Holding Steady

We've been silent for about a month here because there's been really nothing to report. Karen's doing about the same and if anything she might be having more good days and better energy (apparently not working agrees with her). We had our monthly appointment today and in spite of the less-than-stellar recent PET scan, her blood work checks out and has barely moved. So we just keep doing what we've been doing.

Classic no news is good news scenario.

Hot Hot Hot!

Me mind on fire! 

The results of Karen's PET scan came in yesterday afternoon. Of course, the doctor called while I was out riding my bike so I was not around to ask questions and get things clarified. Karen is a whole lot of very nice things but a rigorous inquisitor of medical info is not one of them. So while we've got some new information, we don't have an especially firm grasp on it.

So the good news is that the cancer does not seem to have grown or spread. It has not re-bloomed and started taking over new or even old territory. That is indeed positive news.

Me soul on fire!

On the other hand, the scan does show "hot spots." I don't know where because no one asked but I'm assuming right now that they are most likely at the same sites where Karen had growths before. As a point of comparison, Karen's PET scans of a few months ago showed no "hot spots." All the sites where there had been activity had gone cool and were not lighting up the scans.

What does this all mean? Well, I won't be able to get a definitive answer until our next appointment on Friday, Sept. 6. Short term, we keep doing what we're doing, i.e. taking the crizotinib and keeping things at bay.

But what are these hot spots and are they are cause for concern? Since I still haven't managed to secure my medical degree (or pass the bar or get my gold medal in women's powerlifting and by that I do indeed mean powerlifting females not barbells) I'm not super-confident about how to characterize these things. What I've been able to glean from the Google Webs, is that they are reflective of potentially cancerous activity (to be 100% certain, a biopsy needs to be done). That said, a biopsy is kind of moot in this case: you need to biopsy more when these things first appear. It's like having a bear break into your cozy mountain cabin and shit on the floor. The first time it happens, you have to test the shit to figure out what did it. The second time, well, you're pretty sure it's just that same asshole of a bear befouling your alpine retreat. You could test the crap again, but do you really need to?

Feeling Hot! Hot! Hot!

So while the cancer has not spread as of 9:30 Thursday morning, the bottom line is that it seems to be revving up again. The hot spot is indicative of something that is metabolically active. This certainly explains why she's been so fatigued: there's a real tug-of-war being waged in her body right now. It also probably means that we are about near the end of this leg of our cancer relay and will be handed the chemo baton sooner rather than later.

STATUS UPDATE

• Karen' latest PET scans show no growth or expansion of her tumors.
• The PET scan does show some "hot spots."
• The hot spots are indicative of metabolic activity. This activity was not present in previous scans.
• For now, we stay the course and treatment does not change.
• Our next oncology appointment is this coming Friday, Sept. 6 and I hope to have clearer if not actually better answers at that time.

Early Retirement

Alas, no gold watch awarded for this early retirement.

Tomorrow, after a lifetime of exercising a commendable work ethic, Karen will not be going in to Wells Fargo. Last week, after struggling every day just to make it to the front and coming up short, Karen didn't have the strength to make it to the office. Even on her work-from-home days, she lacked the energy even to log in and answer emails. By Thursday the writing was on the wall and Karen made it official on Friday: she'd be going back on disability and would not be going back to work for, well, probably ever.

It feels right. We waited far too long the first time around for Karen to go on disability. Looking back, I have no idea how she was making it in to the office back in December/January. We didn't wait that long this time: there's just no upside to her pushing herself like that. We are comfortable with this decision.

Which does not mean that we're all that happy about it. While Karen is looking forward to being around the gaggle of misfits that comprise our immediate family, it's hard not to see this as a small defeat. After several months that were largely characterized by an earlier bedtime and the transformation of our bedroom into something that smells eerily reminiscent of my old NYU dorm room thanks to the glory of medical marijuana, the cancer has started chipping away at her life again. It has reasserted itself as a presence in our lives and that pretty much sucks. It is probably here to stay now.

This does not necessarily mean that her meds have stopped working. She's having a PET scan next week that will give us a clearer (and literal) picture on that front. But I'd be lying if I didn't say that there's an undercurrent of dread now. Over the last couple months we've been waiting for the crizotinib to lose effectiveness and her fatigue and occasional difficulty breathing really seem to indicate that we're nearing that milestone. We don't look forward to what lies ahead if that is indeed the case.

Karen Is a Bad Doctor

If Karen were a doctor, she'd be Dr. Giggles.

And after our first bi-weekly appointment to keep extra tabs on Karen's condition, we are moving back to monthly appointments because while Karen has indeed been feeling more worn out, it does not seem to be the result of her cancer roaring back but rather a muted encore performance of her initial crizotinib side effects. With labs and everything indicating that she's still doing well (including the intermittent facial rash that is a drug side effect) there's no reason to show up every two weeks at the oncologist's. Meaning there is no good reason to wake me the hell up so freaking early twice a month. So we will just keep plugging away and hold off on diving into the chemo pool for at least another month.

This being said, everyone is pretty clear-eyed about the fact that the crizotinib will most likely lose efficacy fairly soon. With that in mind, she will have another PET scan near the end of August to see how she's doing. And with the probability that chemo is not too far distant, there are some other things going on.

Specifically, there will be changes at work. Wells Fargo has started to look into hiring a replacement for her and, in fact, Karen is interviewing candidates. She will be moved to something that used to be called "Special Projects" at my old job at Ziff-Davis. While I personally like the way it sounds that she is cleared to build and construct a death ray I'm sure it is much more mundane than that.

Not as mundane was the start of this transition at work. Earlier in the week Karen had a meeting with her immediate team members to let them know that Wells Fargo was starting this process. It was a small group and it was pretty quickly awash in tears, with some members needing to excuse themselves from the room temporarily. Karen has been incredibly fortunate to work with such great people, people who have become real friends and that truly care for her. The downside is it makes this transition a whole lot more difficult.

In the meantime, we will continue to enjoy the parade of visitors. Next up: the Agnelli/Ferrante clan who arrive tomorrow! Frankly, considering the air miles Karen's illness has generated, I think we're due some kind of discount from the US airline industry.

No Clever Title

Try as I might, I'm not having much luck coming up with titles today. This is frustrating because I was asked to think about game titles for work today and I totally drew a blank. Similarly, I'm drawing a complete blank coming up with something delightfully witty for this post. And that lack of a slyly humorous title is holding me back from finding an appropriately inappropriate pic to post alongside the text. Here's hoping all of you (and my co-workers) can manage to overlook this shortfall this time around.

After a few months of visiting the oncologist on a once a month basis, Karen is going back to biweekly visits. Our last appointment was just last Thursday. Her blood work was fine and Dr. Sherman didn't find or hear anything concerning during her physical examination. So that's good. However, Karen is increasingly finding herself short of breath. She runs out of breath if she talks awhile and if she exerts herself which these days means just walking for a bit. For the last week or so she has been making an obvious effort to conserve energy, sitting still and breathing very deliberately and limiting her speech. If we're out walking around like we were over the weekend at the Monterey Bay Aquarium she takes frequent rest breaks.

Karen believes the crizotinib is starting to lose its efficacy. We are on the cusp of her eighth month on the medication which is when people can typically expect it to stop working. The rash on her face--which is a side effect that indicates the drug is murderizing cancer--has gone. Her fatigue is worse. And there's the trouble breathing. So we'll be seeing the doctor every other week now to keep tabs on it.

It's not a great development but we are trying to keep our heads up. After all, we were convinced it had stopped awhile ago and everything was fine and the trouble she was having then cleared up on its own. This time, the difficulty does not seem to be going away.

The good news is that our action-packed summer continues apace. My college roommate Neal Rosen and his wife and son just spent a week with us and it was simply fantastic. If there's an upside to this cancer business it's that we have been blessed to spend lots of time with people we care deeply about and who apparently are fond of us as well. More New Yorkers are coming in two weeks (the Ferrante-Agnelli clan) and there will be family as well in August, with one of Karen's sisters visiting and with Miranda and I going to Oregon mid-month to see my sister (and maybe meet my other half-sister).

I'll post updates as they develop. Unfortunately, it looks like they might be coming more frequently now. Here's hoping the headlines can keep pace.

Baked Alaska

And so we have successfully returned from a week cruising the atypically sunny and warm shores of Alaska.

Not the Alaskan bear we saw.

Karen's Glorious Bucket List Cruise of Doom was a success pretty much all the way around. Since we didn't go on a Carnival cruise we were spared the indignity of defecating in the hallway. This made the cruise much more enjoyable. I must admit that while I still don't particularly care for cruises and did at times feel trapped on the boat, I did basically enjoy myself. Winning $300 at blackjack helps. Absolutely crushing a roomful of strangers who mistakenly thought they were participating in a couple of lighthearted trivia contests and not a bloodsport really helped. Not that I'm pathologically competitive or anything.

Karen had a great time and the trip was everything she hoped. She saw a glacier "calve" from the helipad on the bow of the ship, witnessed a whale breaching just a few yards from her whale watching boat, and even got to see a bear in the wild during our visit in Skagway. The entire thing was relentlessly documented by Karen's sister, Liz, who took a photo every time she inhaled. The kids had a good time as well, including, however improbably, Dash, who made a bunch of friends and kept so busy we hardly ever saw him. He spent the final night at sea lounging in a hammock with twin sisters.

And now we're back and work starts again tomorrow (except for the kids who actually had to return to work about 12 hours after we got back home). Karen is feeling well, we've got more friends and family lined up for visiting and except for the hellish heat things are pretty good.

If it weren't for the cancer this would be shaping up to be one of our best summers ever. It's still not too bad.

Still Boring

This morning Karen had another oncology appointment and, just like the last one, it was pretty freaking dull. Huzzah! No news is definitely good news when it comes to lung cancer and Karen is excelling at failing to be newsworthy. So things don't change: she's staying on the same drug regimen, staying on the same activity level, blah blah blah.

The only Palin we really want to meet.

While her level of activity is going to remain the same, the actual activities will be changing in the short term. Tomorrow we leave on Karen's Glorious Bucket List Boat Trip of Doom to Alaska. I will be lamenting the lack of Internet access for the coming week (except when on land).

We might bring back a Palin baby. Or three. They've got lots, right? Who knows.