Of wheelchairs, cold, Thanksgiving and bad hospital news

Dear All,

Well, the news is not good. The treatment doesn’t appear to be working. All tumors in my brain are growing and I am doing worse every day (literally). Losing control of my body, motor function, … you don’t want to know the details. Its not a pretty sight. My doctors are talking about hospice now, they have one more chemo option, but are also talking about stopping everything and “letting me go in peace.” Not quite ready for that, and besides, I feel all but peaceful right now (who would with that news?!).

So we are back to researching treatment options, side effects, trials the whole thing, except that I can’t contribute much at all since I am such a mess. My friend Nicola and Frank from Germany have helped a lot on that front in the past and are back on the “team” now as well.

Other than that my aunt & cousin came up from DC to visit for Thanksgiving, and brought the entire Thanksgiving dinner with them! My mother came rather spontaneously as well, so we had an American Thanksgiving with only 1 American, 4 Germans, + 2 dogs! It was very nice. We managed to finish off the Turkey in just 2 days! (and no, the dogs didn’t get to help).

Besides that, New York is freezing. Seems like we skipped fall and went from summer to winter. I have a wheelchair now. We are going through all kinds of different rental models trying to find the right one. Its horrible to be so dependent, but on the other hand, that chair makes me feel much safer, otherwise I could never leave the apartment anymore!

Thats it from
Shani/Beatriz in New York.

Ps: I might not be writing for a while, but wanted to send a post before things get even crazier.
And thanks to everyone for food and things, it’s one big worry off the list.

Directly from me

Dear All,

Robert so kindly posted in my place the past couple of times. Its very hard for me to type for me now, because my vision is so impaired and my motor skills are really bad now. I am constantly hitting the wrong keys and have to correct every word. I used to be a very fast typer. Argh. Anyhow, I didn’t want Robert to let you know that I am not well. That just sounds weird. In fact, I am doing terribly :)!!

Not being able to walk, see or communicate is more than even I can take. I also just tired all day long. So my work window is very small, and everything is happening very sloooooowly.

Taking a bath or shower + getting dressed is a one hour procedure. And after that I am so tired. I have to lay down again. Its ridicules. Anyhow, I am using this walker now inside the apartment, so I can at least make it safely from the couch to the kitchen. I fell 4 times before and had to learn the hard way I guess.

The likely surgery on Tuesday, stresses me out to no end, because I am under deadlines and can’t always let people down. Its a small procedure, so the surgery itself is really no big deal. I have an amazing team working with me now, but I have to do my part so that they can do theirs. Its very simple.

And stress is of course the worst I can do, but I have always been good at that part, ugh. But it really has to stop, its the antidote to healing as we all know.

The treatment might be working, we don’t know, its just so far it hasn’t made me feel any better, but that can have lots of reasons. The fact that I can’t sleep for example.

Lets see, we won’t know for another few weeks. The hospitals are still completely post-storm messed up. And my surgery will take place at a different hospital since mine won’t re-open until December.

What else. Yeah, couple of corrections to Robert’s post. I think he meant to say “home care” not “health care” were impossible to do through my health insurance.

I have private homecare person now, she is great and luckily paid more than minimum wage. (still far too little in my mind, but I couldn’t really afford more anyhow).

I also have a physical therapist coming to the house, and he is paid by my insurance. He is great, and its helping too! Today I walked almost 3 blocks, with the walker, Robert and Lucinha.

Robert is not doing well either btw. Having to do everything is just too much. I am hoping that Elise, the homecare person, will help make things easier over time. But he has to return to California (to teach) anyhow soon, so he will be relieved of duty then, if not before. Who knows, I might actually get better. It seems like such a distant possibility right now, but perception can be confusing.

Ok, my hands are cramping, and I have been wordy enough already, I just took the steroids, and I guess they made me hyper. They also gave me swollen pumkin face, and I am just not looking into mirrors anymore. I look terrible. Sick, pale and swollen.

Its 1am here now. Time to stop.

More, less wordy soon.

Shani/Beatriz

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.