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.

Vacation Time

Ah, if only we were going on a real vacation.

Instead, Karen is taking a Zykadia vacation. The side effects have gotten to be too much. So, in an effort to hit her internal reset button, we and our doctors have decided for Karen to take a break from the chemo drug. Karen had two options: go without for two days or go nuts and hold out through the weekend for a whopping four days. Right now she's leaning strongly in favor of four days because she's beyond over it. The hope is that when she resumes the Zykadia that she will better tolerate it.

To make that even more likely, we are dropping her dosage again, down to 450mg. This is pretty much the bare minimum dosage. If the side effects return and remain intolerable then we will have to scratch Zykadia off the list and move to the next option.

In cheerier news, Karen's step-sister and all around awesome humanoid Bridget jetted in for a whirlwind two day visit. It had been a year since we last her and it was just great to have her around. She and Karen got mani/pedis one day and spent as much time together as Karen was able. If there's an upside to this cancer business it's this: it's fantastic to visit with all our family and friends. Karen's sister, Liz, will be here in a week.

So for a cancerous summer, all things considered, not too bad.

Brainstorm!

Sadly, Karen's brain does not look as badass as this.

Over the last few weeks we had noticed that Karen's memory seemed to be slipping a little. She was occasionally struggling to think of words and she had trouble imprinting new memories. As a result, we've been helping her finish sentences and repeating basic things like "We're having chicken for dinner" three or four times a day since the info isn't exactly sticking all the time. This small bit of cognitive slippage fostered a little bit of trepidation going into last Wednesday's MRI. That sliver of dread was offset somewhat by the fact that Karen is taking oxycontin, dilaudid, copious amounts of marijuana, and she's exhausted a lot of the time. So she's got 99 problems potentially affecting her brain and a met ain't one (necessarily).

Man alive, was Wednesday a long day. We met with the oncologist at the unfathomable hour of 8:15AM. That appointment went well enough. Karen had dropped another 2 pounds over just the last week and her blood pressure continued to dip lower nearly every time it was taken. But, the nausea and vomiting and everything that was making life so hard for her hadn't been an issue that day so we thought maybe she'd passed a side effect threshold to a place where the Zykadia would be more manageable. We left that meeting feeling a little optimistic.

The MRI appointment was for 9:30 so we had just enough time to run home and shove some food into our faces prior to that. Karen smoked up the last of the Chem 4 prior to her test so that she'd keep the nausea at bay and to help her relax. The MRI itself went fine but as we waited and waited after the test to meet with Dr. Moini for the results it became clear something else wasn't 100% fine, namely the administration at the radiation office. Long story short: they hadn't updated their schedule so the doctor was occupied and was not going to be free for a very long time. After more than an hour of waiting and with Karen visibly wilting by the minute, we left for home. Karen took right to bed and I had my weekly work conference call. After that I headed to Patient's Care Collective to stock up on more Chem 4. Driving back, Dr. Moini called and asked us to come in.

While I was driving home, Karen began puking all over again. That side effect is pretty unpleasant all on its own but the worst thing is the abdominal pain. Karen puts it at a solid 7 out of 10 and apparently our hopes that she had turned some kind of side effect corner were misguided. She was feeling as bad as ever. I scooped her up and off we went to Moini.

So....the MRI...yeah....

There are new brain mets. These are much smaller than the ones that threatened to derail last year's Festival of Pies but they are likely the cause of the memory issues we had noted. Their location was not super-clear at first--there was some thought that they were actually located in/on the brain lining and not the "meat" of the brain itself. The distinction matters because it would dictate the sort of treatment Karen would receive. Mets in the brain meant more targeted radiation, mets in the lining meant full brain radiation. After consulting with the tumor board at the hospital, the determination was made that the metastases were in the brain and targeted radiation was called for.

This is a brain radiation mask like Karen will need. It's not even remotely creepy.

For the moment, though, we wait. The trickiness of the location has prompted Dr. Moini to want us to consult with another neurosurgeon in order to get things set up as best as possible. Since the growths aren't enormous or causing pain or anything, there is not any urgency here. So there might be a wait of a week or so before treatment starts (which, since they like MRIs within 7 days of treatment means there is likely another MRI in the immediate future).

That waiting will be a little more tolerable thanks to a few things. First, we and our oncology team have decided to reduce Karen's Zykadia dosage from 750mg  to 600mg which is one less pill per day. The hope is that will at least lessen her side effects. We don't want to lower the dosage to the point it stops having a positive effect on the cancer so we need to strike a balance between the dose and the side effects. This drug is challenging for anyone to tolerate but obviously we'd like her to stay on it since it's working. Secondly, Karen has gone in to the oncologist's the last two days (and will return Monday morning) for IV fluids to help rehydrate her. If nothing else, the fluids have helped bump her blood pressure back up to something that more closely approximates normal.

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.