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.