Sleep Over Camp

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

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)

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!

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!

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

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

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

Wicked!

So, first of all...happy to report that so far I'm tolerating the weaning of the steroids with no problems at all. In fact, I'm feeling distinctly better: better mental clarity, fewer hypoglycemic moments (and not as badly hypoglycemic), and no return of the prior scary neurological symptoms. So hooray, hooray. Could not be happier. I think the plan right now is that they'll be reducing the radiation treatment in a week, so that's great news, too.

Feeling better couldn't have happened at a better time: we're heading to The City tonight -- we being me, Dani, and Kirk, with my sister and brother-in-law, who arranged all this -- to see Wicked, which I've wanted to see since it first arrived in SF several years back. Big night: we're even doing dinner beforehand. (But we'll also be sneaking "quiet" non-messy snacks into the theater for me, since making it 3 hours without feeding the food beast is not practical. Shhh...don't tell anyone.)

So that's it -- just wanted to do a quick update so you'd know I'm feeling good and the steroid weaning is going well. Love you guys. /ab

Mid-Week Update

Just got off the phone with Alison and Kirk. She had a really GOOD day. Steriod wean started and so far, so good. Exciting day tomorrow, they are going to see WICKED with Deb, Whit and Dani. Good times for all! Alison sends her thanks for all the ongoing support:)

The fun never stops

Every day seems to bring new challenges. I have to say that despite the challenges, my health overall still seems good and I do think I'm seeing improvement in my mental clarity as I'm mid-way thru week four of radiation and chemo.

Unfortunately, two new side effects to my treatment have decided to grace me with their presence. I just can't seem to catch a break here. The first side effect I mentioned on a previous blog: I get all hypoglycemic/shaky-feeling at different times during the day despite my vigilance in maintaining what should be adequate calorie intake. Most people taking high dose decadron (steroids)get hyperglycemic and have to watch carefully to be sure their blood sugar doesn't go to high. But me...not so much. Nope, I'm having to fight to keep my blood sugar from plummeting. I mean...what's with that? Fortunately, my radiology oncologist decided that we can attempt to taper the steroids, so yesterday decreased my dose from 16 mg to 12 mg/day. The big question here -- and it's a big question -- is whether I can tolerate weaning the steroids. If any of my neurological symptoms reappear -- and my doctor's not going to allow any wiggle room for this -- then I go right back up to my maintenance dose. So keep your fingers crossed on my behalf.

The other side effect is essentially SIADH, which (for those non-medical people reading the blog) basically means that I'm releasing too much of a hormone that leads to low sodium in your body. So...I'm thirsty all the time but really shouldn't be drinking a lot of water, because that can lead to fluid imbalances and such. This little issue is less problematic for me, really, than the hypoglycemia thing, but it's just one more annoyance and frustration to deal with.

My radiologist is also talking about having me do a repeat MRI in the next few days to see what kind of progress the treatment is having in shrinking the tumor. If the tumor IS getting smaller, then they can "cone down" -- that is, reduce -- the focus of the radiation beams, which would be great for many reasons. Again, keep those fingers crossed.

I've had a number of recent emails from my friends about not having a mailing address for me, so thought I'd slip that in here. I do so appreciate the cards and notes I've gotten from so many of you. They inevitably make me cry (which I don't see as a bad thing...emotional release is GOOD), and the contact from the "real world" helps keep me feeling connected. So if you feel like writing: 51 Stevenson Ave., Berkeley, CA 94708 is how to reach me.

Many, many people have contacted me and my family, saying you'd like to be able to help us through our challenging time in whatever way you can. It's taken a while to be able to get things stabilized enough to even think about how we can take you up on your offers. It's not an easy thing, in some ways, to ask for help, even when that help is so generously offered. But we're thinking about it and will hope to have some thoughts on that in a near-future post. I just want to say again how much I appreciate the way you've reached out to us at such a spectacularly challenging time.

My love and gratitude to you all. /ab

Taco Salad

Yesterday Jon and I brought dinner up to Alison and Kirk (Taco Salad). We had a lovely evening. Alison, although tired, is doing well and is so brave/strong. She has such positive energy and faces each challenge with grace. She is so appreciative of all the love and support she is receiving from all of you. Kirk continues to be hero of the day, providing such loving care and ongoing advocacy for the woman he loves! We are going up tomorrow (Sunday) to work on a small "fix it" project and to spend a little time with Alison. Stay tuned.

Calories

So today brought a whole new kind of adventure. My day started early, with a radiation appointment down the hill, and I apparently didn't fulfill my calorie requirements before leaving the house. My calorie requirements on steroids are significant --I pretty much need to eat my way through the day. So off and on through the the whole day since I got back from my treatment, I've been in a sort of frenetic, panicky eating frenzy and I still don't feel like I'm on top of the calorie deficit. I've never been a person who lives to eat -- in fact, I almost resented the time food took up in my life (weird, huh?) so this is a very strange situation to find myself in. Anyway, important lesson learned.

Jon and Christa (brother and sister-in-law) are coming over tonight for dinner, as I believe I mentioned in a previous post. So glad I finally get to see them -- it's been too long since our last visit and I've really missed them.

My daughter, Dani, came up for a brief visit, and Jen (Like-a-Daughter) joined her here last night as well. They always brighten our day when they're here. Silly, silly girls...NOT laughing is impossible when they're around. They headed up to Tahoe at the crack-o-dawn this morning and I'm hoping they're having some good snowboarding time. We'll see Dani again Sunday, briefly. Can't wait.

My radiation and chemo treatments are definitely making me tired but, other than fatigue, I've been feeling pretty good and think the treatments are having the desired effect on the tumor. This is the end of week three. Three more to go for this first round of treatment.

With love and appreciation for your concern and support... /ab

Short but sweet

Actually, that is our Alison, isn't it? I just wanted to put something up to let folks know that Al is hanging in there. She had some headaches this week, which seem to have turned out to be migraine. Talk about confusing - how is she supposed to know it isn't a headache related to the dang tumor/radiation/medications? I gues when they respond to migraine meds, that's how a person makes the diagnosis. Wow. Anyway, she and Kirk sorted through this, and sounds like the headaches are under control again.

Other than that, all sounds fine, with the usual glitches and bumps (like a new allergy to hummus, because really, how can a chick pea be anything but a good thing?) but nothing past what can be borne. She will post something in her own 'voice' soon, never fear, so stay tuned. - Deborah

Having a really good day

So, after having had a particularly rough week or so, I'm happy to say I'm having a really good day, with better energy level and emotional state than I've had since my surgery. Not sure why; don't care; just happy to be here now.

It's been a surreal experience, to say the least. Having part of your brain cut out kind of changes how you experience the world. Everything looks and feels pretty different. Plus chemo and radiation do a number on me, too. Although I do think some of the recent changes I'm feeling are getting me closer to who I used to be/how my mind works. Maybe wishful thinking, but I do think I'm having the feeling of familiar thought processes, etc. It's just tough to have so little sense of control over my life...much of the time it feels like I'm a five-year old, needing an adult to tell me when it's time to do things, getting those things for me, monitoring my activities. For anyone who's been an independent, competent adult, well...kind of a big change to embrace. Don't like it but glad to at least have the chance, you know?

The practical aspects of going through this are in some ways more daunting right now than the medical. Kirk and I continue to work through the massive legal/financial / medical issues...you can't believe how complex this stuff is (well, yes, you probably can) and how many iterations of the same damned documents are required to get the thing right, so that I'm protected and my daughter is protected. So for those of you who don't have your legal stuff in order yet, take my advice and call your attorneys or whomever and get this stuff started while your health is good. It takes longer than you'd think. This is NOT how I should be spending my time right now. But we're nearly done and then I can just focus on sending this fucking tumor to hell and healing as best I can.

Kirk and I are hoping to have an evening with my brother and sister-in-law (Jon and Christa) who were in Palm Springs (my home town) over the holidays, so we've missed having time with them. My daughter, Dani, will be up Wednesday to spend a couple days with us in Berkeley. Can't wait. Her best buddy, Jen (we call her "Like-a-Daughter") will join us here Thursday night so that they can head to Tahoe at the butt-crack-o-dawn on Friday for an overnight ski trip...with Dani's newish-beau, Matt, and some other friends. (And I'd just like to say, big thumbs up on the new beau...) And then another visit with Dani before she heads back down to her home in Monterey. So lots for me to look forward to in this next week. Whoo-whoo!

Okay...think I've done quite well here! Thanks so much for all the blog posts, emails, cards and letters and loving, positive thoughts you've sent me. They are truly a gift and so appreciated.

Love and much positive thought... /ab

And 2010 Begins

First off, apologies for the lapse in posting news. I have not kidnapped Alison and Kirk in Aptos, much as I would have liked to. They left here this afternoon to go back home to Berkeley in preparation for Week 3 of therapy, the first week that will consist of trips to radiation therapy on five days a week. Eight treatments down, 22 to go.

We had a wonderful long weekend with Alison and Kirk. Overall, her thinking is sharper and her headaches are much, much better. Kirk tells us that she has gone 3 full days without taking narcotics for her headache, which is the first time that has happened since well before surgery. On the down side, the fatigue that comes with this treatment is truly profound; she will have a good hour or so before she winds down. Then she (we) try to figure out if it the fatigue alone, or the way she burns through the calories and it is time to eat again. She is napping throughout the day. It seems that if we were on a 4-hour cycle, she would do great. The nights are too long to sleep through, and the days are too long to stay awake through. Hmmm. And the food thing is a delicate dance, too - too much food and it's heartburn, not enough and the hypoglycemic crash comes surprisingly quickly. So she has a lot to keep on top of. Add a few wild emotional swings (thank you Mr. Steroid) and you get the picture of each day being its own little roller-coaster. But she has a crack support team: Kirk keeping close track of her medications, spirits and energy level; great visits of love and support from her daughter Dani and Dani's beau, Matt; and me and Whit keeping a steady stream of food, drink and clean laundry available. We hope that she and Kirk got to rest a bit and change up the routine from her Berkeley one, just for grins. She was able to walk each day, and twice on one day, and we see her physical strength returning. She is looking forward to working with her Physical Therapist to devise some routines she can do at home on days that are too rainy for walking. It is great to see her striding along the path with her steadfast determination. She was able to take walks on/at the beach today and New Years Day, and we all know that THAT is good medicine. On New Years Day we played a silly game we like called Apples To Apples where the object is to match some random noun-type items to a given adjective/description, and I am not kidding you: Alison totally kicked our butts at matching what the other person would judge as a closest definition. Meaning, she is fully in the Game. Then it's time to nap.

For those fans who like to follow along, I have succeeded in getting them hooked on the old series "Firefly" - check it out on Netflix and watch it your jammies with Alison in your thoughts. And one her peeps usually reads a chapter of Harry Potter to her night to relax her into sleep.

So that's the scoop from our start to 2010. I am wishing Alison long stretches of good and restoring sleep and continued strengthening (among a long list of other wishes), and wishing all of you our very best for a year of good health and blessings in all the places you dwell. Thank you for keeping track on the blog and sending Alison your love.
Deborah