Fred Sandsmark's Blog

The Spanish golfer Seve Ballesteros has undergone surgery for his brain tumor. It turns out he has the same type of tumor as Jane had: an oligoastrocytoma. (We tended to call Jane's tumor an oligodendroglioma-astrocytoma, perhaps because we worked hard to learn to pronounce it.)

I'm happy to see reporting that gets specific about the type of tumor; too often, all brain tumors are lumped together and called "brain cancer," which I think is misleading and oversimplifying.

It sounds from news reports like Ballesteros' surgery went well. We also learn that Ballesteros got a get well message from Spain's Crown Prince Felipe, which is pretty cool. Anything to raise awareness, I say.

The full Associated Press report by Ciaran Giles can be found here.

Labels: brain tumor, Jane, medicine, people, Spain

Voter registration, voter fraud, purges of voter rolls, and related issues have been much in the news over the last few days.

My sister Linda appeared in a CBS-5 video registering new voters at the League of Women Voters booth at the recent Sausage & Suds festival in San Leandro. (They signed up over 100 voters!)

Fresh Air did an entire hour on voter suppression efforts yesterday.

Miller-McCune published a comprehensive article by David Rosenfeld on Monday.

And to add irony to it all, on Tuesday Jane's sample ballot arrived in the mail. (No, I'm not going to vote for her.)

Labels: Jane, media, news, politics, voting

The Washington Post has an informative article on Senator Kennedy's surgery. My thoughts:

First, I'm not surprised that the Senator went to Duke, and Dr. Allan Friedman, for his surgery. I predicted to a friend that he would either see Dr. Friedman, Keith Black at Cedars Sinai, or Mitchel Berger at UCSF (Jane's surgeon). These three are probably the top guns in deep brain tumor surgery in the US.

Second, I'm not surprised that the Senator was talking and feeling good after the surgery. Done well, brain surgery is surprisingly easy on a patient. There aren't any nerves in the brain -- just in the scalp -- so there's not a lot of pain associated. The biggest worry is swelling, and this will likely be approached with fluid restriction for a day or two and Dexamethasone (the hated Decadron).

Third, it's interesting to note that the Senator is planning to do both chemotherapy and radiation therapy. This is an aggressive path, and good for him. The latest treatment mode seems to be to take Temodar (an oral chemotherapy) concurrently with 3D Conformal radiation therapy. They'll likely radiate a 1-centimeter buffer area around the tumor resection cavity (the hole where the tumor was) to try to zap as many stray tumor cells as possible. That is, if it was a good resection. If there were parts of the tumor that couldn't be safely removed surgically, they may try to extend the radiation therapy into those areas.

Last, the Post article makes the point that the Senator's tumor type is not yet known. As I noted in the earlier post, "malignant glioma" is a generic term. I'm curious whether the specific tumor type will be released to the public.

One postscript: is disheartening to see the vitriol spilled in the comments section on the Post's article about Senator Kennedy's affliction. It's one thing to disagree with a person's political point of view; it's quite another to wish a person ill in such an awful, vicious way. I wonder how people who write such things can look themselves in the mirror. I hope they never get ill and have to face such hatred on top of their health challenges.

Labels: brain tumor, health, Jane, media, medicine, politics, science

A friend asked me what I thought of the New York Times coverage of Ted Kennedy's brain tumor. I wrote a long, fast email, which I'm also posting here:

They gave the general tumor type (glioma) but not the specifics. There are several types of gliomas, including astrocytomas, glioblastomas, and oligodendrogliomas. Also four grades, from I to IV (the higher the number, the more aggressive). Malignant gliomas are grades III or IV, though so-called "benign" ones still cause lots of trouble because the cranium is an enclosed space and anything that squeezes the brain in that space can cause trouble. Jane's tumor was a mixed astrocytoma-oligodendroglioma, grade III.

They gave the location of Kennedy's tumor as left parietal, and said that area of the brain was involved in sensation, motor control and language. Would have been more accurate to say USUALLY involved in language. Not always. Whether or not often depends on handedness. Jane was left handed, and had her initial tumor in the left occipital and parietal lobes. (Toward the end it spread to the frontal lobes and into the right hemisphere.) Frequently, left-handed people have their language more distributed between the hemispheres than right-handers, but still centered largely in the left hemisphere. Jane had a Wada test that determined that her language was almost entirely in the right hemisphere. (She never did play by the book!) This allowed for a much more aggressive left-hemisphere surgery back in 1998 and 2000.

I have the videotape of Jane's Wada test, by the way -- I remember it as strange and fascinating to watch, but I haven't viewed it in years. I also have a photograph of her open cranium.

One article quoted Keith Black, a neurosurgeon at Cedars-Sinai in LA. He's a rock star among brain surgeons, more famous but NOT more sought after than Jane's surgeon (Mitchel Berger). Keith Black was written up in TIME magazine a decade or so ago, I think.

One article rightly says that age has a lot to do with prognosis. Getting a malignant glioma at age 76 is not a good thing. Another article rightly says that the disease is "treatable but not curable."

The articles refer to the disease as brain tumor and not brain cancer. The distinction is subtle; generally, cancers can metastasize to other tissues, but brain tumors cannot. (You can't get a brain tumor in your lungs, but you can get lung cancer in your brain.) Doctors will very rarely say "brain cancer" in my experience, probably because to do so is imprecise, but a lot of brain tumor patients and advocates (I'm not among them) prefer to use the term "cancer" because, I think, it sounds more urgent. A tumor sounds like something that can be sliced off, like a wart. Brain tumors, especially gliomas, tend to have lots of tendrils and stray cells throughout the brain; it's rare that they're encapsulated. (One NYT article said this, in a roundabout way.)

Labels: brain tumor, health, Jane, language, medicine, people, politics

I happened across a cool blog today: Michael Colbruno's Mountain View Cemetery Bio Tour. The name says it pretty clearly: Colbruno photographs the graves and gives biographies of prominent people in Oakland's Mountain View Cemetery.

I did some Googling to find out about Mr. Colbruno. I'm not sure if the keeper of this blog is the same Michael Colbruno who is an executive with Clear Channel and a board member of the Chabot Space & Science Center. I'm pretty sure he's the same guy who runs the MikeOpera blog. (If you see this, and it's you, let me know!)

I plan to spend some more time with the blog when I'm able to come up for air. Meanwhile, I was up at Mountain View last night, freshening the flowers on Jane's niche (the heat is already taking its toll) and noticed that the new gates are almost complete.

Labels: blogs, history, Jane, people

Researchers at Virginia Commonwealth University may have found a brain chemistry connection between brain tumors and neurodegenerative diseases such as ALS and Alzheimer's. It's good to see people taking creative tacks toward the unraveling of these problems.

[Researcher Paul B.] Fisher and his colleagues were interested in identifying how the promoter region of the EAAT2 gene controlled the expression of glutamate in a group of brain cells called astrocytes. Using molecular biological approaches, the team examined all the regions and sequences in the promoter region and systematically eliminated them to then define which region was necessary to respond to ceftriaxone.

According to Fisher, this led the team to a critical transcription factor called nuclear factor kappaB, NF- kappaB, which regulates many functions in the brain and other parts of the body. This is a central molecule involved in regulation of genes controlling cell growth and survival. Once they identified critical regions in the EAAT2 promoter that might regulate activity, they found that alteration of one specific NF-kappaB site by mutation in the promoter was responsible for up-regulation of EAAT2 expression and consequently glutamate transport by ceftriaxone.

“This work not only has implications for the field of neurodegeneration and neurobiology, but may also help us more clearly understand brain cancer, including malignant glioma, an invariably fatal tumor, and how it impacts brain function,” said Fisher[.]

The full article from Physorg.com is here.

Labels: brain tumor, Jane, medicine, science

I will participate in the National Brain Tumor Foundation Angel Adventure on May 3, and invite everyone to join me, either in person or in spirit. And, of course, financially. You can go to My Fundraising Page and sponsor me (or better, join Team Jane). You can also use this handy little widget to participate. Either way, thank you.

Labels: brain tumor, Jane

An article in today's San Francisco Chronicle tells of a vaccine trial for glioblastoma multiforme brain tumors going on at Stanford (and other medical centers) and an Indian fellow named Harakhchand Savla who is participating in the trial.

There's been talk of BT vaccines in development for years, and it's good to hear that another one is entering clinical trials.

The Chronicle article focuses quite a bit on Mr. Savla's positive attitude toward his illness and treatment. (He refers to his tumor as a "happiness tumor.") But he's also not in denial about the challenges he faces; at one point he says "If you live long enough, you're going to die." That's not far from one of Jane's catchphrases: "It's my ambition to grow old."

The full article is here. There's one mistake in the article, to which I've alerted the author: it refers to "epidural growth" factor, when what's meant is "epidermal growth" factor. Still, the article's well worth reading for some insight into aggressive brain tumor treatment.

Labels: brain tumor, Jane, science

On Saturday, January 26, 2008, I'm planning to dedicate the niche where Jane's ashes rest. Details can be found on Jane's memorial site. All are welcome.

Labels: Jane

I did a difficult thing today. I dealt with all of Jane's old medications.

I had tried to pawn this job off. I had called the pharmacies we'd used; I'd called UCSF; I asked the hospice. Nobody could or would help, so the task fell to me. You can't dump old prescriptions down the toilet anymore. Instead, I went to Starbucks and got a big bag of old coffee grounds. I put a few cupsful in a large ziploc bag, then started dumping in the pills from their bottles.

Each bottle brought back memories, many of them painful. Some of these drugs were much in the news, either for their astronomical cost or their potential ferocious side effects: Gleevec, Thalidomide, Accutane. Others were old and lifesaving friends: Temozolomide, Gabapentin. Still others were drugs we preferred not to acknowledge: kytril, zofran, and the hated dexamethasone. (The first two are antiemetics taken with oral chemotherapy, and the third is a corticosteroid which many brain tumor patients take but which almost everybody loathes for a variety of reasons.) Some were cute and colorful, like the pink-and-purple capsules of hydroxyurea which Jane took while we traveled in France in the summer of 2006. I tossed in some of Delta's and Fang's out-of-date prescriptions, too.



Only a couple of the drugs -- Ativan and Morphine -- would hold any recreational value.

Once all of the pills were in the coffee grounds, I poured on the liquid meds. Most were digestive aids from the months and months of hospice care, but they included Rapamycin -- another vastly expensive medicine -- which was the next-to-last chemo she tried.

Eventually I tossed in the bottles themselves, sealed the ziploc, and put the whole mess in another garbage bag. The goal in doing all of this is to make the drugs as unappealing as possible should anybody fish them out of the trash. I certainly succeeded in doing this.



Now it's done, and I should be pleased that I've completed a long-postponed task. Instead, I feel rotten. It's almost criminally cruel that survivors are stuck doing jobs like this.

Labels: brain tumor, hospice, Jane