Friday, July 25, 2014

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.




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