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.