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.

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.

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 ~

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?

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.

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.

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. :)