Last Friday, a week ago, I got home at 5 after the CT scan, bone scan, and signing up for the trial, went for a walk, and my phone rang at 5:39 with a call from “RESTRICTED.” It was my oncologist calling from home to say that the CT scan showed spots in my brain. He hadn’t seen the CT scan, just gotten told about it from the MD on call. He told me we had to go get an MRI ASAP via the emergency room to make sure there was not dangerous swelling and to see if I needed steroids or anti-seizure meds. Yikes.
So we went to the ER that evening. Got there at 7:15, eventually got neurologically checked out by the ER resident and the attending, and met the neurology resident. He said of the CT scan, “I saw the two spots, but I am not impressed” which made me laugh. Many nice people at the ER. Much slowness. I kept having to remind myself, when I felt panicky “what am I DOING here?” feelings, that I was only in the ER because that was the way to get an after-hours MRI. There was no emergency. I was not emergent at all, really.
I got the MRI starting at around 10:30 (Eric got to be in the MRI room, with earplugs and ear protectors and everything). The MRI folks were nice too. An hour of NOT MOVING MY HEAD got pretty difficult in the end due to a fold in the sheet covering the headrest, or something…slight discomfort because weird ledge-like feeling became a BAR OF FIRE because I wasn’t allowed to move.
Then we waited another long long time for the neurology resident to read the MRI and talk to the attending neurologist, Dr. Kenning, who was at home. This was when I started to feel a bit like an animal in the zoo pacing around my cage.
So I seem to have two brain mets that are so far not causing any real symptoms anyone was impressed with. I said my eyes had been kinda blurry all day until evening, I said I had a headache but not a big one and wouldn’t you if you’d spent all day at AMC getting injected and scanned and then come to the ER? None of that really worried anybody (although vision changes are an effect of brain edema). There were many tests to assess my neurological intact-ness, meanwhile Eric and I are programming a new feature to MANA Stats on his computer or I am reading the New Yorker or we are playing this really tricky videogame. Finally the resident reported that it looked the same on the MRI, 2 lesions, minimal swelling, and since I was showing no signs of any problems and was “neurologically intact” (New Yorker reading, check; programming, check; and the game was a real brain-twister) did I want to go home and come to see the neurologists on Tuesday? Well yes indeed I did. No steroids? No, no need for steroids. We left at 1:45 am.
So this is additional bad news for sure. However, it ended up not messing with our trip–although from Friday night to Sunday evening we figured we weren’t going to New Orleans after all, due to having to see the neurosurgeon. However, he called Sunday and said that we should go, that he would start setting things up the week I am back, that we wouldn’t lose any time in the treatment plan if I just came in a week later since it was Christmas week etc. Great! So unexpectedly, we went, and I am currently sitting in my mom’s living room in her newly-acquired house in the Marigny neighborhood of New Orleans, having just walked all over the French Quarter with Eric. The only trade-off was having to take low-dose steroids just in case of swelling while I am gone. He said if he had actually seen me then maybe he would feel comfortable without me taking anything, but under the circumstances…
Next week we’ll meet with the neurologist and the radiation oncologist and they will have figured out whether they can treat the mets with stereotactic radiosurgery (http://www.nlm.nih.gov/medlineplus/ency/article/007274.htm or http://www.abta.org/care-treatment/treatments/stereotactic-radiosurgery/) or with regular surgery. Whole-brain radiation, which scares the crap out of me, is not used unless those other two won’t work. The mets are in the left motor cortex and the cerebellum and the neurologist said they look, so far, reachable by radiosurgery. So that’s…good? Because of where they are, I am now on the lookout for right-side movement problems or weakness (none) and problems with balance & coordination & walking (none). Also worse headaches than I have occasionally been having, and worse vision problems.
When the mets are “stable” then I will be eligible for a trial again…until then, I’m not. So that’s another piece of immediate badness. And at the big-picture level, it makes my prognosis worse. Hard to treat the brain.
Moral: Never answer a call from an unrecognized phone number if you have advanced cancer!
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A joke, Ellen? You make a joke?!! You go, girl!!