In Loving Memory of Shani (6/11/74 – 12/27/12)

Dear All,

It is with incredible sadness that I write this post. Last night (December 27th, 8PM EST) Shani took her final breaths. Her mother, her dear friend and former partner Frank, Lucinha, her acupuncturist James, and I were with her, providing as much love and support as we could possibly muster. James came at a moment’s notice to do some Reiki, immediately silencing the rumbling in her lungs, and allowing the faintest of smiles to cross her lips in passing.

As you know from reading these posts, it was a long and difficult journey. It seems so unfair that one so young, brilliant, beautiful and talented, and with so much yet to give, should go so soon. Shani handled her disease with such strength and dignity. It was incredible to bear witness. It was not easy to be sure. There were moments where she felt like giving in, but she never did.

Shani continued to do whatever her body, mind, and force of will (which she had in abundance) would allow – researching new treatment possibilities, enduring surgery after surgery, developing creative projects both independently and collaboratively, and most recently translating her experience with cancer into some amazingly powerful art projects… something she had earlier promised herself she would never do. Her position shifted because in her most recent work she was able to find a place from which to provoke and reflect without it, as she said, “being about me.” For her that made all the difference.

Thankfully we had the chance to go to a house on a lake for the holidays. It was a trip Shani was determined to make, no matter how badly she was doing. I think she knew it may well be her last. Her mother, Frank, Lucinha and I loaded a van with stuff, and were joined by her aunt Birgitt, cousin Ngouah, and dog Sasha, who drove out from the DC area. Her aunt provided an amazing Christmas Eve feast, and other delicious meals, as did Frank. So we had good food, a lovely tree, exchanged gifts, and even had some snow. Shani, though very weak, was fully conscious and actively participating – often helping to mediate minor conflicts, or giving directives from a distance, or managing/scheduling her care so that her care’givers (us) wouldn’t be overly burdened – I was “the night shift”, Frank “the day shift”, and her mother always “on call.” The reality was of course often more complicated, as we all wanted to be there all the time.

Birgitt, Ngouah and Sasha left on the 26th. We were scheduled to leave back to NYC the 28th (today). Unfortunately, Shani took a turn for the worse, sleeping most of the day on the 26th, no longer really speaking, though still responsive when spoken to, and barely opening her eyes. We decided to pack that night, in the midst of a snow storm, and drove back the next morning (Thursday the 27th). Shani did not improve, and slipped further into sleep. We sat with her, holding her hand, caressing her face, coaxing her to swallow small sips of liquid, talking to her doctor, and trying to get a hospice team to come in and minimize any pain and anxiety. They did not get there before her passing. Regardless, she seemed at relative ease, without too much pain, and appeared to go in peace with James’s able assistance.

Love to you all,
Robert

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.

Hurricane Sandy and Us

So… Beatriz i in week 3 of treatment. She’s hanging in there, but no significant improvement as of yet. The doctors say it’s still early, and will take a while to tell. Thank you all so much for help with cooking, meal ordering, etc. Really, it’s been so so appreciated.

The storm hit us hard. We are currently without power and water, and it’s getting cold. Frank was supposed to fly back to Europe the day of, and now is trapped with us for the time being (which gave me a chance to sneak out to send this, since he can stay cooking with/caring for Beatriz/Shani). Our building is pretty much empty. We live on the 14th floor, so have to go up/down 14 flights 4 times a day to get the dog taken care of. Fun fun. I though I was in reasonable shape… now I’m rethinking things! Power is almost 40 blocks away, except for some NYU buildings that are on their own grid, which I can thankfully get into with my NYU Visiting Faculty card (thanks Natalie J… didn’t think library privileges would ever be so handy!).

They estimate it may be anywhere from 3-4 days to a week or more before power and water is restored. So… if we don’t get lucky soon, we’ll be looking for somewhere else to move to. It’s really sobering to realize how utterly dependent we are on the power grid! And how little it would take to push things past the tipping point (panic, crime, etc) if things don’t come back soon. On the flip side, it’s been amazing to meet some of the neighbors, who’ve really banded together and been supportive. Ironic it can take a catastrophe before you get on a first name basis with those you’ve lived next to for years…

1 Week Since Coming Home

Hello All,

Thought I’d post another quick update. Shani came home last Saturday (the 6th) late afternoon. So she was in the hospital 3 nights total (2 longer than expected). Since coming home her symptoms have improved, though she still is very fatigued, off balance, and having headaches (but usually ~5 or 6/10, with 10 being worst; there were days in hospital where they were 10+, so this is definitely better!).

We also have had visits from VNS (Visiting Nurse Services), social workers, physical therapists, occupational therapists, and various volunteer services. All this is part of “Home Care.” So far insurance covers 3 days worth (total)! Luckily, you can keep applying for more if needed. There’s “Home Care” “Palliative Care” and “Hospice”, all of which have different criteria for qualifying. I won’t bore you here. Essentially starting with Home Care, then transitioning to Hospice when needed is the logical path. Hospice is a broader category (not just “end of life”), that most insurance allows for. Usually the requirement is the social worker asks the doctor something along the lines of “given the normal course of the disease, would you be surprised if patient passed away within the next 6 mos” if “no” then hospice becomes possible (and can also be re-applied for/extended as needed).

We also have been getting help from friends and family (thank you!) with meal donations. Heidi and Christiane set up a MealTrain for us. We’re also adding “remote restaurant ordering” options for people who live far away. You can follow the link to find out more details if interested. Finally, We’re also expecting her first meal delivery from a volunteer organization called God’s Love We Deliver. It actually seems like a pretty great organization.

Shani got her first Intrathecal Herceptin/Methotrexate treatment using the new port this past Thursday, and will keep getting them weekly (on Thursdays) for the next few weeks. It’s an interesting process. We go to one doctor that uses magnetic devices pushed against the skull in order to adjust the flow/valve in her shunt (increasing the amount of pressure so that the medicine they put in is less likely to flow down/out of the brain); then we go to another doctor who administers two shots into the port (Herceptin and then Methotrexate); then back to the first doctor to turn the pressure back down.

Her next set of scans is after 4 treatments. So send you positive energy and keep fingers (and toes) crossed that the IH does it’s job!

Post-op update

Just a quick update, as I have to head back to the hospital ASAP. Shani had surgery Wednesday to implant the Ommaya reservoir. It went well. However, the scans from several days before showed the swelling had worsened, so the decision was made just prior to the procedure, to place a “shunt” – essentially a drainage tube with a valve that runs from the brain ventricle to the stomach, and allows fluid that was not properly moving through the brain to be reabsorbed by the body, relieving pressure and helping with symptoms.

That night and the next morning she was feeling surprisingly good. But… unfortunately, by mid-day she was having extreme head pain, and nausea, so they decided to keep her another night (Thu). A brief visit from Lucinha (whom I brought into the ICU in her full service dog regalia) brought some smiles which were wonderful to see. I took some pics and will try to link at some point. Today she was still in terrible pain, and was nauseated and vomiting. They did more head scans, to make sure nothing was wrong with the new port. There isn’t, it’s fine. It’s complicated, and i can’t take the time to explain it properly here… but I’ll do my best to summarize.

Basically there’s 2 things contributing to the symptoms. First is the pressure differential created by the shunt draining fluid too quickly, usually when changing position, or sitting/standing/laying. This can be adjusted, since the shunt has a valve, using magnetic widgets. They did that.

Second is swelling in the cerebellum where the 3 main tumors are located. The Ommaya/shunt don’t help with that – only steroids do (and the Intrathecal Herceptin (IH) if it works, once it can start to be administered). So, they also increased the steroid dosage significantly, her least favorite drug in the universe, which should show positive results within the next 24 hours.

The hope is that these two things will help relieve her symptoms. allow her to come home, and create the window that’s needed to begin giving the IH through the new port. Then of course, the hope is that the IH does it’s job, shrinks the tumors, and turns back the clock.

If for some reason her pain/nausea do not improve, the only other option is to do another craniotomy, and surgically remove the tumors in the cerebellum – a difficult procedure, that has many other risks associated with it. The neurosurgeon has been reluctant to advocate doing that surgery, but feels it is at a point where that’s what’s necessary barring any improvement.

So, if you got this far and have any good wishes to spare, please send them her way… there couldn’t be a better time to do it. Love to all.

For Those Who Want to Know More

Hello all. I thought I’d make a post that describes in a bit more detail some of what Shani/Beatriz has been going through, and what the surgery Wednesday will hopefully accomplish.

As Shani has indicated, it’s been pretty rough lately, the past several weeks especially. There are several tumors in the cerebellum area that have continued to increase in size, one in particular. As they grow, the surrounding brain tissue gets irritated and swells, which can lead to all sorts of nasty symptoms – pain, loss of balance, speech and cognition problems, vision anomalies/loss, neuropathy… it’s a long and scary list. The way the swelling is controlled is through steroids. Unfortunately, the steroids have their own nasty side effects – facial and joint swelling, sleeplessness (it’s often past 4-5am before she drops off), mania, and hence are one of Shani’s least liked drugs. Of course, what happens if she doesn’t use them is far worse. So it’s a balancing act; try to take the minimum amount of the steroids needed to reduce the swelling and help manage the symptoms. Even with them, nearly every morning she wakes with extreme headaches, dizziness, nausea, general fatigue, which often lasts throughout the day. Just walking from the bedroom to the kitchen is a challenge on bad days… in fact walking in general has to be assisted lately. Of course stress, anxiety, fear, lack of sleep, etc. only exacerbates the situation. Even with all of this, she’ll still meet with her collaborators (bedside if need be), insist on taking Lucinha to a “nose-work” class, or a grooming appointment, or, as she mentioned, to a day at the beach (a rather heroic effort on her part, since every bump in the road sent jolts of jarring pain up her spine and out her head). Anyway, trying to help manage all the things Shani needs to make it through the day (shopping, cooking, cleaning, appointments, etc), as well as my own stuff, not to mention lovely (not so) little Lucinha’s… well let’s just say I wish I could be better at it. Unfortunately, here in the US, unless you stop treatment (at which point you qualify for “hospice”), or can’t feed/bathe yourself (at which point you qualify for “palliative care”), you fall through lots of rather large systemic cracks, and either need to hire private services to help with daily needs (at ~$3-8K per month), or (like most do) just handle everything yourself as best you can. There are some volunteer services one can apply for (“God’s Love We Deliver”), which we’re looking into (hopefully there won’t be too many strings attached). Thank goodness for Frank, who comes from Switzerland when he can, and her mother (from Germany), and many of you, who have helped so much.

This Wednesday (Oct 3rd) Shani goes in for her fourth brain surgery. The first (May 2011 at Sloan-Kettering) was where they removed 2 tumors the “old fashioned” way – by cutting them out. The second and third (Oct 2011, Feb 2012 at NYU, since Sloan was too conservative/unable to do it), they bolted her head to a table using a custom-made facial mask and head clamp (a partial picture of the contraption was posted in Nov 2011) and zapped some other smaller tumors with a “gamma-knife” (which is where they model the tumor sites in 3D software and then shoot multiple beams at them without actually cutting through any bone; a procedure they can only do once at any given site due to the risk of necrosis). The fourth (also at NYU) is where they will implant a device called an Ommaya reservoir into the front-right part of her head, behind the hairline. The Ommaya reservoir was described by the neurosurgeon as a squishy/gelatinous (large) marble-sized thing cut in half. It contains a tube the surgeon will feed down into one of the ventricles of her brain (I believe the right), which is used to periodically (usually weekly) administer a drug called Herceptin “intrathecally.” Surgically implanting the Ommaya reservoir is a pretty straight-forward, low-risk (1% chance of bleeding, 1-2% chance of infection) procedure. It takes about 40 minutes to an hour. It requires general anesthesia and an overnight stay just to be safe, followed by a CT scan. Herceptin has been very good at keeping the cancer out of her body for the past couple years, but does not normally penetrate what’s called the “blood-brain barrier” due to it having too dense a molecular structure (this inability is a problem for most chemotherapies and other drugs as well). Intrathecal Herceptin solves this problem, enabling the drugs given through the reservoir/port to attack the tumors directly. A number of people have had very good results using this method, and her doctors are optimistic she will as well. If all goes well on Wed, they should be able to start using the device within several days. Then it will probably be a matter of some weeks to see if it’s working. We certainly hope so, since this is probably her “last best” treatment option.

At any rate, that’s a summary of where things stand currently. I’ll certainly do my best to post as needed. Until then, thank you all for your continued support… it makes all the difference.

Oh, and Shani wanted me to point out that she loves to read your comments, and misses them (she’s concerned perhaps it’s more difficult to respond when posts become a bit “darker”).

Oh again, here’s a link to a photo archive I’ve been keeping for those of you interested (I’m afraid most are low quality cell phone and/or pocket cam pics, and it needs updating), many of you appear here and there. Beware, it’s an occasionally odd collection, and the date/time stamps on the folders correspond to when the pics were uploaded, not necessarily when they were taken.