Yesterday, Jon and I transported Alison to a fine "sleep over camp" in the Aptos Forest for a weekend adventure (sister Deborah's house). We braved the rain and fog to arrive at the best camp ever, complete with a warm gourmet meal waiting to be devoured (we did our job). Having arrived late and waiting for D and Whit to come home from their airport shuttle experience (Alison is not a package you just drop off!), we also had a "sleep over" (and stayed up way to late being chatty campers)! Alison has started on a ketogenic diet and already feels that it is helping -- yeah! Although very tired, she is "game" for all the camp activities including walks, egg ranch visits (yes the chicks perform to "In the Mood", what a hoot!), and long chats with sister D and daughter Dani. Good times for all except poor Kirk who stayed home to complete required projects :(
For those having any trouble commenting on blog, Jon can reached at jbronstein2000@gmail.com.
Love to all,
cj
Saturday, January 30, 2010
Friday, January 29, 2010
Ketogenic diet
Alison is almost done with the radiation, which is a darn good thing on so many levels. She says the mask that fits on her face to make sure the landmarks stay consistent is just getting unbearably tight. So after today, only 3 more sessions to go!
She will have follow-up lab work to see how her platelets are doing - they should be coming back up. Her platelet count determines whether she can continue the Temodar or not, both in the immediate and near future (low platelets = no Temodar).
The big breaking news is that she and Kirk met with a nutritionist that works with the oncology group and got some great suggestions. The main change is that she will be trying a "ketogenic diet". Those of us in the health field know this as a diet that is often used for people (especially children) with seizures, and it sounds like the nutritionist has reason to pitch this diet for folks with brain tumors as well (see the links below). The diet consists of something like 3 or 4 parts fat to each part protein, and very little carbohydrate. A less restrictive version could be considered an Atkins diet but with much less sugar. The idea is that the body burns fat for energy and makes ketones (not dangerous in this sense). Normal cells can use either glucose or ketones for energy; the faster growing tumor cells only use glucose. So, the hope is that the diet will even out her hunger rages/shakes/hypoglycemia sensation AND starve the blood-sucking tumor cells out of existence. Going for both symptom control and improved survival, this is a great thing to try. AND can we talk about eating high fats as a diet prescription? Most of us only dream of such a thing...
http://www.ncbi.nlm.nih.gov/pubmed/17313687 -for the scholarly article
http://www.time.com/time/health/article/0,8599,1662484,00.html -for a nice "lay" atricle
So...she is going to try this. Which means I am going to try this as she is coming to Aptos for the weekend! I am VERY excited to see her and to give this new therapy a try. We'll keep you posted. Love to all, Deborah
(and remember that if you are having trouble posting, please contact me at whit@got.net. Pretty soon I think brother Jon will take over Blog maintenance, but I don't which email to give you for him yet)
She will have follow-up lab work to see how her platelets are doing - they should be coming back up. Her platelet count determines whether she can continue the Temodar or not, both in the immediate and near future (low platelets = no Temodar).
The big breaking news is that she and Kirk met with a nutritionist that works with the oncology group and got some great suggestions. The main change is that she will be trying a "ketogenic diet". Those of us in the health field know this as a diet that is often used for people (especially children) with seizures, and it sounds like the nutritionist has reason to pitch this diet for folks with brain tumors as well (see the links below). The diet consists of something like 3 or 4 parts fat to each part protein, and very little carbohydrate. A less restrictive version could be considered an Atkins diet but with much less sugar. The idea is that the body burns fat for energy and makes ketones (not dangerous in this sense). Normal cells can use either glucose or ketones for energy; the faster growing tumor cells only use glucose. So, the hope is that the diet will even out her hunger rages/shakes/hypoglycemia sensation AND starve the blood-sucking tumor cells out of existence. Going for both symptom control and improved survival, this is a great thing to try. AND can we talk about eating high fats as a diet prescription? Most of us only dream of such a thing...
http://www.ncbi.nlm.nih.gov/pubmed/17313687 -for the scholarly article
http://www.time.com/time/health/article/0,8599,1662484,00.html -for a nice "lay" atricle
So...she is going to try this. Which means I am going to try this as she is coming to Aptos for the weekend! I am VERY excited to see her and to give this new therapy a try. We'll keep you posted. Love to all, Deborah
(and remember that if you are having trouble posting, please contact me at whit@got.net. Pretty soon I think brother Jon will take over Blog maintenance, but I don't which email to give you for him yet)
Tuesday, January 26, 2010
Meds and labs
Alison saw her main radiation oncologist today. They are trying a new regimen of medication to control the hyper-hunger/shaky thing - actually, Ativan, which is kind of a miracle drug in the oncology world. Heck, she really doesn't drink (alcohol) these days, so this is a nice option for taking the edge off. She had good luck with this yesterday; it helped her rest well, get up with good energy to do a bit of 'organizing' of some of her stuff, which pleased her. I think she should put it in a martini glass and have it as the sun goes down. We can toast her from whereever we are.
Her platelet count was a bit low (platelets are involved in blood clotting processes) - not so low as to be dangerous, but her physician was careful and is having her hold off on the medicine until it climbs back up. It's a known side effect of the Temodar, so she'll monitor her platelet count and get a little break from that medicine.
That's it for now. She seems to be in reasonable spirits, all things considered. She is amazing!
Her platelet count was a bit low (platelets are involved in blood clotting processes) - not so low as to be dangerous, but her physician was careful and is having her hold off on the medicine until it climbs back up. It's a known side effect of the Temodar, so she'll monitor her platelet count and get a little break from that medicine.
That's it for now. She seems to be in reasonable spirits, all things considered. She is amazing!
Sunday, January 24, 2010
A trip to the ER
Hi all, Alison has had a hard week, mostly because of the raging hunger, shakiness and the feeling that she likens to intense 'hypoglycemia'. It is a compelling and uncomfortable state, so that she feels driven to keep eating to stave off the awful sensations. It got really bad Saturday night, and she ended up in the ER with nausea, confusion, disorientation. In fact, her blood sugars were not low (with the steroids, they are actually high) which doesn't explain why she gets this intense sense of dropping blood sugar. But in any case and for no particular reason, the symptoms resolved on their own, and she and Kirk got back home by 5 a.m. today (early Sunday). But it took the whole night there to get this sorted out, so they are understandably pooped out today.
Today, she napped and felt more normal, though some of the shaky stuff and intense need for food was still there; but it sounds like it was a lot more manageable. She has her medical appointments tomorrow. Indeed, she starts Week 6 of treatment. Because of holidays in December and January, she will actually finish her "six weeks" of radiation at six and a half weeks. But that's just 10 days away, glory be!
Alison has told me that some folks are having trouble posting comments on the blog. I don't have a technical sense of this, but if you are unable to post something and want to send it me to post on your behalf, I am happy to do so while we try to get the Blog Mistress (Lara) to check on the settings and such. The home email is whit@got.net and if you can tell me enough of your name to make it clear to Alison who is sending the message (like a last name or initial for her work buddies where there are several of you with similar first names), I am happy to post a comment for you.
I wish you all good luck through our winter storms, may your trees stay standing and your power stay on!
Today, she napped and felt more normal, though some of the shaky stuff and intense need for food was still there; but it sounds like it was a lot more manageable. She has her medical appointments tomorrow. Indeed, she starts Week 6 of treatment. Because of holidays in December and January, she will actually finish her "six weeks" of radiation at six and a half weeks. But that's just 10 days away, glory be!
Alison has told me that some folks are having trouble posting comments on the blog. I don't have a technical sense of this, but if you are unable to post something and want to send it me to post on your behalf, I am happy to do so while we try to get the Blog Mistress (Lara) to check on the settings and such. The home email is whit@got.net and if you can tell me enough of your name to make it clear to Alison who is sending the message (like a last name or initial for her work buddies where there are several of you with similar first names), I am happy to post a comment for you.
I wish you all good luck through our winter storms, may your trees stay standing and your power stay on!
Wednesday, January 20, 2010
Rainy day update
Hi everyone, a wee update from telephone information...Alison is doing well, having had her lab and medical appointments yesterday, and the news is good. Her labs look good (within the expected range) and the problem with the low sodium level has resolved; this means that the mechanism that was out of whack in terms of water regulation is now re-set (as in: less thirsty = a billion less trips to the bathroom!). White cell counts and all that still in good range. AND, she gets to decrease her mega-steroid dose one more time. This means that the steroid (decadron)-induced side effects like insomnia, gigantic appetite, mood swings, should all continue to improve. And she says that so far, no change in headache, memory, etc, so the decadron taper is going well at this point. Since decadron is on board to control brain swelling, you can see how the green light to taper this means that her system is doing well, her swelling is less.
She told me a few days ago that all the strobing of lights that she had for so long on the right side are gone - we think it means there is less pressure in that part of the occipital lobe of the brain. The right-sided vision that she lost (right side out of both eyes is affected because the area that controls integration of right vision is in the occipital lobe) is a permanent loss, but she is adapting to that quite well.
She is still super-tired, but I think her rest periods are more productive, in that she can actually sleep. They are riding out the storm (as is the whole northern California area, I guess) and planning to stay snug and warm in their lair while the storm passes over. We wish her lovely naps and continued healing!
Love to all, - Deborah
She told me a few days ago that all the strobing of lights that she had for so long on the right side are gone - we think it means there is less pressure in that part of the occipital lobe of the brain. The right-sided vision that she lost (right side out of both eyes is affected because the area that controls integration of right vision is in the occipital lobe) is a permanent loss, but she is adapting to that quite well.
She is still super-tired, but I think her rest periods are more productive, in that she can actually sleep. They are riding out the storm (as is the whole northern California area, I guess) and planning to stay snug and warm in their lair while the storm passes over. We wish her lovely naps and continued healing!
Love to all, - Deborah
Sunday, January 17, 2010
Unbelievably tired
Over the past few days, I've become unbelievably tired. Physically exhausted, weak, in a way I've never experienced before. Can barely get up out of my chair. Did some online research and it seems like this is a "normal" sort of response to the radiation and chemo -- at least normal for some people. So you may be hearing less from me for a while as I'm going to try to focus on rest and nutrition and healing. I'll probably ask family members to keep you guys posted on the days when I just don't have it in me.
Other than the extreme fatigue, I actually feel better -- still no return of the neurological symptoms from the tumor -- and I do notice increased mental clarity. Just no freaking energy.
In my research this morning, I found a really great site that talks about this fatigue issue and thought I'd pass it on here for those of you who are interested. There's a lot of information, links leading to other great links. Probably more info than most of you need but lots there if you want it.
http://www.cancer.org/docroot/MIT/content/MIT_2_3X_Cancer-Related_Fatigue_Plagues_Many_Patients.asp
Okay...time for another nap/rest period. /ab
Other than the extreme fatigue, I actually feel better -- still no return of the neurological symptoms from the tumor -- and I do notice increased mental clarity. Just no freaking energy.
In my research this morning, I found a really great site that talks about this fatigue issue and thought I'd pass it on here for those of you who are interested. There's a lot of information, links leading to other great links. Probably more info than most of you need but lots there if you want it.
http://www.cancer.org/docroot/MIT/content/MIT_2_3X_Cancer-Related_Fatigue_Plagues_Many_Patients.asp
Okay...time for another nap/rest period. /ab
Saturday, January 16, 2010
I love my weekends -- especially 3-day weekends
Well, loved being able to crawl back into bed after my early-morning feeding of the food monster that lies within. He's an ugly, controlling beast who will not be denied. Bastard. (I'm enjoying the idea that I can take multiple naps today and tomorrow. Not that I sleep, but at least I feel more rested after my little naps.)
So...going to see Wicked in San Francisco Thursday night was just wonderful. Went to a fabulous dinner at Soluna beforehand (split a mac and cheese appetizer with my daughter that was so unbelievably good, you just can't imagine it). The play itself was magical and the performances phenomenal, especially the two leads. We were initially disappointed to see that one of the leads (Glinda) was played by an understudy but, really, there was no need to feel disappointed; she was fabulous. And Elphaba, the other lead was stunningly good. I mean, wow. If you enjoy musicals...don't miss this one.
More theater-going tomorrow. We're long-time Berkeley Rep subscribers and Sunday night is our next play. Sounds like it'll be a fun one -- "Aurelia's Oratorio," which sounds like it's a kind of one-woman Cirque du Soleil. I'm excited. And going to the theater...it's so nice to be able to have some feeling of normalcy in the midst of a truly not normal life experience.
Daughter Dani heads back to Monterey today :( but it's been nice to have her up here and spend some time with her. Classes start again for her in a week or so, so seeing her will be maybe a little more hit-and-miss...we'll have to work a little harder to get some visiting times in around her class schedule.
Not entirely clear about my treatment plan for next week but it sounds like my radiologist may at some point do an adjustment to my treatment so that the radiation beam gets narrowed to a smaller area of my brain -- which to me says that the treatment seems to be working. So that's exciting news. Keep your fingers crossed!
Okay, that's it for today.
Love you guys,
/ab
So...going to see Wicked in San Francisco Thursday night was just wonderful. Went to a fabulous dinner at Soluna beforehand (split a mac and cheese appetizer with my daughter that was so unbelievably good, you just can't imagine it). The play itself was magical and the performances phenomenal, especially the two leads. We were initially disappointed to see that one of the leads (Glinda) was played by an understudy but, really, there was no need to feel disappointed; she was fabulous. And Elphaba, the other lead was stunningly good. I mean, wow. If you enjoy musicals...don't miss this one.
More theater-going tomorrow. We're long-time Berkeley Rep subscribers and Sunday night is our next play. Sounds like it'll be a fun one -- "Aurelia's Oratorio," which sounds like it's a kind of one-woman Cirque du Soleil. I'm excited. And going to the theater...it's so nice to be able to have some feeling of normalcy in the midst of a truly not normal life experience.
Daughter Dani heads back to Monterey today :( but it's been nice to have her up here and spend some time with her. Classes start again for her in a week or so, so seeing her will be maybe a little more hit-and-miss...we'll have to work a little harder to get some visiting times in around her class schedule.
Not entirely clear about my treatment plan for next week but it sounds like my radiologist may at some point do an adjustment to my treatment so that the radiation beam gets narrowed to a smaller area of my brain -- which to me says that the treatment seems to be working. So that's exciting news. Keep your fingers crossed!
Okay, that's it for today.
Love you guys,
/ab
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