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.