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.

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??

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!

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.

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!

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.

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!