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

back home, update, hospital pic.

Ok, this blog is messing up. Here is another attempt to post a picture.
Both of us are back home as of yesterday. There might be another “real” brain surgery forthcoming, but we are all busy “willing it away.” They ended up doing a slightly more elaborate surgery this time and quadrupled the steroids. I seem to be doing better with that, and look like a swollen balloon. No good in vanity terms. Also got stronger pain pills. All of it combined seems to do the trick for now, hopefully long enough until I can actually take the medication that will take take care of the problem and won’t just be trixing around. This temp fix won’t last long. Better than nothing though. I can sort of type, walk, and see. Thats better than a week ago.

hugs to everyone.
Shani/B.

Gallery

Lucinha and I in Hospital. I admit that my outfits isn’t nearly as melodramatic as the one I sent with the Gammakife procedure a few months ago. But Lucinha seems to make a nice addition here. Don’ you think? hugs … Continue reading

Trials, Defeats and Cry for Help!

Dear All,
It is by now clear that the Boston trial is not working, and I wasn’t even able to make it up there for the last visit. I was too sick to make to my own trial. Anyhow, so I initiated Plan B, which consists of implanting another “port” in my body, (scalp), to provide a chance of access for the chemo tor each those nasty tumors. I could explain much more, but I figured that not everyone is interest in those nitty gritty details and it hard for me to type these days. Might be best to respond to Robert and not me for the time being.

I am also sending this as a “cry for help” to my NYC based friends, Robert and I are not handling the situation very well anymore. its just too much, especially the cooking duties. I know a number of you have offered in the past, ever since the “meal train” collapsed by the end of spring semester and after the “summer hole” when everyone is fleeing NYC, and i was holding back a little. Even just socializing or communicating is very taxing to mr. Anyhow, I guess what I am trying to say is that we would really use the help,but might not not e good host by any means. For those who participated in the mealtrain last time, we could just activate it again. As you can probably tell, typin is very difficult for me right now, and any logistic type of occupation should probable be shared with Robert as well.

OK, my eyes are closing on their own. This week my mother and Frank are flying in from Europe, so we are covered. The week after (starting Oct 10 we could use some dinner cooking assistance/deliveries. I know this is a lot to ask, an I am nor doing it lightly. We are also looking into different social security typr of things, such as meals on wheels, homecare programs, hospice…., palliative care none of which sound all that appealing to me, but certainly a step up from canned soup at the corner store.

Anyhow, thats enough for tonight, No cute Lucinha pictures in this post, but we took her to CT to the beach and she loved it of course. And who is more important als Sie ?! Nobody I I can think off…

Future posts might be coming from Robert on my behalf. Don’t be alarmed, doesn’t mean that I sm not around anymore, just means that my ability to type is

Suomenlinna

Dear All,

Suomenlinna, the island we are on right now (right in front of Helsinki) is incredibly beautiful, clear clean fresh cool air, quiet (!) all of it. The first few days I wasn’t able to notice any of it, walking around like a “symptomatic zombie.” But things got better and I am getting around a little. We also have a balcony here, so if everything else fails I just sit there.
Since things seemed to get better I tried to get off the steroids, but was punished with immediate wake-up headaches and running into walls activities. I guess if I have to be on for now. Steroids are doing the usual not able to sleep while very tired, face swelling + bad skin (not vanity compatible) thing. Lucinha, is in heaven as predicted, swimming in the ocean every day, running around off leash and developing a nasty habit off eating wild geese poop.

All my best,
Shani/Beatriz

We are off!

Dear All,

We are off to what is left of our art residency in Finland. I got all depressed last night, that what was supposed to be a month of work in beautiful surroundings, got shrunk down to 12 days and I am physically feeling rather “symptomatic.” But I am hoping that things might improve a little while there, or otherwise I will find a way to sit outside by the water, so I will be safe and can still enjoy the view. Lucinha is helping me walk now, and unless I have a “human Lucinha” with me, I don’t dare to leave the apartment anymore. But she is quite the trooper, and still a playful puppy when not on duty. She will love the island and I am happy about that.
After our 12 day stint we will now only have 4 days in Germany, but I’ll make my mother’s birthday party, so thats a good thing.
I will *not* be able to go to Documenta though, so for anyone who is there or goes, I’d love some pictures. I hear its quite good, and I have a tiny little something in the “Worldly House.”

The trial isn’t affecting me too much, its the other drugs and disease itself I am afraid. Frank who was here from Switzerland over the past 2 weeks helped Robert me a lot, and now I think I need 2 people all the time! Seems to take two humans (+me) and one just to take care of me!! Ayay. (below bad pic of Lucinha at the subway station)

I hope everyone is enjoying their summer,

All best,
Shani/Beatriz

Searching for Advice

Dear All,

Frank, Robert, Lucinha and I are back from Boston in crazy NYC. Good news: I got into the trial. Its a long shot, but its a shot.
More good news: I met a *very* nice and seemingly very competent medical oncologist at New York University Medical, and he and I developed a back-up plan, in case Neratinib (the trial drug), won’t do the trick. I still feel like I am racing against time, but this new oncologist really calmed me down overall, and thats a good thing. Anxiety still seems to be persecuting me all the time though, and at this point I could use some advice:

I have known (and so do most people in the cancer circles I think) for 20 years that marijuana isn’t just a recreational drug, but also helps with a lot of cancer (and other disease-related) symptoms and treatment side effects. At this point I pretty much full-fill all of them (anxiety, insomnia, pain,inflammation, and nausea). In California it would be very easy to get a medical marijuana license, but in New York, they still don’t have a licensing system in place. If anyone knows about a (legal) work-around, please let me know. I haven’t been interested in this route over the past 3 years, but now I am. I couldn’t smoke anything, but those hash brownies might be worth trying (which I never have in my life by the way. I guess thats kind of embarrassing, but then again, I had so many licit strong drugs in my youth, I just had no desire to add anything else.)

If you have any ideas, please contact me off this blog.

Below are a couple of pictures of Lucinha and me on the history/tourist trail in Boston (Democratic Donkey) and on the drive back the “Plymouth Rock.”

Many hugs,

Shani/B.

A few decisions post-picnic

Dear All,

Our picnic on Sunday turned out to be a very nice event, with BBQ, little humans, a dog, and many nice adults. I am only attaching one picture, mostly to show off Kathy’s beautiful smile.

The steroids just lasted me through Sunday, I had lots of energy was busy making sure that were enjoying themselves, even though me, the “worry ward” probably was more in the way than anything else :).

We had house guests the following 3 nights, which was also very nice, since I hadn’t seen them for a long time. However, on Monday evening some of the symptoms started coming back, despite the steroids. So far not the “super scary stuff,” but my balance/walking/dizziness are pretty bad right now.

Lucinha and I are at the Creative Capital Retreat now. It is hosted by an organization that provided me with a grant 3 years ago, and while “work,” a very nice event, especially since some of my fellow grantees are good friends.

On Sunday, we will proceed directly to Boston, to get “screened” for a trial at Harvard Medical. Robert will meet me there, and it looks like Frank from Switzerland might be joining as well. With Lucinha on top of that, I should be well protected!

Should I be accepted into the trial, we will leave Boston 2 days later, equipped with 2 weeks worth of pills, to be taken daily in New York. [They wouldn't go for my suggestion to just give me 5 weeks full of pills and leave to Europe the next day]. Assuming that I will tolerate those pills (and that all these symptoms I am having can be put under control), we will then return back to Boston for just 1 day 2 weeks later for a follow-up, get more pills, and leave on a plane to Europe. Right now, I have to admit this plan seems rather unrealistic, but I am not giving up just yet.

Robert and I had a lot planned for this fall, including an arts residency in Helsinki for August, my mother’s 70 birthday in Germany, and then sometime later a trip to the UK, India and Mexico. Sprinkled in between was supposed to be an art/workshop residency in New York. Keep your fingers crossed for me that I won’t just be hanging out in the hospital, getting another brain surgery instead. My biggest fear right now.

This is it for tonight,
I will be in touch, and if any of you don’t have, but would like Robert’s direct contact, please let me know.

All best,
Shani/Beatriz

Scary Times

Dear All,

Well, things started turning a bit dire this week, since I became what is called “symptomatic” in cancer speak. I started loosing my vision, couldn’t speak properly, couldn’t type on my computer (I am a fast 10 finger blind typer, under normal circumstances) and turned dyslexic. The next day the whole world turned into slow motion, and as I was walking out around I thought I was inside a movie trailer for a Science Fiction movie (and no, for those of you who enjoyed hallucinogens in their youth, its not fun at all), but kind of interesting I admit, just very disturbing at the same time. I also fell flat down on the street for the first time – scary. Lucinha made sure I got up alright (well OK, maybe Robert helped a little) and wouldn’t leave my side even though I dropped the leash during the who incident. Wonderful pup. I am not really a religious person, but if there was such a thing as God, I know that s/he is sending me energy through her.

Anyhow, I am back on steroids for a few days, and for once I am thankful for those drugs, I can type again, my vision is just a little blurry from lack of sleep (steroids take your sleep and even render you a little “manic”), but frankly thats nothing compared to the events earlier this week. This sunday we have a picnic planned a little north of NYC and for a while I didn’t know what to celebrate, it couldn’t be the “scan result celebration” I had hoped for, I just am calling it a celebration of friendship. Right now I think it will be a celebration of dodging the bullet of feeling “symptomatic” at least for the time being. I know that not all of you will be able to join, but you are in my heart and I will be thinking of you. The fight for survival is not won alone, and you have all been there with me in your own special ways, and I am very thankful for that.

I know that some of you are eager to hear about my next treatment steps. I will write more about that next week. We are still in the process of confirming the opportunity of joining an investigational drug trial at Harvard Medical.

More soon,
from Shani/Beatriz, who loves the fact that it is raining in New York today. Sometimes it just feels so cozy to me.