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.

Not To Be a Bummer, But...

After a number of confused conversations in the aftermath of the previous posting, Karen and I have decided that we needed to make a bit of a clarification about her current condition.

First off, she's clearly doing much better than she has in quite a long time. And her recent PET scan was stellar, with essentially no evidence of disease. That, too, is pretty awesome. But unfortunately this does not mean she is in remission or cured or really even cancer-free. The Zykadia is doing pretty much just what the crizotinib did starting 22 months ago: it is stomping the cancer flat and tremendously improving her quality of life.

But the bottom line is that this treatment, like all that have preceded it and those that will follow, is only buying her time and will not eradicate the disease and return her to a normal life. Eventually the cancer's exuberant embrace of Darwinism will lead us to a point where it adapts, stops responding to the medication, and reasserts itself. The odds are that at some point in 2015 life is going to get extremely interesting in all the wrong ways.

I sincerely apologize if my earlier post led anyone to believe that something near miraculous had occurred here. And I'm just as regretful if this clarification comes as a rude surprise to anyone, as well. I will endeavor to be clearer going forward.

Substantial and Gratifying

During our time in Cancer Club, we've consistently had to wrap our heads around the brittle and dry terminology of all the various test reports. Blood tests, MRIs, PET scans, and more, all presented to us in a very professional, clipped and to-the-point manner. It's a weird, very distanced way to receive news that tends to be literally life and death.

So when we got the report from Karen's PET scan from this past Monday, we were struck by the comparatively effusive language it used. "Substantial and gratifying response to therapy." And it goes on from that relatively gushy beginning to explain that there is essentially no cancer currently taking up space inside Karen.

This is about as fantastic a result as we could have hoped for. Two months in with the Zykadia and it is kicking major cancer ass. So the big question--which we are disinclined to ask right now--is how long will it last. But since we AREN'T asking, we're just going to enjoy the relative normalcy we've got going on at the moment. Karen's shoulders and arms continue to hurt pretty much all the time but her energy is better and she's generally feeling quite well. So, hooray and all that.

Quick Note: Karen wants to thank everyone for their kind thoughts and their prayers. She is certain that they have helped her throughout this ordeal. Hellbound infidel that I am, I'm more than a wee bit skeptical that they've really made an impact but I can say that the support they represent and the caring they clearly convey has been a boon to us all and has made the last 22 months infinitely more bearable than we ever thought they'd be.

So thanks! You're awesome!

No really...you are!

Head Games

Not a lot going on here these days which is a good thing because it's when things start getting interesting that they start getting awful as well.

Karen had another MRI on her brainmeat today and the results were excellent. The anomalies noted a month ago have been written off as just that: there has been no growth at those sites and they largely seem to have cleared up. There are a number of factors that can contribute to the less than definitive results we had last month but the bottom line right now is this: Karen's brain is clear right now.

As for the rest of her cancer farm, we'll know more later in the month when she has another PET scan. She seems largely asymptomatic in terms of what we've come to identify as clear cancer signs. So there's not coughing, wheezing, struggling for breath, etc. Her energy is bouncing back some, actually, although the pain in her shoulders and arms is getting worse.

Not much to say beyond that. Allow me to apologize for this post's lack of delightful anecdotes.

Vegas, Baby

Thursday morning we received a call from Dr. Moini regarding Karen's upcoming brain radiation. Long story short: after an additional MRI and consultation with multiple other physicians the decision was reached to hold off for now. The MRIs are not 100% clear and since Karen is asymptomatic (unlike last December) there is no urgency to treat her right away. Instead, the plan now is to monitor her brain with monthly MRI scans and act once things are more definitive.

That was good news. Also good: Karen is tolerating the new bare bottom dosage of Zykadia pretty well. While there is intermittent stomach cramping she's not vomiting nonstop anymore.

This view can be yours with just enough whining!

I had a meeting in the city on Thursday but by the time I got home around 5PM, I had a proposal for Karen. In light of the fact that our 24th anniversary was on the upcoming Tuesday and that her week had been cleared thanks to no radiation and that I had successfully wrapped up my work for the moment, I suggested that we pack our bags and immediately fly to Las Vegas for the weekend. There was an 8:50 flight I felt confident we could make provided we moved with purpose. Karen started packing, I made flight and hotel reservations online, threw some clothes into a bag, and we were off. Karen's sister was visiting at the time and would stay behind to handle various repairmen we had coming in over the next few days.

Sometimes, things just kind of go right. We not only made our flight in plenty of time, we were early enough to jump on an earlier flight, arriving about 40 minutes earlier than planned. I had booked a literal "room with a view" at the hotel and when we checked in I told the desk clerk that I fully understood that the whole view thing could be very subjective but I asked her to please make sure that we really had a good one. The thing is this: Karen (and I) had really wanted to take one final trip together but it just didn't seem to be in the cards until, well, that day. So I really wanted this (probable) last anniversary and (likely) final Vegas trip to be special for her. When I explained this to the clerk she nodded somberly and asked me to wait a moment. After consulting with her manager, we were upgraded to a 56th floor Sky Suite with a great view.

So, if you're ever thinking of staying at the Aria I can tell you this much: they're pretty nice people there.

The next several days were pretty great. Karen's sleep-heavy schedule was more or less retained but shifted a bit to accommodate more activities. On Friday we shot machine guns at Machine Guns Vegas and went out for a lovely dinner. Saturday we stuck around the resort. I worked out, Karen lounged by the pool and then we got a massage before another nice dinner. That night we went to the Paris casino to see the dueling piano lounge act that we first saw more than 10 years ago and that Karen loves. And on Sunday we wandered around the strip some and rode on the High Roller observatory wheel.

Bang.

One of the most interesting things about this trip was the fact that while Karen is doing relatively well there's a pretty heavy emphasis on the "relatively" part of that. Any walking beyond routine, around-the-house locomotion is not an option for her. Therefore, we used a wheelchair the entire time we were there to get around--the endless expanse of a casino floor is way too much for Karen these days. We didn't mind using the chair and it was in a perverse kind of way fun for me, at least in terms of navigating crowds and obstacles. Less pleasurable, trying to find the mandated elevators hidden away at various locations and at the pedestrian walkways on the Strip. We gained a whole new appreciation for the obstacles facing people with mobility issues.

And on Monday, we flew home.

The trip was basically great and we couldn't be happier about having taken it. Even with absolutely zero planning, everything went about as well as we could have hoped. Granted, my blackjack winning streak was seriously jeopardized at one juncture, but I pulled it out on the last night and got just a little bit ahead. This trip was one more final thing off Karen's bucket list and we had a great time doing it.

Not that it was all wonderful all the time. Unfortunately, I got kinda melancholy Saturday at the piano bar. Watching Karen laugh and smile and sing along and just have the greatest time was intensely gratifying but I couldn't escape why we were there. And I couldn't help but feel pained by the happiness so evident in the way she glowed that night knowing that moments like these were all too painfully numbered. I looked at her that night and thought about how much I'd miss her.

That night--and, frankly, a few other times--we talked about this, where we were headed, and how hard goodbye was proving to be for us both. But it didn't cast a pall over the weekend. We've been sharing everything with each other for 24 years as spouses, 36 years as friends.

We were cool with it.

Vacation Time

Ah, if only we were going on a real vacation.

Instead, Karen is taking a Zykadia vacation. The side effects have gotten to be too much. So, in an effort to hit her internal reset button, we and our doctors have decided for Karen to take a break from the chemo drug. Karen had two options: go without for two days or go nuts and hold out through the weekend for a whopping four days. Right now she's leaning strongly in favor of four days because she's beyond over it. The hope is that when she resumes the Zykadia that she will better tolerate it.

To make that even more likely, we are dropping her dosage again, down to 450mg. This is pretty much the bare minimum dosage. If the side effects return and remain intolerable then we will have to scratch Zykadia off the list and move to the next option.

In cheerier news, Karen's step-sister and all around awesome humanoid Bridget jetted in for a whirlwind two day visit. It had been a year since we last her and it was just great to have her around. She and Karen got mani/pedis one day and spent as much time together as Karen was able. If there's an upside to this cancer business it's this: it's fantastic to visit with all our family and friends. Karen's sister, Liz, will be here in a week.

So for a cancerous summer, all things considered, not too bad.

Brainstorm!

Sadly, Karen's brain does not look as badass as this.

Over the last few weeks we had noticed that Karen's memory seemed to be slipping a little. She was occasionally struggling to think of words and she had trouble imprinting new memories. As a result, we've been helping her finish sentences and repeating basic things like "We're having chicken for dinner" three or four times a day since the info isn't exactly sticking all the time. This small bit of cognitive slippage fostered a little bit of trepidation going into last Wednesday's MRI. That sliver of dread was offset somewhat by the fact that Karen is taking oxycontin, dilaudid, copious amounts of marijuana, and she's exhausted a lot of the time. So she's got 99 problems potentially affecting her brain and a met ain't one (necessarily).

Man alive, was Wednesday a long day. We met with the oncologist at the unfathomable hour of 8:15AM. That appointment went well enough. Karen had dropped another 2 pounds over just the last week and her blood pressure continued to dip lower nearly every time it was taken. But, the nausea and vomiting and everything that was making life so hard for her hadn't been an issue that day so we thought maybe she'd passed a side effect threshold to a place where the Zykadia would be more manageable. We left that meeting feeling a little optimistic.

The MRI appointment was for 9:30 so we had just enough time to run home and shove some food into our faces prior to that. Karen smoked up the last of the Chem 4 prior to her test so that she'd keep the nausea at bay and to help her relax. The MRI itself went fine but as we waited and waited after the test to meet with Dr. Moini for the results it became clear something else wasn't 100% fine, namely the administration at the radiation office. Long story short: they hadn't updated their schedule so the doctor was occupied and was not going to be free for a very long time. After more than an hour of waiting and with Karen visibly wilting by the minute, we left for home. Karen took right to bed and I had my weekly work conference call. After that I headed to Patient's Care Collective to stock up on more Chem 4. Driving back, Dr. Moini called and asked us to come in.

While I was driving home, Karen began puking all over again. That side effect is pretty unpleasant all on its own but the worst thing is the abdominal pain. Karen puts it at a solid 7 out of 10 and apparently our hopes that she had turned some kind of side effect corner were misguided. She was feeling as bad as ever. I scooped her up and off we went to Moini.

So....the MRI...yeah....

There are new brain mets. These are much smaller than the ones that threatened to derail last year's Festival of Pies but they are likely the cause of the memory issues we had noted. Their location was not super-clear at first--there was some thought that they were actually located in/on the brain lining and not the "meat" of the brain itself. The distinction matters because it would dictate the sort of treatment Karen would receive. Mets in the brain meant more targeted radiation, mets in the lining meant full brain radiation. After consulting with the tumor board at the hospital, the determination was made that the metastases were in the brain and targeted radiation was called for.

This is a brain radiation mask like Karen will need. It's not even remotely creepy.

For the moment, though, we wait. The trickiness of the location has prompted Dr. Moini to want us to consult with another neurosurgeon in order to get things set up as best as possible. Since the growths aren't enormous or causing pain or anything, there is not any urgency here. So there might be a wait of a week or so before treatment starts (which, since they like MRIs within 7 days of treatment means there is likely another MRI in the immediate future).

That waiting will be a little more tolerable thanks to a few things. First, we and our oncology team have decided to reduce Karen's Zykadia dosage from 750mg  to 600mg which is one less pill per day. The hope is that will at least lessen her side effects. We don't want to lower the dosage to the point it stops having a positive effect on the cancer so we need to strike a balance between the dose and the side effects. This drug is challenging for anyone to tolerate but obviously we'd like her to stay on it since it's working. Secondly, Karen has gone in to the oncologist's the last two days (and will return Monday morning) for IV fluids to help rehydrate her. If nothing else, the fluids have helped bump her blood pressure back up to something that more closely approximates normal.

Endeavor to Persevere

So we're almost two weeks into the Zykadia and you're probably wondering, "How goes it?"

So far, so good. Although I was in Edmonton most of this past week being treated really nicely by some really nice people whilst I played their really nice videogame, Karen went in to the oncologist's for a quick checkup. The best news is that the meds seem to be working. Karen's breathing has improved and she's not struggling to take full breaths anymore. The crackling sound in her lungs is gone, as well. In terms of the cancer-smacking basics, the Zykadia is getting it done.

Rise and shine!

This great news would be absolutely stellar news if not for a few other factors. Not unexpectedly, the stomach issues with this medication are a real bitch. The stomach issues caused by the Zykadia are no joke and even though we are tinkering with the timing of Karen's anti-nausea meds the unhappy truth right now is that she wakes up sick as a a very sick dog every morning. The quickest, most reliable solution continues to be the marijuana so now every evening before I retire I load up the vaporizer with Chem 4 so Karen can wake and bake like Jeff Spicoli. She continues to have body pain, her energy is not especially, uh, energetic, and her blood pressure is dipping to the low side--it's not a worry just yet but it's something we're going to have to keep an eye on. So she's still sleeping a lot.

Finally, the weight loss has slowed down but she still has managed to shed another pound or two since her previous appointment. Counteracting this sounds easy enough--eat more. But with the GI issues she's suffering through as well as the fact that it's surprisingly challenging to eat when you're asleep most of the day,  and her appetite is much less than before, we are going to have to be kind of aggressive in terms of calories and frequency.

And that about covers it. Here's hoping for better comedy jokes next update.

Ah-OOO-Gah!

Important fact: Only one of Karen's eyes is affected.

Yesterday Miranda and I noticed that Karen's left eye appeared wider and kind of bulging out. So I called the oncologist and left a message before running some errands. Despite leaving everyone at home on mandatory "Answer the phone" status, the return call went unheard and we decided that apparently nothing urgent was going on. Wrong. I recalled the doctor this morning and was told we had been called back the day before with the directive "Go right to the ER." Oops.

So Karen and I went to the hospital.

The fear here was that the brain metastases had reasserted themselves and were literally pushing Karen's eye out. A CAT scan was ordered and, long story short, her brain looked just the same as in her last MRI in May. In fact, there seemed to be no real reason or cause for this. So we went home.

And that's the whole story. Just another exciting day in CancerVille.

Meanwhile, the side effects of the Zykadia are kicking in. The gastrointestinal issues are no joke and I've woken up each day this week to the music of Karen vomiting in the adjoining bathroom. She's super-fatigued and sleeps most of the day. Her other symptoms--pain, coughing, etc.--persist but we wouldn't expect to see anything change quite yet. It took the crizotinib a good two weeks to really kick in. So, while I've said it before and I'm sure I'll say it again, we wait and see.

Up, Up, and Away!

This afternoon we had our tutorial on Karen's new med, Zykadia, which she will begin taking tonight two hours after dinner. Why wait a full two hours? Because this medication is all but certain to wreak gastrointestinal havoc on her, resulting in 'explosive' or 'propulsive' diarrhea. Personally, I'm hoping for the explosive kind since propulsive sounds as if we'd be seriously flirting with Karen jetting off the toilet and blasting through the ceiling, leaving the most unpleasant contrail ever in her wake. And on the walls.

The upside of propulsive diarrhea? The miracle of flight. Eat it, Icarus.

Actually, the GI issues are the least of it. This drug comes with all the standard kidney and liver monitoring along with the extra added attraction of possible heart arrhythmia. Fortunately, the arrhythmia is not all that likely but still...one more thing to add to the bio-terrorist watch list.

Karen's condition overall continues to decline. She is very fatigued and spends most of each day in bed, much of it sleeping. Her breathing is labored and she struggles to take a full breath. Conversation is challenging. Her cough is as bad as it has ever been, easily matching or exceeding the wracked hacking that was the signature feature of her condition when first diagnosed. More troubling, she has dropped another five pounds since just last Wednesday--that's not even a full week ago. Add in her previous drop and we're looking at about 12 pounds lost in just over two weeks. We will be tracking her weight closely in order to see if the Zykadia is working or not. Of course, the digestive issues that come with this drug make maintaining or gaining weight more challenging. So hooray for that.

Two-Face loves coin flips!

For those of you keeping score at home, this is Karen's third line of treatment. So we are getting down to it in terms of options. The numbers we're hearing on the drug's efficacy keep shifting around: today, with the actual drug rep in the oncologist's office, we were told that there's about a 52% response rate. So we are essentially looking at a coin flip. And who doesn't like a coin flip?

Proof I Am a Miserable Troll #342: Today as our tiny exam room filled up with more and more medical personnel to measure Karen's oxygen levels and such, I quipped "And two hard-boiled eggs." Blank stares all the way around. Not only did no one get my absolutely genius reference, none of them had even seen A Night at the Opera. I announced to one and all that they were "culturally illiterate." I believe I am now somewhat less beloved (if that is possible) at the oncology office. I will add it to the same list that includes the post office, three Safeway branches, Bank of America, and every Gymboree in the nation.

Oh, Fudge

Like Ralphie, no one here said "Fudge" reviewing the PET scan.

This past Thursday, whilst I was in Redwood City slaving away over a hot PS4 playing a videogame, Karen went in for her latest PET scan. She stuck around afterwards to get the DVD of the scan and so, when I returned home Friday evening, I popped the disc in my PC and had a look. The images confirmed the unhappy suspicions we'd been having for some time.

Some quick background: over the last week or so Karen's coughing has grown worse. She's been having trouble drawing a full breath and she occasionally has that "bubbling" sound in her breathing. The right side of her upper back has been causing her pain and she's experiencing discomfort/pain when swallowing. Her energy continues to flag as well. There are times that she's struggling to recall words and that is uncomfortably similar to her symptoms right around the time we discovered the brain mets; this said, it could just be fatigue, or the weed, or the oxy, or lingering chemo brain, or or or...we aren't panicking over it. Not yet, anyway.

Because why panic over the unknown when there are known things more than deserving of anxiety? The PET scan confirmed all of our worries and then some. The difference between April's scan and last week's is striking. The lymph nodes in her neck and under her arms are lit up up like searchlights. Worse, both lungs have clear progression of growths, particularly the right lung which features a poisonous archipelago of tumors scattered top to bottom across the lung. These masses also seem to be located in the rear portion of the lung, which likely explains the pain Karen is experiencing in her back. 

Additionally, there seems to be cancer in her esophagus which provides some explanation for the pain Karen feels while swallowing. That is new--she never had any cancer in her esophagus before. There is also some relatively slight activity in her liver (it was worse 1.5 years ago when she was first diagnosed) and there appears to be a few brand new cancer outposts staking claims across what we believe to be her colon. 

So, all in all, not especially great news.

Now, granted, we are not professional PET scan readers and there is a chance that we could have this all wrong. But I strongly believe that we don't. We'll get the official word on all this next week from our oncologist but our medical team has already validated our personal diagnosis in a roundabout way, by informing Karen (based on her symptoms and those blood markers) that they didn't believe chemo was working for her anymore. As a result, they prescribed a new oral med before Karen even had the scan that she will take instead of doing any more chemo. At this point, the PET scan is really just confirmation of the oncologists' belief that maintenance chemo has run its course.

The new med is Zykadia and you can click on its name there to find out more if you're so inclined. It was just approved by the FDA and it specifically addresses the ALK+ type of lung cancer Karen has. Roughly--very roughly because the sample size is very small--55% of former crizotinib-gobbling patients can expect some sort of benefit from taking it. Karen made similar odds with the crizotinib back in January of 2013 (and, man alive, does that  feel like five lifetimes ago) so we're keeping our fingers crossed for a similar outcome. If the Zykadia doesn't get the job done then we move on to new, more unpleasant chemo.

So, the good news is there are options. The bad news is that they are growing less reliable, more toxic, and eventually more limited. 

This is why you don't take chemo drugs on vacation.

And I'd be lying if I said we were optimistic right this minute. While we hope for the best, Karen and I both have a sense that maybe we've hit an unhappy threshold, that this is the tipping point where our good luck runs out and things start getting....oh, let's say....not quite as breezy and carefree. 

In the meantime, Karen will be leaving with Miranda  and Margaret (Karen's best friend since high school) the day after tomorrow to go visit her sisters and mom in North Carolina. That trip is why she's not starting the Zykadia right away--the stomach issues the drug seems certain to cause are not exactly vacation-friendly.

STATUS UPDATE

• Karen's latest PET scan shows a fair amount of cancer progression. This being said, this is our take on the test and we could be wrong (though that seems enormously unlikely).
• There is evidence of cancer recurring in both lungs (especially the right one), her lymph nodes, and her liver.
• There is also evidence of the cancer spreading to new locations in her esophagus and her colon.
• Karen is through with maintenance chemo and will instead begin taking Zykadia, a brand new drug that has a 55% chance of providing her with some benefit.
• In terms of symptoms, Karen continues to struggle with ebbing energy, persistent coughing, an inability to draw a full breath, and various aches and pains that are likely caused by the cancer.

The Long and Winding and Plummeting and Corkscrewing Road

Topless coasters beat cancer coasters every day of the week.

Within the first couple of years of marriage, Karen and I went to Disney World for some ungodly reason. I remember two things from that trip: We saw The Matrix one afternoon and Karen got over her fear of roller-coasters thanks to a coaster simulator that let you design your own track and then allowed you to experience that ride from the safe confines of a gyro-pod kinda thing. Once she mastered the virtual coaster, Karen was ready for the real deal. It's a good thing she put that roller-coaster trepidation behind her because things have been wildly up and down ever since she was diagnosed a year and a half ago.

At this point in our Cancer Coaster it seems we are currently in the prolonged climb phase, that extended, attenuated ascent that ratchets up dread for the inevitable plunge ahead. Karen's latest chemo treatment was just yesterday and true to form, she's wiped out today and freely making use of our stock of Chem 4 weed. And while we should be getting all filled up on dread we, quite surprisingly, are not. Maybe it's because we've been on this shitty ride for a long time now.

While the chemo treatment itself went fine, there are some troubling indicators asserting themselves. Karen's energy is definitely down. Granted, the last few days were over 100 here but even prior to that she was flagging. She has also begun coughing again. Not a ton and not as severely as she was back when we discovered the cancer, but still....there's no good explanation for it. Finally, the cancer markers in her blood tests are steadily increasing. The markers are not through the roof by any means (they could be much higher) but they've been trending upwards for awhile now. This unholy trinity is possibly maybe perhaps potentially a clue that the maintenance chemo is already losing effectiveness.

Then again, maybe not. In any event, we will know soon since Karen has another scan scheduled within the next couple of weeks. If the news is bad, we know the course ahead: she'll take a new just-approved oral med depending on availability. Barring that--or if it doesn't work--she'll try a new kind of chemo. The prospect of moving on to Plan C and/or Plan D is not especially uplifting but we are not freaking out. After all the times we were certain doom awaited and it wasn't (as well as the times we mistakenly thought all was well) we have learned not to worry all that much and just wait it out. The cancer will update us in due time. It's very good and reliable with that.

Rather, we save our freaking out for the truly surprising. Case in point, the other night I finally wandered in to bed at my usual and perfectly normal 3AM bedtime. Karen, as usual, was asleep on my side of the bed even though my Sleep Number is set to something like "Haphazard Pile of Bricks" and her half is set to "So Soft You Might Actually Sink to the Earth's Core." As usual, I gently shook her shoulder and softly asked her to move over. She didn't. I asked again, I shook again, and again nothing . I tried to move her a third time, more firmly, and still nothing happened. Except my heart began racing even as it dropped. I couldn't hear her breathing and she did not seem to be moving. Now, anytime up to about a year and a half ago, I'd have just unceremoniously shoved her over because I'm classy like that but this time, this night, my unresponsive and unmoving wife elicited a whole different kind of response, namely, panic that that prankster cancer had accelerated his schedule for a fantastic last practical joke.

At this point, I shook her roughly and barked her name and she finally rolled over to her side, still asleep and completely oblivious to the fact that it took me about an hour to calm down enough to finally fall asleep myself.

Steady On

There's not a whole lot to report at the moment. Karen had her most recent maintenance chemo infusion last Monday and as I write this she is languishing in bed. While the recovery from this minimized chemo dose is decidedly better than it was with the full-on chemo, it is still, as the wits say, a real bitch.

And still we soldier on. Karen is looking forward to Dash's graduation in a couple of  weeks as that was the stretch goal she had set for herself. Then, later in June, because the maintenance chemo is so relatively tolerable, she and Miranda will travel to North Carolina to spend a week for some sort of Ultimate Steel Sisterhood of the Traveling Ya-Ya Magnolia Pants where they will join both of Karen's sisters, Karen's best friend since high school, Karen's mom, and a special one-day guest appearance by Karen's Aunt Molly. I will be home. Or in Atlanta. Or maybe Shanghai. No, really.

Party on, everyone.

Shrinky and the Brain

The new leader of Karen's medical team.

Karen had another follow-up MRI yesterday and the results were about as good as we could have hoped for. The tumors in her brain have shrunk even more, to the point that one of the three is basically impossible to find without shrinking down Donald Pleasance and Racquel Welch and injecting them into Karen via that handy new port.

Between this and the PET Scan it seems as if  the reprieve bugle has been unequivocally sounded. Karen is doing pretty well and should continue to do so for awhile. The recovery from the maintenance chemo is going smoothly and while there were some bumps during the first week she is doing much better at this point in week two than she did during regular chemo.

So it looks like we're ready-ish for the summer and whatever that brings.

Another New Normal

Today officially marked the beginning of maintenance chemo. Compared to the previous chemotherapy regimen--particularly the Avastin colitis nightmare--this was a total breeze. I ought to know--it didn't happen to me.

Karen's port is just a little less intrusive than this one.

At any rate, the chemo session was delightfully short, taking only about an hour from start to finish. This is one of the great benefits to going down to just a single therapeutic drug. Not only are we sidestepping the lengthy infusions of the other drugs but we're not having to sit through the administration of the additional meds that go along to make those drugs more tolerable. No more Emend, etc.

The chemo experience was also made less unpleasant thanks to Karen's brand new port. She had it put in last Thursday and while it was still sore today, it was good to go for her treatment. The port "lives" under her skin in her upper right chest. To access it, the nurse administering the drugs simply attaches an IV coupling to the port, then hooks up the IV to that coupling and away we go. Instead of hunting for a good vein--and Karen has basically just about run out--the nurse only has to plug the needle into the port. The port is already attached to Karen's circulatory system into a vein I forget the name of.

Post-zombie apocalypse childcare at its finest.

And now we just, well, coast. This is yet another new normal and while it's not as great as the grand old days of Crizotinib, it sure looks better than regular chemo (even though it adheres to the same Every Three Weeks schedule). We can expect to wring about 6 to maybe 12 months out of maintenance chemo assuming all goes well. So it's another anniversary, another Festival of Pies, another Christmas, another lots of things.

Looking ahead: Karen will have an MRI in a week to check in on the growths in her brain.

Looking back: Karen grew tired of the patchy Medusa look the chemo had left her with so she cut off most of her hair. She did not shave her head. Which is probably good because I have my doubts about her ability to pull that look off. The end result is pretty good, leaving her looking kinda like Carol from the Walking Dead. Ideally, she will not instruct our kids to "look at the flowers."

And God forbid she tell them to make flowers. Eep. I just made my skin crawl.

Trying to Maintain

Of course, our doctor and nurse practitioner are both on vacation this week, the very week we get the PET scan to determine if Karen's chemo is working. Less expected, our NP directed the oncology office to contact her if any of her patients' test results came in. So we got Karen's results via a beach somewhere in Mexico.

And it appears the chemo is working. While there is still metabolic tumor activity, there is no growth or metastatic activity. So now Karen will transition into maintenance chemo. She'll be sticking to the same schedule of getting infusions every three weeks but the med mixture will be limited just to the Alimta. We are hopeful that the more stripped-down medication regimen will make her recovery period shorter and less unpleasant. She'll continue with this course of action until we see evidence of it no longer being effective.

This also means that Karen will go ahead with getting her port, uh, installed. That will happen sometime next week, giving her just enough time  to recover from the minor outpatient surgery to have the oncologists jack into that port for her first maintenance chemo treatment on the 28th.

To celebrate, I'll be taking Karen to the weed store this weekend for their big 4/20 gala. See you at the Berkeley Patients Care Collective!

Waiting Around

It's been awhile since I've posted here. While I generally try to wait until we have something worthy of remark to post, I've been getting prodded to update regardless and, well, so here I am.

There's no real news to log here. That will come later in the week. Karen's last of the initial six chemo rounds went about as expected and she is starting to bounce back. Still, every recovery gets a little tougher. The three weeks are just enough for her to recover but not quite fully. So she's starting each round just a shade weaker than the preceding one. But she's hanging in there.

Pure. Sexual. Magnetism. oh yeah.

The news we'll be getting later this week will be the reading on her latest PET scan. That took place this morning. For the first time, Karen decided to stick around and get the DVD they make for you. The DVD comes with a PET scan reader program and allows you to review all the images and navigate through the various anatomical locations. It's actually pretty freaking cool. We reviewed the images as best we could but since we don't have the images from the scan before this one at home, we cannot really compare them to figure out how things are going. We are, after all, decidedly not doctors. We have some idea what to expect later this week but, really, we're just making half-educated guesses. I'll hold off on posting PET scan stuff until the experts weigh in.

In the meantime, Karen has lost more hair and now sports the hairline of funnyman Billy Crystal. Though, honestly, can we really refer to him as "funnyman" after My Giant? The good news, aside from the hairline she has not adopted the constipated tortoise visage of Mr. Saturday Night. So she's got that going for her.

Drip Coffey

And back we go to chemo!

This is the tool most necessary to settle physician disputes.

Today was the fifth of Karen's six scheduled treatments and it went much better than the last one. Most probably because our oncologist pulled one of the drugs from the infusion: Avastin. It was during the Avastin portion of her treatment three weeks ago that Karen began experiencing the pain that signaled the galloping arrival of her colitis. Now, while the GI guy who treated Karen at the hospital full-on blames the Avastin for everything our oncologist, Dr. Sherman, is less definitive. And we kind of knew that was coming because Dr. GI Guy basically told us that "Your oncologist won't believe this."

And Dr. GI Guy was right. Sherman was kinda dismissive of the idea but he still pulled the Avastin because, well, it's complicated. There is no real correlation between plain old colitis and Avastin but the drug does affect your blood vessels (it fights cancer by killing off and preventing the growth of new blood vessels that spring up to keep the tumors fed with blood). Therefore, there is a slim chance it can cause ischemic colitis by killing the blood flow to the colon. Also, there's a chance that a blood clot--and Karen has a history of clots now--could have caused it as well. And thus, no more Avastin just to play it safe.

That better safe than sorry approach was just fine with Karen. While chemo is stressful under what you might laughingly call "ideal conditions" it's a lot more stressful when you're afraid it's going to knife you in the guts. Karen started dreading today's chemo a few days back, worried that she'd have a repeat performance of Treatment Number Four's ugliness. Not so today...she napped through most of it while I worked on my laptop next to her.

So now we wait. In three more weeks Karen will have that last infusion and sometime thereafter she'll have a PET scan to see if the chemo is doing any kind of good. If so, she'll transition to maintenance chemo which will be just one drug (Alimta) pumped into her every three weeks.

In anticipation of that, Karen is likely to get a port installed. There's a picture of what a port looks like just over there. Take a peek. This lovely apparatus will allow the docs to more easily deliver drugs into Karen whose veins are just about shot from all the IVs and blood draws. It will also bring her one step closer to becoming a cyborg so that's pretty awesome. Unless she goes rogue and kills us all. Less awesome, that.

Gut Response

Bright and early Saturday morning, Karen shook me awake and asked me to take her to the Emergency Room. The abdominal pain that had struck during chemo on Monday, while it had subsided in the near term, had begun to reassert itself aggressively and Karen had been unable to keep food down or in for about two days by the time Friday rolled around. Eating caused tremendous pain and even drinking a glass of water was agony, followed by near-immediate vomiting. After being up most of the night, she'd had enough and called our oncologist who told her to head to the ER.

After a CT scan it was postulated that Karen was suffering from a pretty significant case of colitis, with inflammation in both her transverse and descending colon. She was admitted to the hospital for observation and more tests, including an absolutely delightful colonoscopy Sunday morning. That confirmed the diagnosis. Karen stayed in the hospital another day and returned home Monday afternoon. Once it was clear that Karen was going to be okay and that it wasn't really necessary for me to be around, I left for a business trip and let Miranda and my parents (who were scheduled to visit already in order to care for Karen while I took this trip) collected her from the hospital.

So what does this all mean for her treatment? You got me. We'll be talking to the oncologist once I get back. But there are reasons to be concerned. This kind of inflammation and internal bleeding is associated with two of the drugs in Karen's chemo cocktail, Avastin and Carboplatin. Most likely she cannot continue with the same chemo regimen and will need to change drugs, alter dosages, suspend treatment, or outright end it. I honestly have no idea. For the moment, there's no urgency: she's not scheduled for another infusion for two more weeks so nothing is/was going to happen over those 14 days anyway (which is why I was free to travel...obviously if there were immediate concerns I would have stuck around).

This shit just never seems to stop and it is, to coin a phrase, a right fucking drag. But we soldier on and I have to say, everyone does seem to have a pretty good, resilient attitude about it. Especially Karen.

The most unsettling thing about this recent incident? Late Sunday night I headed to our bedroom, brushed and flossed, then settled into bed to watch "Girls." I laughed out loud and reflexively tried to swallow it lest I disturb Karen's sleep. And then I looked where she should have been and she wasn't there and it was incredibly unsettling. I had the bed to myself. I thought to myself, "So this is what it's going to be like" and it was like living in the present and the future simultaneously and it was just kind of awful.

We should know more about the road ahead soon, ideally sometime on Friday.

PET (scan) Sounds

Prior to Karen's fourth round of chemo this morning, we got the results of last week's PET scan. The results were mixed. On the one hand, the none of her tumors showed any growth. In fact, a number of them had actually reduced in size. Arresting and/or reversing tumor growth is basically the whole point of this exercise so that was pretty nice to hear.

One one hand, and on the other hand....

Then again...there's that pesky 'other hand.' So, on that other hand, the PET scan revealed that the activity rate of several of the various cancer sites had increased a great deal. So while they aren't producing new cancer cells they are furiously at work trying to. This is the not so fantastic part of the results. Especially when you look back at the great response Karen enjoyed from the crizotinib which not only shrunk her tumors but shut those cancer factories the fuck down.

Mixed results like this are pretty standard so we can't really mewl about it too much. If we're going to do that sort of thing, we should really focus that energy on how terribly chemo went today. Karen was absolutely poleaxed by nausea and intense abdominal cramping during her infusion. After unplugging her IV for the fourth time so she could wheel the thing into the bathroom while she vomited, we opted to stop plugging it in and let the battery carry the load for the last few bags of drugs. The plug for the thing was awkwardly located behind her chemo recliner and it was just a pain to get it back in while tiptoeing over her IV lines and all. Happily, we were in the chair right next to the bathroom--not because we had some kind of foresight but because my antisocial tendencies had me homing in on it since it was the furthest away from the other patients.

Karen has spent the rest of today in bed, sleeping most of the time. That said, she did muster the energy to watch the latest episode of True Detective with me. We watched on the TV in our bedroom since she didn't want to walk into the living room to watch on the big TV, partly because of the peripheral neuropathy she's developed over the last few weeks. The neuropathy is a clear side effect of the chemo and it is essentially nerve damage that is occurring in her hands and feet. Her hands get achy but it's her feet that are the real problem. If she's off her feet, they itch like crazy and no amount of scratching helps. If you, like me, have had to wear a cast for a broken bone and had an itch just out of the reach of a bent up wire hanger, you know what that's like. Walking is worse. With shoes on, her feet hurt some but she can get around. But shoes make her feet even itchier. Barefoot, the pain when she walks is much more intense and she is the embodiment of wobbly, clutching onto chair backs, counter tops, walls, and the people around her to move around the house. It's like having a toddler in the house all over again.

Brain Drain

Karen had another MRI this afternoon and right afterwards we met with the doctor to find out the results. I was in a pretty good mood since I had just beaten three levels with perfect scores in Pixel Junk Monsters while I waited for Karen to finish. What could possibly put a damper on my day?

Not her MRI results, that's for sure. The three metastases had shriveled up dramatically thanks to the radiation. One of them was almost gone it had been so thoroughly zapped. Even better, there was no evidence of any "seeding" of new mets. Really, the only drawback to the radiation was that Karen somehow failed to develop any superpowers. Or perhaps they just haven't manifested yet....

That's one big test down, one big test to go. Karen will have another PET scan on Thursday the 20th and we'll get the results of that right before her chemo treatment on Monday the 24th. We are crossing fingers.

This, apparently, is what Karen's soul looks like.

In the meantime, Dash is on break from school which means he has a lot more free time to play GTA V online with his mother kibitzing from the couch. Which means I can expect to hear a lot more of the following:

"What now, Mom?"

"Kill that guy and take his money."

"Say no more."