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.