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!

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.