Lab Rat

I've been doing some digging around on the intarwebs to see if there's something more we could do to alleviate Karen's fatigue. Here's the thing: completely unscientific anecdotal testimony from other lung cancer patients that have taken or are taking crizotinib have done so for nine months and longer. One guy has been gulping down those $6000 a month pills for two years now. Now granted, this is completely unscientific and is far from being a representative field but...nine or more months is an awfully long time to be lying around the house without the will to do much more than pick out the day's pajamas. So we are embarking upon a science experiment. Unfortunately, unlike the Great Unknown Drifter Project of '09 I won't be able to do any dissection nor will I get to spread  lye around  my crawl space. But it still should be interesting.

Specifically, Karen is going to try not taking the compazine she's been taking twice daily to deal with nausea from the crizotinib. Fatigue is a possible side effect from the compazine so it's possible that's the true culprit here. If we can deal with the nausea in some other way (or if it's just become more tolerable) and this is indeed the cause of her fatigue then Karen could be back at near to full strength soon. Maybe. Who knows. But it sure beats sticking our thumbs up our asses if only because, you know, we always end up needing to use those thumbs to handle our food.

Our ultimate goal. For Science.

Why would we think this would work? Who died and made us Kings of Science? No one. But based on the same completely anecdotal and nonscientific evidence I have gathered from an online lung cancer support group I joined simply to poll about the fatigue, this has worked for some. Most of those guys didn't have any fatigue (just a lot of constipation and diarrhea though obviously not at the same time). Also encouraging us is the fact that Karen's energy does definitely seem to be making a comeback. She was awake all day today which sounds like more of a milestone for a preschooler than a grown up lady woman, but trust me on this. It's a marked change.

So here's to science. We're just a couple of dreamers, like Anthony Michael Hall and that kid that looked kind of like Ralph Macchio only he wasn't actually Ralph Macchio. If this works, we're going to venture into some Weird Science territory to make things even more interesting around here.

Holding Steady

It's been a week since I last updated this blog and there's not a tremendous amount new to report. Karen's energy does seem a little bit better of late which is encouraging. It's possible now that we're hitting the four week threshold with the crizotinib that she's easing into the 4-6 week window where maybe her side effects will start to diminish. That said, some days are better than others. Yesterday she felt energetic enough to venture out into the world for an hour or so and we test drove a car. Today, she rested a lot more. That is how it seems to be going for now: a day where she can handle a bit more activity followed by a day or so of recovery. At least the nausea has eased up some.

The rest of us are doing pretty well. Miranda got rid of her money pit VW and traded it in towards a newer, more reliable Corolla. She's taking on more hours at the bakery which is good. Dash is beginning to dabble with Krav and may start taking classes. And I'm working, writing, and spinning all sorts of plates.

Karen has a big blood draw next week followed by an oncology appointment on Feb 1. We may have more to report then.

Maintaining Altitude/Attitude

Another day at the oncologist! Huzzah!

My friends call me New Normal.

What to report? Eh, not all that much. Karen has lost three pounds since our last appointment which isn't great but not a cause for concern just yet. While she's on one level happy to be shedding some weight, basically we want her weight to stay the same as when she was diagnosed. As Kathy, our NP, put it, this is her "fighting weight." I of course related to that all too well.

Karen's fatigue is slightly better but there are good days and bad days. We are keeping our fingers crossed that she can get back to something closer to full speed and resume working, even if just from home. We explained this to Dr. Sherman and he told us if that's our goal, then he's going to do whatever he can to make that happen. That said, he added, we may want to consider that we have (and I shudder as I type this suddenly terribly overused term) a "new normal" and should adjust our expectations and lifestyle accordingly. If we want to go live in Hawaii, he said, now's the time. Do the things we want to do. So we kind of are, although that doesn't include a move to an island paradise where I'm likely to go all Travis Bickle in a week.

What we are doing is slightly altering our general approach. While we're still going ahead with super-exciting happy fun things like finally writing a fucking will, we are trying to focus more on the day to day and less on the end. We know the end is coming but we don't know when. Some people have gone two years on the meds Karen is taking. We should be just as prepared to enjoy that potential two years as we are prepared to deal with the unpleasantness that will eventually and certainly come. We are shoving the death watch mentality into the back of our brainmeat for the time and focusing on living our life the way we have until know. With a few adjustments. And more care and kindness than this pack of dingoes generally manages.

We're Arrogant New York Prick and we've come to rock!

Oh, during our visit with Dr. Sherman he kind of let slip his general contempt for Dr. Sirott and some of the other medical personnel we've dealt with (he and I concurred that the pathologist Dr. Poor was all too aptly named). I can see why Sirott is not a big fan of Sherman. He's kind of an arrogant New York prick but, you know what, he's our arrogant New York prick and we couldn't be happier. In marginally related news, Arrogant New York Prick is the name of my new band.

Karen's energy was good enough today to make it to the mid-year parent potluck at Dash's school. And of course I ruled the Potluck Thunderdome, wowing the crowd with a lemon buttermilk chess pie and my S'mores pie with homemade marshmallow. I'm 6 for 6 in potluck victories. I intend to go for the full four year sweep when Dash becomes a senior next year.

I will be a legend.

On the DL

So the good news is that the crizotinib really does seem to be working. Karen is breathing much better and she's not coughing anywhere near as much. We've been managing her nausea pretty well and have hit upon a series of treatment solutions (including an occasional assist from Dr. Snoop Dogg) that keep it at bay most of the time. The one thing we haven't been able to deal with effectively is her fatigue. This is not the fatigue she was experiencing from the cancer--it's from the meds. It's a subtle difference and in practical terms it really doesn't matter: dead tired is dead tired no matter the cause. That being said, when she's not fatigued her energy is markedly improved over what it was a month ago.

Karen has not hit the wall with the same results as this freak.

But she has effectively hit the wall. She's tired most of the day, getting up for an hour or so before needing to go back to bed for a nap or just some rest. Although she was doing her best to soldier on working from home she just doesn't have the energy for it anymore. As a result, effective today she has taken disability leave. There's a chance that the fatigue could lift after six to eight weeks so Karen has benched herself for just eight weeks, hoping that the tiredness will eventually lift and she can return to work. That's one benefit of the targeted, oral drug she's taking--unlike chemo, where the side effects get worse over time, the side effects of this treatment tend to become more tolerable.

It's a drag because Karen absolutely killed herself all year working for a promotion that an extended leave (longer than what she's taking) will at best jeopardize if not outright cost her. On the other hand, I get to have her around the house all day, so that's a plus.

Another side effect of this whole cancer thing: I've been reordering my Netflix queue. For some reason, I'm just not in the mood for my usual fare of subtitled gloom. It's remarkable how palatable something like Premium Rush can be when your brain cycles are consumed with all manner of nastiness.

The New Year

There's nothing like hanging up a new calendar to get you thinking about the year ahead. Well, that and a cancer diagnosis.

The irony of this whole ordeal is that as the end of 2013 started coming into view, Karen and I started thinking about where we would be in the next few years. We had one kid out of high school and another on course to graduate in a year and half. After that, what? We began to fantasize about a life as empty-nesters. What would that life look like? We weren't sure, but there were lots of options, all of them appealing in their way. About all that seemed certain would be that we'd get some truly enormous dogs and go to brunch way more. And maybe eat a big messy swath through Italy one spring. After 22 years of marriage we were feeling almost like newlyweds, looking forward to whatever shape our life might take.

So when the rug got yanked out from under us around Thanksgiving, all of that was lost. The future was still uncertain for me only waaaayyy more uncertain. While I'm old enough to know that you really can't plan the course of your life, I had felt reasonably secure that whatever lie ahead there would be one constant--Karen.  

For Karen, of course, her future is excruciatingly certain. The sense of loss she's grappling with is overwhelming in its enormity. There are no weddings, no college graduations, no big family Christmases at our new home with all the land and maybe a pool but definitely the two gigantic dogs. When your wife is sobbing "I would have been a great grandmother"...well, those are just hard times.

The reshaping of our family's future is sinking in with everyone. Tonight was a rough one for Miranda and she wound up crying in her mother's arms. While her mother's absence in her all aspects of her future was unbearable, she was especially upset at the idea that Karen wouldn't be there to help her pick her wedding dress. And how do you console her? As a parent your impulse is to say "No, we'll make it happen," but that won't work this time. There is no good way to spin the truth. That said, I promised that I'd help if/when that day came and I reminded her that I had infinitely better taste in clothing than her mother anyway.

In the end, we wound up laughing and Miranda lobbed her wadded up Kleenexes at me. Then she left to take her shower and go to bed. Karen and I hugged, I kissed her goodnight, and we continued drifting sadly into the next uncertain day.

Guarded Optimism

Today we visited the oncologist for a check-in and left feeling unusually positive. That's a nice change from the shroud of gloom we've been piloting through the last month or so. We were so upbeat we bought fancy panini sandwiches. These are very fancy sandwiches which were created in ye olden Europe and eaten only by nobility. They are not to be confused with a grilled cheese sandwich.

This positive update is John Candy approved.

Anyway, Karen has been feeling pretty well lately. We figured it was because she had shaken the cold that attacked all of us over Christmas and because she'd had close to two weeks off work to sleep and watch Die Hard. Turns out the crizotinib may be the cause. Our nurse practitioner, Kathy, confirmed that Karen was breathing better, she was no longer wheezing, her weight was stable, and she was generally doing pretty well all things considered. While the official line is that the drug should take longer for patients to see positive effects, Kathy told us that she had seen lots of patients respond this quickly. So Karen would appear to fall in that happy 60% that benefit from crizotinib. She's having some issues with nausea but the anti-nausea meds (including our state-sanctioned weed) are doing a pretty good job keeping that under control.

All this being said, I'll feel even better when we eventually have new scans taken and we can see actual measurable improvement. Assuming that it's working, Karen will keep taking this drug until she stops responding.

And how long can we expect her to keep responding? It's hard to say. Since this is a fairly new drug, there are not a lot of long-term studies to provide information. Still, I'm looking into it and preliminary research would imply that we can expect Karen to be taking it for eight to nine months. We'd prefer a couple decades but we'll take it for now. This potentially longer response time just might mean I can dodge that cruise.