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.