Saturday, October 31, 2009

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.

Saturday, October 17, 2009

Cycle 2, Day 4: The Grind

This has been a rough four days. This time around Joe was plagued by the hiccups for the first couple of days, with the delightful addition of motion sickness and burning esophagus, along with nausea. He did ride his bike from and to work on Thursday and Friday, and today rode out and back to watch the Lion of Fairfax Race. Pretty tough for a guy who's mid-chemo and living with the side effects! And cute, too, as this photo amply demonstrates...

For my part, I have been, I will admit, a crabby bitch. I resist taking sleeping pills or anti-anxiety stuff at bedtime, only then to lay awake for hours at night, stomach grinding, which sets me up for a migraine and aforementioned crabbiness. Stupid! Joe tries not to complain, but he has genuine complaints and needs support. I sometimes hit a wall with the misery show, and I'm not the nicest nurse on the planet. Yes, we are perfect in our imperfection.

So this is what I mean by The Grind: the debilitating effects of the chemo on Joe, the Groundhog Day feel of this (oh no, not this again), the appearance of new unpleasant symptoms, the sorrow we both feel that his eyebrows are going now, the difficulty in remembering that it won't always be like this. Ugh, really, just the opposite of fun. So very easy to fall into a hole about it.

Which is probably why we were both so excited today to get the letter from Joe's doctor stating that he "may derive benefit from the use of medicinal marijuana." If nothing else, we'll have a new experience, check out the pot club scene in Fairfax (hurray, more blog-fodder), maybe come away with another way to deal with the anxiety and sheer boredom of feeling crappy.

I am grateful every second for the love of family and friends through this. If we had to be in this hole by ourselves, it would really suck, but anytime we need one, and even when we forget we do, a hand appears to haul us out of the misery and remind us both that this is so temporary and will be so worth it when we're done.

Thursday, October 15, 2009

Cycle 2, Day 2: A pox upon you, hiccups!

Joe's infusion went fine yesterday, definitely faster than the first time. The first drug they administer -- the Rituxin, the targeted therapy for the lymphoma -- took about two hours this time instead of 4 so we were out of there by 2pm yesterday. Nice. Joe's brother Marty visited with Joe for almost the whole time, Hans and Brad stopped by - really pretty sweet. Alex, Lisa and Nicholas brought dinner over, which was an excellent distraction disguised as yummy, easy foodies. All in all, it went fine.

Joe feels weird, not sick, but weird. The damn hiccups came back with a vengeance, including two bouts, each an hour long, in the middle of the night. That is hard to take. Poor Joe went looking for somewhere else to sleep in the house, forgetting that Laurent has moved back in and taken over the couch, so back he came to our room. Uncharacteristically, we overslept - can't say I blame us. Now Joe and Laurent are gone (Laurent drove Joe to work, then took Joe's truck to the city. Did I forget to mention that Laurent's car was hit and run over the weekend and is undrivable? Shit just don't quit!!), and I am here just trying to pick up the pieces of yesterday, move forward into today.

All the pills and shots are lined up for the next few days, so that we don't lose our way. We're braced for Joe to lose his appetite, to start feeling crappy and couch-bound, although his oncologist said yesterday that it's entirely possible that he won't feel worse and worse but rather feel the impact of the infusions less and less. Now that's something to look forward to!

Monday, October 12, 2009

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.

Friday, October 9, 2009

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??

Monday, October 5, 2009

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!

Sunday, October 4, 2009

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.