Post Sandy

So we got power and water back Last Saturday, almost a week after it went out. It was just in time for us, as we had run out of water from the neighbor’s tub to flush our toilet with (I would run buckets back and forth), and carting heavy containers up 14 flights of pitch-black stairs would not have been fun. Not having to walk 35+ blocks to get a cell signal is nice too.

Shani’s not been doing well lately, and she wants me to let you all know that. Although the elevator works and she can go outside again, it’s a pretty major ordeal. We’ve been able to “walk” (walker/cane/human assisted) for about 1/2 a block before she collapses or starts feeling nauseous. It’s been crisp, clear, cold but lovely Fall weather the last few days, but she’s sadly been unable to really enjoy any of it. Her pain’s been managed a little better, but the vision problems, balance problems, and fatigue have gotten worse. She’s also been throwing up more than usual. She’s basically needing help with pretty much everything at the moment… including small things like getting from the couch to the kitchen table, a distance of about 10 feet. We’re still hoping some of these symptoms will improve with the treatment. Speaking of…

This past week we spent a fair amount of time trying to find out what’s going on at the hospital (which was closed/evacuated) where Shani is supposed to get the Herceptin (in both skull and chest ports). She missed a week due to Sandy. We finally got a call telling us the new place where the doctors have temporarily relocated. Unfortunately, when we got there for the injections using the skull port, he was unable to draw fluid from it (step one of the process to make sure the port is functional). Thus the oncologist was afraid to inject medicine into it, since he could not tell with certainty if it was blocked. So we went back over to the neurosurgeon’s to see what he might be able to discover. Not much, ends up. So shani’s scheduled for scans this Monday AM (the 12th), and pending what they tell us, potential surgery to try and un-obstruct the port Tuesday. However, there is also a chance that the ventricle the tubing is in has just “collapsed” a bit, which sounds bad but would actually be a good thing, as that means no surgery is required, and the medicine can be given anyway, as the tubing is not actually blocked – there just isn’t the expected fluid to withdraw from the shrunken ventricle. Hopefully this makes some sense to you all. It seems clear as I type it…

Health care through the insurance racket has proven to be more than a little frustrating. You make/receive endless calls, get the various agencies involved to help call for you so they can provide you their service, then find out insurance authorizes only 3 days max, for 2 hours per day, of visiting nurse service, at hours that are convenient to them, with different people coming each time. On top of that, the people they get are sub-contracted at minimum wage, and are trying to make ends meet by going from one job in one part of the city, to another. Then when that time runs out, you have to apply to get more, different hours, different people. it’s a joke, and pretty much useless. Hence the rise of private service care providers, at much higher cost, out of pocket. That’s what Shani’s decided to do, just to have some consistency, and be able to plan/time manage better.

So that’s the gist of it. Not a very pretty picture right now I’m afraid. I’ll plan to make another post once we know more.

2 thoughts on “Post Sandy

  1. Dearest Robert and Shani, I just now received notice of this. Talk about the ritual of ordeal! I am thinking about you both having to live through this J.G. Ballardian scenario of high rise with no power, etc. I hope getting power back was sort of a rush! More than that of course the Kafka-esque contribution of health insurance. I have learned that is a full time job in itself. Sorry i can’t get to nyc just now. Praying for beautiful restful moments for you both. Sending love, claire

  2. I have been out of email contact, so just got this. Darlings, I am with you and thinking of Shani and knowing that we all love her very much and wishing I was there to help. xoxoxoxo, Praba

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