treatment itself went by very quickly. We were out of there by 1pm. Visitors made the time go by so much more quickly and entertainingly. Big thanks and love to Marty, Trish and Jessica for coming by and hanging out; to Hans for stopping in; to my lovely parents, Sari and Jean-Paul, for bringing lunch from Bi-Rite (such a class move), closing the party down with us, then joining us for coffee in the weak afternoon sun on our patio. And of course to Laurent. We were so happy to have him there with us. Amazingly full day.

Joe is feeling nauseous and hasn't gotten out of bed yet. We're both pretty nervous about an injection he has to give himself in about an hour's time. As you may remember, he landed in the hospital two weeks ago as a consequence of Neupogen injections he has to administer following chemo to boost the neutrophils in his blood. If his level of neutrophils drops any lower, they'll have to slow or stop the chemo - something we want to avoid. Anyway, they've given him ONE injection to self-administer this time to replace the 7, a pegylated (read: time-release, or so we're told) version of the same drug. There is the potential that he will *today* have the same bone pain that he had last round on the last day of injections. We dread this possibility.

Sleep still evades us, but we're delighted that we're arriving at the halfway point here. Joe looks great with a shaved head, and with everyone's loving support, we're coming through this with flying colors. It's still just so hard to comprehend that Joe has cancer (or had, we'll see after the 4th treatment, when they re-do the PET-scan). Such a crazy, ridiculous, random, stupid thing! Pondering that unknown makes me think about a quote from Rumi that a teacher shared in yoga yesterday, a few lines that sank in deep:


Be ground. Be crumbled.
So wild flowers will come up
Where you are.

You have been stony for too many years.
Try something different. Surrender.

Tuesday, November 3, 2009

Cycle 2, Day 21: The calm before...

Tonight is such a sweet night. The fat full moon is hanging low in the sky. Joe and Laurent are watching something ridiculous on tv and snickering and laughing. Jasper is somewhere in the house, still sleeping off the anesthesia from yesterday's dental cleaning. I am, obviously and as usual, sitting here, catching up on correspondence and counting my blessings. We're all just companionably sitting around, enjoying each other's company, reveling in the ease and comfort of Chemo Eve.

It's a goofy kind of Eve, but I do feel like I've been gearing up for this pause, working like a maniac the last two days so that I can have tomorrow free to be present in the Infusion Lounge, chat with the nurses, take my notes, ask the doctor all of the questions we've been writing down for the past couple of weeks. The process itself is amazing, and long. And now that we've done everything we can do to get ready, I can calmly look ahead to tomorrow, which, if it goes anything like last time, will be like this:

8:30
Arrive, be shown to a room (pretty please, let us not have to share)
Joe gets the prophylactic pre- pre-meds: tylenol (to guard against fever), zofran (nausea)
[I will also be kicking myself that once again I forgot to bring the 2-pound box of See's for the nurses that they so richly deserve. Those women are angels. Angels.]

8:40 - 10:00
More prophylactic pre-meds: Decadron, Benadryl and Pepcid, all to make sure Joe doesn't have an allergic reaction to what’s coming next, my favorite – the genius targeted therapy, Rituxan

10:00 – 12:30
Rituxan – the main event, the specialized treatment developed at Genentech that targets proteins on the exterior of the cancerous white cells and kills the fuckers. It is worth every bit of the $8,000/dose that we're told it costs.

12:35 – 2:30
The Chemo proper – three drugs total: Cytoxin, Adriamycin, Vincristine. I think it's the Adriamycin that's bright red and has to be slowly plunged into the IV by hand, by the nurse.

In between all this, Joe will be making wise-ass remarks and trying to make the nurse laugh [I wonder who our nurse will be tomorrow. Last time our nurse was named Ruthann Lovetang. That's right: Lovetang]. I'll probably run down for coffee at some point, then be around to greet Joe's fans and visitors, run down the pharmacy to pick up drugs, go fetch lunch. I always have the idea that I'll read, but it's all so engrossing, so utterly fascinating, and there's the reality that I have one eye constantly monitoring Joe.

Peaceful right now, just hoping we can hold on to this feeling as long as possible. :)

Saturday, October 31, 2009

Cycle 2, Week Three: Blurrrrrrry

I can't believe it's been two weeks since I last posted something, but it makes sense given that my most persistent feeling lately has been that everything's slipping by me so fast, and I'm just scurrying along (in flats) trying to keep up. It's as if there are these long dead times, in which we do nothing -- laze about, watch shows, take naps, have friends over and eat and laugh -- offset by these frenetic times, where I'm multi-tasking like crazy and thinking about why it is that in my head doing more things faster at the same time = evolution. Yeah, I know that's nonsense.

A brief summation of where we stand today and what we've been up to during this e-bsence:

First things first, Joe is feeling great. Ever since last Friday when he got out of the hospital (more on that below), he has been good and strong. He went out on his team's ride Thursday morning, and he just headed out for more of same. Excellent! He's been troubled by a dry cough for the past week or so, but it's just an annoyance. All other systems are Go. He has already begun to dread next Wednesday when we start this whole thing over.

Last Thursday Joe suffered extreme pain as a result of the Neupogen shots he has to give himself following the chemo. They'd told us that a possible side effect was bone pain, which we filed away in our minds as bone ache, similar to how you feel when you're getting a fever. So when Joe, at work, about 9am, started to feel like his lower back was breaking, we didn't put it together. By the time I got him to the hospital, he'd been having these worsening waves of crippling, fall-on-the-floor pain for four hours. It took as many hours for them to find a pain medication that would take him out of agony, and allow him to sit down. That was a super-rough ride. He ended up spending the night in the hospital. Big love and thanks to Trixie and Josh for tracking us down in the ER, then bringing pizza and drinks; thanks to Alex, Lisa and Nick for visiting; and Jim and Donna, too, of course, for spending time with us there. By the next morning, 7am, Joe was ready to go.

Since then, since the hospital, it really has been pretty easy. Joe doesn't have the same energy, but is still going to work every day, and, now that his appetite is back, making dinner most every night. That's been great for me, since with the Bay Bridge down this week, my schedule has been stupid - the usual commute taking twice as long, which has its benefits (like watching a fat orange sun set from the middle of the span of the Golden Gate Bridge, in stop-and-go traffic; like forcing me to go slow, etc.) but mostly just eats into my Joe-time.

We're going to try to really enjoy this weekend, knowing that this is the golden one, the One Before, and that he probably won't feel this good again for three weeks. Later today, we'll go get our flu shots (something neither of us has ever done before, but which is now required by the docs), then enjoy the garden and this beautiful cotton-candy October sunlight, just soaking up the heat and brightness of the day since we know we'll need that illumination in the weeks to come.

Saturday, October 17, 2009

Cycle 2, Day 4: The Grind

This has been a rough four days. This time around Joe was plagued by the hiccups for the first couple of days, with the delightful addition of motion sickness and burning esophagus, along with nausea. He did ride his bike from and to work on Thursday and Friday, and today rode out and back to watch the Lion of Fairfax Race. Pretty tough for a guy who's mid-chemo and living with the side effects! And cute, too, as this photo amply demonstrates...

For my part, I have been, I will admit, a crabby bitch. I resist taking sleeping pills or anti-anxiety stuff at bedtime, only then to lay awake for hours at night, stomach grinding, which sets me up for a migraine and aforementioned crabbiness. Stupid! Joe tries not to complain, but he has genuine complaints and needs support. I sometimes hit a wall with the misery show, and I'm not the nicest nurse on the planet. Yes, we are perfect in our imperfection.

So this is what I mean by The Grind: the debilitating effects of the chemo on Joe, the Groundhog Day feel of this (oh no, not this again), the appearance of new unpleasant symptoms, the sorrow we both feel that his eyebrows are going now, the difficulty in remembering that it won't always be like this. Ugh, really, just the opposite of fun. So very easy to fall into a hole about it.

Which is probably why we were both so excited today to get the letter from Joe's doctor stating that he "may derive benefit from the use of medicinal marijuana." If nothing else, we'll have a new experience, check out the pot club scene in Fairfax (hurray, more blog-fodder), maybe come away with another way to deal with the anxiety and sheer boredom of feeling crappy.

I am grateful every second for the love of family and friends through this. If we had to be in this hole by ourselves, it would really suck, but anytime we need one, and even when we forget we do, a hand appears to haul us out of the misery and remind us both that this is so temporary and will be so worth it when we're done.

Thursday, October 15, 2009

Cycle 2, Day 2: A pox upon you, hiccups!

Joe's infusion went fine yesterday, definitely faster than the first time. The first drug they administer -- the Rituxin, the targeted therapy for the lymphoma -- took about two hours this time instead of 4 so we were out of there by 2pm yesterday. Nice. Joe's brother Marty visited with Joe for almost the whole time, Hans and Brad stopped by - really pretty sweet. Alex, Lisa and Nicholas brought dinner over, which was an excellent distraction disguised as yummy, easy foodies. All in all, it went fine.

Joe feels weird, not sick, but weird. The damn hiccups came back with a vengeance, including two bouts, each an hour long, in the middle of the night. That is hard to take. Poor Joe went looking for somewhere else to sleep in the house, forgetting that Laurent has moved back in and taken over the couch, so back he came to our room. Uncharacteristically, we overslept - can't say I blame us. Now Joe and Laurent are gone (Laurent drove Joe to work, then took Joe's truck to the city. Did I forget to mention that Laurent's car was hit and run over the weekend and is undrivable? Shit just don't quit!!), and I am here just trying to pick up the pieces of yesterday, move forward into today.

All the pills and shots are lined up for the next few days, so that we don't lose our way. We're braced for Joe to lose his appetite, to start feeling crappy and couch-bound, although his oncologist said yesterday that it's entirely possible that he won't feel worse and worse but rather feel the impact of the infusions less and less. Now that's something to look forward to!

Monday, October 12, 2009

Cycle 1, Day 20: There goes the hair


Joe started looking a little mangy over the weekend, weird little bald spots on the sides of his head mostly, like funny burned velvet or kinda leopard spots. The solution tonight was to just shave it all off. Beats mange! But I think Joe wanted to not lose the hair until after the second chemo, so we're a little ahead of that plan.

It's funny how we poo-poo'ed the impact of losing the hair, just didn't care about it at all, until it started happening. I really don't like it. When I showed him the picture above, Joe just said, "now I'm just an old sick dude." He just said he thinks he'll wear a hat tomorrow. It's weird how sad it makes us both.

Anyway, it's just hair. We'll get over it. Tomorrow Joe goes in for pre-chemo bloodwork, make sure he's tolerating it OK and that we're on track for the next round. We're both dreading it. I tried to make myself feel better about things by making a very organized, super-geeky Lymphomania binder with tabs and sections, etc. It does help to remind me of everything, and keep things where Joe can find them. But mostly, it's dread right now, in the lead-up to Joe feeling sick again, to dose #2 of poison.

All in the interest of continuing to kick the lymphoma's ass, of course. So we're down for it, bald if we have to be.

Friday, October 9, 2009

Cycle 1, Day 17: or is it?

Joe's feeling so fine these days that we are *almost* forgetting about lymphoma, except for his mounting dread as we approach Chemo #2 next Wednesday. He has only a minuscule amount of abdominal discomfort -- .5 on a scale of 1 to 10 -- evidence that the first installment of the Rituxan did its job of attacking those nasty tumor cells and blasting them to oblivion. He is eating pretty much normally, except that spicy food and alcohol are still off-limits. He is sleeping through the night without any sleep aids (more for me, hurray), and really, except for being grossed out by the thought of having to subject his body to this poison again, is doing great.

Oh, and the hair loss has begun. From the bottom up. Who knew? We heard from a dear friend of ours who had the same treatment that Joe should expect to lose it ALL after the second chemo. Joe's response is to plot Halloween costumes that incorporate the hairlessness. He's leaning toward Nosferatu, but I am still holding out for Dog the Bounty Hunter and Beth, with me as Dog, of course.

Joe feels like the effects of the chemo show in his face, that his eyes are more sunken in, that he is more wrinkly, an old man suddenly. I don't see it, he's still as foxy as the first day I laid eyes on him.

For this first cycle it was about a week and a half of misery for Joe -- pills and shots, those damn hiccups for two days, food aversion, sleeplessness, flu symptoms, constipation -- followed by a week and a half of gradual return to almost-normal. But we hesitate to extrapolate anything from this, and fully expect that every time will be a little different, maybe a little worse and harder and more wearing. But we will get through this and come out on the other side, maybe a little more wrinkled, certainly a little bit older, but dang, doesn't that beat the alternative??

Monday, October 5, 2009

Abundance: La Dame Aux Pommes!

We have been savoring the abundance of the life we've made, most recently weighed down (hands and pockets!) by a richness of apples, delicious Gravensteins that have never been better in the almost 13 years we've lived here. With three trees, most years we compost an embarassing amount of fruit - spend hours filling buckets with all of the apples on the ground. But this year we've been much more on top of it, and better able to share this abundant harvest with friends and family.

I am grateful to Tode and Liz who came over this past Saturday and picked a bunch of apples to bake, dehydrate, sauce, can, and to Tode for taking this picture.

So much to love about this shot!

- my awesome ridiculous embroidered apron from Oaxaca, at least four sizes too big for me, but couldn't pass it up because of the peacocks on the pockets. And of course I can't wear the apron without thinking of Peggy, sweet sweet friend Peggy, best travelling companion under the sun, instigator of so much deliciousness and fun.

- the forest of asparagus behind me.

- the apple in my right hand, truly the most perfect beautiful apple the tree has ever made, and my silly manicured sparkly black nails wrapped around the apples in my left.

- my beautiful sleeves!

I sometimes forget, thanks to all of the running around that work requires and now due to the lame bleak misery that cancer drags along in its wake, just how beautiful this life is that Joe and I made. Thank you, thank you, thank you Tode for this very graphic reminder of how full and rich and tasty it all is!

Sunday, October 4, 2009

Cycle 1, Day 12: More, Please!

Yesterday was a hard day. Joe was feeling crappy. I lost my patience. We followed through on our plan to visit Muir Woods and being in those big trees was beautiful, but the whole day just felt lousy. The walk along the boardwalk was super uncomfortable for Joe. I was down all day, too. Sometimes the fog of cancer is just suffocating and it's hard to find a way out.

Last night we slept really well (thank you, Ativan and Ambien!), and Joe woke up feeling almost normal, except for a rib that's bothering him, an injury sustained while sweeping the walkway. Yes, while sweeping the walkway. He went out on a mellow team ride this morning and stuck all the way through. Blessings on Trixie and Josh who came over after yoga with pastries, which turned into lunch, which turned into a ramble in the hills, which turned into ice cream eating and many more laughs, which turned into plan-making for future fun. Joe just left for the store to buy ingredients for home-made ice cream and is feeling great.

So I'm asking for many more days like this one - only a little pain and discomfort, but mostly activity and fun and friends. Cancer or no, more days like this are what make life sweet, are how I wish I spent so much more of my time. This afternoon, looking around the table at Laurent and Trixie and Josh and Joe, and at Jasper off rolling in the grass, everyone glowing in the already-softer October sun, really all I could think, my over and over mantra, was just Yes, More Just Like This. More, please.

Tuesday, September 29, 2009

Cycle 1, Day 7: Normal?

Except for a little pre-diagnosis type stomach pain, Joe woke up feeling normal today. As I write this, he is doing sun salutations in the living room. Wow, normal, really? He took the last pills of the cycle last night, this morning had only a shot to administer.

It's been a rough week, more down than up, except for the 50-mile ride on Saturday. And the discovery that spicy food is off-limits now, a big downer. But this morning's feeling is a good one.

And by the way, I haven't seen him do yoga like this since before he broke his arm in May. Jump-backs to chaturanga? What? I'd say he feels better than normal!

Saturday, September 26, 2009

Cycle 1, Day 4: Cancer is a full-time job

The lovely Susan Jones, Joe's nurse at chemo, made us a calendar that details Joe's meds and doses, day by day, morning and evening, for this first week of Cycle 1. I love this calendar so much, not least of which because it's handwritten and I like how her handwriting reveals her upbringing in Holland, but mostly because without it, it would be so much harder to remember everything. It's got almost a totemic quality for me - I look at it and Susan's kind instructions are with us, filling me with calm.

It's 8:45 on a Saturday morning and Joe has gone back to bed. Normally, he'd be suited up and out on his bike with his buddies already, long gone out White's Hill after the meet-up at the Hotty Hut in Fairfax. But he's really tired today, so there he is, sacked out on my side of the bed. He was up just long enough for a bowl of cereal and some coffee, two Prednisone, 1 Zofran and 1 self-administered shot of Neupogen. Normally, I'd be at yoga, in a packed room in Sausalito with my friends, chanting and laughing and sweating and turning upside down. But I'm really tired today, so here I am on the couch instead, thinking about how much our lives have changed so quickly.

We both know that this treatment is short-term. Joe's chemo will be done in the first week of January. But right now if I ask him about it, he just says, "it's going to be a long haul." He never believed that chemo would affect his appetite, but for the last three days he's been largely unable to eat and tending toward the bland -- mac & cheese is really what he wants. It was a small triumph that he was able to eat a Michael's Sourdough #23 yesterday at lunch, at last something that was appetizing and didn't make him sick. And like I said, he's in bed right now on a blisteringly beautiful sunny September morning - that's all wrong!

It would be so easy to let the cancer take everything over. It is, seriously, a full-time job. It's such an interesting situation -- cancer forces a contraction, a pulling-in to hoard energy, a narrow singular focus on pills and survival, in the face of which I keep pushing for expansion: how can we grow from this, how can we get stronger, where is the Good? The answers to those questions are obvious, right, but still the pressure to contract, to get small just to get by, is so strong. If it's a full-time job, damn it, then we're getting paid for it -- paid out in love and the sweetness of simple things (eating a whole sandwich!).

Just now I heard some rustling down the hall and Joe just appeared in his kit, out to try a ride. Who knows what will happen, but we're going for it anyway, always expanding, getting bigger no matter what.

Thursday, September 24, 2009

Chemo hiccups: who knew?

Joe's had the hiccups off and on (mostly on) since yesterday afternoon. Blessings on the internet for delivering this most helpful information, #1 of 37,500 hits in response to "hiccups and chemo":
Chemo hiccups (singultus) can be caused by corticosteroids given for nausea control, such as Decadron (Dexamethosone). Curiously, decadron-induced hiccups mainly affect men, especially older men, and not women. The good news is that people who suffer from chemo hiccups are much less likely to suffer from nausea and vomitting. The bad news is about a third of patients who stop the Decadron to cure the hiccups subsequently suffer from nausea and vomitting.

Joe had Decadron the night before treatment, so that doesn't seem like it. But it does prove the theory I was developing that if it wasn't hiccups, it'd be nausea. Interesting. And furthermore:
Some of the modern antiemetics (5-HT3 receptor antagonists) can cause hiccups. These include aprepitant (Emend), granisetron (Kytril), ondansetron (Zofran) and ramosetron.

Of course, Joe is taking Zofran. And with this information, I can remember that yesterday's hiccups started not long after he took 16 mg of Zofran while we were grocery shopping - after his delightful nurse Susan called to tell him to take them immediately. She'd meant to give it to him before we left the hospital.

Hiccups are such a petty annoyance, but try having them in the middle of the night. It's impossible to sleep through them!

I'm feeling better right now mostly because Joe was able to eat some dinner. A very exciting dinner: tiny servings of spaghetti with salt, cheese and olive oil. So happy he ate, and that -- for now -- the hiccups are gone!

Adjusting, Cycle 1, Day 2

Joe and I started shifting gears last night. In our busy hilarity all day at the Chemo Lounge, we kinda set aside some information that the oncologist, Dr. Maloney, had given us. Funny how we only really remembered it at bed-time, when it hit us both pretty hard. That's when we were both pretty sad about what's happening to Joe. I know they say this is the cancer to get if you insist on getting it. We had both hoped that the cancer would be isolated, and are still mad and sad that it's there at all.

As a result of the PET-scan, that disgusting test where they injected Joe with radioactive glucose on Monday, we now know that Joe's lymphoma is a Stage 3 -- in other words, it is found on both sides of his diaphragm. I took notes, and what I remember is that they saw active uptake (i.e., hungry bad cancer cells eating up the radioactive sugar) in the area of his right tonsil, right mandible, right armpit, middle of his back, left lung, left pelvis. Damn it. Even though Dr. Maloney has been telling us for a week that the Staging doesn't change the course of treatment, we are still sad about this. We would prefer just the one Potato, being sorta monogamous about our tumors. Instead we're poly-tumorous. And actually that may be going too far: Dr. Maloney didn't say anything about tumors, just active uptake...

As of yesterday the bone-marrow biopsy results were not conclusive, but the interim news on that was that so far it was negative - meaning not in the bone marrow. That's good. Reminder that finding evidence of lymphoma in the bone marrow pushes Joe to Stage 4. We really don't want this. Again, it wouldn't change the treatment, but still...

Joe is feeling pretty shitty today, tired and off his food. Yesterday was a really, really big day, so it's no wonder his body is shocked with everything he was put through. The psychological impact of it is also not small.

So yesterday we were silly funny clowns of chemo, but today I think we're both sad. I would give anything for Joe not to have to go through this. It's still just so hard to believe, so hard to accept. But we're also trying to go one day at a time and stay as happy and in love with each other and life as possible.

Wednesday, September 23, 2009

Adventures in Cancer Land, Cycle 1, Day 1


We're home after a long day in the Chemo Lounge at Kaiser. In so many ways, it was the best possible day it could have been -- we got the one room with a bed in it since it was Joe's first time and there was a lot of concern about how he'd react to the Rituxan; we had great, funny care from Susan Jones, our nurse du jour; Laurent and Hans came by and visited with us; and REALLY GREAT NEWS: Joe had no reaction to the Rituxan and seems to be doing absolutely great now.

The Rituxan is supposed to be really fast-acting, so Joe should have relief from the pain the tumor has been causing him very soon - the Rituxan will start targeting those bad B-cells and The Potato should start shrinking to a Tater Tot.

But probably my favorite thing about the whole day was Joe himself. He is so remarkable and has such a great attitude that he can make even chemo fun. Jean-Paul in particular would have appreciated the way that Joe asked me to pass him a large glove from the dispenser on the wall so he could inflate it and put it on his head, all just so that when the nurse arrived and noticed, Joe could quip, "I'm feeling a little fowl." I utterly love that.

We are on our way to roasting, baking, mashing The Potato! And I, no matter what comes, no matter what happens, am grateful every moment that I have Joe - really such an amazing, delightful human being. I am so very, very lucky.

Tuesday, September 22, 2009

What We Are Now

If we are what we eat, Joe and I are straight-up pharma. We are not just buying, but eating, what they're selling.

I was thinking the other day that with almost anything else, I would've asked more questions, like thought about alternatives, was there a homeopathic route, what would a naturopath advise, but with the lymphoma, I've been hell-bent on its immediate annihilation, all-out nuclear war. Kill. The. Fucker.

Last night Joe had a PET-scan for which they injected him with radioactive glucose. Once he was done with his round in the machine, he was instructed to refrain from picking up babies or hugging pregnant women for 24 hours. Oh, and drink lots of water, as it helps you pass the radioactivity. Sweeeeet.

Since last week, we've changed our diet dramatically and Joe's is about to change even more as of tomorrow. Here's what's on the menu.

Now:
Allopurinol
Decadron
Vicodin
Ambien
Ativan

Starting tomorrow and every 21 days thereafter until early January 2010:
Rituximab
Cyclophosphamide
Doxorubicin
Vincristine

Plus I think they're giving him good ole Benadryl during the first round of chemo to offset any allergic reaction and knock him out, and will send him home with tasty, tasty anti-nausea medication.

After that all we need is some weed.

Joe lives pretty clean so this is so weird. [At first, I included myself in that sentence, but as readers of this blog know, I do have a migraine-fueled taste for narcotics.] Joe is always searching for a vice, like the time he valiantly tried to develop a cigar-smoking habit, an effort which ended in dismal failure (oh happy day). But he just doesn't seem to be able to commit to any vice, and beer is too soft to qualify. I can barely get him to take an ibuprofen most of the time; he just hates to mask the symptom. Really, having so many drugs in the house and in his body is so weird.

But we are happy to be pharma, we are fine with that, as long as ultimately it results in the disappearance of The Potato, may it burn.

Friday, September 18, 2009

Grade 3, Stage 2 (for now)

We're learning a whole new language of cancer and lymphoma, and added to our vocabulary today. We met Joe's oncologist, Dr. Maloney, this afternoon, and now have a charted cancer-path.

[Small aside: I admit to a small crush on Joe's doctor, 1992 graduate of Marin Catholic who grew up in Fairfax. But that's natural: he had me the moment he produced hand-outs for us (i.e., me) to take home and read.]

Cutting to the chase: Joe starts chemo next Wednesday, and will have 6 courses 21 days apart. This means he'll be done in early January 2010.

Some details about The Potato: Joe's follicular lymphoma is Grade 3, meaning that it's aggressive. It's currently classified as a Stage 2, which means that it is affecting more than one lymph node and is on only one side of the diaphragm (below his diaphragm in Joe's case). But as we get more information, the staging may change. The PET scan on Monday will tell us if it's more widespread (Stage 3, above *and* below the diaphragm), and the bone marrow biopsy that Joe had this afternoon will tell us if it's in the bones (Stage 4). NO MATTER WHAT the course of treatment is the same: chemo. And the chemo is curative. Such good news.

I was delighted to be shown the CT scan. Completely amazing to see Joe on the inside and to get a visual on the Potato. I do regret not seeing the bone marrow biopsy performed; Joe made the mistake of asking to see the tools used after the procedure. I think he won't soon forget.

Joe's got absolutely everything going for him: he's young, he's strong, he has a great attitude, and he will receive excellent care. Of course and as usual, one of the chemo nurses is someone Joe knows, a former client who remains delighted with the vanity that Joe made her. As we were leaving, she said if we needed anything at all, had any questions, to please call her even at home. That was the only moment today that I cried - people's utter sweetness in the face of this is profound.

It's going to be OK, it's going to be more than OK. We are so relieved.

Tuesday, September 15, 2009

We have a diagnosis

Joe's most excellent and super-communicative doctor called us at 5:30 today. We'd already given up on hearing anything today based on our earlier-afternoon call with him, but he called as soon as he had results, knowing we wouldn't want to wait. Such a relief to have information. The best news of the call: the doctor insists that if you're gonna get cancer, this is the one to get.

So here's the deal: Joe has follicular lymphoma, stage 3. The tumor, which is what we are now calling it, measures 12 x 6 centimeters. It's non-Hodgkins lymphoma but because it is Stage 3 (which identifies it as fast-growing, rather than slow) it will respond to treatment like Hodgkins, which is a really good thing. Because it is an aggressive tumor, it'll take up the chemo really well -- in the doctor's words, it will "melt away from chemo."

Joe has an appointment on Friday with oncology, where we will get more answers. I'll be along to scribe and scribble, adding notes to our "Living with Lymphoma" notebook which we started last week. Though he didn't want to promise, Joe's doctor seemed to think that chemo would take care of this nasty sucker - possibly no radiation required. Joe will also have a PET scan (see info below lifted from mayoclinic.com) at some point soon to illuminate the extent of any and all tumors.

Crazy as it may seem, we are so relieved. In fact, we're a little giddy. Joe just referred to himself as a total lymphomaniac. We will sleep better tonight than we have in three weeks, since we started down this path.

BIG LOVE to all our friends and family for the support that is getting us through this. We really do feel so very lucky and grateful to be held in so many hearts and minds. XXXXX





* For a PET scan, a small amount of a radioactive tracer is injected into your body. This tracer is then absorbed by your tissues. Tumors are typically more metabolically active than other tissues, so they absorb more of the tracer. A PET scan also may be repeated after the first or second course of chemotherapy to see if the treatment is working. Tumors that respond to chemotherapy don't absorb the tracer.

Saturday, September 5, 2009

Love Is All You Need



Last night, after two weeks of tests, insomnia and anxiety, we received the news that Joe has lymphoma. My Joe, my sweetheart of 20 years, has cancer of the lymph nodes. We don't know anything -- what kind of lymphoma, what the prognosis is, what the treatment will be. Next week Joe will have a biopsy, which will help answer all those questions, and we'll take it from there.

Joe had been having abdominal pain for a while, mostly a dull ache. He dates it back to after our return from Oaxaca in June 2008; he's been aware of it since then, off and on. Recently it got worse, more pronounced discomfort affecting his ability to sleep at night, to be comfortable in bed, to lay flat on his back. He had an ultrasound on August 24th and a CT this past Thursday.

The love of friends and family is everything we need right now, because more than ever we know the truth of the words we both sang as kids. Now more than ever, but all the time, every day, every instant -- Love Is All You Need.

I'll post more as we know more. Right now we're just floating along, trying to integrate this unexpected news into our lives. Right now, if you want to know what you can do for us, love each other, please. It's all we need, it's all there is.

Love,
Ariane

Saturday, August 29, 2009

A minute of beevision

video

This is the second evening in a row I've sat next to Hive 1 and entered a languid dreamlike state. Last night it was so hot and yet overcast, 90 degrees at 6:30, what everyone likes to think of as earthquake weather. I got home from yoga completely wrung out, quickly changed my clothes, grabbed a beer and my book, and went out to sit by the hive, knowing the air would be filled with the intoxicating smell of beeswax and honey, the odor of the colony.

It's extremely atypical for me to do this particular combination of things: grab a beer and a book and sit at that hour of the day. But it was so rewarding. Staring at bees going in and out, though mostly in. Observing crows fly by high overhead as a family of quail (four chicks) wandered through the yard and up into an apple tree. Watching bees delight in the borage. Sipping the beer and reading. Alert and relaxed, almost inside the thrum of the bees.

And tonight again, same story, except this time there is also a party next door adding to the thrum. Joe is in it, I can hear him, his voice rising sometimes above the others as I sit by the hive, drinking water and staring, wishing I didn't have a headache but also perfectly content to be over here alone with Jasper and these thousands of little striped creatures going about their business. It's almost dark and they're still now hanging around on the threshold of the hive, cooling, some meticulously cleaning the stoop, others blowing in still with full loads of pollen.

Tomorrow mid-day we'll take a look inside, but right now, it's just so pleasing to observe them from this vantage point, not mucking about in their beautifully patterned orderly little world. So very sweet.

Wednesday, July 22, 2009

Migraines are a lie. Narcotics are the truth.

This weekend, I went to see a healer. Yes, a healer. He's the healer of my teacher's teacher and very well regarded in the yoga circle I move in, so I figured why not check it out. At first, I couldn't remember a single physical ailment that he could help me with, but then my friend Nancy reminded me about my migraines. Duh.

Of course, I could've just asked him to tune-up my chakras. But as below, I'm not so good at this.

When I took my turn, my thirty-minute appointment, I'll admit that my first and most dominant feeling was "I'm so bad at this." I don't really know what to do in these situations (need a How To for healers), what to ask for, what to expect, so I tried to keep an open mind throughout. Tried, I say, since I will admit that there were times my eyes would want to snap open so I could see what was transpiring and ask a bunch of questions. Instead, I did my best to quiet my mind and just go with it.

Definitely, something happened in that room. I was very rapidly in a relaxed state. He worked on my head, neck and shoulders, asked me questions like whether I was really ready to let go of the migraines. I had to think about my answer a bit. I was advised to stop sugar and alcohol for a while. Interesting.

Then I just laid there on the massage table, face up, for a while taking it in, integrating it as we say. After a while, I opened my eyes and tripped out on colors I was seeing on the ceiling. That's right, colors. Very pretty. On my way out the door, Scott said that thoughts would come more slowly now. Interesting.

It was all very gentle, very simple, very kind. Scott, the healer, is a lovely creature. Afterward, I sat out in the living room with Nancy and chatted quietly. I went home, had a huge allergy attack and stumbled through the rest of my day.

But through the haze, the thought arose: Migraines are a lie. Narcotics are the truth.

Interesting. I hate the migraines, but love the vicodin or percocet or whatever other narcotic I can get my hands on/prescription for, and am very quick to hit the drugs at the slightest hint of a migraine. It suddenly occurred to me that the real problem was not the migraines but the pills, sad since I do love them unabashedly. Also that I pretty much hate my job and that I've relied on some mental padding to get through the past year or so. Mental padding = pills, obviously, of one kind or another.

Maybe this doesn't mean anything to anyone but me, but honestly, it rocked me. It's true that since the appointment -- allergy-attack notwithstanding -- I've felt clear, easeful in my mind, no sign of anxiety or any other forehead-crunching. It's only been a few days, but honestly I do feel different. I give Scott credit and my thanks for that, and for unleashing this realization, one that I so deeply needed.

Thursday, June 25, 2009

burn bright, burn steady, burn long

Today's news of Michael Jackson's death really spun me around. I drove home blasting the tribute mash-up on Kiss FM (and yes, crying), totally stunned by the number of amazing songs and the depth of my love for and attachment to each one. With Marianne, Heather, Jessica and others, haven't we spent joyful hours dancing and singing along to these songs? They never fail to make me happy.

He didn't have cancer. He wasn't sick that we knew of. He was about to start some intense show-schedule at age 50. I thought he'd be among us, unraveling in his dramatic fashion, for a long time to come.

It really got me to thinking about something Sarah said on the radio years ago about Angelina Jolie (and which I've clearly remembered all this time) -- something about how when Angelina was with Billy Bob Thornton, she "reached her freaky fruition," i.e., she managed to travel the entire arc of her innate freaky by a young age and blow it out, get it over with. At least that's how I interpreted what I heard.

With Michael Jackson, did we ever see such an arc of freaky? What was left? How much crazier could he get? Maybe, as Joe said, it's kind of a relief for him, having travelled his entire arc, to finally get to be done.

But still I think it's just sad. He really was a genius of pop. There are few things that make me so consistently happy as "I'll Be There" or "ABC," or that make me bust out a helpless happy Snoopy dance every time without fail, no matter where I am, like "Working Day and Night" or "Billie Jean." Just genius.

RIP to the King of Pop who burned too bright and too fast. I so look forward to the next opportunity to shake my body down to the ground.

Long live the King.

Wednesday, May 27, 2009

Replacing Ativan with Eckhart Tolle?

I've had the worst, most heinous insomnia since about November. It became totally impossible to sleep through the night. I'd wake up repeatedly from just horrible anxiety dreams then lay awake, tossing and turning over whatever list of worry was running incessantly through my mind. It was crazy. I actually dreaded going to bed at night, since it was just such utter torture.

I can break down the reasons for all this anxiety, but won't bore you with the litany here.

A couple of months ago I finally saw my doctor, just feeling at wit's end from not sleeping, and she prescribed Ativan for what she clearly saw as anxiety. I am delighted that that shit really works for me. A tab at bedtime and it's like I'm awake, then I'm dead, then I'm awake again. It might sound bad, but it is nothing but good, believe me. Deep, deathlike sleep kicks the ass of insomnia any day of the week.

But of course, I don't like the idea of swallowing pills and do admit that there's a nasty voice in my head constantly accusing me of weakness for needing to resort to prescription drugs to get through this rough patch (f*k that voice, seriously...). So I went without the Ativan last Saturday night, just to see what would happen.

And guess what: the anxiety is still there. Hasn't gone anywhere or resolved itself magically. So it was a rough night. I am fully cognizant that the pills are not a solution.

Then listening to Eckhart Tolle in the car on the way home tonight ("Practicing the Power of Now," and boy, do I really need reinforcement in that area), it struck me how freaking upside down my life has gotten lately: when I am conscious/awake, basically I'm moving through the day unconscious -- fast, on task, plowing through an endless To Do list, zigging from one thing to another without pause. When I am trying to be unconscious/asleep, I am actually conscious, replaying an endless awful tape of mental misery. How screwed up is that?

According to Tolle, becoming aware that you're not present in the present moment is the beginning of presence. I'm hoping that staying conscious in my waking hours will allow me to let go of the crap that keeps me awake at night, so that I can slowly wean myself off the meds and get a decent, normal night's sleep. I'll keep you posted.

Saturday, May 16, 2009

The joy of reconnection


2009 is, for me, the year of connection, and specifically where my parents are concerned, the year of reconnection. Such a sweet reunion.

Thursday, May 14, 2009

New Hive: Demo and Reconstruction


Inner cover of new hive, loaded with bees and unruly comb!

Joe realized last night that the swarm we caught and hived on Sunday was building some pretty unruly comb in their new hive box. He discovered this by peeking in the entrance with a flash light. Instead of building in the frames that we’d placed in the hive, they built comb from the inner cover and the follower board almost all the way to the bottom of the hive box.

After consulting with our teacher, Alan, Joe got to work. We couldn’t wait; this had to be done today, much to my sorrow. So I stayed at work and missed the show. Joe suited up completely: veil, gloves, long sleeves and pants. These bees have been wild for two years that we know of, so working with them is different from working with the Italians we bought in a package 5 weeks ago. And there are simply way more of them.

To get started, Joe assembled all of the tools he would need – bee brush, hive tool, frames, rubber bands, and the smoker, stuffed with burning strips of burlap. When Joe smoked the bees, the volume of the hive instantly rose, and it was clear that they were agitated by the smoke.

First Joe had to lift the cover off. The bees had built comb not only in the empty part of the hive box but also between the tops of the frames and the inner cover, making the cover hard to remove, basically waxed shut by comb. Joe tipped the cover up to a 45 degree angle, and one of the big pieces of comb fell to the bottom of the hive box. The comb wasn’t just one sheet. They didn’t build it in parallel lines. They built a few rows one way and then the next 90 degrees to the first, sort of a Tetris construct. Joe was amazed at how many bees were there, and it was just like a swarm again hanging from the inside of the cover. The bees had actually begun to build comb in just one of the frames, but only about a three inch disk. There were thousands of bees on every frame, some of them hanging in chains, so it’s possible that some were beginning to build in the frames.

Joe didn’t really know how to remove the comb from the cover, so he just grabbed the comb up toward the top (i.e., at the cover) and it pretty much broke free from the wood. Once he got all of the comb off, he just laid it on top of the hive and on the cement and set the lid aside. The lid was covered with bees by the way. Joe then proceeded to rubber band the big pieces of comb into the frames as instructed by Alan.

It was pretty much like catching the swarm all over again, lots of bees in the air, bees crawling all over him. Anything that got honey on it, the bees would stay there.

Good thing for gloves. At least 5 bees stung Joe’s gloves, then took a couple steps away from their stinger and venom sack, and started fanning. This is in contrast to other bee stings we’ve observed, where the bee just falls over and slowly dies, its insides essentially pulled out when the stinger leaves its body.

Joe left in the five frames that we originally put in the hive box – never took them out since bees appeared to be busy in them. He checkerboarded in the 4 frames with the rubber-banded comb, and added the tenth empty frame.

Joe smoked the bees twice, once at the beginning and once in the middle. And by the way, one of the burlap sacks that we picked up from the coffee roastery is actually made of hemp and definitely smelled like weed.

We had put in a quart jar of sugar-water when we hived the bees on Sunday. They had drunk ¾ of it by this afternoon, fueling their tremendous comb output.

Joe did not see the queen, but did see eggs. Not many. Most of the comb is either not fully developed, shallow, or was full of honey and pollen.

Joe brought in a plate covered with broken pieces of comb, which has made for some great observation and tasting. The variety of colors of pollen is amazing: purple, orange, gold, greenish gold, blue like eye shadow, and yellow. Very interesting taste. I can’t say that either of us has ever eaten pollen like this. The honey is very thin and fruity, probably because it is really more nectar still than it is honey.