Head Games Part the Second

It says something about the course our lives have taken when the loss of our Internet/TV access for 14 hours (more or less) causes less more consternation and hand-wringing than the fact that one--maybe two--teeny slivers of new brain lesions have appeared inside Karen's noggin.

Karen had another MRI this past Monday and that was how we discovered the new met(s) there. While the sites she had treated previously continued to appear dormant, there was a brand new 5mm lesion on the front left portion of the brain. Another even smaller possible lesion was on the right but we'll need to wait for the star chamber of the hospital's ominous-sounding Tumor Board to determine just what the hell might or might not be happening there (it will involve fancy computer software that compensates for changing patient head positions in successive MRIs).

But that one lesion is pretty definitive so Karen will need to have it treated. And if that other one needs attention, it'll need treatment as well. As before, the course of action here will be zaps of radiation. The lesions are small enough that they could probably murder death kill those suckers in a single shot but to minimize any collateral damage to the surrounding brainmeat, the treatments will be spread out over three treatments. These will start the day after tomorrow, Tuesday the 7th.

Now, tumors in the brain are, as you'd imagine, no joke. I think if there's one thing that Karen is especially fearful of it's brain metastases. The lingering effects of her first and significantly larger radiation treatment (compounded no doubt by "chemo brain") are frustrating for her: struggling occasionally to pull the right word from the fog clouding the vocabulary chunk of her brain, some short term memory issues, and some general forgetfulness. And it's hard not to remember with a degree of dread what it was like the first time these mets appeared. Struggling to recall how to play a DVD. Wanting to say something but not finding the words. Having to nod or shake her head to yes/no questions we posed to find out what was on her mind that she couldn't say. All of that is not something she wants to return to. Who could blame her?

And yet...we took it surprisingly in stride. Because the mets are super tiny and we've been down the radiation road before and really there's no point to wetting our pants until, well, there's a good reason to urinate like firehoses. This seems totally manageable and not an especially big deal, all things considered.

So....yay?

I Have No Mouth And I Must Scream

So, contrary to what we thought, Karen's cancer is not back.

And that good news got me absolutely furious yesterday. Which clearly makes me an awful person but I'll try to explain that away in a minute.

So here's the deal. More than two weeks ago, Karen began coughing. Just a little at first but with each passing day the cough got a little worse while her energy dropped just a bit right alongside it. This unhappy tandem is pretty familiar to us--this was the same trajectory we saw when the cancer first showed up and every single time a treatment stopped working for her. Tiny cough, nap, bigger cough, longer nap, Camille-caliber cough, and so on. Granted, somewhere in these few weeks Karen developed a sinus infection but that got cleared right up with some antibiotics.

The cough, however, stubbornly remained and grew worse. This generated a series of sober conversations between the two of us about the ominous form that our summer seemed to be taking. Karen's next line of treatment (her fifth) has a fairly slim chance of working in any way for her.

Naturally, we responded to these daunting odds by packing up our terrible luck and taking the kids to Vegas for a four-day holiday shoehorned in between everyone's work, school, and chemo schedules. We had a PET scan scheduled for the day after we got back and we were expecting it to be the scissors that cut the rope to the grand piano looming three stories overhead.

The trip, however, went well in spite of this. At this point, there's a part of us that is very 'wait and see' because this disease consistently does its level best to confound us at every turn. While we tend to believe that Karen's intuition about what her body is up to is more or less fairly reliable, we know now that we really cannot count on our hunches because they haven't been 100% accurate. And it's kind of old news, in a way, the cancer coming back. We try not to panic until it's really appropriate to do so.

Vacation Photo #1

So we put all that shit aside and enjoyed Vegas as much as possible. Miranda and I drove race cars while Dash and Karen were taken on a high-speed drifting ride at the same race track. I took the kids to shoot machine guns. We ate well, slept in, and took in the seedy glories of the Strip. There were but two real hiccups during our vacation: 1) Dash and I got a hellacious chest cold that left us honking like seals and 2) when I closed the overhead luggage bin on our flight home the oxygen masks deployed and caused about an hour delay for the flight (making me especially beloved among our fellow travelers).

Vacation Photo #2

The morning after we got home, Karen had her scan and brought home our lovely souvenir DVD with all the images on it. I popped it in my PC and reviewed it. There were some spots on her liver but we've learned that a lot of the fuzziness there is due to cysts so I took note of them but discounted them. The lymph nodes in her neck were lit up more than usual which was concerning but they were small and I didn't really see any growth there. There was something going on in her esophagus but it wasn't really definitive--I figured it could be new cancer but could just as easily represent the irritation the chemo causes in her throat. So that didn't get a ton of weight.

But her right lung...that was a different story. A bright corona of something was wrapped around the lower portion of the organ and it seemed pretty clear that this was the sort of colonization we had seen in previous scans when her lungs were polluted with growth. With this representing our fifth time facing this sort of news, Karen and I took in pretty much in stride. In spite of the fact that we were facing roughly about a 10% chance the next treatment would even work. At this point, we've kind of had the panic burned out of us.

And the next day the doctor called and said everything looked good and there would be no changes in treatment and we couldn't believe it. We didn't believe it so much we went to the oncologist's to get the printed report to make sure there hadn't been some kind of clerical error. The summary of the report, which everyone kept pointing to, made no mention of what we saw on the lung while everything else I had noted was there and dismissed along virtually the same lines I detailed above. Of course, the images the office had on file at the moment completely didn't show this which left everyone wondering just what the hell we were talking about.

In the end, there was something buried in the report about her lung which dismissed it as evidence of a possible infection (she's on some new antibiotics the size of thumbs for the next two weeks to clear that up). Now, granted, I'm a professional typist of stack-ranked bulleted summaries, but it seems to me that when you're dealing with lung cancer patients it just might be worth including the actual lung discussion in the summary that everyone jumps to and depends on. Talk about burying the lede.

And this is right about when I became a terrible terrible human being.

I was mad. Actually, no, I was furious. I was furious that her cancer wasn't back and that she was, in a very relative way, quite fine.

Like I said: terrible.

The intensity of my rage caught me completely off guard and it subsided only when my self-loathing for feeling this way temporarily trumped it.

But before you join me in consigning me to into the Depository of Horrible Humans, let me try to explain it. We've always known where this awful journey is going to end. The experience is akin to being adrift in a shitty little lifeboat drifting towards the rocks that will eventually kill everyone aboard. We can't see the rocks but we know they're out there. So while you can definitely make the most of the days that are not spent actively drowning, you do so in full knowledge that sooner or later you'll be gulping in lungfuls of seawater. If you would allow me to mix metaphors for a moment, it's not unlike trying to enjoy a picnic next to a ticking bomb without a convenient timer display. Not only is this not user-friendly explosive design, it's not a terribly comfy way to live.

So when you see the rocks, you hate the rocks but at least you finally have a handle on something defined. "Hey, look! It's the end of us! Let's brace for impact." And you brace and then somehow the rock recede out of sight and you're stuck in limbo all over again. And now, you can't even trust your own eyes to get your bearings. It's hard not to feel like the cancer is sentient and actively fucking with us. And that, my friends, pissed me off something fierce.

Anyway, that was our day (and my shitty response) yesterday. We're still in the lifeboat, squinting into the distance and holding hands.

Test Time

I haven't been blogging of late because there hasn't been much in the way of news. Dash moved back home from NYC after deciding he'd like a little more support nearby. That's the biggest news. Otherwise, our day-to-day is stuck in a well-worn rut.

And it appears that we'll be stuck in that rut for awhile. This past week Karen had a new MRI and new PET scan and the reports from both were good. So she'll keep taking her current chemo on the same three week cycle until it stops working.

The success of Karen's treatment means that she celebrated her third birthday since being diagnosed. We observed by NOT going to the French Laundry and instead I made fried chicken. At this point, the whole "probable last INSERT HOLIDAY" mindset has lost its power since we've had multiple birthdays, Christmases, etc and the whole thing leaves us--well, at least, me--feeling like crybabies who keep crying wolf. So going forward, we're operating under the assumption that finality is a ways off. At this point, it feels like the odds are that Karen will beat the odds because she's been doing so consistently through this delightful time.

Not that doing so is especially easy. All of the testing feels like being subjected to a series of mock executions, with each of us wondering if this time is the time the hammer falls. Good news is a relief to be sure, but bracing for the worst is pretty reflexive this far in and expending all that very fraught emotional energy for no good reason can add a surprisingly infuriating (but minor) component to an otherwise happy bit of news. It's just another wonderful way that cancer fucks with you.

Good News? What's Up With That?

We are sneaking up on two weeks post-Karen's last chemo treatment, the one with the reduced taxotere dosage and guess what? Reducing that shit makes a difference.

It didn't look like it would at first; in fact, if anything, our initial impressions post-infusion were that the taxotere might have actually been softening the side effects of the chemo. Unlike previous treatments where Karen had about 36-48 hours before the side effects leveled her, the fatigue and the aches and the nausea and all that fun stuff hit her that same day, within a handful of hours after returning home. It did not look even remotely promising.

And then, about a full week after the treatment, she started to rebound and by last Thursday (nine days after chemo) she was more or less back to a semblance of normal. We waited a day or so to see if it would hold since there have been occasional spikes of livable life during her chemo malaise so we didn't really expect the good to hold for more than 12 hours. But, incredibly, it has.

We are now just shy of two weeks after the last chemo and she is still up and about and doing things which is a marked and very welcome improvement over what this chemo has been. She's back to doing things at her church, staying awake most of the day, and so on. On the selfish side of things, it means I don't spend my nights rattling around the house alone. It's been shocking how isolating this has been for me because, you know, I'm not actually sick. But with essentially no one else in the house except for us (Dash is in NYC now and Miranda is super-busy and absent virtually all day every day, especially weekends) and with Karen largely out of commission, it leaves me with more solitude than even a dedicated asocial introvert hermit like myself knows what to do with.

So it's nice not to talk just to myself for a change.

We are pretty happy with things at the moment, all things considered. Odds are, this is a last hurrah but it's awfully nice that it looks like we'll get to enjoy a good, full-throated hurrah and not some weak mewling one.

We'll take it.

The One With the Obscure Li'l Abner Reference

"As horrible as it's been, it's gone about as well as possible."

That was Karen's summary about a week ago of our two years plus of cancer shenanigans. She was laid out in bed when she said it, just like she is most days. And she barely had the energy to say it at the time, just like most--but not all--days. And at the time she said it we both thought that we were rapidly approaching the end game, with nightly conversations dominated by topics like "quality of life" and "ending treatment." We were edging up to calling it quits.

SPOILER ALERT: We were wrong.

Two days ago Karen had a PET scan to see if this new chemo was working. I reviewed the images on the disc we were given but, try as I might, I couldn't quite tell if things were good or bad. Which meant the news would most likely be good but we were both gripped with uncertainty and a certain degree of, oh, let's call it dread. Fortunately, there are professionals that read these things much better than I and at this morning's oncology appointment we were told that the new chemo infusion was getting the job done and then some. That is more than good news--it's great news. So, going forward, Karen will continue to receive this cocktail every three weeks. Good stuff.

As outstanding as this new is, it struggles mightily to find enough silver to line the pack of clouds that doggedly hover overhead. As nice as it is that Karen is going to stay alive and with us awhile longer, her quality of life has deteriorated to the degree that she has been seriously debating discontinuing treatment. With her long-past original IV chemo regimen, she would have at least one solidly good week out of the three between treatments. This was a good week (or, more typically, a full ten days) where she was up and about, driving short distances, staying awake most of the day, and capable of light physical activity. That model has shifted with this chemo mixture. Now she has two terrible weeks in bed (with pain, a  very sore throat, persistent and crippling nausea, and on and on) followed by a third week where she still can barely manage to do much and frequently has to retire to bed after doing the simplest thing, like eating. Her fatigue is simply crushing at this point. Every action requires her to scrape through the bottom of her Energy Reserves Barrel and into the earth beneath said barrel in order to find any energy spillage that might make it possible for her to lurch up off the couch on her third attempt. It's heartbreaking to see.

That fatigue is the main driver in diminishing her quality of life and that is why, even though we are keeping up the chemo, the actual formulation of the cocktail is going to be adjusted. The Taxocrete, according to Dr. Sherman, is the likely culprit behind her exhaustion so that drug is going to be dramatically reduced in the hopes that whatever is left of Karen's life is tolerable and worth the trouble. She gets her next treatment the Tuesday after the Super Bowl. And then every three weeks going forward until it stops working.


STATUS UPDATE

• Karen's cancer has been beaten into submission with the new chemo. Hooray!
• Karen's new chemo is making her life miserable. Boo!
• The chemo formulation going forward will reduce the Taxocrete in the hopes that it is the culprit behind the more odious side effects. Aha!
• Fewer terrible side effects should markedly improve Karen's quality of life. Huzzah!
• If that doesn't work, things could get interesting in all the wrong ways. Oh shit!

Structural Deficiencies

If I could put on my crybaby hat for a moment (or, rather, acknowledge that I constantly wear said hat and rarely remove it), I'd like to confess to you, Gentle Reader, that the most frustrating part of belching up this word slurry for the last couple of years is that try as I might I cannot avoid

including bad or otherwise doom-y and depressing news or details. So please know this:

Behold me!

We have good days here. A truly surprising number of them (and no one is more surprised than we are). So rest assured that things here are not so unrelentingly dark and terrible but the facts undergirding our day-to-day, well, those fuckers are. They are the increasingly fractured bedrock upon which the foundation of our lives is built and every so often we feel the house unexpectedly shift beneath our feet or get burned when the tap gushes flame instead of water. (Please Note: If you are in the market for a tortured metaphor, let me know. Clearly, I have more than I need).

For instance, most nights shortly after dinner Karen will retire to our bedroom to swallow more than a dozen pills and to smoke up some of the Berkeley Patients Care Collective's finest dank ass weed. Because I am fundamentally incapable of staying put for any period of time, I pace around the room, walking a large U down my side, across the foot of the bed, up Karen's and then back again. Over and over and over again, monologuing like Syndrome in The Incredibles because Karen is generally too tired to talk all that much by this time of the day. But for some clearly insane reason she does not merely acquiesce to listening to me babble on about the crafting systems in Dragon Age: Inquisition or my too frequent and (wholly(probably)) unfounded panics that I'm going to be fired (the transition to sole breadwinner has, to be kind about it, been rocky for a certain family member that shall not be singled out except to say that it is me) but actually encourages me to talk. For me, this is generally the highlight of my day although I wish Karen had the energy to spew out just as much verbal garbage back at me as I

Did someone say "Manifesto"?!

cough up on her because the lopsided nature of these "conversations" at times leaves me feeling as if I've taken her hostage and am haranguing her with my manifesto. I take some measure of reassurance in that she insists that she enjoys this time as much as I do. So these moments, these muted humdrum routine everyday nothing remarkables, these are the good times and they happen just about every day.

And then. Well, then there is all the peripheral and unavoidable garbage that stubbornly insists on casting an impressive Valley of Death shadow for us to walk in. Like how this new chemo treatment has finally taken all of Karen's hair. Or how, during one of these evening conversations, Karen shared that where before she felt sick--well and truly and terribly deeply awfully sick--it is only now, within the last few weeks, that she feels as if she is actually dying. That the energy she lacks signals not debilitation cruelly wrought from her treatment but the steady erosion of her being, as if the world were slowly and methodically erasing her. That black pearl of unwanted insight can sour an evening, let me tell you.

And there's Christmas which, like the rest of our holidays this year, was awesome and no mean feat considering Karen had her second chemo treatment two days prior. We had a great Christmas Day, teed up by a lovely Christmas Eve dinner attended by my uncle and capped off by the whole family sitting down and watching Elf. We really hadn't seen this movie since we had seen it the first time, in a theatre some 10 years ago, and everyone clearly enjoyed it. It really could not have been any better. And yet I found myself choking up well before the movie's factory settings intended me to. In the words of Gandhi, "WTF?"

I can't come up with a clever way to explain, so here's an inarticulate attempt. It was so clear that this was our final Christmas as a four person family. Barring a miracle (and I think we've used up our share at this point) Karen won't be here for this next year. I know this because the night before I held her while she cried about never having Christmas with me or her kids again. I know this because Dash will be leaving home to live in Brooklyn on December 31 and who knows when he'll come back to visit. The fact that we were enjoying an evening without any rancor or casual sniping or any other of the usual American family dysfunction only made things, ironically, worse. The movie's setting didn't do me any favors either. That NYC locale only reminded me of the start of Karen and my life together. And when I saw the city in that movie I was gripped by a sense of things ending, of circles closing (abetted, no doubt, by the ending of Dash's tenure in our home). So once again: good times, bad times, you get the picture. I'd be a lot more content if I could just be happy or just be miserable one at a time and not both simultaneously the way I seem to be trending. 

Tonight, Dash will be having some friends over for some sort of Bon Voyage party. In three days he'll take his new winter coat and his old clothes to Brooklyn to start his new life, moving into his new apartment around 2PM on January 1. I'm going with him, but I'm only staying until the 3rd. That will get me home in time to be available for work if necessary and to squeeze as many pacing-around-the-bed-hostage-situations as possible out of 2015.

Behold Plan D

Once upon a time  a trip to the ER would be the most remarkable part of my day but these days, not so much. So consider that whole "things change" saying as validated.

But before the ER, there was Thanksgiving. We had 12 other people join us for a hefty party of 16. Miranda and I did the cooking, we were blissfully free of political discussions, and I believe everyone had a great time. After the noro-virus fiasco of last year, it was especially nice to pull off a major holiday without any sort of medical drama. There's a lot of pressure for holidays to go smoothly these days so it was particularly gratifying to have Thanksgiving be so enjoyable.

If there was a dark side to Thanksgiving (and it really wasn't because we know about real dark sides) it was that Karen was enduring sustained and increasingly painful headaches. Just about a year ago this time unrelenting headaches heralded the arrival of the cancer's spread to Karen's brain. Throw in some forgetfulness and reaching for the occasional word and it was worrying. So Karen headed to the ER to check it out. A CT scan revealed nothing. So we chalked up the headaches to cancer in general, the forgetfulness to cancer in general and the Chem 4 weed, and that was that. Karen has a brain MRI scheduled for later this month, so anything the CT might have missed will be caught then.

The Maui Mauler, Kimo Sweet!

So that was Monday. On Tuesday, Karen returned to the chemo suite for her new Cyramza and Taxocrete treatment. I pause to note here that every time I say "chemo suite" aloud it sounds more like the name of a Hawaiian wrestler than a place. The infusion went fine with none of the abdominal pain that preceded Karen's colitis the last time around. She basically just slept through the whole thing while I wrapped up a document for work. After three hours we left.

And she felt pretty well. In the immediate aftermath of treatment, she was tired but after a nap she was up and about with good energy. That carried all the way through the next day. And it wasn't all that shocking, insofar that, excepting the headaches, Karen has been feeling great ever since she stopped the Zykadia. It's ironic that when Karen is medically at her sickest these days, she is at her best. When her body is healthier from treatment, the side effects sap all her strength. We were encouraged and thinking that maybe this mixture wouldn't be so bad and then Thursday came. And then Friday and Saturday and now we're thinking, nope, we got that wrong.

I have to point out that Karen is doing better than with chemo the last time around. She's not vomiting and is barely and rarely nauseated. Her stomach is doing much better than with the Zykadia. But this new stuff, it absolutely ransacks her energy reserves and leaves her languishing in bed most of the day. She gets a little breakfast, joins us part of dinner, and that's about it. She has also been in the grip of crushing body pain. Thankfully, that seems to have lightened up some today but she is still needing to use all her painkillers and plenty of marijuana to manage it.

Now we wait and hope that this eases up at some point and buys her at least some good time in between the treatments.