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.

A Nice Big Pile of Awful

Another hard day for me at Hit Detection HQ.

So the good news is that if I want to have a second career other than typing-monkey/joystick-jockey, I apparently show promise as a radiologist.

The bad news is that I got that little nugget of career guidance from our oncologist who confirmed my reading of Karen's most recent PET scan: her cancer is back.

Let's roll this back a bit. Last Thursday Karen had the scan and brought home the DVD with all the images on it. I loaded it up and quickly found a major area of concern in the lymph nodes in her neck. I also thought I saw some activity in her liver, as well, but that organ is a lot harder to read for a cancer hobbyist such as myself. Still, it looked pretty bad--if I was right and had noted the cancer's triumphant return then that meant that the Zykadia had stopped working and we were looking at Plan D. And boy oh boy nothing says Guaranteed Success quite like "Let's try our fourth best plan. And maybe the fifth just for fun."

While Karen decided she wanted to wait for the official word before she got to feeling all despair-y and thus she did not want to look at the scan or even really discuss it, she did manage to transform this sow's ear into a silk purse opportunity by realizing that if the Zykadia wasn't working she could stop taking it. The gastric side effects of this drug, while not debilitating, have been a beast; in fact, Karen skipped her Wednesday dose in order to ensure that she'd be able to lie still long enough to have the PET scan on Thursday. So with a possible reprieve in the wings, she asked me to call the doctor and ask, since the PET scan looked bad, if she could go off the drug immediately. Our next appointment wasn't until the following Thursday (which is still two days in the future of this posting) so she didn't want to wait a whole week.

I called. After relaying our tale, we were not told to stop the Zykadia but our appointment was moved up to Monday (which is yesterday in the timestream). Meanwhile, Karen decided to stop anyway. She's had "drug vacations" previously, so we didn't feel a couple of days without nausea and pain and everything was worth the risk, especially since I was certain there was no risk thanks to the PET scan.

So. Monday.

First off, I didn't make the appointment so please understand if there are some lacunae in the info following. I will try to find out more on our next meeting, this coming Thursday. There was some scheduling tomfoolery that popped up at the last minute and while I would have made our initial appointment time, I was stuck in traffic when we found out about our new improved time five minutes after the appointment supposedly started. Fortunately, Miranda was able to join Karen.

Another hard day for me in my chilly home office.

I stop here to mention that it's been pretty cold here so of course our heat went out and thus this has been a super duper extra-special couple of days. Our luck = PHENOMENAL.

Anyway, Dr. Sherman opened the appointment by asking "Who thinks they're some kind of radiologist?" He then added, "Because they're right." And then he confirmed that, yep, the cancer is clearly back. We didn't get a lot of details beyond the lymph node bit because the official radiology report is still being created, but this instance was so clear we didn't need to wait.

Happily, Karen could stop with the Zykadia immediately. Also, after more than a year of daily abdominal injections, Dr. Sherman decided to stop Karen's Lovenox shots in favor of larger aspirin doses to control possible blood clots. The shots have been a sporadic nightmare while the resulting bruises have been a consistent one. At this point, there is a heavy storm front of pooled blood spots in her stomach that are obscuring portions of the PET scan images. All of this was welcome news.

Less welcome was the rest of the news. Karen led off by flatly asking how long she could expect to live if she stopped all treatment right now. Sherman ventured that she would have about two to three months. BUT, he added, she was not at a point where she should stop treatment. She is still doing "relatively okay" he said and, he added, "You will know and I will know when we reach that point and we haven't yet."

Great. So what now? The immediate plan is a new kind of chemo that, just like the Zykadia a few months ago, was just approved by the FDA. That new approval could make the treatment tricky for our insurance to cover, but whatever. We will deal with that if we have to. Also, there is a clinical trial at Stanford for which Karen could be a candidate.

This all sounds good but there is plenty that doesn't. For starters, the doctor running the trial--who Sherman called during Karen's appointment--was unenthusiastic about Karen's suitability as a subject, given her specific treatment history. Still, Sherman and we will be pursuing this possibility to see if we can squeeze in. In the interim, Karen will start chemo again, but she will wait until after Thanksgiving since an ungodly number of family members will be joining us this year.

As for this new chemo, it is far from a slam dunk. It's called Cyramza (apparently these drugs are named in a manner that aims to be evocative of village names from bad, old-school RPGs). If I'm getting the information right from Miranda and Karen, then Karen will be getting just this drug and it will not be used in combination with another (Taxotere--do you see what I'm saying about these sub-Cudgel of Xanthor names?). This should make it more tolerable though it comes with all the classic chemo joys like nausea, hair loss, fatigue, neutropenia, and more including the potential replay of the hellish colitis Karen had with the last chemotherapy regimen. It will all be like a great big terrible reunion.

The big thing to know about this stuff is this: the response rate to the standard treatment (meaning the percentage of patients that derive any sort of benefit) is 14%. In contrast, the combination therapy has a response of 24%. These are not great numbers, especially that 14% one which, I believe, is the one we get. So, yeah, I'll be asking about why we're not doing combination therapy when we drop in this Thursday for our chemo tutorial.

I don't get it.

And thus we stumble into the holiday season. We are excitedly looking forward to our happily crowded Thanksgiving and, of course, the Festival of Pies two weeks after that. If you can make it for the Pies, I heartily encourage you to do so. Somewhere in there we will get an idea how the new treatment options are working. And we probably won't need a PET scan to tell since, with a 2-3 month survival window, I imagine Karen's symptoms or lack thereof will tell us everything we need to know about whether it's working or not.

And just so this doesn't bum you all out too much, here's an amusing little quote for you:

"Who's this Rorschach guy and why does he have all these pictures of my parents fucking?"

I love that joke. You're welcome.

STATUS UPDATE

• Karen's cancer has returned which means the Zykadia has stopped working. Thus, she is no longer taking this drug.
• Karen will start a new chemo regimen with a newly-approved drug, Cyramza.
• The response rate for this drug is 14% when taken alone as she will likely do. The response rate for it in combination therapy is a still-weak but better 23%.
• We are trying to get Karen into a clinical trial for a new med at Stanford. The initial reaction from those running the study was not that enthusiastic but we are pursuing this nonetheless.
• Without treatment--or in the event no treatments work--Karen is looking at 2-3 more months of life.
• Writing that last bullet point is a very efficient way to inject a little shot of hell into your day.

One Not So Fine Day

It would surprise you how unnerving a quiet night can be.

Karen has been doing very well with the Zykadia. Her energy, frankly, has been kind of startling. She’s out running errands just about every day, reading a lot, doing things with her church, hanging out with us past 10PM, and watching some truly sub-par television.

But throughout today and into tonight she did not do as well. From very early in the morning she was sick and her stomach was sharply and persistently cramping. So she ended up sleeping and sick in bed all day. She joined us for dinner and was back in bed before we knew it. If she was on her feet for two hours total today, I would be stunned.

It has been a day of sustained, dull suffering broken up by a few moments of relative ease. For us both. Seeing Karen languish all day was a terrible flashback to the grinding, bedbound wretchedness of chemo. We know that the Zykadia’s efficacy will most likely wane by the end of the year and that we will yanked back to those chemo days again. Actually, that’s not quite correct—we don’t know that the Zykadia will stop working so much as we expect it. We wait for it. We are actively waiting and watching for the first sign that, uh-oh, here we go. There is an unspoken diagnostic subplot woven through every day.

And now that I see all that written out I have to say that what is really rattling me is not that today is a look back so much as it is a nasty little peek into what lies ahead when the drugs—any and all of those motherfucking drugs—stop working and days like today will be the new version of good days, breaking up a relentless wash of awfulness with something small and miserable that miraculously feels like a respite.

Two years in and we count time in prescription refills, every call to the drugstore another uncertain step toward some cruelly foggy terminus.

Karen has a PET scan later this week.

Against our better judgment, we expect good news.

Injury, Meet Insult.

So the latest feature to be added to our cancer fun: physical therapy.

As you may recall, gentle readers, Karen has been experiencing increasing pain in her shoulders and arms. It has progressed to the point that she cannot reach far or all that high or low--she cannot load or unload a dishwasher, reaching to pass the pepper at the table can be startlingly challenging, and getting a shirt on over her head is more easily said than done. Happily, for the most part, we can all step in to help her out with these things. I've placed a number of drinking glasses on the countertop, for instance, so she no longer has to struggle to get a glass from the cabinet. And, while it is diametrically opposed to a vow I made to myself in college only to help ladies out of their clothes, I pitch in where necessary to help dress my spouse. Such are the compromises to personal integrity that marriage mandates, I suppose.

Sadly, this is not the sort of dogpile Karen is experiencing.

With the pain steadily growing in intensity, we consulted an orthopedist who diagnosed arthritis and/or bursitis in both shoulders. Frankly, it's just not fair. Dogpiling on even more medical issues when Karen is already dealing with all the thrills and madcap tomfoolery that come with the cancer and the meds used to treat it...it is karmically wrong. I'm not one to wander the stormy heath railing at the heavens, shouting "Why me?" (because, more often than not, my real response is not even "Why not me?' but "Of course, me') but in this one specific instance, it is terribly tempting to stomp up and down our street giving the finger to the clouds above in a fulsome display of what you might call an Enraged Episode or a Psychotic Break but which my neighbors and I have come to know as Just Another Tuesday.

At any rate, the short term solution is four weeks of physical therapy followed (most likely) by cortisone injections. We had our first PT session last Wednesday and we'll be heading back just about an hour from now for Session Number Two: Electric Boogaloo. The good news is that it does seem like the PT could really help. Long story short: it's quite likely that the fatigue the cancer so reliably churns out has led to a collapse of posture and so on that has stressed her joints and muscles in the affected areas. On the other hand, the actual therapy is pretty unpleasant and leaves Karen in arguably more pain than she had going in, at least for the rest of that day. So, hooray for that.

In solipsistic news, someone today asked me how I was doing in, you know, that way that means No, how are you really doing? and in fact I think they actually even said that after my reflexive "Okay" response. And the answer didn't really change. I'm okay. We all are, more or less. Weirdly, the cancer has become kind of normalized and integrated into our lives in a way that was unimaginable just about two years ago. While we deal with it in some way virtually every day, it is in most ways a purely unremarkable part of our lives.

The Coffeys go for a drive.

That said, I must admit that my old pal Creeping Dread is hanging around more than usual. Here's the thing:  after some shipping hiccups, Karen's latest refill of Zykadia finally arrived yesterday. While it's great to have the medicine, in my mind there's a giant invisible countdown calendar that ticks off a box every time that delivery with the happy biohazard symbol on it shows up on our doorstep. This shipment unofficially heralds month four of this, Karen's third line of treatment, and means we are likely at best half way through the expected efficacy of this drug. Our path post-Zykadia is not especially clear but in our conversations there is a definite sense that Karen and I are both bracing for finality and resolution to this mess.

Way back when this started, we came up with the analogy that this entire experience is a lot like a slow-motion car crash. The air bags deployed a long time ago (that was the crizotinib) but we rocketed through the windshield a while ago and now, well now we're weightless and airborne and squeezing our eyes shut as we prepare to finally hit the pavement.