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.

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, 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.

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??

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.