Wednesday, April 08, 2009
Doctors and Patients
An article in Monday's New York Times told about a radiologist who experimented with attaching a digital photograph of a patient (the outside of a patient, that is) to the patient's digital CT or MRI scans to see how doing so affected radiologists' interpretation of those scans. The abstract of his findings includes these results:
The Times article also implied that attaching a photo could have a similar effect on "pathologists and other doctors who rarely have contact with patients."
This reminded me of something that happened not long after Jane was first diagnosed with her brain tumor back in 1998. Our monthly support group at UC Davis Medical Center followed a format in which we'd alternate between open discussion one month (we called it "sharing") and a guest speaker the next. One month, the neuro-pathologist who had prepared Jane's initial pathology report -- a report that was quite dire in its prognosis -- was to be the speaker. (I'm embarrassed to admit I don't recall his name, but I remember that he looked like a guy who spent his days in a dark room performing experiments and looking through microscopes -- pale, rumpled, hunched.) We listened to his presentation, and learned a lot about how brain tumors were identified and classified. After the talk, Jane approached him, pathology report in hand.
Never a shrinking violet, she asked him to read and autograph the report. He was startled but polite; he looked at the report, looked at a very healthy and alert Jane, and said, "Clearly, I didn't know what the hell I was talking about." A huge smile broke across his face, and he autographed the report with a flourish.
We related this story a few times over the years, and the reaction was almost always the same. Our fellow travelers were happy that we had beaten the odds, proved the expert wrong, and got to tell him to his face. (One person was not amused, saying, "I would have sued his ass on the spot.")
I'm pretty certain that that pathologist learned as much that day as we did. By connecting a face, a personality, a person to that tiny "rat bite" of tissue on his microscope slide, he learned that his work exists in the context of real lives and that his words matter. This wouldn't mean that he should be overly optimistic in his reports, but it did mean that he had an obligation to be as precise, accurate, and honest as possible. It's a lesson that the radiologists in the above-mentioned study also seem to have learned.
All radiologists felt more empathy to the patients after seeing the photograph. The photographs revealed medical information such as suffering or physical signs of disease. Out of the 30 cases which were presented twice, in 80% the incidental findings were not reported when the photograph was omitted from the file. All radiologists involved reported that the addition of the photograph did not lengthen the duration of the examination, however did render the interpretation more meticulous. All recommended adopting this idea to routine practice.
The Times article also implied that attaching a photo could have a similar effect on "pathologists and other doctors who rarely have contact with patients."
This reminded me of something that happened not long after Jane was first diagnosed with her brain tumor back in 1998. Our monthly support group at UC Davis Medical Center followed a format in which we'd alternate between open discussion one month (we called it "sharing") and a guest speaker the next. One month, the neuro-pathologist who had prepared Jane's initial pathology report -- a report that was quite dire in its prognosis -- was to be the speaker. (I'm embarrassed to admit I don't recall his name, but I remember that he looked like a guy who spent his days in a dark room performing experiments and looking through microscopes -- pale, rumpled, hunched.) We listened to his presentation, and learned a lot about how brain tumors were identified and classified. After the talk, Jane approached him, pathology report in hand.
Never a shrinking violet, she asked him to read and autograph the report. He was startled but polite; he looked at the report, looked at a very healthy and alert Jane, and said, "Clearly, I didn't know what the hell I was talking about." A huge smile broke across his face, and he autographed the report with a flourish.
We related this story a few times over the years, and the reaction was almost always the same. Our fellow travelers were happy that we had beaten the odds, proved the expert wrong, and got to tell him to his face. (One person was not amused, saying, "I would have sued his ass on the spot.")
I'm pretty certain that that pathologist learned as much that day as we did. By connecting a face, a personality, a person to that tiny "rat bite" of tissue on his microscope slide, he learned that his work exists in the context of real lives and that his words matter. This wouldn't mean that he should be overly optimistic in his reports, but it did mean that he had an obligation to be as precise, accurate, and honest as possible. It's a lesson that the radiologists in the above-mentioned study also seem to have learned.
Labels: brain tumor, health, Jane, medicine, news, people, personal history, science, work
Thursday, January 22, 2009
Birthday Wishes
Today would have been Jane's 47th birthday.
She's on my mind every day, but moreso today. That's obvious, and intentional.
I spent the morning matting and framing three of her linoleum block prints. They're among my favorites of her artworks: one resembles redwood bark, one describes a redwood frond, and one shows a redwood tree. She loved redwoods, to the point of naming her company Studio Sempervirens. The prints, particularly the image of the full tree from below, are rich and evocative. I cut three windows in a single mat and mounted the prints vertically. The photo below is glary, but you get the idea; come by and see them up close sometime.
It was good to look carefully at something she had seen, handle something she had made, and enhance a beautiful piece of art she had created.
In the afternoon I headed for Jane's niche at Mountain View Cemetery in Oakland. (Visits were also paid to Piedmont Springs and Fenton's.) I freshened the flowers and ate a late lunch. My tradition has become to have sushi and beer when I visit. While I was there, a couple came through with a dog on a leash to visit a gravesite. My thoughts turned to Delta, who regularly accompanied me to Mountain View. Followers of the Castro Valley Boulevardier know that I had to let her go over the weekend when virulent abdominal cancer returned just six weeks after its initial appearance and resection.
It's been a big week. Between Martin Luther King Day, the inauguration, Jane's birthday, Delta's death, and more, I'm pretty well spent.
She's on my mind every day, but moreso today. That's obvious, and intentional.
I spent the morning matting and framing three of her linoleum block prints. They're among my favorites of her artworks: one resembles redwood bark, one describes a redwood frond, and one shows a redwood tree. She loved redwoods, to the point of naming her company Studio Sempervirens. The prints, particularly the image of the full tree from below, are rich and evocative. I cut three windows in a single mat and mounted the prints vertically. The photo below is glary, but you get the idea; come by and see them up close sometime.
It was good to look carefully at something she had seen, handle something she had made, and enhance a beautiful piece of art she had created.
In the afternoon I headed for Jane's niche at Mountain View Cemetery in Oakland. (Visits were also paid to Piedmont Springs and Fenton's.) I freshened the flowers and ate a late lunch. My tradition has become to have sushi and beer when I visit. While I was there, a couple came through with a dog on a leash to visit a gravesite. My thoughts turned to Delta, who regularly accompanied me to Mountain View. Followers of the Castro Valley Boulevardier know that I had to let her go over the weekend when virulent abdominal cancer returned just six weeks after its initial appearance and resection.
It's been a big week. Between Martin Luther King Day, the inauguration, Jane's birthday, Delta's death, and more, I'm pretty well spent.
Labels: Jane, news, personal history
Monday, December 22, 2008
2008 Christmas Letter
Holiday greetings. This is my experiment in a Green Christmas--some of you received reused cards, and I'm publishing my Christmas missive on the Internet rather than sending out another piece of paper to toss. (You can click on any picture for a larger view.) We’ll see how it works.
I’m still self-employed as a writer (business continues to be good, I’m glad to report), singing in the San Francisco Bay Area Chamber Choir and playing baritone sax in the Castro Valley Community Band. This fall I joined a small new vocal ensemble (11 people) that specializes in Renaissance motets. I do a little writing for fun (and garnered a bit of local attention for doing so) and stay physically active.
I rang in the New Year on a beach in Mexico. I visited Las Bocas (don’t look for it on a map--you won’t find it) with my band friends Kathy and Dave for a week; I spent the time helping with projects around their house, beachcombing, reading, and discovering how much of my high school Spanish I could recall. (Quite a bit, it turns out.) It was beautiful but surprisingly cold. I drove to Las Bocas with K&D, but for my return trip I took a bus to Phoenix (much more of an adventure than anticipated, because of a dumb mistake on our part) and a plane to the Bay Area. On the way home I visited in Phoenix with Carol, a choir friend and retired counselor from Hayward High.
New Year's Beach Bonfire with Dave. (Kathy's behind the camera.)
In April I traveled to China with a Hayward Chamber of Commerce junket with my former Sunset colleague Alan. We went to Beijing, Shanghai, and a few smaller cities (as in fewer than a zillion people). We saw some of the Olympic structures before they were completed, took in the legendary smog, ate some shockingly bad food, and were encouraged to shop, shop, shop. Our best experiences came when we managed to slip away from the group and explore on our own.
On The Not-So-Great Wall with Alan.
Also in April, I spent my 47th birthday in Los Angeles visiting with yoga friends Paul W. and Adelaide, lifelong friend Paul R., former Sunset colleague Matt and his wife Becky, my college pal Tom, and online correspondent (and maybe distant cousin) Joanna. I took in a Dodgers game (thanks for the tickets, 'Teo), ate some fine meals, saw some sights, and generally basked in the kind attention of dear people.
We ate how many Dodger Dogs?
Also, note that I wore blue and left my Giants cap at home.
For the better part of the year--literally and figuratively--I’ve dated a charming woman named Angela. She’s a former colleague, a fellow widowed person, and a joy to be with. She and I took an early-Summer trip to the American South--specifically, Nashville, Memphis, Muscle Shoals (AL), and the Natchez Trace. The journey brimmed with spontaneous discoveries, surprising beauty, delicious food, and friendly folks.
On the porch at Graceland with Angela.
Later in the summer we Sandsmarks had our annual houseboat trip on Lake Shasta. In spite of some challenges--low water levels, high gas prices, and Nicole getting sick--the trip was a chance to hang out with the family (all the nieces and nephews came), sleep, and read. (Those are the choices if, like me, you don’t play Guitar Hero.) Paul and Mike helped me make BBQ pizza for dinner one night.
Houseboating is hard work.
I marked the anniversary of Jane’s death with a solo road trip to San Luis Obispo and Santa Barbara. I visited some of our favorite places and attended the Labor Day Yoga Retreat at the White Lotus Foundation. The folks at WLF were instrumental in Jane’s well-being--and mine--during the nine years she was ill, and WLF was the right place to be for this important occasion.
The White Lotus Swimming Hole.
The year wrapped up with Mike, Carol, Nicole and Jenni visiting in early December. (Michelle’s in college in Hawaii, poor dear.) We celebrated Mike’s and Linda’s birthdays with lunch for 16 here at Outlook Court. I took the opportunity to give them both some of their own childhood toys out of the attic. There’s a lot more cleaning to do in this old house, but fortunately there’s no rush to do it.
December Birthdays.
I had one other bit of adventure at the end of the year: Delta (the hound) collapsed on a routine morning walk; a veterinary exam showed she had a large tumor on her spleen that had ruptured. Her spleen was removed (don’t ask how much that cost) and while she was under she had a cyst removed from a hind leg. She’s recovering well, but the spleen tumor proved to be malignant; the prognosis isn’t great, but for now she’s comfortable and happy.
The Spleenless Wonder Dog.
And given all the turmoil in the world—particularly in the economy—comfortable and happy isn’t bad. I wish you all a peaceful, prosperous 2009.
I’m still self-employed as a writer (business continues to be good, I’m glad to report), singing in the San Francisco Bay Area Chamber Choir and playing baritone sax in the Castro Valley Community Band. This fall I joined a small new vocal ensemble (11 people) that specializes in Renaissance motets. I do a little writing for fun (and garnered a bit of local attention for doing so) and stay physically active.
I rang in the New Year on a beach in Mexico. I visited Las Bocas (don’t look for it on a map--you won’t find it) with my band friends Kathy and Dave for a week; I spent the time helping with projects around their house, beachcombing, reading, and discovering how much of my high school Spanish I could recall. (Quite a bit, it turns out.) It was beautiful but surprisingly cold. I drove to Las Bocas with K&D, but for my return trip I took a bus to Phoenix (much more of an adventure than anticipated, because of a dumb mistake on our part) and a plane to the Bay Area. On the way home I visited in Phoenix with Carol, a choir friend and retired counselor from Hayward High.
In April I traveled to China with a Hayward Chamber of Commerce junket with my former Sunset colleague Alan. We went to Beijing, Shanghai, and a few smaller cities (as in fewer than a zillion people). We saw some of the Olympic structures before they were completed, took in the legendary smog, ate some shockingly bad food, and were encouraged to shop, shop, shop. Our best experiences came when we managed to slip away from the group and explore on our own.
Also in April, I spent my 47th birthday in Los Angeles visiting with yoga friends Paul W. and Adelaide, lifelong friend Paul R., former Sunset colleague Matt and his wife Becky, my college pal Tom, and online correspondent (and maybe distant cousin) Joanna. I took in a Dodgers game (thanks for the tickets, 'Teo), ate some fine meals, saw some sights, and generally basked in the kind attention of dear people.
Also, note that I wore blue and left my Giants cap at home.
For the better part of the year--literally and figuratively--I’ve dated a charming woman named Angela. She’s a former colleague, a fellow widowed person, and a joy to be with. She and I took an early-Summer trip to the American South--specifically, Nashville, Memphis, Muscle Shoals (AL), and the Natchez Trace. The journey brimmed with spontaneous discoveries, surprising beauty, delicious food, and friendly folks.
Later in the summer we Sandsmarks had our annual houseboat trip on Lake Shasta. In spite of some challenges--low water levels, high gas prices, and Nicole getting sick--the trip was a chance to hang out with the family (all the nieces and nephews came), sleep, and read. (Those are the choices if, like me, you don’t play Guitar Hero.) Paul and Mike helped me make BBQ pizza for dinner one night.
I marked the anniversary of Jane’s death with a solo road trip to San Luis Obispo and Santa Barbara. I visited some of our favorite places and attended the Labor Day Yoga Retreat at the White Lotus Foundation. The folks at WLF were instrumental in Jane’s well-being--and mine--during the nine years she was ill, and WLF was the right place to be for this important occasion.
The White Lotus Swimming Hole.
The year wrapped up with Mike, Carol, Nicole and Jenni visiting in early December. (Michelle’s in college in Hawaii, poor dear.) We celebrated Mike’s and Linda’s birthdays with lunch for 16 here at Outlook Court. I took the opportunity to give them both some of their own childhood toys out of the attic. There’s a lot more cleaning to do in this old house, but fortunately there’s no rush to do it.
I had one other bit of adventure at the end of the year: Delta (the hound) collapsed on a routine morning walk; a veterinary exam showed she had a large tumor on her spleen that had ruptured. Her spleen was removed (don’t ask how much that cost) and while she was under she had a cyst removed from a hind leg. She’s recovering well, but the spleen tumor proved to be malignant; the prognosis isn’t great, but for now she’s comfortable and happy.
And given all the turmoil in the world—particularly in the economy—comfortable and happy isn’t bad. I wish you all a peaceful, prosperous 2009.
Labels: friends, Jane, personal history
Monday, December 01, 2008
Patient-led Drug Trials
An article by Marcus Wohlsen appeared on the AP over the weekend, regarding ALS patients who are conducting their own clinical trial using lithium. A snippet:
I can certainly relate to the desire to speed up treatment plans. It's part of the need that patients with life-threatening illnesses have to take some control of their situation amid circumstances that feel hopeless. Others might look to nutrition, natural remedies, spirituality, etc. Personally (and quite unscientifically), I think it all helps, because I believe that hopelessness is poisonous.
Wohlsen's article also reminded me of the Virtual Trial being conducted by the Musella Foundation. The foundation deserves a plug here; I hope you'll follow the link to read about the Virtual Trial and the other good work the Musella Foundation does.
P.S. The AP link above will expire on January 1, 2009.
Dozens of ALS patients are testing treatments on their own without waiting on the slow pace of medical research. They are part of an emerging group of patients willing to share intimate health details on the Web in hopes of making their own medical discoveries.
I can certainly relate to the desire to speed up treatment plans. It's part of the need that patients with life-threatening illnesses have to take some control of their situation amid circumstances that feel hopeless. Others might look to nutrition, natural remedies, spirituality, etc. Personally (and quite unscientifically), I think it all helps, because I believe that hopelessness is poisonous.
Wohlsen's article also reminded me of the Virtual Trial being conducted by the Musella Foundation. The foundation deserves a plug here; I hope you'll follow the link to read about the Virtual Trial and the other good work the Musella Foundation does.
P.S. The AP link above will expire on January 1, 2009.
Labels: brain tumor, faith, health, Internet, Jane, medicine, psychology, science, technology
Sunday, November 30, 2008
Brain Tumor News from Seattle
Dr. Greg Foltz at Swedish Medical Center in Seattle is doing some interesting work around genetic mapping of brain tumors. A thorough article from the Seattle Times (reprinted by PhysOrg.com) talks about how he's approaching the disease in a number of creative ways. Some big guns (including Mitchel Berger, Jane's surgeon at UCSF, and Henry Friedman of Duke) are quoted in the article. A snippet:
The article also says that Dr. Foltz gives all of his patients his cell phone number, which is pretty cool; brain surgeons can be kind of aloof. The article's well worth a read. Maybe we Norwegians and the Swedes can get along after all.
Foltz and his colleagues genetically map each tumor they remove or biopsy, examining 30,000 genes to determine which are switched off or on. The pattern can reveal genetic glitches responsible for a specific cancer's runaway growth. Such mapping is done at major brain-cancer centers for select patients such as Sen. Edward Kennedy, D-Mass., recently diagnosed with brain cancer.
Foltz does it for every patient, free of charge.
The article also says that Dr. Foltz gives all of his patients his cell phone number, which is pretty cool; brain surgeons can be kind of aloof. The article's well worth a read. Maybe we Norwegians and the Swedes can get along after all.
Labels: brain tumor, health, Jane, medicine, neuroscience, technology
Friday, October 24, 2008
Golfer Seve Ballesteros' brain tumor
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.
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
Thursday, October 09, 2008
Voter Registration
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.)
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
Monday, June 02, 2008
Senator Kennedy's Surgery
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.
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
Tuesday, May 20, 2008
Ted Kennedy Brain Tumor Coverage
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.)
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
Wednesday, May 14, 2008
Mountain View (Cemetery) People
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.
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
Friday, May 09, 2008
Brain chemistry, gliomas, and neurodegenerative disease
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.
The full article from Physorg.com is here.
[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
Friday, March 21, 2008
NBTF Angel Adventure - May 3, 2008
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
Friday, February 08, 2008
Brain Tumor Vaccine Trial
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.
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
Friday, January 11, 2008
Cross-Post: Niche Dedication
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
Saturday, December 08, 2007
Old Medications
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.
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
