Biohazard!

If it's biohazardous, it's gotta be good.

Karen's crizotinib arrived this morning via an unnervingly cheery UPS man. Thirty days worth of the medication was inside the box, nestled in a ziplocked bag sporting a bright yellow biohazard symbol. Now, as a general rule of thumb, we have made a point to avoid anything sporting a skull and crossbones or a bright orange radiation bloom or the curving thorns depicted just to the left, but on this day we happily tore into the bag. The medication had arrived early enough in the day that Karen would just be able to shoehorn in the two doses she'll be taking daily. We cracked open the bottle and Karen swallowed her first dose, a thick brown capsule that fell just short of being a horse pill.

At this point we reviewed all the literature we had about the drug to make sure we were on the alert for any unusual side effects and properly prepped to deal with the expected ones. I organized Karen's assortment of anti-nausea meds and went over which could be combined and which could not with Miranda. I also showed Miranda how to grind up Karen's medical weed and load up her vaporizer. Not quite the sort of father-daughter moment I thought I'd ever have but there you go. My little girl is all growed up and ready to pump her mom full of weed.

Within about 20 minutes of taking her medication, Karen felt pretty nauseous. That was pretty quickly subdued with a couple of anti-nausea meds. With her treatment officially underway, Karen settled in on the couch, wrapped herself up in a couple of blankets, and started watching Live Free or Die Hard. Unfortunately, the crizotinib has not yet had an impact on her deplorable taste in movies.

So now it's a waiting game. 60% of people that test ALK+ like Karen respond to the crizotinib. In this case, response means a cessation of tumor growth and some actual shrinkage of cancer. Assuming this happens, Karen should be able to breath easier and have some energy return. This could happen in as few as three weeks but four to six weeks is more likely. At some point after that she will get re-imaged, meaning there will be more scans to view the tumors and see if there has been any measurable progress. In the meantime, we will be on the alert for any of the more alarming side effects as well as more expected ones like double vision. One good thing about this drug over Tarceva (aside from the better response rate): it won't cause you to sprout eyelashes on the inside of your eyelids. *shudder* That just freaks me out.

Feel free to cross your fingers along with us.

STATUS UPDATE

• Karen has begun taking crizotinib, a targeted therapy that the 3% of people testing positive for ALK mutation can take.
• 60% of people on crizotinib have a positive response.
• A positive response includes a halting of tumor progression and even some tumor shrinkage.
• Karen could feel better in as few as three weeks although a wait of four to six weeks is more likely.
• Common side effects include nausea, vision problems, diarrhea. At this point, Karen is just experiencing nausea which is being controlled with anti-nausea meds.
• Our daughter is now a trained drug dealer.
• Karen has terrible taste in her preferences for cinematic "comfort food."

Jumping Ship

Late yesterday, after six plus hours of cancer-related tomfoolery, we decided to change oncologists. We're feeling pretty good about it, although there are some things we aren't feeling so fantastic about. For Karen, she's not feeling so great thanks to the cancer. She soldiered in to work today and just about literally passed out. She could be looking at a more dedicated work-from-home approach sooner than we had anticipated. For me, I've got an aching open wound where $1364.30 of my money used to be. I'll be working on healing that today.

We spent a few hours at Dr. Sirott's outfit yesterday, being briefed by his assistant on the chemo and targeted therapies Karen is facing. Then, as we had planned, we gambled and paid $1364.30 for one week supply of Tarceva in the hope that Karen would eventually prove to be EGRF positive. And, to be truthful, we were also paying just for the opportunity to stop sitting on our hands and finally start doing something to murder death kill this cancer. After a few hours there we headed out to Danville for that second opinion/reality check from the oncologist that my oncologist friend had set us up with.

Huzzah! I daresay, good show!

The vibe at the other office was entirely different, much smaller and more personal, less ant farm/factory than what we'd be experiencing. That's all well and good, but it wasn't a reason to switch doctors. What was a good reason was what came up during our consultation with Dr. Sherman. Although the EGRF analysis remained undone, the ALK results were in. This is Karen's first bit of good luck since the chance of being ALK+ is about 3%. The great thing about this is that first line therapy for ALK+ is Crizotonib, a targeted therapy oral drug with a much higher response rate that Tarceva: 60% as opposed to 20-25%. Huzzah! Plus, since the results were in, we could start more or less immediately and we'd get started before the end of the year when our insurance would hit the big invisible reset and we'd be on the hook for big scary deductibles. Huzzah again! And guess what? These results had been in since the 17th. Two full days prior to this appointment. And yet we hadn't heard about them and there'd been no movement from Sirott's office regarding them. Indeed, we had just spent several hours at Sirott's office going over a treatment course that the ALK results rendered moot. We're not saying Sirott needs to check the labs everyday (though, yeah, maybe we'd prefer that) but it might be nice if they were checked the day we came in. That seems in order. Especially considering the epic screw-ups around Karen's pathology.

So that's why we jumped ship. The smaller, more focused feel of the practice, the more aggressive approach they take, and the fact that we felt we could really talk to these people. That and the fact that Dr. Sherman was discussing the potential for "maintenance therapy" that could keep Karen around for years. And I'd be lying if I didn't admit that the fact that the doctor is also a New Yorker was also a real factor--we just speak the same language.

The near future looks like this now: we have another chemo counseling tomorrow, this one with the new doc, to go over Crizotonib. Approval from our insurance is in the works, the prescription is already written and we could be started any day now. I am also endeavoring to return the Tarceva and get our money back. Once I secure that, we're going to end our relationship with Sirott and Diablo Valley Oncology.

If I don't get our money back (we haven't even torn past the staple closing the bag the drugs came in) well, that sucks but it's dwarfed by the first scraps of good news we've gotten since this started. For the first time in over a month we're feeling guardedly optimistic and on the attack. That's a much better way to ease into the holidays.

Do You Feel Lucky, Punk?

I hate Kenny Rogers. But how can I not use this here?

I enjoy a little blackjack during our very occasional trips to Vegas but Karen has always felt too stressed out by laying actual money on the line to join me (though she has no compunction about helping me blow my winnings on extravagant dinners). So, bottom line, we are not inherently gamblers. Until just about now. We are gambling, we are using very real money, and we're hoping for the best.

Karen's overall condition is deteriorating. She's not knocking on heaven's door by any means but she's weak, she's having trouble breathing, and she's coughing more than the lead actress in a community theatre production of Camille. And of course she cannot start treatment until we get the results of that damned EGFR test (more on that in a moment). The probable date of that pathology report is over a week away. That's not so much when you look at a calendar but when you're looking at your wife struggling to catch a full breath it's somewhere between an eternity and a fucking eternity. Our insurance company won't approve anything without those results (memo to Sarah Palin: if you ever want to have a discussion about real-life death panels, I'm right over here).

This is not valid US currency.

So we are forgoing the insurance in the very near term. Dr. Sirott believes that Karen is bound to test positive for EGFR and is therefore a prime candidate for Tarceva, which should get to work on that hellish cough straightaway. Apparently there is a small supply of Tarceva in the Diablo Valley Oncology stores and he is willing to write a prescription for a week's supply in anticipation of a positive test. We will have to pay for this all on our own for the very tidy sum of $1000 in American currency. Bartering my hardcover first edition  Dark Knight Returns signed by both Frank Miller and Bob Kane is apparently not an option.

I'd like to say two things here. First, cancer is an extremely expensive way to make your life more interesting so I'd advise against it. Two, it sure is nice that one of my several overdue paychecks showed up in the mail today.

In other news, we have been up down and around and upside down multiple times today trying to figure out just what the hell is going on with this test and why the projected date of our results is doing its level best to redefine "moving target." It's a convoluted tale, but here are some highlights. I checked messages this morning to discover that Dr. Sirott had apparently butt-dialed me while having a conversation with a partner about us. This was a giddy a-ha! moment that made me feel like a super-spy even though I had done absolutely nothing to bring it about. Anyway, in that discussion Sirott revealed that the lab had not sent out the biopsy material to the reference lab (the outside lab doing the EGRF testing) until Sirott had called them on the 13th. This wasn't quite what the stonewalling pathologist told me later on the phone. Karen and I (and especially I) were pissed. It's important to us that we can trust our medical team and rely on them to be straight with us, even if they screw up. We understand human error (though we don't love it) but we don't have patience for ass-covering, misdirection, and half-truths. During our spotty cell phone call last night, Sirott never once said that the lab had erred by not retaining some of the biopsy goo for their test while sending out the rest immediately for the EGFR analysis.

We road this emotional roller coaster most of today.

And I found out a lot of these details from that accidental voicemail (as well as the fact that he wasn't too excited by how "pissed off" I was which I must confess was a great delight). I got my Krav Maga buddy Jim Karol on the phone and vetted all this with him. He's a big shot oncologist specializing in prostate cancer and he confirmed that the lab had screwed the pooch. He also called in a favor and set us up with a colleague specializing in lung cancer, getting us an appointment for tomorrow. We were primed to jump ship to this new guy.

Then Sirott called me back this evening and, unprompted, said all the things we wanted him to say the night before. Maybe it helped that he wasn't calling from his car but a reliable land line as I'd requested. Maybe it helped that I've got a good vocabulary and I'm not afraid to use it to browbeat people into not dancing around me and the truth. And maybe it's not all so nefarious and he just slipped up on another slab of the spectacularly terrible run of luck we've been having.

And with that terrible luck we have decided to gamble and pay for the Tarceva and hope it brings Karen some relief soon. And Karen has decided to stay with Sirott as he basically redeemed himself. And we're still keeping the appointment with the other guy--a second opinion cannot hurt--but barring any sort of game-changing event during that meeting, we're going to stay the course. And we're going to see about moving up Karen's appointment to get her state-issued Weed Card since she will be facing side effects sooner than we thought and also because, in the words of Emily Dickinson, why the fucking fuck not?

Spectacularly Bad Timing

Who doesn't love the holidays? Cancer patients waiting on lab results, that's who!

So, yeah...that all important EGRF test we've been waiting on is something we're going to have to keep waiting on. It's a long convoluted story but it basically boils down to this: the test is not done at our hospital's main lab so it is sent to another lab. That bit of logistics coupled with holiday disruptions means that we aren't going to get word until December 26. This means that Karen will not be able to start treatment until the 27th.  The delay is maddening but there isn't much we can do.

What we can do is complain about the bit of miscommunication that led us to believe we'd have an answer today. I took very thorough care of that and I think that we aren't going to run into that again. If I learned anything during my tenure at CGW it was how to put together a string of words to forcefully deliver a point. Granted, the answer is whatever the answer is and finding out now or later isn't going to impact the course of treatment (just the timing of it). But Karen was distraught to find out she wouldn't, uh, find out. Tom Petty had a point: the waiting is indeed the hardest part.

Fortunately, we have moved forward on another front, securing an appointment so Karen can get her medical marijuana card! It took about 50 years but this little straight arrow is about a week away from rampant pot-fueled hedonism. She'll see music! She'll hear mountains!

Leading experts have created this computer generated image of Karen about two weeks from now.

By the way, the Festival of Pies photos are posted on my Facebook page. I was going to post them here as well but that seems kind of redundant. Not redundant: our gratitude and sheer delight in all the people that showed up and made the 10th Annual Festival of Pies a rousing success. A number of people traveled from lands far away to gorge on pie and let Karen know they care about her. Just from me to you: thanks.

No News is No News

Unfortunately, although the pathology for Karen's biopsy is in, the doctor is not. So while we had hoped to find out by now if she was EGRF+ or not and thus get an idea on what her course of treatment would be, we haven't found out and we have no idea. We'll have to wait until Monday at the earliest to get the info. On the one hand, the delay is terrifically annoying because the various levels of uncertainty we've had to grapple with all along are (so far) the worst part of this. On the other hand, our knowing isn't really going to change anything so we might as well just let it go and wait.

We hope to have news to post on Monday.

Not So Fantastic 4

Many many years ago I had my first short story published and I excitedly tried to call friends and family to share the happy news. No one was home (this was pre-cell phone and, in fact, pre-answering machine for a lot of my family) and I just about bashed my brains out in frustration.

Today was a lot like that day only bad. After our oncology appointment I tried to reach all the people at the top of our little phone tree and couldn't reach a one. Leaving a message seemed just wrong. I believe people should be emotionally mugged live, not by a recording. After a lot of effort, I started reaching people--just as I did a few decades ago--but the tone was a hell of  a lot more somber.

And what I had to share with everyone is this. Karen has Stage 4 metastatic lung cancer. The cancer in her lung is grotesque, the exaggerated shape and size that a six year old would draw in crayon, scribbling over and over until the crayon started flaking off the paper. The cancer has spread to multiple lymph nodes in her neck, her chest, and her abdomen. The cancer is in her adrenal gland. And the spots in her lungs we had half-suspected and entirely hoped were cysts are cancerous as well.

Yeah, it's a rock star dentist but they're doctors, too. Sort of.

The treatment plan is undetermined at this moment because the busy schedule of the rock star biopsy guy we used for Karen's second biopsy meant that we couldn't have that procedure done until just last Friday, the 7th. As a result we are waiting on the results of one final test done on that tissue. We should get those results tomorrow or the following day at the latest. 

We do have an idea what's ahead, however. This test will determine if Karen is EGFR positive, meaning that the cancer is a result of a genetic mutation. This would be good news, well, as good as news gets with Stage 4 cancer I guess. There is a 10% to 25% Karen will test positive and, as Dr. Sirott put it, she "really deserves a break at this point."

If Karen is EGRF+ then she is a candidate for a targeted therapy, a drug called Tarceva. It's a pill and although it's essentially chemo in a handy take-home form, it's not as rough a ride as IV chemo. If she responds to the Tarceva then her one year survival rate is 70% and her odds of a "long response" are good.

If she is EGRF- then she will undergo traditional intravenous chemo. The one year survival rate is 50% in this case, the 2 year drops to a dispiriting 20% to 25%, and you really don't want to know the 5 year rate.

So here's hoping Karen is some kind of mutant. I had gotten her a She-Hulk t-shirt assuming she'd undergo radiation but I'm guessing something from X-Men is going to be a more hopeful and accurate alternative.

Miranda went to the appointment with us and handled things about as well as could be expected. She held it together until after the initial meeting and began weeping only as we were waiting to set up our next appointment (that's next Wednesday the 19th). Dash is managing well. We all are, in fact, about as well as I'd expect you can. We are finding things to laugh about. Karen is pleased that she might finally have the leverage she needs to get me to go another godforsaken cruise in the near future.

By the way, the Festival of Pies was awesome, full of great surprises for Karen, and as soon as I get pix I'll be posting something sunnier about that. That said, odds are the next entry here will be about our soon to be determined treatment path.

We are immensely grateful for all the love and support from our heroic family and friends.

Feel free to leave suggestions as to which X-Man t-shirt I should get my lovely bride in the comments section or wherever.

STATUS UPDATE

• Karen has Stage 4 metastatic lung cancer. There is no Stage 5.
• Cancer has spread to multiple lymph nodes, her adrenal gland, and her liver.
• The fact that it's in her liver is especially frustrating because we had hope it hadn't gone there.
• We are waiting on final test results that will determine treatment.
• If we're lucky, Karen will be EGRF+ and a good bet to respond to the targeted therapy Tarceva.
• Luck in this case is a 10% to 25% chance that she will test EGRF+
• Tarceva is a pill with less side effects than IV chemotherapy.
• The one year survival rate with Tarceva is 70%. The odds of a "long response" are encouraging (our oncologist has other patients that are doing well after several years of the drug).
• If Karen is EGRF negative, she will undergo more traditional chemotherapy.
• The one year survival rate for this treatment is 50%, it's 20% to 25% for two years, and ridiculously low for five years.
• This whole thing sucks.

Cancer Comedy Shenanigans

Our arrival at Karen's respiratory specialist this morning was perfectly timed to catch the chorus of "Only The Good Die Young" on the waiting room radio. Oh, how we laughed.

Asshat.

According to the receptionist, the radio was playing "the feel good hits of the 60's, 70's, and 80's." I have serious reservations about this station's definition of "feel-good" since we were also treated to  lighthearted treats like "Love is a Battlefield" and "One Tin Soldier (The Legend of Billy Jack)."

We expect less hilarity tomorrow at our morning oncology appointment. Here's hoping the Mayans got it wrong and 12/12/12/ is a good day for us.

Whither a Wig?

A few people have wondered just where we got the title for this little chunk of blogdom. While it definitely enjoys a bit of future kismet resonance with what we imagine will be Karen's eventual hair loss from treatment, the truth is that we like Wig In a Box because of this song from Hedwig and the Angry Inch. While we don't exactly relate to the plight of an abandoned East German botched transsexual we do relate to the generally resilient attitude of the song/character. And of course as recovering BFA/MFA grads, the whole thing fires up the synapses of the show tune nerve that still sizzles along our spine, no matter how hard we try to pretend we've outgrown it.

In terms of updates, there's not much to report. We've secured an appointment for the new PET, CT, and MRI scans for later this week. And we should have the new biopsy appointment nailed down in a day or so. That appointment is going to be a whole lot of fun. The biopsy doc will be inserting a long needle in Karen's side and driving it into her lung to get tissue. The only appointment that really matters is the one on December 12 with the oncologist when we find out just how bumpy the road ahead will be. Fingers are resolutely crossed.

What we fear the biopsy will be like.