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.