Wednesday, January 13, 2010
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
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
Saturday, January 9, 2010
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.
Friday, January 8, 2010
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
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
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
Tuesday, January 5, 2010
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
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
Sunday, January 3, 2010
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
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
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