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. :)

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.