Just wanted to do a quick blog note to let you know the current health issues and plan of action.
As I mentioned in my last blog, my recent MRI showed a new “spot” on my brain, in the area of the old tumor. Docs don’t really know what the spot is, so I’m going back into the hospital on January 3 for another surgery. Could be new tumor growth, could be necrotic tissue, could be several other things, but in the past three or four days I’ve developed some neuro symptoms (i.e., I was having trouble speaking, having clear thoughts, couldn’t find words, etc.) so I’m back up on 12 mg of Decadron a day. That blows, after being almost off the steroids entirely, but it’s what I need to do, so that’s what I’m doing.
I will have Kirk and Dani, and probably my siblings hanging with me at the hospital for the surgery and recuperation. I won’t be up for much communicating with the “outside world” for a while but expect my family will update the blog (and with more regularity than I’ve been doing lately).
If my health stays good over the next few days before the scheduled surgery, Kirk and I hope to meet up with Deborah and Whit (and maybe my incredibly sweet nephew, Andrew) and will go see our (if I do say so myself) very talented daughter sing at Monterey First Night (New Years Eve) with her wonderful partner-guitarist, Jesse. And go for dinner to a wonderful tapas restaurant that we discovered a couple of years ago. So that’s something to look forward to in the midst of all of this not so fun stuff happening in my life.
Okay, that’s it for now. I’ll get back on the blog as soon as I feel ready for the physical and mental challenge of it, and in the meanwhile, my family will be keeping information moving.
Love you guys and appreciate all your love and support.
/ab
Thursday, December 30, 2010
Saturday, December 11, 2010
Good News, Bad News
The good news and bad news are sort of entwined. Here’s the skinny: After being on the chemo drug Avastin and having ever-better MRIs over the past year, my most recent scan showed a small area (less than 1 cm in size) that was now more “prominent.”
My neuro-oncologist shared this scan with her fellow doctors on the “tumor board” at UCSF, and their feeling is that I should have another surgery to try to determine whether this IS in fact new tumor, or some sort of scar tissue or something else and, depending on what the tissue is, whether or not I will need to switch to a different type of chemo. (If this is new tumor growth, that would indicate the Avastin is no longer working and we need to move to a different type of chemo).
So now I’m scheduled for surgery on Jan. 3rd at UCSF with the same gifted eurosurgeon (Dr. Parsa) who did my original surgery. Happy New Year! Between now and then, I’m set to have two more MRIs, and if they don’t show any change, well, maybe, maybe we’ll call the whole thing off.
In the meantime, the doctors prefer I be off Avastin for 5-6 weeks before surgery (since Avastin can impede healing). This is a relief, as it means we have to wait for surgery until after the holidays, and I’ll get to spend this time celebrating with friends and family instead of spending a second year in a row in the hospital recuperating from surgery and missing out on all the holiday fun.
In theory, the surgery will be “easier” on me than the original surgery was (the doctors have a better idea of what they’re dealing with and there’s only one small area they need to excise). But … because this is the second surgery to my poor ol’ head and I’ve been on Avastin, they’ll need to bring in a plastic surgeon to ensure my surgical incision heals well and doesn’t dehisce.
We’re told to anticipate three nights in the hospital (oh joy), then I work on tapering the steroids, again, since they’ll be bumping up the Decadron dosage to fairly high levels to combat the inevitable brain swelling following them digging around in my head. Good times! This especially sucks since I was so close to being completely off steroids, and now I’ll be right back to where I was a year ago. So freaking frustrating I can’t begin to tell you.
Fortunately, I’ve got my usual wonderful “support team” who’s been with me throughout this odyssey and will be there for all the fun of this next go-around. I’m going to do another round of thanks/kudos before I sign off:
I’ve got my personal team of medical doctors: Brother-in-law, Whit (Whitopedia, as he’s known to us) came up to be with me and Kirk at UCSF for the medical and surgical consultations last Tuesday, serving as our personal “medical interpreter and researcher” … which was greatly appreciated since so much of what the doctors discussed with us was new information and related to the possibility of starting me on a new type of chemo that’s still in the research phase; and although sister Deborah couldn’t be with us for the appointment, she’s always checking in on the medical front to find out what we’re dealing with and feeding us questions to ask to help keep us on track. Brother and sister-in-law Jon and Christa are always, always there for us. They help us with everything from computer and Tivo tech support to hemming my pants (you can guess who’s responsible for what in that equation). And we’re frequent guests at their home where we’re fed yummy food and get some quality family time. (Although haven’t seen as much of them lately - which we will remedy soon, I hope.) My dad and his wife, Judy, stay in touch regularly from Palm Springs and while we don’t get to see much of them, the regular phone calls are a great source of support - to Kirk as much as to me, I
think. Dad and Judy are generous and kind and loving and always make us feel their support from way down in Palm Springs.
And speaking of Kirk: my incredible husband who is so amazing in his support of me and his strength in keeping things together as I fall apart (sometimes the emotional roller coaster is easier to handle than other times; this recent meeting with the UCSF docs was not easy newsto hear, as you can imagine.) Kirk has been my rock throughout this past year and although he (or anyone) can argue that this is what couples do for each other in times of difficulty, I can’t begin to imagine anyone being as patient, loving, and endlessly supportive as he has been over this messed-up year.
And, finally, my sweet Dani - and her best buddy (and our Like-a-Daughter), Jen. Dani has grown so much over this past year. She’s been a source of emotional support to me and to Kirk. She helps me keep fighting the good fight, and helps Kirk and me maintain our good cheer at times when we might not otherwise feel so cheery. I know it’s been a particularly hard year for her, especially since she would rather have spent more time with us here in Berkeley. We pushed her to stay in Monterey and focus on school, but I think it may have been harder for her than I realized at the time. She’s a tough little thing with so much strength and emotional resilience; I just can’t believe the way she’s making it through what must be a heartbreakingly difficult time for her. And our sweet Jen (LAD). She has been so good to us and her visits lighten our hearts with her silliness and upbeat nature. And then, you get the two girls together in the same room? Oh. My. God. These two take silly to a whole new level. And if laughter does help healing, I should do just fine fighting the tumor, with these girls keeping us belly-laughing regularly.
So. Just in case things get busy over the next weeks and I forget to say this to my wonderful family and friends, I want to say these little words of thanks to the people who are there for me, unfailingly: For everything you do for me; for all the kindness and support as I fight the f-ing tumor; for “having my back;” for loving me unconditionally and unstintingly … I am so lucky to have you all in my life.
Love to all, and Happy Holidays!
/ab
My neuro-oncologist shared this scan with her fellow doctors on the “tumor board” at UCSF, and their feeling is that I should have another surgery to try to determine whether this IS in fact new tumor, or some sort of scar tissue or something else and, depending on what the tissue is, whether or not I will need to switch to a different type of chemo. (If this is new tumor growth, that would indicate the Avastin is no longer working and we need to move to a different type of chemo).
So now I’m scheduled for surgery on Jan. 3rd at UCSF with the same gifted eurosurgeon (Dr. Parsa) who did my original surgery. Happy New Year! Between now and then, I’m set to have two more MRIs, and if they don’t show any change, well, maybe, maybe we’ll call the whole thing off.
In the meantime, the doctors prefer I be off Avastin for 5-6 weeks before surgery (since Avastin can impede healing). This is a relief, as it means we have to wait for surgery until after the holidays, and I’ll get to spend this time celebrating with friends and family instead of spending a second year in a row in the hospital recuperating from surgery and missing out on all the holiday fun.
In theory, the surgery will be “easier” on me than the original surgery was (the doctors have a better idea of what they’re dealing with and there’s only one small area they need to excise). But … because this is the second surgery to my poor ol’ head and I’ve been on Avastin, they’ll need to bring in a plastic surgeon to ensure my surgical incision heals well and doesn’t dehisce.
We’re told to anticipate three nights in the hospital (oh joy), then I work on tapering the steroids, again, since they’ll be bumping up the Decadron dosage to fairly high levels to combat the inevitable brain swelling following them digging around in my head. Good times! This especially sucks since I was so close to being completely off steroids, and now I’ll be right back to where I was a year ago. So freaking frustrating I can’t begin to tell you.
Fortunately, I’ve got my usual wonderful “support team” who’s been with me throughout this odyssey and will be there for all the fun of this next go-around. I’m going to do another round of thanks/kudos before I sign off:
I’ve got my personal team of medical doctors: Brother-in-law, Whit (Whitopedia, as he’s known to us) came up to be with me and Kirk at UCSF for the medical and surgical consultations last Tuesday, serving as our personal “medical interpreter and researcher” … which was greatly appreciated since so much of what the doctors discussed with us was new information and related to the possibility of starting me on a new type of chemo that’s still in the research phase; and although sister Deborah couldn’t be with us for the appointment, she’s always checking in on the medical front to find out what we’re dealing with and feeding us questions to ask to help keep us on track. Brother and sister-in-law Jon and Christa are always, always there for us. They help us with everything from computer and Tivo tech support to hemming my pants (you can guess who’s responsible for what in that equation). And we’re frequent guests at their home where we’re fed yummy food and get some quality family time. (Although haven’t seen as much of them lately - which we will remedy soon, I hope.) My dad and his wife, Judy, stay in touch regularly from Palm Springs and while we don’t get to see much of them, the regular phone calls are a great source of support - to Kirk as much as to me, I
think. Dad and Judy are generous and kind and loving and always make us feel their support from way down in Palm Springs.
And speaking of Kirk: my incredible husband who is so amazing in his support of me and his strength in keeping things together as I fall apart (sometimes the emotional roller coaster is easier to handle than other times; this recent meeting with the UCSF docs was not easy newsto hear, as you can imagine.) Kirk has been my rock throughout this past year and although he (or anyone) can argue that this is what couples do for each other in times of difficulty, I can’t begin to imagine anyone being as patient, loving, and endlessly supportive as he has been over this messed-up year.
And, finally, my sweet Dani - and her best buddy (and our Like-a-Daughter), Jen. Dani has grown so much over this past year. She’s been a source of emotional support to me and to Kirk. She helps me keep fighting the good fight, and helps Kirk and me maintain our good cheer at times when we might not otherwise feel so cheery. I know it’s been a particularly hard year for her, especially since she would rather have spent more time with us here in Berkeley. We pushed her to stay in Monterey and focus on school, but I think it may have been harder for her than I realized at the time. She’s a tough little thing with so much strength and emotional resilience; I just can’t believe the way she’s making it through what must be a heartbreakingly difficult time for her. And our sweet Jen (LAD). She has been so good to us and her visits lighten our hearts with her silliness and upbeat nature. And then, you get the two girls together in the same room? Oh. My. God. These two take silly to a whole new level. And if laughter does help healing, I should do just fine fighting the tumor, with these girls keeping us belly-laughing regularly.
So. Just in case things get busy over the next weeks and I forget to say this to my wonderful family and friends, I want to say these little words of thanks to the people who are there for me, unfailingly: For everything you do for me; for all the kindness and support as I fight the f-ing tumor; for “having my back;” for loving me unconditionally and unstintingly … I am so lucky to have you all in my life.
Love to all, and Happy Holidays!
/ab
Sunday, December 5, 2010
Way Late Blog Update
Well, I’ve been a complete failure at this blogging thing: two months since my last update. Shame on me. On the other hand, I had some significant cervical disc problems that started in early November, so sitting at a computer wasn’t really working for me. Fortunately, my fabulous fantastic physical therapist got me to pretty good shape with my neck, and I’m back to focusing on strength and overall conditioning. The other thing that's been slowing me down with my blogging: computer problems. Am hoping to get the 'puter into the shop for repair some time this week. Having a working computer should make my life easier.
Thanksgiving was great; the food spectacular. We celebrated on Saturday so that everyone could be there, with the exception of nephew Matt who stayed up in Oregon for the holiday. He was missed but we did have my niece and her boyfriend visiting us from Virginia. We don’t get to see a lot of them these days, but at least we got a more extended visit than usual.
On the health front… things are not as great as we’d hoped. Had an MRI last Tuesday (11/30) at UCSF; the MRI was presented to the “tumor board” for evaluation by different specialists (neuro-oncologists, neurosurgeons, oncologists). No big changes, except that there’s a small area (less than 1 cm) that seems “different,” at the rear of the main tumor site. So, obviously, very disappointed but things are far from bleak. We go back to UCSF on Tuesday, 12/7, to meet with my neuro-oncologist, Dr. Chang, and the neurosurgeon (Dr. Parsa) who did my original brain surgery, exactly one year ago on the 7th. (12/7 is also the anniversary of my meeting Kirk, so not everything about that date sucks…). There’s a chance I’ll need another brain surgery to remove this tumor, but there’s also a good chance I can avoid that for now. And there are other chemo treatments that may be options.
I’ll have more to share with you guys after Tuesday’s appointment. I’m sure we’ve got reason to be optimistic, and I’m going to do my best to maintain my optimism while I find out what the next weeks hold in store. Keep a good thought for us. We’ll take all the support we can get.
Love to you all.
/ab
Thanksgiving was great; the food spectacular. We celebrated on Saturday so that everyone could be there, with the exception of nephew Matt who stayed up in Oregon for the holiday. He was missed but we did have my niece and her boyfriend visiting us from Virginia. We don’t get to see a lot of them these days, but at least we got a more extended visit than usual.
On the health front… things are not as great as we’d hoped. Had an MRI last Tuesday (11/30) at UCSF; the MRI was presented to the “tumor board” for evaluation by different specialists (neuro-oncologists, neurosurgeons, oncologists). No big changes, except that there’s a small area (less than 1 cm) that seems “different,” at the rear of the main tumor site. So, obviously, very disappointed but things are far from bleak. We go back to UCSF on Tuesday, 12/7, to meet with my neuro-oncologist, Dr. Chang, and the neurosurgeon (Dr. Parsa) who did my original brain surgery, exactly one year ago on the 7th. (12/7 is also the anniversary of my meeting Kirk, so not everything about that date sucks…). There’s a chance I’ll need another brain surgery to remove this tumor, but there’s also a good chance I can avoid that for now. And there are other chemo treatments that may be options.
I’ll have more to share with you guys after Tuesday’s appointment. I’m sure we’ve got reason to be optimistic, and I’m going to do my best to maintain my optimism while I find out what the next weeks hold in store. Keep a good thought for us. We’ll take all the support we can get.
Love to you all.
/ab
Friday, October 8, 2010
Update: Life is good!
Last blog update, courtesy of my sister, was just after my MRI and (again) I’ve been doing a bad job of keeping up with the blogging. Ah well…
I had a couple of wonderful visits last week from my friends from Children’s Hospital NICU. Sandy and Barbara visited last Monday and brought us a yummy lunch. We talked and laughed and caught up on recent events in our lives and I got caught up on some NICU news.
Then on Wednesday I had a visit from two other NICU nurses, Paula and Vera. (Paula will forever hold a special place in my heart as she was the charge nurse the night my brain tumor reared its ugly head and I had to get whisked to the ER. A very, very scary night for me. She kept running back and forth between the ER and the NICU so that she could manage the NICU while keeping tabs on me.) We had a lovely visit, and toward the end of the visit they surprised me by giving me the most incredible gift from the NICU staff: a beautiful handmade quilt - an incredible work of art - with each of the individual quilt squares made by a different person and having some relevance to me being a nurse, working with babies, and other themes near and dear to my heart like cats, dogs, peace, and many other wonderful things. The nurses also made a matching pillow, with individualized quilt squares. I’m in awe and more appreciative than I can properly express. I’ll ask Kirk to take some pictures of the quilt and we’ll post them. (But don’t hold your breath…as you know, we’re not always right on top of things. Unfortunately.) The quilt is so beautiful that we’re going to hang it on the wall rather than drape it on the bed!
My nurse friends also brought other sweet gifts - cards, cookie “bouquet,” chocolates, and gift cards. I’m, again, overwhelmed by the generosity and thoughtfulness of my friends.
Been feeling good except - yep, there’s always something: I’m now having some new musculoskeletal problems: shoulder pain and neck pain that cause real limitations in my range of motion (ROM). I had an MRI of my neck done on Monday and just heard from my doctor that I have some stenosis (narrowing) in a couple of my cervical vertebrae. So more physical therapy is in store for me (thank you in advance, Pien!).
Avastin treatments continue to go well: no apparent side effects: blood pressure remains low, no bleeding problems, no stomach pain. Will begin next taper of steroids once my neck issues settle down.
Okay, that’s it for now. Love you guys. Thanks for keeping me in your thoughts.
Love, /ab
I had a couple of wonderful visits last week from my friends from Children’s Hospital NICU. Sandy and Barbara visited last Monday and brought us a yummy lunch. We talked and laughed and caught up on recent events in our lives and I got caught up on some NICU news.
Then on Wednesday I had a visit from two other NICU nurses, Paula and Vera. (Paula will forever hold a special place in my heart as she was the charge nurse the night my brain tumor reared its ugly head and I had to get whisked to the ER. A very, very scary night for me. She kept running back and forth between the ER and the NICU so that she could manage the NICU while keeping tabs on me.) We had a lovely visit, and toward the end of the visit they surprised me by giving me the most incredible gift from the NICU staff: a beautiful handmade quilt - an incredible work of art - with each of the individual quilt squares made by a different person and having some relevance to me being a nurse, working with babies, and other themes near and dear to my heart like cats, dogs, peace, and many other wonderful things. The nurses also made a matching pillow, with individualized quilt squares. I’m in awe and more appreciative than I can properly express. I’ll ask Kirk to take some pictures of the quilt and we’ll post them. (But don’t hold your breath…as you know, we’re not always right on top of things. Unfortunately.) The quilt is so beautiful that we’re going to hang it on the wall rather than drape it on the bed!
My nurse friends also brought other sweet gifts - cards, cookie “bouquet,” chocolates, and gift cards. I’m, again, overwhelmed by the generosity and thoughtfulness of my friends.
Been feeling good except - yep, there’s always something: I’m now having some new musculoskeletal problems: shoulder pain and neck pain that cause real limitations in my range of motion (ROM). I had an MRI of my neck done on Monday and just heard from my doctor that I have some stenosis (narrowing) in a couple of my cervical vertebrae. So more physical therapy is in store for me (thank you in advance, Pien!).
Avastin treatments continue to go well: no apparent side effects: blood pressure remains low, no bleeding problems, no stomach pain. Will begin next taper of steroids once my neck issues settle down.
Okay, that’s it for now. Love you guys. Thanks for keeping me in your thoughts.
Love, /ab
Wednesday, September 22, 2010
Today's MRI
Hi everyone,
We just got a great report from Alison and Kirk that her MRI today showed continued response to the Avastin. The tumor sites are "smaller and less dense", per Kirk, who said it was evident even to the untrained eye!
It is such a great relief. In recent weeks, Alison had been having more headaches, nausea and fatigue. Her care team told her it related to tapering her steroids, but it was worrisome to hear about tough headaches that she needed to take pain meds for. She did go back up on her steroids a bit, and it seems to have worked - symptoms are all better. But of course, this is the best medicine: a positive MRI report.
Party on!
We just got a great report from Alison and Kirk that her MRI today showed continued response to the Avastin. The tumor sites are "smaller and less dense", per Kirk, who said it was evident even to the untrained eye!
It is such a great relief. In recent weeks, Alison had been having more headaches, nausea and fatigue. Her care team told her it related to tapering her steroids, but it was worrisome to hear about tough headaches that she needed to take pain meds for. She did go back up on her steroids a bit, and it seems to have worked - symptoms are all better. But of course, this is the best medicine: a positive MRI report.
Party on!
Monday, September 6, 2010
Tapering steroids, PT, and bird watching
I have not been doing a good job of keeping the blog updated, and for that I apologize. Just know that, at least for the past couple of months, no news has been good news: My health is holding steady. No recent health issues to concern me or my medical team. My blood pressure is coming down (and so I’ve been able to taper my diuretics). More significantly, I’m tapering off the steroids (with any luck at all, this will be one of my last weeks on the Decadron): I’m at 0.5 mg/day, and assuming my adrenal glands are back at work, I’ll then go to 0.5 mg/every other day! And given that I haven’t had a resumption of neurological symptoms at the current dosage, it’s looking like my adrenals are doing what they’re s’posed to do (yippee!). But this week will be the one to really keep your fingers crossed for…If I can make it through a week at 0.5mg/day, then life will be looking a whole lot rosier for Team Bronstein-Mitchel. And when I go off steroids, I go off the Septra, too. (Just the idea of reducing the NUMBER of meds I’m taking makes me pretty excited.)
Okay, so… what else do I need to catch you up on? Hmmm… I’m again working with my wonderful, incredible physical therapist, Pien van der Herik, who got me back to work after I badly injured my back a couple of weeks after completing nursing school. So here I am with a whole new set of problems to work through, and Pien is again helping me find my way through to improved physical condition. This time around, it’s less about pain and more about conditioning. New and different problems to work through but already seeing significant improvement in my strength, coordination, balance, and confidence. Kirk comes to all my appointments (well, I guess he’d have to anyway, since I can’t drive myself) and meets with me and Pien at the end of my PT appointment so that he can go over the exercises with us…my memory continues to be poor, so having him watch the exercise regimen ensures that I’m doing exercises as Pien intended. And Kirk and I can go to the PT facility any time they’re open so that I can do my PT exercises any time we can get my butt down there. :) So between walking around various parts of the Berkeley hills and marina, and the PT gym, I hope to get back into some sort of shape and lose more weight and get aerobically fit. (This is a big deal for me: I HATE exercise - really hate it. So this is all about self-discipline…yuck.)
We’ve enjoyed some lovely social time, here and there, spent with friends and family. We’re doing a lot of bird watching at our little cottage-on-the-hill: hummingbirds have really come back big-time after a long dry spell where they pretty much ignored us. Our various birdfeeders are attracting finches (three or four kinds), dark-eyed juncos, spotted towhees, scrub jays, Stellars jays, mourning doves, pine siskins, plain titmouse, chestnut-backed chicadees, red winged blackbird, and various LBBs (little brown birds). Plus we’ve seen a lot of hawk activity and hunting here and when we’re out on our walks. Very exciting.
Okay, I believe that catches you guys up. I will try to be better about my updates: I’ll try to do more frequent, but shorter, updates.
Thanks for keeping us in your thoughts. We love you,
Alison and Kirk
Okay, so… what else do I need to catch you up on? Hmmm… I’m again working with my wonderful, incredible physical therapist, Pien van der Herik, who got me back to work after I badly injured my back a couple of weeks after completing nursing school. So here I am with a whole new set of problems to work through, and Pien is again helping me find my way through to improved physical condition. This time around, it’s less about pain and more about conditioning. New and different problems to work through but already seeing significant improvement in my strength, coordination, balance, and confidence. Kirk comes to all my appointments (well, I guess he’d have to anyway, since I can’t drive myself) and meets with me and Pien at the end of my PT appointment so that he can go over the exercises with us…my memory continues to be poor, so having him watch the exercise regimen ensures that I’m doing exercises as Pien intended. And Kirk and I can go to the PT facility any time they’re open so that I can do my PT exercises any time we can get my butt down there. :) So between walking around various parts of the Berkeley hills and marina, and the PT gym, I hope to get back into some sort of shape and lose more weight and get aerobically fit. (This is a big deal for me: I HATE exercise - really hate it. So this is all about self-discipline…yuck.)
We’ve enjoyed some lovely social time, here and there, spent with friends and family. We’re doing a lot of bird watching at our little cottage-on-the-hill: hummingbirds have really come back big-time after a long dry spell where they pretty much ignored us. Our various birdfeeders are attracting finches (three or four kinds), dark-eyed juncos, spotted towhees, scrub jays, Stellars jays, mourning doves, pine siskins, plain titmouse, chestnut-backed chicadees, red winged blackbird, and various LBBs (little brown birds). Plus we’ve seen a lot of hawk activity and hunting here and when we’re out on our walks. Very exciting.
Okay, I believe that catches you guys up. I will try to be better about my updates: I’ll try to do more frequent, but shorter, updates.
Thanks for keeping us in your thoughts. We love you,
Alison and Kirk
Monday, August 23, 2010
Family Reunion at the River
We just got back from a week of the Bronstein clan - patriarch and wife (Bill and Judy), the 3 siblings (Alison, Jon and Deborah) and their spouses, and all 4 grandchildren (and 3 dogs!) spending a precious week all together in a house in the Russian River area (Guerneville). It was a chance to take time and visit and relax. Alison looked good and seemed to enjoy the week very much. She had to take special care with being in the sun, as the last time she unwittingly left her non-sunscreened feet in the sun for a couple of hours, she got a terrible sunburn that resulted in swelling and pain. But this week, she was very careful, and there were no physical set-backs!
Kirk made sure she had some lovely places to walk - beautiful redwoods, gorgeous (and foggy) coast walk, a local walk with all the bounty of ripening blackberries along the route - yum! She took her naps, sat in the shade of the poolside umbrellas to read and relax, and hopefully had enough company balanced with quiet to make for special week. A giant thank you to our Dad (Bill) and Judy for hosting us in the lovely rental house.
Now almost everyone is back to their "regular lives", but we have some wonderful memories that we collected over the week. I'll see if Christa, the Photo Czarina, can post some pix (way beyond my skill levels).
Anyways, our girl is looking good. She had her previous Avastin treatment on the Thursday prior to the vacation, and things went very well using her new access "port". Next treatment is this Thursday - that medicine is doing a very fine job of shrinking the tumors - yay!
Happy summer to all,
Deborah
Kirk made sure she had some lovely places to walk - beautiful redwoods, gorgeous (and foggy) coast walk, a local walk with all the bounty of ripening blackberries along the route - yum! She took her naps, sat in the shade of the poolside umbrellas to read and relax, and hopefully had enough company balanced with quiet to make for special week. A giant thank you to our Dad (Bill) and Judy for hosting us in the lovely rental house.
Now almost everyone is back to their "regular lives", but we have some wonderful memories that we collected over the week. I'll see if Christa, the Photo Czarina, can post some pix (way beyond my skill levels).
Anyways, our girl is looking good. She had her previous Avastin treatment on the Thursday prior to the vacation, and things went very well using her new access "port". Next treatment is this Thursday - that medicine is doing a very fine job of shrinking the tumors - yay!
Happy summer to all,
Deborah
Monday, August 2, 2010
Port installation and birthday celebrations
I just read yesterday’s blog post from Deborah. Thank you, D, for updating my friends and for your sweet birthday message - and for all your efforts (with help from Kirk and Whit as sous chefs) to make my birthday so fun and memorable. (More on the birthday weekend, below.)
Had my Portacath installed on Wednesday. Getting up at 5:00 AM is not my favorite thing, but Kirk and I managed to get up and to Alta Bates surgi-center on time. And then, of course we waited and waited to be taken in to the OR since first the nurse had to start an IV on me, and getting an IV started was its usual nightmare. (The first nurse that tried to get an IV started tried three painful times before I insisted she get another nurse…and it took that second nurse another two tries to get an IV started. My poor arms are black and blue and sore at the IV starts. Glad we got the port got installed since I’m not sure how much more my poor little fragile veins could have taken.)
Anyway, the port is in and, after the first few days of significant soreness, the port site is feeling and looking pretty good. The docs require a two week healing period before restarting the Avastin, so I’m scheduled for my next treatment on August 12. Meanwhile, I’m continuing to taper my Decadron (steroid) dose and am now at 4 mg/day. With the recent tapering of the steroids, I’m already noticing a change (for the better, i.e., a decrease) in my appetite and shakiness, and am able to sleep for longer periods without waking up.
Had a wonderful weekend: My birthday was Sunday; Kirk and I headed down to spend Saturday night and yesterday with Deborah and Whit at their beautiful and cozy home in Aptos. Delicious dinner and much laughter on Saturday night; then on Sunday we headed down to Aptos to hear Dani and her band perform at the Seaside music festival, where they opened for the Chris Cain Band - a band that I used to go listen and dance to at Larry Blake’s Rathskellar in Berkeley back in my late 20s-early 30s. The Dani Paige Band sounded GREAT – really proud of my girl – and the Chris Cain Band was better than ever. Then we all headed back up to Aptos where “the kids” (Dani, and Dani’s beau Matt, and my nephew Drew) joined me in a laugh-filled game of “Apples to Apples” while dinner was being prepared. We had an incredible dinner (chefs Deborah, Whit and Kirk outdid themselves): Asian ribs, wonderful salad with fresh strawberries, fresh corn on the cob, and home-grown cauliflower. And then an apricot pie from an incredible local produce grower, Gizdich Farms (a la mode, of course). Oh. My. God. Not a good weekend for my calorie intake but a great weekend for enjoyment of family and food.
This week should be less “eventful” than last week, thank goodness. I’ll have time to catch up a bit (hopefully) on thank you notes, home-related chores, packing for our trip to Guerneville, and getting more of my stuff sorted, recycled, stored away, etc. And getting some good walking and nap time in!
Okay, time to get started with my day.
Oh, and to those who sent cards and emails wishing me happy birthday wishes, I thank you so much for thinking of me and send my love back to you with appreciation for your continued love, support, and friendship.
/ab
Had my Portacath installed on Wednesday. Getting up at 5:00 AM is not my favorite thing, but Kirk and I managed to get up and to Alta Bates surgi-center on time. And then, of course we waited and waited to be taken in to the OR since first the nurse had to start an IV on me, and getting an IV started was its usual nightmare. (The first nurse that tried to get an IV started tried three painful times before I insisted she get another nurse…and it took that second nurse another two tries to get an IV started. My poor arms are black and blue and sore at the IV starts. Glad we got the port got installed since I’m not sure how much more my poor little fragile veins could have taken.)
Anyway, the port is in and, after the first few days of significant soreness, the port site is feeling and looking pretty good. The docs require a two week healing period before restarting the Avastin, so I’m scheduled for my next treatment on August 12. Meanwhile, I’m continuing to taper my Decadron (steroid) dose and am now at 4 mg/day. With the recent tapering of the steroids, I’m already noticing a change (for the better, i.e., a decrease) in my appetite and shakiness, and am able to sleep for longer periods without waking up.
Had a wonderful weekend: My birthday was Sunday; Kirk and I headed down to spend Saturday night and yesterday with Deborah and Whit at their beautiful and cozy home in Aptos. Delicious dinner and much laughter on Saturday night; then on Sunday we headed down to Aptos to hear Dani and her band perform at the Seaside music festival, where they opened for the Chris Cain Band - a band that I used to go listen and dance to at Larry Blake’s Rathskellar in Berkeley back in my late 20s-early 30s. The Dani Paige Band sounded GREAT – really proud of my girl – and the Chris Cain Band was better than ever. Then we all headed back up to Aptos where “the kids” (Dani, and Dani’s beau Matt, and my nephew Drew) joined me in a laugh-filled game of “Apples to Apples” while dinner was being prepared. We had an incredible dinner (chefs Deborah, Whit and Kirk outdid themselves): Asian ribs, wonderful salad with fresh strawberries, fresh corn on the cob, and home-grown cauliflower. And then an apricot pie from an incredible local produce grower, Gizdich Farms (a la mode, of course). Oh. My. God. Not a good weekend for my calorie intake but a great weekend for enjoyment of family and food.
This week should be less “eventful” than last week, thank goodness. I’ll have time to catch up a bit (hopefully) on thank you notes, home-related chores, packing for our trip to Guerneville, and getting more of my stuff sorted, recycled, stored away, etc. And getting some good walking and nap time in!
Okay, time to get started with my day.
Oh, and to those who sent cards and emails wishing me happy birthday wishes, I thank you so much for thinking of me and send my love back to you with appreciation for your continued love, support, and friendship.
/ab
Sunday, August 1, 2010
Happy birthday, Alison!
Alison and Kirk are in Aptos to spend the day. Her wish was to have a relaxing day, including going to see daughter Dani perform (it makes her very happy), which will be this afternoon down in Seaside at an outdoor event there. Other big plans are shaping up to include reading, maybe playing a board game or two, and likely a nap! (She has been more tired in the past couple of days after the port placement, needing extra recovery time, it seems.)
I hope you will all join me in wishing Alison a happy, wonderful birthday! She has a way of touching lives that is a testimonial to her loving and giving nature. She is dear to us in such a profound way and is lucky enough to have a support network as wide and wonderful as you all. Thank you all for all your support these last 8 months.
I hope you will all join me in wishing Alison a happy, wonderful birthday! She has a way of touching lives that is a testimonial to her loving and giving nature. She is dear to us in such a profound way and is lucky enough to have a support network as wide and wonderful as you all. Thank you all for all your support these last 8 months.
Thursday, July 29, 2010
Port is placed
Alison did great - the port is placed, the procedure went smoothly, and with our fingers crossed, no more painful needle sticks (the lab draws and infusions are done directly into the port, which is numbed with a lidocaine-type compound before the needle is inserted).
I was going to make bad puns about ports in the storm, in the calm, etc, but will leave that to you all.
Hurray!
I was going to make bad puns about ports in the storm, in the calm, etc, but will leave that to you all.
Hurray!
Tuesday, July 27, 2010
This week
Hi everyone,
Just a quick update. We saw Alison and Kirk last weekend in Aptos, and AB was doing really well. She is weaning down on her Decadron (the steroid used to control the brain swelling) because of how well the Avastin has worked to shrink the tumors. So, she is benefiting from better sleep, an appetite that is more contained, and improving strength. Heck, we exercised her a bunch, and she didn't even complain or even huff or puff too much!
Tomorrow is the day she goes in at crack o' dawn to get her port catheter placed, so that she can get a break from searching for veins for IV infusions and lab draws. She has to be there before the A.M. shift gets there, but the actual procedure is only an hour and she should be home in time for lunch. So think good thoughts that the procedure goes smoothly and quickly. The docs want her to have two full weeks of healing to let that insertion site seal up before the next dose of Avastin.
And, oh by the way - somebody has a birthday on SUNDAY, if you want to send birthday wishes her way! Oh, did I just let that particular cat out of the bag?????
Just a quick update. We saw Alison and Kirk last weekend in Aptos, and AB was doing really well. She is weaning down on her Decadron (the steroid used to control the brain swelling) because of how well the Avastin has worked to shrink the tumors. So, she is benefiting from better sleep, an appetite that is more contained, and improving strength. Heck, we exercised her a bunch, and she didn't even complain or even huff or puff too much!
Tomorrow is the day she goes in at crack o' dawn to get her port catheter placed, so that she can get a break from searching for veins for IV infusions and lab draws. She has to be there before the A.M. shift gets there, but the actual procedure is only an hour and she should be home in time for lunch. So think good thoughts that the procedure goes smoothly and quickly. The docs want her to have two full weeks of healing to let that insertion site seal up before the next dose of Avastin.
And, oh by the way - somebody has a birthday on SUNDAY, if you want to send birthday wishes her way! Oh, did I just let that particular cat out of the bag?????
Saturday, July 17, 2010
Health Update: Great News!
Hi dear friends,
It’s been a busy week for us, with three medical appointments in three days:
Wednesday, had an MRI at UCSF, followed by an appointment with our neuro-oncologist, Dr. Chang, who was thrilled to tell us that the chemotherapy (Avastin) seems to be doing its magic: MRI showed huge improvement. The main, largest tumor has shrunk considerably and, the tumor mass that remains seems less dense. The other two tumor sites are also smaller, so yay! Things are looking really hopeful for the first time in a long time. Still have a long road ahead of us but at least we have some good news and a good trend.
Unfortunately, Dr. Chang felt I need to be off Avastin for two weeks so that they can place a port for delivering the chemotherapy. My veins are not tolerating the frequent IV access that labs and chemo require, so a "portacath" will be surgically inserted (minor surgery, but still not without its risks), that will enable the nurses to access a semi-permanent medical "appliance" under my skin that connects to a vein. Drugs can be injected through the port, and blood samples can be drawn from the port, so it will decrease the number and discomfort of needle "sticks." (Typically the port is inserted in the upper chest, just below the collar bone and, other than a small amount of pain when accessing the port, it will decrease the pain of starting IVs, delivering the medications and doing labs.) SO, looks like we skip Avastin for a month but given how good my MRI looked, Dr. Chang thinks this is just fine.
Thursday, had my Avastin treatment and that went fine. My labs looked good; no problems there. I AM having mouth soreness, presumably a side effect of the Avastin, and although it’s not comfortable, it’s nothing I can’t tolerate. And it’s possible that the mouth soreness will decrease as I taper my steroids dose (which is happening at about 1 mg decrease every 5 days, and I’m decreasing to 6 mg/day as of today!). The only bummer: my wonderful medical oncologist, Dr. Cassidy, is retiring and he’s handing my care over to a new (new to us) oncologist. I’m sure she's medically quite competent; we’re just hoping she’s got the same kind of wonderful bedside manner that makes Dr. Cassidy so special.
Friday (yesterday), had a pulmonary function test and then saw my pulmonologist, Dr. Kury. My pulmonary function test showed good improvement and Dr. Kury was happy with the results of the test and of my physical exam in her office, with no need to schedule additional exams unless I have a recurrence of pulmonary problems. Yay! One less regular doctor’s appointment to schedule and attend.
So, I do have an appointment with my primary care physician, Dr. Candell, on Tuesday. He manages my overall care, including keeping my blood pressure under control (For the first time in my life, I’m on blood pressure medication. I’ve always had very low BP, but a side effect of the Avastin and steroids is increased BP.) Fortunately my BP has been coming down a bit so maybe I’ll be able to get off the diuretic before too long.
Okay, I think that’s enough to share with you. Just wanted you to know there’s been good news on all the medical fronts after a long haul of medical set-backs.
Love you guys; thanks for keeping us in your thoughts and hearts. We get so much strength from your love and support, you just can’t imagine.
/ab and Kirk
It’s been a busy week for us, with three medical appointments in three days:
Wednesday, had an MRI at UCSF, followed by an appointment with our neuro-oncologist, Dr. Chang, who was thrilled to tell us that the chemotherapy (Avastin) seems to be doing its magic: MRI showed huge improvement. The main, largest tumor has shrunk considerably and, the tumor mass that remains seems less dense. The other two tumor sites are also smaller, so yay! Things are looking really hopeful for the first time in a long time. Still have a long road ahead of us but at least we have some good news and a good trend.
Unfortunately, Dr. Chang felt I need to be off Avastin for two weeks so that they can place a port for delivering the chemotherapy. My veins are not tolerating the frequent IV access that labs and chemo require, so a "portacath" will be surgically inserted (minor surgery, but still not without its risks), that will enable the nurses to access a semi-permanent medical "appliance" under my skin that connects to a vein. Drugs can be injected through the port, and blood samples can be drawn from the port, so it will decrease the number and discomfort of needle "sticks." (Typically the port is inserted in the upper chest, just below the collar bone and, other than a small amount of pain when accessing the port, it will decrease the pain of starting IVs, delivering the medications and doing labs.) SO, looks like we skip Avastin for a month but given how good my MRI looked, Dr. Chang thinks this is just fine.
Thursday, had my Avastin treatment and that went fine. My labs looked good; no problems there. I AM having mouth soreness, presumably a side effect of the Avastin, and although it’s not comfortable, it’s nothing I can’t tolerate. And it’s possible that the mouth soreness will decrease as I taper my steroids dose (which is happening at about 1 mg decrease every 5 days, and I’m decreasing to 6 mg/day as of today!). The only bummer: my wonderful medical oncologist, Dr. Cassidy, is retiring and he’s handing my care over to a new (new to us) oncologist. I’m sure she's medically quite competent; we’re just hoping she’s got the same kind of wonderful bedside manner that makes Dr. Cassidy so special.
Friday (yesterday), had a pulmonary function test and then saw my pulmonologist, Dr. Kury. My pulmonary function test showed good improvement and Dr. Kury was happy with the results of the test and of my physical exam in her office, with no need to schedule additional exams unless I have a recurrence of pulmonary problems. Yay! One less regular doctor’s appointment to schedule and attend.
So, I do have an appointment with my primary care physician, Dr. Candell, on Tuesday. He manages my overall care, including keeping my blood pressure under control (For the first time in my life, I’m on blood pressure medication. I’ve always had very low BP, but a side effect of the Avastin and steroids is increased BP.) Fortunately my BP has been coming down a bit so maybe I’ll be able to get off the diuretic before too long.
Okay, I think that’s enough to share with you. Just wanted you to know there’s been good news on all the medical fronts after a long haul of medical set-backs.
Love you guys; thanks for keeping us in your thoughts and hearts. We get so much strength from your love and support, you just can’t imagine.
/ab and Kirk
Sunday, July 11, 2010
Why I’ve Been Out of Touch - Final Installment
Okay, so I had no intention of waiting so long for this third installment. My apologies for being so bad about keeping up with the blog. I guess my “excuse” is that I’ve been feeling so much better these past weeks that I’ve been trying to catch up on other parts of my life that have been woefully ignored for months. (It’s nice to be able to take at least a couple of things off Kirk’s to-do list, once in a while…)
So… to continue:
There were many toasts from many friends. Some were funny; others sentimental; all incredibly touching and meaningful to Kirk and me. Thank you, those who spoke at our wedding, for your wonderful gift.
During the reception, Kirk and I were able to spend at least SOME time with ALMOST everyone. Unfortunately, there were a few people we did not get to talk to, or didn’t get enough time to talk to, despite our best efforts. And if we missed the opportunity, we’re so sorry for that and hope that we’ll have the opportunity in the next months to get together with you here in Berkeley or somewhere nearby! So call us!
Kirk and I were so lucky - and are incredibly appreciative of - a very special gift we got at our wedding: Dani’s guitarist bandmate and song co-writer, Jesse DeCarlo, was the lead musician who played at our wedding reception and who arranged for the other musicians to be there. A very talented guitarist, Jesse brought along a drummer, bass player, singer, and keyboardist to provide the music for our reception. This is not your typical wedding band…these guys are pros in the best sense, and they really added so much to our afternoon. Thank you, thank you, thank you Jesse and your band mates for helping make our big day so very special.
As is generally the case for the wedding couple, getting a chance to eat our dinner was a bit of a challenge. I have to say that, since I was pretty much in one spot the whole afternoon, I got to eat more of my meal than Kirk did. Poor guy…not sure he got more than a few bites of the delicious meal served by Scott’s Seafood. (They did an incredible job…the food was really good! And despite having to serve nearly100 guests, everything came to the table hot and delicious. And they accommodated the special orders we requested for guests with special food needs.)
I prefer “simpler” cakes, not the new-style fancier cakes, so we went to our local Berkeley bakery, Virginia Bakery, and I’m really glad we went that route. The three-tiered cake (chocolate with raspberry filling, spice cake with caramel filling, and carrot cake with cream cheese filling) was delicious. And the Virginia Bakery people couldn’t have been nicer. Plus, to help us decide which type(s) of cake we wanted, they sent us home a cake beautifully quartered into the three above flavors plus white cake with lemon filling so that we could make an educated choice of which flavors to go with. We enjoyed that, although it didn’t help us with our waistlines. :)
We had reservations at the Waterfront Hotel, right across from Scott’s Seafood, and the other guests included Dan Ott, Dani and Matt, Jen and friend Laura, my aunt Barbara and her daughter Samantha, and Kirk’s Colorado friends, Ron and Bonnie, and Annie McKinnon. So the party continued into Saturday night and then (for several of us) into brunch the next morning. Then back to our respective homes where, at least for Kirk and me, the glow of the weekend continued on for several days.
All right, again, I’ve prattled on for longer than intended, but I don’t want to sign out without acknowledging a few other people for their incredible efforts, and without whose help we never could have made this event happen, or certainly not in the nearly-flawless way it happened:
A quick round of compliments for a few of the vendors we worked with to make the day happen. They were wonderful to work with and I wanted to acknowledge them here and make sure you guys know about these guys in case you can use their services in the future:
Kelly Hodgins, catering sales manager for Scott’s Seafood, was incredible. She made our wedding a truly lovely event and made the planning and implementation as stress-free a process as it could have been. She was kind and calming, and solved some planning problems before we’d even booked the event, and after!
Michele Hudson Photography, as mentioned earlier, was easy and FUN to work with. We hope she had as much enjoyment being there as we got from her participation.
Kyle - our videographer - was great. Don’t know his last name or business name but if you’re looking for a videographer, give us a call and we’ll hook you up.
Amir at Solano Florist was professional, kind, knowledgeable, and very creative. I’ve bought flowers from Amir for several years now and he’s always been wonderful to work with: he provides true customer service, the way it used to be.
But now for the people who deserve real acknowledgement from Kirk and me:
Marlene Saritzky - I can’t imagine how this event would have happened if you hadn’t volunteered to help plan and be “stage director” for the day. You managed to make things flow on time throughout, and kept us calm, happy and on track. Hard to think of how we could have managed this without you! The day would not have been as lovely.
Not to mention the limo service to and from the event (wow - was that a delightful surprise!). You’re the best, and I hope I have opportunities to get to know you better. I certainly understand why Kirk’s considered you such a friend for all these years.
“The Reverend” Bob Shipway - for officiating at our wedding ceremony in a way that contributed both humor and sentiment, in just the right amounts. You set the tone for the afternoon and it was PERFECT. (And you did such a great job with the “Princess Bride” mawwage” bit. Not everyone could have pulled that off, and your masterful delivery was all the more impressive in that you’d never seen the movie!)
Dan Ott - Flew in from Wisconsin not once but TWICE on short notice and stepped up as Best Man, with all its many duties and responsibilities. Dan, you were amazing as our emcee, especially as you were having to improvise, and were also having to introduce people you didn’t know as they came up to give spontaneous toasts. And your sweet and supportive phone calls both before and since the wedding just extended the length of our wedding celebration.
Leslie Kaye - thanks for stepping in and helping with so many details on our wedding day. From decorating tables to ushering people about, circulating our journals and getting guests to write their thoughts in them, then gathering our cards, gifts and belongings at the end of the reception and getting them to our hotel room (which you “staged” and decorated on the spot). Who knew we needed someone to do all of that? Not us!
Jesse DeCarlo - I’ve already mentioned the gift of your gift of music, which will never be forgotten. Thank you for your generosity and your time.
Dani and Jen, my darling daughter and like-a-daughter. The day would not have been the same without your presence, without your silliness, your joy, your help with preparations (LOTS of stress for our two girls…a long story), and without Dani’s beautiful singing for our first dance. We love you beyond words.
And, finally, I want to thank my dad, Bill Bronstein, for…well, for his unstinting love and support of me for my whole life, and for Kirk since Kirk became part of my life and family 13-plus years ago. My wonderful father is a constant reminder to us of what it means to be loving and generous and of what’s truly important in life.
Okay. I think I’ve covered the important points we wanted to make, so I’ll (finally) sign off. Photos should be posted soon!
Love to all of you,
The Newlyweds (still basking in the glow…)
So… to continue:
There were many toasts from many friends. Some were funny; others sentimental; all incredibly touching and meaningful to Kirk and me. Thank you, those who spoke at our wedding, for your wonderful gift.
During the reception, Kirk and I were able to spend at least SOME time with ALMOST everyone. Unfortunately, there were a few people we did not get to talk to, or didn’t get enough time to talk to, despite our best efforts. And if we missed the opportunity, we’re so sorry for that and hope that we’ll have the opportunity in the next months to get together with you here in Berkeley or somewhere nearby! So call us!
Kirk and I were so lucky - and are incredibly appreciative of - a very special gift we got at our wedding: Dani’s guitarist bandmate and song co-writer, Jesse DeCarlo, was the lead musician who played at our wedding reception and who arranged for the other musicians to be there. A very talented guitarist, Jesse brought along a drummer, bass player, singer, and keyboardist to provide the music for our reception. This is not your typical wedding band…these guys are pros in the best sense, and they really added so much to our afternoon. Thank you, thank you, thank you Jesse and your band mates for helping make our big day so very special.
As is generally the case for the wedding couple, getting a chance to eat our dinner was a bit of a challenge. I have to say that, since I was pretty much in one spot the whole afternoon, I got to eat more of my meal than Kirk did. Poor guy…not sure he got more than a few bites of the delicious meal served by Scott’s Seafood. (They did an incredible job…the food was really good! And despite having to serve nearly100 guests, everything came to the table hot and delicious. And they accommodated the special orders we requested for guests with special food needs.)
I prefer “simpler” cakes, not the new-style fancier cakes, so we went to our local Berkeley bakery, Virginia Bakery, and I’m really glad we went that route. The three-tiered cake (chocolate with raspberry filling, spice cake with caramel filling, and carrot cake with cream cheese filling) was delicious. And the Virginia Bakery people couldn’t have been nicer. Plus, to help us decide which type(s) of cake we wanted, they sent us home a cake beautifully quartered into the three above flavors plus white cake with lemon filling so that we could make an educated choice of which flavors to go with. We enjoyed that, although it didn’t help us with our waistlines. :)
We had reservations at the Waterfront Hotel, right across from Scott’s Seafood, and the other guests included Dan Ott, Dani and Matt, Jen and friend Laura, my aunt Barbara and her daughter Samantha, and Kirk’s Colorado friends, Ron and Bonnie, and Annie McKinnon. So the party continued into Saturday night and then (for several of us) into brunch the next morning. Then back to our respective homes where, at least for Kirk and me, the glow of the weekend continued on for several days.
All right, again, I’ve prattled on for longer than intended, but I don’t want to sign out without acknowledging a few other people for their incredible efforts, and without whose help we never could have made this event happen, or certainly not in the nearly-flawless way it happened:
A quick round of compliments for a few of the vendors we worked with to make the day happen. They were wonderful to work with and I wanted to acknowledge them here and make sure you guys know about these guys in case you can use their services in the future:
Kelly Hodgins, catering sales manager for Scott’s Seafood, was incredible. She made our wedding a truly lovely event and made the planning and implementation as stress-free a process as it could have been. She was kind and calming, and solved some planning problems before we’d even booked the event, and after!
Michele Hudson Photography, as mentioned earlier, was easy and FUN to work with. We hope she had as much enjoyment being there as we got from her participation.
Kyle - our videographer - was great. Don’t know his last name or business name but if you’re looking for a videographer, give us a call and we’ll hook you up.
Amir at Solano Florist was professional, kind, knowledgeable, and very creative. I’ve bought flowers from Amir for several years now and he’s always been wonderful to work with: he provides true customer service, the way it used to be.
But now for the people who deserve real acknowledgement from Kirk and me:
Marlene Saritzky - I can’t imagine how this event would have happened if you hadn’t volunteered to help plan and be “stage director” for the day. You managed to make things flow on time throughout, and kept us calm, happy and on track. Hard to think of how we could have managed this without you! The day would not have been as lovely.
Not to mention the limo service to and from the event (wow - was that a delightful surprise!). You’re the best, and I hope I have opportunities to get to know you better. I certainly understand why Kirk’s considered you such a friend for all these years.
“The Reverend” Bob Shipway - for officiating at our wedding ceremony in a way that contributed both humor and sentiment, in just the right amounts. You set the tone for the afternoon and it was PERFECT. (And you did such a great job with the “Princess Bride” mawwage” bit. Not everyone could have pulled that off, and your masterful delivery was all the more impressive in that you’d never seen the movie!)
Dan Ott - Flew in from Wisconsin not once but TWICE on short notice and stepped up as Best Man, with all its many duties and responsibilities. Dan, you were amazing as our emcee, especially as you were having to improvise, and were also having to introduce people you didn’t know as they came up to give spontaneous toasts. And your sweet and supportive phone calls both before and since the wedding just extended the length of our wedding celebration.
Leslie Kaye - thanks for stepping in and helping with so many details on our wedding day. From decorating tables to ushering people about, circulating our journals and getting guests to write their thoughts in them, then gathering our cards, gifts and belongings at the end of the reception and getting them to our hotel room (which you “staged” and decorated on the spot). Who knew we needed someone to do all of that? Not us!
Jesse DeCarlo - I’ve already mentioned the gift of your gift of music, which will never be forgotten. Thank you for your generosity and your time.
Dani and Jen, my darling daughter and like-a-daughter. The day would not have been the same without your presence, without your silliness, your joy, your help with preparations (LOTS of stress for our two girls…a long story), and without Dani’s beautiful singing for our first dance. We love you beyond words.
And, finally, I want to thank my dad, Bill Bronstein, for…well, for his unstinting love and support of me for my whole life, and for Kirk since Kirk became part of my life and family 13-plus years ago. My wonderful father is a constant reminder to us of what it means to be loving and generous and of what’s truly important in life.
Okay. I think I’ve covered the important points we wanted to make, so I’ll (finally) sign off. Photos should be posted soon!
Love to all of you,
The Newlyweds (still basking in the glow…)
Saturday, June 26, 2010
Why I've been out of touch: Part 2
To continue our tale of abounding happiness:
Both the wedding and reception were at Scott’s Seafood, by the water at Jack London Square in Oakland, and it was a beautiful sunny day -which made it a perfectly great setting.
The wedding reception was unbelievable. Even the taking of wedding pictures was filled with much laughter and silliness, as the photographer joined enthusiastically in the merriment, laughing, and enjoying the moments with us in a way that made the experience fun and relaxed.
The reception itself was filled with more love and laughter than I can convey. We were told repeatedly by our guests/friends/family that our wedding and reception were the happiest they’ve ever seen / been to. And Kirk’s best man, Dan Ott, had the wise perception that, unlike most weddings, where some people are invited or attend because of a sense of obligation (extended family ties, business relationships, “they came to our wedding so we have to go to theirs,” those sorts of things), in our case, everyone who came to be with us on Saturday was there because they truly wanted to be…truly wanted to share our happiness with us. I think Dan is exactly right. It was an amazing outpouring of love and support for me, for Kirk, and for us. The love that people conveyed, the happiness people felt on our behalf … We were overwhelmed. And still are.
And to give you an idea of how much our friends did to make us feel loved: Along with the “local” friends and relatives who came to the wedding, many of our guests came from great distances or rearranged their schedules to be with us. Of special note to me and Kirk: Deborah and Whit (sister and brother-in-law) rearranged a moving date and U-Haul reservation (long story), packing up the U-Haul and driving from LA on Friday in order to be with us Saturday… then they still had to unpack the U-Haul on Sunday. I can’t imagine how tired they were on Monday morning… ugh. Jon & Christa (brother and sisiter-in-law) had a bar mitzvah first thing Saturday morning-and Jon was one of the people being called to the bema to do a reading, so he HAD to be there. He and Christa raced from Danville to Oakland to make the start of the ceremony. But perhaps more impressive is the number of people who came from long distances on such short notice: Friends and family came from Wisconsin, Colorado, Oregon, Washington, Texas, San Luis Obispo, Palm Springs, Merced, Auburn. Man, do Kirk and I feel loved. And so very grateful for the love and friendship we felt from everyone there.
Kirk and I did the “first dance” thing that married couples are supposed to do but, unlike most weddings, we had the dance floor to ourselves as my daughter Dani, with her beautiful voice, sang “our” song, “Make You Feel My Love” - a Bob Dylan song recently covered by a brilliant young singer, Adele. (Worth a listen on “YouTube” if you haven’t heard it. Or depending upon how the wedding reception video comes out, perhaps we’ll be able to post Dani’s version…it was beautiful. So proud of our girl!)
Okay, this blog entry gone on too long already, so I'll leave Part 3 of our wonderful wedding story till the next blog update.Love you guys,
/ab
Sunday, June 20, 2010
Why I've been out of touch: Part I
Hello dear friends,
I know it's been a LONG long time since I updated my blog, and I hope that hasn't worried you... it's actually been for a really good reason: Kirk and I got married yesterday (June 19). It was an amazing day, all the more so because we only set the date and started making plans 16 days before the wedding. (We wouldn't advise this... There's a reason most weddings are planned with at least six months' lead time.)
Some of you reading this blog were invited to the wedding. Amazingly, despite the short notice we provided, almost every person invited did, in fact, attend the wedding. The response overwhelmed us. (Those of you who were not invited, please believe me, we wish you could have been included but we simply couldn't invite everyone we would have wanted to share the day with.)
The day was joyous beyond belief. For me, it was a perfect day: From the time we got up and started our preparations, everything went smoothly. Everything ran on schedule, there was much laughter throughout the "getting-the-wedding-party-dressed" phase and the brief dress rehearsal... And then there was the wedding itself, which was... perfect. As most of you know, I'm not a person who really likes to follow the "traditional" paths, and Kirk's sense of humor encourages that tendency of mine. So his suggestion that we start our wedding ceremony with a famous "bit" from one of the Bronstein family's favorite movies, "The Princess Bride," suited me just fine. If you know the movie, it's the section that begins with the wedding ceremony being officiated by a priest with a serious speech impediment. ("...mawwage is what bwings us togevah...today...) This"bit" is regularly-quoted by my brother, Jon. If you've never seen it, you really need to.) The ceremony was officiated by Kirk's best friend from law school, Bob Shipway (affectionately known as the Reverend Bob), and the first word out of his mouth was, "Mawwage," and then he did the whole "bit." That set the tone for the wedding: much laughter and silliness mixed with wonderful loving emotion.
Okay... It's late and I need to get to bed, but I'll do Part II in the next couple days...
Before I sign off, I guess I just want to say that I think Kirk and I have "felt" married for quite some time, and maybe that's part of why we haven't done this marriage thing till now. But the actual marriage to Kirk...the actual ceremony in front of our friends and family, well... it just reinforces the incredible blessing of Kirk's love and makes me feel so incredibly lucky to have the loving commitment of this wonderful, smart, kind, tender and generous husband.
Oh...and one last thing: Please – no wedding gifts! Really. We’re in our 50s for crying out loud, and we want for nothing. But if you wish to give something in honor of our marriage, donations may be made to:
Children's Hospital & Research Center Foundation
2201 Broadway, Suite 600
Oakland, CA 94612
More to follow... love you guys... /ab
Update to post: Yes, yes, we'll be posting links to photos, that sort of thing, but be patient! We don't have the pics back from the photographer. Once we've got that, we'll be posting a link to get you guys all "hooked up." Thanks for your enthusiastic interest!
I know it's been a LONG long time since I updated my blog, and I hope that hasn't worried you... it's actually been for a really good reason: Kirk and I got married yesterday (June 19). It was an amazing day, all the more so because we only set the date and started making plans 16 days before the wedding. (We wouldn't advise this... There's a reason most weddings are planned with at least six months' lead time.)
Some of you reading this blog were invited to the wedding. Amazingly, despite the short notice we provided, almost every person invited did, in fact, attend the wedding. The response overwhelmed us. (Those of you who were not invited, please believe me, we wish you could have been included but we simply couldn't invite everyone we would have wanted to share the day with.)
The day was joyous beyond belief. For me, it was a perfect day: From the time we got up and started our preparations, everything went smoothly. Everything ran on schedule, there was much laughter throughout the "getting-the-wedding-party-dressed" phase and the brief dress rehearsal... And then there was the wedding itself, which was... perfect. As most of you know, I'm not a person who really likes to follow the "traditional" paths, and Kirk's sense of humor encourages that tendency of mine. So his suggestion that we start our wedding ceremony with a famous "bit" from one of the Bronstein family's favorite movies, "The Princess Bride," suited me just fine. If you know the movie, it's the section that begins with the wedding ceremony being officiated by a priest with a serious speech impediment. ("...mawwage is what bwings us togevah...today...) This"bit" is regularly-quoted by my brother, Jon. If you've never seen it, you really need to.) The ceremony was officiated by Kirk's best friend from law school, Bob Shipway (affectionately known as the Reverend Bob), and the first word out of his mouth was, "Mawwage," and then he did the whole "bit." That set the tone for the wedding: much laughter and silliness mixed with wonderful loving emotion.
Okay... It's late and I need to get to bed, but I'll do Part II in the next couple days...
Before I sign off, I guess I just want to say that I think Kirk and I have "felt" married for quite some time, and maybe that's part of why we haven't done this marriage thing till now. But the actual marriage to Kirk...the actual ceremony in front of our friends and family, well... it just reinforces the incredible blessing of Kirk's love and makes me feel so incredibly lucky to have the loving commitment of this wonderful, smart, kind, tender and generous husband.
Oh...and one last thing: Please – no wedding gifts! Really. We’re in our 50s for crying out loud, and we want for nothing. But if you wish to give something in honor of our marriage, donations may be made to:
Children's Hospital & Research Center Foundation
2201 Broadway, Suite 600
Oakland, CA 94612
More to follow... love you guys... /ab
Update to post: Yes, yes, we'll be posting links to photos, that sort of thing, but be patient! We don't have the pics back from the photographer. Once we've got that, we'll be posting a link to get you guys all "hooked up." Thanks for your enthusiastic interest!
Monday, May 31, 2010
Daughters, new friends, and old friends
Well, it's been a great weekend...fairly relaxing, feeling pretty good, enjoying the good weather, and getting out for regular walks in the local hills (about 45 minutes of walking each day, so that's been great).
We're awaiting the arrival of our sweet Dani who, unfortunately, is stuck in miserable Memorial Day traffic, but we'll be diving into yummy food once she gets here and plan on having a relaxing visit with her tonight and tomorrow, since her life has been a bit on the stressful side for a while now (end of semester, overly-full schedule, that sort of thing)...so Kirk and I thought we could baby her a bit. (You know...the kind of thing moms love to do but I haven't had a lot of opportunities to do... thank goodness I have Kirk to help me with this!). And then we might get some shopping and errands done down the hill -- and give Kirk a break from all the running around he has to do for / with me.
We've also got plans to do dinner with our dear Like-a-Daughter (LAD), Jen, this week, which is great, since we missed a few of our usual Monday night visits over the past month...plus she's with her family in southern California today, so there goes our usual Monday LAD visit for this week. :(
Had a wonderful, wonderful visit this week from two of my NICU nurse buddies, Barbara Johnson and Sandy Fiorenza. All the NICU nurses were so important in my efforts to become the best nurse I could be, since I was just starting out at this nursing thing, but the nurses that precepted me have a special place in my heart. Sandy I've known since I started in the NICU -- she precepted me for one shift (for the non-medical folks, that means she was the nurse responsible for training me on that shift), and it was a great shift -- she's smart, a wonderful teacher, and I learned so much from her in that 8 hour shift...plus had a great time, as she's just a sweetheart. We stayed close throughout my time in the NICU, even though she switched to day shift soon after I joined the "p.m." shift in the NICU.
As for Barbara, she's also a day shift nurse, so I didn't get to know her as well until recently, but all my interactions with her were wonderful, and whenever we interacted (mostly at shift changes, where we'd give report to one another), I always left the interaction feeling warm and supported and educated, to say the very least. I knew Barbara lives up nearby where Kirk and I live (just down the hill from us), her proximity was made more real when she ran into Kirk and me one day a couple of weeks ago -- and since then she has made sure that we are and will be in more regular contact.
So, I'm again feeling very blessed, indeed, to have such wonderful people in my life.
I've got a couple of visits from old friends coming up this week -- and I'm serious when I say old friends: one of them (Valerie) I've known since 1973 or 1974, although we lost touch for quite a number of years and haven't actually seen each other since the '70s. So I'm hoping we can actually make our calendars work for a visit...we're still working out the details. And I'll certainly be visiting with my dear friend, Kate, and her fiance, Michael, who will be visiting from Australia...they should be here Friday and/or Saturday. It's been at least a couple of years since I've seen them, so I'm thrilled that they'll be here. Kate's been a very special person in my life...it's hard that she's half way around the world and that we can see each other so rarely.
So that's the current plan for my next week: a little vague, but filled with potential for wonderful reconnection with wonderful people. I'll keep you posted!
Love to you all,
/ab
We're awaiting the arrival of our sweet Dani who, unfortunately, is stuck in miserable Memorial Day traffic, but we'll be diving into yummy food once she gets here and plan on having a relaxing visit with her tonight and tomorrow, since her life has been a bit on the stressful side for a while now (end of semester, overly-full schedule, that sort of thing)...so Kirk and I thought we could baby her a bit. (You know...the kind of thing moms love to do but I haven't had a lot of opportunities to do... thank goodness I have Kirk to help me with this!). And then we might get some shopping and errands done down the hill -- and give Kirk a break from all the running around he has to do for / with me.
We've also got plans to do dinner with our dear Like-a-Daughter (LAD), Jen, this week, which is great, since we missed a few of our usual Monday night visits over the past month...plus she's with her family in southern California today, so there goes our usual Monday LAD visit for this week. :(
Had a wonderful, wonderful visit this week from two of my NICU nurse buddies, Barbara Johnson and Sandy Fiorenza. All the NICU nurses were so important in my efforts to become the best nurse I could be, since I was just starting out at this nursing thing, but the nurses that precepted me have a special place in my heart. Sandy I've known since I started in the NICU -- she precepted me for one shift (for the non-medical folks, that means she was the nurse responsible for training me on that shift), and it was a great shift -- she's smart, a wonderful teacher, and I learned so much from her in that 8 hour shift...plus had a great time, as she's just a sweetheart. We stayed close throughout my time in the NICU, even though she switched to day shift soon after I joined the "p.m." shift in the NICU.
As for Barbara, she's also a day shift nurse, so I didn't get to know her as well until recently, but all my interactions with her were wonderful, and whenever we interacted (mostly at shift changes, where we'd give report to one another), I always left the interaction feeling warm and supported and educated, to say the very least. I knew Barbara lives up nearby where Kirk and I live (just down the hill from us), her proximity was made more real when she ran into Kirk and me one day a couple of weeks ago -- and since then she has made sure that we are and will be in more regular contact.
So, I'm again feeling very blessed, indeed, to have such wonderful people in my life.
I've got a couple of visits from old friends coming up this week -- and I'm serious when I say old friends: one of them (Valerie) I've known since 1973 or 1974, although we lost touch for quite a number of years and haven't actually seen each other since the '70s. So I'm hoping we can actually make our calendars work for a visit...we're still working out the details. And I'll certainly be visiting with my dear friend, Kate, and her fiance, Michael, who will be visiting from Australia...they should be here Friday and/or Saturday. It's been at least a couple of years since I've seen them, so I'm thrilled that they'll be here. Kate's been a very special person in my life...it's hard that she's half way around the world and that we can see each other so rarely.
So that's the current plan for my next week: a little vague, but filled with potential for wonderful reconnection with wonderful people. I'll keep you posted!
Love to you all,
/ab
Tuesday, May 25, 2010
Upbeat update
Happy to report that things have been going well in terms of health, energy, and mental clarity over the past week. So keep good thoughts for me, that I can maintain this trend and get back onto Avastin in a couple of weeks to keep after this damned tumor. (As a reminder, the two benefits of Avastin are that it (1) reduces localized swelling around the tumor and that (2) it stops growth of blood vessels in the tumor site...so you can see why I'm anxious to get back on the chemo...).
Oh, and I had pulmonary function tests and an appointment with my pulmonologist yesterday and got a pretty good report from her, so that appears to be going well, too!
We had a wonderful weekend visit from Kirk's college roommate and best friend from that era, Dan Ott. I've heard about Dan for 13 years but had never met him. Dan is everything I'd heard he was -- kind, gentle, empathetic, funny, artistic, an educator who cares more about his students than his ego -- an emotionally generous big bear of a man who immediately made me feel as if I'd known him for years. It was great to see Kirk and Dan together...these two friends have stayed in touch by phone and mail/email but hadn't seen each other in 25 years.
That's it for now. Hope to have more positive news for you in the days to come!
Love you all,
/ab
Oh, and I had pulmonary function tests and an appointment with my pulmonologist yesterday and got a pretty good report from her, so that appears to be going well, too!
We had a wonderful weekend visit from Kirk's college roommate and best friend from that era, Dan Ott. I've heard about Dan for 13 years but had never met him. Dan is everything I'd heard he was -- kind, gentle, empathetic, funny, artistic, an educator who cares more about his students than his ego -- an emotionally generous big bear of a man who immediately made me feel as if I'd known him for years. It was great to see Kirk and Dan together...these two friends have stayed in touch by phone and mail/email but hadn't seen each other in 25 years.
That's it for now. Hope to have more positive news for you in the days to come!
Love you all,
/ab
Tuesday, May 18, 2010
Rough week
Well, as you could see from the previous post, we've had a rough week. Friday afternoon we took our sweet cat to the vet to put him to sleep. It was awful, but it was time...and, in fact, the cat seemed to be ready his end: for the first time ever, he willingly climbed into his cat carrier when it was placed before him. Still, we weren't ready for the end and Kirk, Dani, and I had a tough time getting through that afternoon and evening. We're doing okay at this point and it, of course, gets easier every day, but we're still having moments of real sadness and loss when we look up at something in the house and expect to see our little buddy at one of his usual spots. :(
The good news has been on the health front. My abscess appears to be healing well (finally), which means that -- with the infection cleared -- I have to go 4 weeks before I can start back on my chemotherapy (Avastin), which is critical to getting my tumor to continue receding.
Meanwhile, I'm working hard to improve my overall health and physical conditioning -- Kirk and I try to walk every day, even if only for 15 minutes, although most days I'm walking 45 minutes and up to 1-1/2 miles and trying to increase those numbers as much as possible.
So that's the current update. More news as we get it.
Love you,
/ab
The good news has been on the health front. My abscess appears to be healing well (finally), which means that -- with the infection cleared -- I have to go 4 weeks before I can start back on my chemotherapy (Avastin), which is critical to getting my tumor to continue receding.
Meanwhile, I'm working hard to improve my overall health and physical conditioning -- Kirk and I try to walk every day, even if only for 15 minutes, although most days I'm walking 45 minutes and up to 1-1/2 miles and trying to increase those numbers as much as possible.
So that's the current update. More news as we get it.
Love you,
/ab
Wednesday, May 12, 2010
A Hard Day
Alison has had an emotional day today, after having minor surgery yesterday to deal with an abscess. The procedure went fine. She is on yet a different antibiotic, and needs her pain medications to keep comfortable; but she is making a good recovery. Any surgery means slowing down in terms of walking and strengthening, and healing is always trickier while on steroids. So she is getting her rest, and her docs lowered her steroid dose a bit, which is great.
But, her sweet kitty is not doing well, and she knows that the time is coming very soon to have to put him to sleep, so she is pretty well wrecked thinking about that. All of us “animal people” know how emotionally difficult it is when we have a member of our family, albeit animal, who is sick. It’s pretty hard to deal with, altogether, and knowing we will miss the sweet innocence of our animals can break our hearts as we say good-bye.
We’re sending Alison, Kirk, and Dani tons of sympathy and strength to get through the next few days.
But, her sweet kitty is not doing well, and she knows that the time is coming very soon to have to put him to sleep, so she is pretty well wrecked thinking about that. All of us “animal people” know how emotionally difficult it is when we have a member of our family, albeit animal, who is sick. It’s pretty hard to deal with, altogether, and knowing we will miss the sweet innocence of our animals can break our hearts as we say good-bye.
We’re sending Alison, Kirk, and Dani tons of sympathy and strength to get through the next few days.
Sunday, May 9, 2010
Nurses' Week
It turns out it’s Nurses’ Week, and one of my NICU nurse friends (thank you, Lori) sent me this link. I thought forwarding it via my blog would be a wonderful way to share with people (non-NICU nurse types) a glimpse of what NICU nurses do.
(Unfortunately, I'm unable to get the video clip to run from this blog, so try searching for "What it means to be a NICU Nurse" on youtube to see the video.)
I miss nursing; I miss working with my nurse friends – a group of smart, kind dedicated, compassionate people who take their work so seriously and who – from the time I started my nursing career (only a few short years ago) – never ceased to inspire me to learn and be the best nurse I could be.So hurray to all the nurses, this week and every week. We're lucky to be a part of such an amazing profession. I'm so proud to have been a part of it.
Love you guys,
/abThursday, May 6, 2010
The Medical Update
Alison had been doing very well on her Avastin treatment; she was doing so well that the MRI that she had yesterday actually shows that the tumors have regressed! She had been reporting feeling stronger, able to walk longer, feeling mentally clearer – all in all, functioning better.
BUT, she developed an abscess that the doctors believe is a result of being on the Avastin. Hoping that the abscess would heal on it's own, she was told to skip one Avastin treatement. Now it turns out she'll need some minor surgery to close the abscess, and as Avastin can impede healing, she'll be off Avastin for about one month. She / we all have disappointment around that, since the Avastin has been doing its job in terms of kicking tumor butt. She’ll have her procedure next week, so we’ll post more information as it becomes available.
BUT, she developed an abscess that the doctors believe is a result of being on the Avastin. Hoping that the abscess would heal on it's own, she was told to skip one Avastin treatement. Now it turns out she'll need some minor surgery to close the abscess, and as Avastin can impede healing, she'll be off Avastin for about one month. She / we all have disappointment around that, since the Avastin has been doing its job in terms of kicking tumor butt. She’ll have her procedure next week, so we’ll post more information as it becomes available.
Monday, April 26, 2010
Kitty report
Just a quick note to say our sweet kitty did well with his surgery. He's got about a 3 inch stump left on his shaved tail...looks quite odd but he seems unconcerned. So far he's leaving the sutures alone, which is good since if he starts chewing at the sutures we'll have to make him wear the "cone of shame" (the "Elizabethan collar" that prevents animals from getting to their wounds). His appetite was never affected by the tumor or the surgery, especially if kitty treats are involved. I'm planning on staying close to home tomorrow so I can keep an eye on him and give him some "quality time" which, for him, means any time he can be in actual physical contact with me.
We had a lovely night. Our sweet Jen ("Like-a-Daughter) joined us for dinner and Dancing With the Starts (DWTS) --our guilty pleasure each Monday and Tuesday night. She's spending the night, which we love, and is great for her since she lives in SF and works in the east bay, so it saves her a couple of hours of commute time, and is great for us because she's just so much fun to have around.
Dani had a big weekend, running a 9 mile race in record time: an hour and 27 minutes, at a pace of 9 minutes and 41 seconds per mile. She placed 191 out of 785 people, and was 103 out of 593 women. So proud of her! And then she went out and sang for her regular Sunday night gig at SlyMcFlys and apparently had quite a turnout there, so she had a huge day. Go Dani; go Dani!
Okay, time for bed. More news as it develops.
Love you guys,
/ab
We had a lovely night. Our sweet Jen ("Like-a-Daughter) joined us for dinner and Dancing With the Starts (DWTS) --our guilty pleasure each Monday and Tuesday night. She's spending the night, which we love, and is great for her since she lives in SF and works in the east bay, so it saves her a couple of hours of commute time, and is great for us because she's just so much fun to have around.
Dani had a big weekend, running a 9 mile race in record time: an hour and 27 minutes, at a pace of 9 minutes and 41 seconds per mile. She placed 191 out of 785 people, and was 103 out of 593 women. So proud of her! And then she went out and sang for her regular Sunday night gig at SlyMcFlys and apparently had quite a turnout there, so she had a huge day. Go Dani; go Dani!
Okay, time for bed. More news as it develops.
Love you guys,
/ab
Friday, April 23, 2010
Anticipating another fun weekend ahead!
It's Friday afternoon and I'm so looking forward to this weekend: We've got a visit planned with long-time family friends, the Muellers, who are on their way up from Palm Springs. Marty Mueller has been a friend since he and Jon went to junior high (back in the days when it was called "junior high," and not "middle school,") in Palm Springs. Jon and Marty's friendship continued through college, Marty's law school graduation and marriage to Avvie here in the Bay Area (where we were actually neighbors in a four-plex in Oakland), and the Muellers' subsequent move back to Palm Springs, where they've raised their wonderful family. I've been lucky enough to be a part of this ongoing friendship. Not just their friendship: They named their first-born child Alison. I mean, wow.
(We adore Alison (not just because she's my namesake) and the other two Mueller children, David and Annie. Just an amazing family.
Once again, Jon and Christa will be hosting our visit to Danville (thank you, thank you, J&C). We already know the food will be out of this world. And there will be guaranteed belly laughs and general silliness aplenty. Only bummer is that Deborah and Whit had plans that preclude them from joining in.
One sad note I need to mention: On Monday, Kirk and I will need to take HiTops, our sweet ol' bear of a cat, in to the vet to have his tail surgically removed, as he's developed a metastatic tumor near the base of the tail. Rather than try to remove the mass, which would be difficult and more painful and problematic for him in the long run, we've decided to do a "tail-ectomy" (okay, so not a real word, but...) and turn him into a manx. Since the tumor is malignant, we're not sure how long the tail-ectomy gives him, but for the moment (since he doesn't really act sick, except for some lethargy) it seemed like our best option. I've had HiTops for about 16 years and he is the sweetest little creature -- not a mean bone in his body... and he is devoted to me in a way that is almost ridiculous. So I expect some difficult emotional times ahead for me, and for Kirk (who has become quite devoted to Hi Tops) as well.
Okay, that's it for now. Probably no updates again till after the Muellers are headed back to Palm Springs and I can report the news of the weekend.
Love to you all,
/ab
(We adore Alison (not just because she's my namesake) and the other two Mueller children, David and Annie. Just an amazing family.
Once again, Jon and Christa will be hosting our visit to Danville (thank you, thank you, J&C). We already know the food will be out of this world. And there will be guaranteed belly laughs and general silliness aplenty. Only bummer is that Deborah and Whit had plans that preclude them from joining in.
One sad note I need to mention: On Monday, Kirk and I will need to take HiTops, our sweet ol' bear of a cat, in to the vet to have his tail surgically removed, as he's developed a metastatic tumor near the base of the tail. Rather than try to remove the mass, which would be difficult and more painful and problematic for him in the long run, we've decided to do a "tail-ectomy" (okay, so not a real word, but...) and turn him into a manx. Since the tumor is malignant, we're not sure how long the tail-ectomy gives him, but for the moment (since he doesn't really act sick, except for some lethargy) it seemed like our best option. I've had HiTops for about 16 years and he is the sweetest little creature -- not a mean bone in his body... and he is devoted to me in a way that is almost ridiculous. So I expect some difficult emotional times ahead for me, and for Kirk (who has become quite devoted to Hi Tops) as well.
Okay, that's it for now. Probably no updates again till after the Muellers are headed back to Palm Springs and I can report the news of the weekend.
Love to you all,
/ab
Saturday, April 17, 2010
Weekend in Monterey!
Big day! My first trip away from the Berkeley area since early in my treatment. It feels great to have a change in scenery.
Kirk and I drove Dani back down to CSUMB, checked into our hotel, took a brief nap, then had a wonderful dinner with Dani's friend and musical partner-in-crime, Jesse; his wife, Eva; and completely adorable daughter, Daphne (2-1/2 yr old). Jesse was our chef, and oh my, it was quite a meal.
We left Jesse and Eva and did a little grocery shopping so that my food monster wouldn't get the best of me overnight (god forbid), and by luck we ran into Dani's wonderful beau (Matt) at Safeway where he and his partner were grabbing some food (Matt's an EMT; partner Clay is a medic).
Now we're settled into our hotel room, getting ready for bed, and our plan is to meet Dani and Matt for breakfast tomorrow morning. And if all goes as planned, we'll be meeting up with Deborah and Whit tomorrow in Aptos...maybe do a hike, but at very least we'll spend some time and maybe have dinner before we head back over the hill.
So very exciting... my first steps back toward some sort of normalcy. Feels really good. Hope to have many more of these reports for you in the months to come.
Love you guys. /ab
Kirk and I drove Dani back down to CSUMB, checked into our hotel, took a brief nap, then had a wonderful dinner with Dani's friend and musical partner-in-crime, Jesse; his wife, Eva; and completely adorable daughter, Daphne (2-1/2 yr old). Jesse was our chef, and oh my, it was quite a meal.
We left Jesse and Eva and did a little grocery shopping so that my food monster wouldn't get the best of me overnight (god forbid), and by luck we ran into Dani's wonderful beau (Matt) at Safeway where he and his partner were grabbing some food (Matt's an EMT; partner Clay is a medic).
Now we're settled into our hotel room, getting ready for bed, and our plan is to meet Dani and Matt for breakfast tomorrow morning. And if all goes as planned, we'll be meeting up with Deborah and Whit tomorrow in Aptos...maybe do a hike, but at very least we'll spend some time and maybe have dinner before we head back over the hill.
So very exciting... my first steps back toward some sort of normalcy. Feels really good. Hope to have many more of these reports for you in the months to come.
Love you guys. /ab
Wednesday, April 14, 2010
Wish me luck!
Going in tomorrow morning for round two of my new chemotherapy (Avastin). Tolerated round one very well; no reason to think round two won't go well. Still, it's likely to be a long day: labs at 10:00, then (if I'm lucky), treatment starts at 11:00. Hopefully we can be out of there by 1:00, but I'm not holding my breath.
Dani will be heading up tomorrow (Thursday) after class to spend a couple days with us (me and Kirk), which makes us quite happy, as you can imagine. And Kirk and I are going to be trying very hard to make our way down to see Dani in the Monterey area -- maybe even this weekend, since this would give us a chance to see Dani at her regular Sunday gig at SlyMcFly's. Plus we could get a visit in with my sister and brother-in-law, too (we haven't seen them in ages).
Okay...keep good thoughts for us!
Love you guys. /ab
Dani will be heading up tomorrow (Thursday) after class to spend a couple days with us (me and Kirk), which makes us quite happy, as you can imagine. And Kirk and I are going to be trying very hard to make our way down to see Dani in the Monterey area -- maybe even this weekend, since this would give us a chance to see Dani at her regular Sunday gig at SlyMcFly's. Plus we could get a visit in with my sister and brother-in-law, too (we haven't seen them in ages).
Okay...keep good thoughts for us!
Love you guys. /ab
Thursday, April 8, 2010
Food and scrapbooking
Hi all,
Had a fun, yummy dinner with Jon and Christa and Kirk on Tuesday night. Jon cooked fried matzoh -- a seasonal favorite of mine (and of most folks of Jewish heritage) -- and Jon makes about the best fried matzoh around. Seriously. He's really mastered the recipe, so it was a huge treat to have that for dinner...along with lots of other great food.
After dinner we spent time going through family photographs: Christa has been working with me to create scrapbooks/memory albums of my life, my daughter's life, my family's life -- which is really a gift to me, since I'm not an organized person, have never been good about keeping photo albums, that sort of thing. And when I say Christa's been working with me, well, really she's been doing all the work. She's incredibly organized, has great vision for how to organize these photos, and I'm so excited that, thanks to Christa, Dani will have these pictures turned into a story that is a real representation of her life from my pregnancy to the present. Plus will include pictures from before she was born -- my childhood, my parents, my ancestors. Pretty cool, huh?
Nothing much new to report re: health matters just yet. I do think I'm feeling a bit better, more clear-headed, presumably because the Avastin (the chemotherapy) is having some good effect? (We hope, we hope.) The docs haven't been willing to taper my steroid dose yet but hope that will happen soon, especially since I'm getting fat as a cow from the continued high steroid dosage. (Think the weight gain isn't depressing me? Guess again...) Really hope they let me start tapering this week...
Thanks for all the emails I've gotten over the past week; it's been so nice to hear from you guys and I promise I will respond to your emails soon. I would love to take you guys up on offers for visits, especially if it does seem like my strength/stamina are returning. The next few days are pretty busy for me, and there's a chance (if my strength does, in fact continue to rebound a bit) that Kirk and I will try to head to Monterey to spend some time with my daughter, and maybe get a visit in with my sister and her husband down in Aptos, since it's been a while since we've gotten to see them.
Love to you all,
/ab
Had a fun, yummy dinner with Jon and Christa and Kirk on Tuesday night. Jon cooked fried matzoh -- a seasonal favorite of mine (and of most folks of Jewish heritage) -- and Jon makes about the best fried matzoh around. Seriously. He's really mastered the recipe, so it was a huge treat to have that for dinner...along with lots of other great food.
After dinner we spent time going through family photographs: Christa has been working with me to create scrapbooks/memory albums of my life, my daughter's life, my family's life -- which is really a gift to me, since I'm not an organized person, have never been good about keeping photo albums, that sort of thing. And when I say Christa's been working with me, well, really she's been doing all the work. She's incredibly organized, has great vision for how to organize these photos, and I'm so excited that, thanks to Christa, Dani will have these pictures turned into a story that is a real representation of her life from my pregnancy to the present. Plus will include pictures from before she was born -- my childhood, my parents, my ancestors. Pretty cool, huh?
Nothing much new to report re: health matters just yet. I do think I'm feeling a bit better, more clear-headed, presumably because the Avastin (the chemotherapy) is having some good effect? (We hope, we hope.) The docs haven't been willing to taper my steroid dose yet but hope that will happen soon, especially since I'm getting fat as a cow from the continued high steroid dosage. (Think the weight gain isn't depressing me? Guess again...) Really hope they let me start tapering this week...
Thanks for all the emails I've gotten over the past week; it's been so nice to hear from you guys and I promise I will respond to your emails soon. I would love to take you guys up on offers for visits, especially if it does seem like my strength/stamina are returning. The next few days are pretty busy for me, and there's a chance (if my strength does, in fact continue to rebound a bit) that Kirk and I will try to head to Monterey to spend some time with my daughter, and maybe get a visit in with my sister and her husband down in Aptos, since it's been a while since we've gotten to see them.
Love to you all,
/ab
Saturday, April 3, 2010
Zack's Pizza
Jon and I had dinner with Alison and Kirk last night. Alison was still very tired from her busy Thursday (first chemo infusion day - 7 hours + benadryl) and her pulmonary evaluation and function tests on Friday. Some good news: she had an uneventful chemo experience with no noticeable issues and her pulmonary function tests were normal and her overall pulmonary status was good! Yeah! Her medical team thinks that her pulmonary issues (remember she was hospitalized for 11 days with "pneumonitis") was an adverse effect of the Temodar (the chemo she was on while having her radiation therapy). The current plan is to have an Avastin (chemo) infusion every other Thursday (should be much shorter visits).
Alison is looking forward to feeling stronger and getting out and about more. She definitely wants to spend more quality time with her daughter Dani. Alison and I are working on a photo project and once we get her lifetime of photos sorted, we will do some journaling, etc. Jon has installed a webcam on Alison's computer and "hopefully" those of us with video chat available will be able to have face to face visits via computer (better than no personal connection at all).
A funny little story about dinner: we brought up a Zachary's deep dish Chicogo style pizza (a Berkeley landmark) which pleased them very much only to find out that Kirk had NEVER had Zachary's before. There is a first time for everything! OK, that's it for now. Thanks for staying connected!
cj
Alison is looking forward to feeling stronger and getting out and about more. She definitely wants to spend more quality time with her daughter Dani. Alison and I are working on a photo project and once we get her lifetime of photos sorted, we will do some journaling, etc. Jon has installed a webcam on Alison's computer and "hopefully" those of us with video chat available will be able to have face to face visits via computer (better than no personal connection at all).
A funny little story about dinner: we brought up a Zachary's deep dish Chicogo style pizza (a Berkeley landmark) which pleased them very much only to find out that Kirk had NEVER had Zachary's before. There is a first time for everything! OK, that's it for now. Thanks for staying connected!
cj
Thursday, April 1, 2010
Quick update
Hi all,
I've kind of gotten behind in reading my blog (haven't read the blog since Friday), let alone posting, so thanks to Deborah for keeping folks updated over the past couple of days, since there HAS been news worthy of posting.
I'm getting ready to head out for my first chemo infusion, to be honest, and I've got a lot of anxiety about it, given that I just haven't had the best luck so far with my treatments. So all of you need to send extra good vibes my way that I'll tolerate this chemo well and get quick results.
Treatment should take about 3 hours total (ugh) with all the prep stuff and then they'll do my first chemo infusion slowly to make sure I don't get a bad reaction. If I'm up to it, I'll send an email later today to let you know how I feel after the infusion, but most likely I'll get Kirk or (since he's got plenty on his plate) one of my siblings to report back to you.
As I said, keep all good thoughts for me over today and the coming days. I can use all the help I can get right now.
(And thanks, by the way, for all the wonderful emails, blog postings, cards and messages, and unbelievably generous PTO donations. They mean the world to me.)
Love to all of you... /ab
I've kind of gotten behind in reading my blog (haven't read the blog since Friday), let alone posting, so thanks to Deborah for keeping folks updated over the past couple of days, since there HAS been news worthy of posting.
I'm getting ready to head out for my first chemo infusion, to be honest, and I've got a lot of anxiety about it, given that I just haven't had the best luck so far with my treatments. So all of you need to send extra good vibes my way that I'll tolerate this chemo well and get quick results.
Treatment should take about 3 hours total (ugh) with all the prep stuff and then they'll do my first chemo infusion slowly to make sure I don't get a bad reaction. If I'm up to it, I'll send an email later today to let you know how I feel after the infusion, but most likely I'll get Kirk or (since he's got plenty on his plate) one of my siblings to report back to you.
As I said, keep all good thoughts for me over today and the coming days. I can use all the help I can get right now.
(And thanks, by the way, for all the wonderful emails, blog postings, cards and messages, and unbelievably generous PTO donations. They mean the world to me.)
Love to all of you... /ab
Wednesday, March 31, 2010
Starting Avastin
Alison had the chest CT tests done on Monday (chest CT angiogram and spiral CT). The report from Kirk is that whatever the inflammation in her lungs that was going on a month and more ago now seems to be resolved. Kirk reports that her endurance is better, she is less winded, but still taking lots of naps. She'll have another follow-up with the pulmonary specialist at the end of the week, hopefully to put the whole episode of shortness of breath/lung inflammation into some perspective as to what and why this happened (best guess at the moment is that it was a nasty side effect of the last chemo drug, Temodar).
So, with her lungs being "cleared" from the medical point of view, she will have her first treatment with Avastin tomorrow. It's an IV infusion, and we hear that most folks tolerate the drug well. Here is a link (admittedly from the manufacturer) that explains how this new type of drug works (you can copy and paste into your browser if you are curious): http://www.avastin.com/avastin/patient/gbm/about/thought/index.m
Here's wishing her the best tomorrow, that the infusion goes smoothly, and most importantly - that it WORKS!
So, with her lungs being "cleared" from the medical point of view, she will have her first treatment with Avastin tomorrow. It's an IV infusion, and we hear that most folks tolerate the drug well. Here is a link (admittedly from the manufacturer) that explains how this new type of drug works (you can copy and paste into your browser if you are curious): http://www.avastin.com/avastin/patient/gbm/about/thought/index.m
Here's wishing her the best tomorrow, that the infusion goes smoothly, and most importantly - that it WORKS!
Saturday, March 27, 2010
Sorting out her shortness of breath
I got the update from Kirk about the medical visits this week, besides UCSF (see prior post). Alison met with her new medical oncologist yesterday(he directs the chemo) and he has coordinated with the pulmonary (lung) specialist to make a plan. We hear very positive reports in her confidence in this oncologist.
On Monday (3/29), Alison will have CT scans to look at lung status and especially blood vessel status in the lungs (spiral CT and CT angiogram). The idea, I believe, is to see if additional tests need to be done if there is still inflammation in the lungs, and to see if there is any clot in the blood vessels of the lung that could account for symptoms such as the shortness of breath and overall difficulties with poor endurance, fatigue and faster than normal heart rate that she has been having. I'm not clear what findings would be a "deal-breaker" before starting the Avastin, but the medical oncologists want a better handle on her lung status. Avastin is a relatively recent anti-cancer drug, and works specifically on blocking blood vessels that feed a tumor, so the issue about clots and regenerating blood vessels is pertinent. You know that her hospitalization at the end of treatment last time involved this mysterious involvement of lungs and inflammation, and nothing definitive was found at that time.
I know Alison is anxious to get going with treatment, so let's cross our fingers that the tests let her move forward with her treatment.
On Monday (3/29), Alison will have CT scans to look at lung status and especially blood vessel status in the lungs (spiral CT and CT angiogram). The idea, I believe, is to see if additional tests need to be done if there is still inflammation in the lungs, and to see if there is any clot in the blood vessels of the lung that could account for symptoms such as the shortness of breath and overall difficulties with poor endurance, fatigue and faster than normal heart rate that she has been having. I'm not clear what findings would be a "deal-breaker" before starting the Avastin, but the medical oncologists want a better handle on her lung status. Avastin is a relatively recent anti-cancer drug, and works specifically on blocking blood vessels that feed a tumor, so the issue about clots and regenerating blood vessels is pertinent. You know that her hospitalization at the end of treatment last time involved this mysterious involvement of lungs and inflammation, and nothing definitive was found at that time.
I know Alison is anxious to get going with treatment, so let's cross our fingers that the tests let her move forward with her treatment.
Wednesday, March 24, 2010
Update - March 24, 2010
Team Alison:
Today Alison had her follow-up appointments (MRI, neuro-oncologist). Brain scan shows that 1 area of tumor appears to have died, 1 area appears to show no growth but 1 area is slightly increased. Future plans include some new chemo (Avastin) pending approval from her pulmonary team (resolution of her February lung issues that had her hospitalized for 11 days). She is every optomistic and she is ready to face tomorrow's challenges.
We all appreciate that you continue sending her your loving thoughts and acts of loving kindness.
cj, Jon, and Deborah
Today Alison had her follow-up appointments (MRI, neuro-oncologist). Brain scan shows that 1 area of tumor appears to have died, 1 area appears to show no growth but 1 area is slightly increased. Future plans include some new chemo (Avastin) pending approval from her pulmonary team (resolution of her February lung issues that had her hospitalized for 11 days). She is every optomistic and she is ready to face tomorrow's challenges.
We all appreciate that you continue sending her your loving thoughts and acts of loving kindness.
cj, Jon, and Deborah
Tuesday, March 16, 2010
Not much to say, but...
Been a while since my last post and, unfortunately, that's largely because I've sort of been under the weather again. Don't mean to whine, but just can't seem to stay healthy and don't know why. Nothing serious, but running low-grade fevers and my energy level is pretty low. Back to see my doctor today and had labs done (results back tomorrow or the next day). Nothing obvious going on that the doctor could see; hopefully the lab results will tell us something conclusive (and nothing serious), although, historically, so far we haven't have a lot of luck with getting answers to the medical questions.
On a more upbeat note, looking forward to a visit from my dad and his wife this weekend, which means we'll also be seeing other family members -- brother and sister-in-law and, hopefully, sister and brother-in-law. Missing my daughter, whose been kept busy with studying for mid-terms and writing term papers and all that fun stuff. At least she's got spring break coming next week so I'll get to spend some time with her soon. Had a nice visit from one of the nurses I worked with at the ICN, Cindy Hunt, who was kind enough to bring a care package of some yummy and healthy food, plus spent a little time visiting with me and catching me up on events at work.
So that's all I've got for now. I'll try to do better about keeping you guys updated more regularly, or getting one of my siblings or daughter to help me out when I fall down on the job.
Love to all, /ab
On a more upbeat note, looking forward to a visit from my dad and his wife this weekend, which means we'll also be seeing other family members -- brother and sister-in-law and, hopefully, sister and brother-in-law. Missing my daughter, whose been kept busy with studying for mid-terms and writing term papers and all that fun stuff. At least she's got spring break coming next week so I'll get to spend some time with her soon. Had a nice visit from one of the nurses I worked with at the ICN, Cindy Hunt, who was kind enough to bring a care package of some yummy and healthy food, plus spent a little time visiting with me and catching me up on events at work.
So that's all I've got for now. I'll try to do better about keeping you guys updated more regularly, or getting one of my siblings or daughter to help me out when I fall down on the job.
Love to all, /ab
Sunday, March 7, 2010
Stronger every day
Have had a good couple of days. Can now make it up the full flight of stairs without stopping and without getting overly winded. Yay, hooray.
I've tapered my decadron dose again, so I'm now taking one mg three times a day. Pretty big change from my original 16 mg/day. I'm hoping I'll start to see a real difference in my appetite over the next weeks. What a relief that will be.
I had a really nice visit today from my aunt Barbara, my mom's youngest sister. (Shhhh...She was always my "favorite aunt," and although we haven't seen much of one another in many years, or even had much contact, she's an important person in my life.) She's driving down to Southern California from Olympia, Washington, and made a side trip to visit me. Barbara, Kirk, and I did some hanging out at the house and then walked for a bit in Tilden Park, where I continued to show my improved physical endurance and walked for probably 2/3 of a mile. (So I'm feeling pretty good about that.)
Watched the Oscars, talked briefly to Deborah for the first time in almost a week (she's been at a choral convention singing her little heart out), and am waiting to hear from Dani, who's off singing HER little heart out at her regular Sunday night gig.
So that's all there is to report for now. I'm liking this trend of getting stronger, feeling better...
Love to you all,
/ab
I've tapered my decadron dose again, so I'm now taking one mg three times a day. Pretty big change from my original 16 mg/day. I'm hoping I'll start to see a real difference in my appetite over the next weeks. What a relief that will be.
I had a really nice visit today from my aunt Barbara, my mom's youngest sister. (Shhhh...She was always my "favorite aunt," and although we haven't seen much of one another in many years, or even had much contact, she's an important person in my life.) She's driving down to Southern California from Olympia, Washington, and made a side trip to visit me. Barbara, Kirk, and I did some hanging out at the house and then walked for a bit in Tilden Park, where I continued to show my improved physical endurance and walked for probably 2/3 of a mile. (So I'm feeling pretty good about that.)
Watched the Oscars, talked briefly to Deborah for the first time in almost a week (she's been at a choral convention singing her little heart out), and am waiting to hear from Dani, who's off singing HER little heart out at her regular Sunday night gig.
So that's all there is to report for now. I'm liking this trend of getting stronger, feeling better...
Love to you all,
/ab
Tuesday, March 2, 2010
Lots of news
Busy, busy morning for me and Kirk. Up early so that we could got get my CT scan of my upper lungs 7:45 am. Then a 10:00 echocardiogram. Then the 11:30 appointment with Dr. Kury, the pulmonologist to review results of my CT tests. Exhausting morning, but good to get all of that out of the way.
Preliminary report: all good news. The echocardiogram showed a small amount of pericardial effusion (fluid around the heart) but nothing that seemed significant. My primary care doc will get more complete results and call me soon. The CT scan of my lungs still showed something there, but she thought there was improvement. One glitch was that prior CTs were high resolution (1mm slices) and this was 5mm resolution, so Dr. Kury was happy that the results showed improvement, but said a 5mm vs. 1mm would look better ... but still, improvement.
So yay, hooray! The current plan is to continue doing nothing in particular in terms of doctors appointments and treatments until after my next MRI at UCSF. I've got nothing obvious to worry me for the next few weeks (other than all the legal / financial / personal business I've still not attended to!) and I can start making plans for doing some fun and relaxing stuff as my stamina allows. I'll definitely be needing a little more physical conditioning before I take on any challenges (i.e., road trips and overnight travel), but given how I felt after today's afternoon nap, I think I'll be able to start moving toward having some fun in the very near future.
So ever onward. Excited to maybe, finally, start feeling like a person and not a patient. Keep your fingers crossed for me, eh? (that's my Canadian inflection from the Olympics!)
Big hugs; lots of love to all my many supporters,
/ab
Preliminary report: all good news. The echocardiogram showed a small amount of pericardial effusion (fluid around the heart) but nothing that seemed significant. My primary care doc will get more complete results and call me soon. The CT scan of my lungs still showed something there, but she thought there was improvement. One glitch was that prior CTs were high resolution (1mm slices) and this was 5mm resolution, so Dr. Kury was happy that the results showed improvement, but said a 5mm vs. 1mm would look better ... but still, improvement.
So yay, hooray! The current plan is to continue doing nothing in particular in terms of doctors appointments and treatments until after my next MRI at UCSF. I've got nothing obvious to worry me for the next few weeks (other than all the legal / financial / personal business I've still not attended to!) and I can start making plans for doing some fun and relaxing stuff as my stamina allows. I'll definitely be needing a little more physical conditioning before I take on any challenges (i.e., road trips and overnight travel), but given how I felt after today's afternoon nap, I think I'll be able to start moving toward having some fun in the very near future.
So ever onward. Excited to maybe, finally, start feeling like a person and not a patient. Keep your fingers crossed for me, eh? (that's my Canadian inflection from the Olympics!)
Big hugs; lots of love to all my many supporters,
/ab
Sunday, February 28, 2010
Sunday night update
It's been a few days since my last update so I'll see what news there is to share.:
Each day I'm seeing small progress in my stamina and physical strength, but it's frustratingly slow. Such a drag that it takes so little to break down muscle and so much to build it up. Kirk and I are walking pretty much every day (as weather allows), and the stairs at home are always there as a form of exercise I'm required to take multiple times daily.
I saw my wonderful primary care physician (Dr. Peter Candell) on Friday and he had some concerns that we're addressing this week with a new battery of medical tests. Hoping his concerns are unfounded; will know more after tests on Tuesday. I will, of course, keep you guys posted.
Kirk and I have had Olympic fever over the past two weeks and although I'll be sorry to see the games end, I'm actually ready to spend less time in front of the TV. Hoping the end of the Olympics coincides with my increased stamina so that Kirk and I can finally spend some time enjoying activities with family and friends. This life-as-a-patient thing sucks.
I'm starting to taper my decadron (steroids) dose, so hope to see a decrease in my still pretty-voracious appetite. I spend way too much time thinking about food and figuring out ways to satisfy the food-beast within. And since Kirk is the person providing the food (most of it, anyways), I'd love to give him a break. (And, yes, I guess I just hinted that we'd accept offers of food from our friends.) :-)
Oh, and two other things: People who are still having trouble with posting to the blog, please contact my brother, Jon, at jbronstein2000@gmail.com for assistance -- whether it's having trouble posting or having trouble posting with your own name, or any of those kinds of things. And people who are trying to reach me by mail should address it to me at 51 Stevenson Ave., Berkeley 94708. And I presume you know my email: ajbronstein@gmail.com
Okay, I think that's it for now. Thanks for thinking of me. Love you guys, /ab
Each day I'm seeing small progress in my stamina and physical strength, but it's frustratingly slow. Such a drag that it takes so little to break down muscle and so much to build it up. Kirk and I are walking pretty much every day (as weather allows), and the stairs at home are always there as a form of exercise I'm required to take multiple times daily.
I saw my wonderful primary care physician (Dr. Peter Candell) on Friday and he had some concerns that we're addressing this week with a new battery of medical tests. Hoping his concerns are unfounded; will know more after tests on Tuesday. I will, of course, keep you guys posted.
Kirk and I have had Olympic fever over the past two weeks and although I'll be sorry to see the games end, I'm actually ready to spend less time in front of the TV. Hoping the end of the Olympics coincides with my increased stamina so that Kirk and I can finally spend some time enjoying activities with family and friends. This life-as-a-patient thing sucks.
I'm starting to taper my decadron (steroids) dose, so hope to see a decrease in my still pretty-voracious appetite. I spend way too much time thinking about food and figuring out ways to satisfy the food-beast within. And since Kirk is the person providing the food (most of it, anyways), I'd love to give him a break. (And, yes, I guess I just hinted that we'd accept offers of food from our friends.) :-)
Oh, and two other things: People who are still having trouble with posting to the blog, please contact my brother, Jon, at jbronstein2000@gmail.com for assistance -- whether it's having trouble posting or having trouble posting with your own name, or any of those kinds of things. And people who are trying to reach me by mail should address it to me at 51 Stevenson Ave., Berkeley 94708. And I presume you know my email: ajbronstein@gmail.com
Okay, I think that's it for now. Thanks for thinking of me. Love you guys, /ab
Wednesday, February 24, 2010
Great news; great night
Well, it's been a long time since I've had it in me to add my thoughts to the blog. Just too tired most of the time; my extended hospitalization really took it out of me -- most especially because I had about 10 days for all my muscles to atrophy and the recovery of those muscles is a slow, slow process. But I'm working on strengthening my muscles every day, trying to walk increasing distances, especially vertically, so that I can get back to a more normal kind of existence.
Those of you who've read yesterday's blog have seen that I had some pretty great news yesterday which made the day pretty emotional for me. I've been feeling pretty good overall, and so I was generally optimistic that the news from the oncologist was going to be good but I was a little afraid to be too hopeful, for obvious reasons. I'm so incredibly relieved by the news, and so is my family. We had a wonderful celebratory/birthday dinner with Kirk, Dani, Deborah, and Jen joining me in my happy, happy night. Completely went of the ketogenic diet (fun for me!) and just enjoyed myself. Much merriment; much silliness ensued. And, yes, I cried off and on, from just being so damned happy and relieved. (But then, anyone who knows me well know that crying is one of my favorite things to do when I'm happy, so you guys can just deal with it.)
Kirk and I are going to be making plans over the next days/week, figure out what our priorities are and how we make the most of our "month off." Hoping for a lovely Bronstein-Mitchel retreat to someplace lovely and relaxing, among other things. Meanwhile, I'll try to keep up with the blog myself, as much as possible, and will hope I can also have some occasional face-to-face visits with some of my wonderful friends who've been so steadfast in your support throughout this ordeal.
Love you guys,
/ab
Those of you who've read yesterday's blog have seen that I had some pretty great news yesterday which made the day pretty emotional for me. I've been feeling pretty good overall, and so I was generally optimistic that the news from the oncologist was going to be good but I was a little afraid to be too hopeful, for obvious reasons. I'm so incredibly relieved by the news, and so is my family. We had a wonderful celebratory/birthday dinner with Kirk, Dani, Deborah, and Jen joining me in my happy, happy night. Completely went of the ketogenic diet (fun for me!) and just enjoyed myself. Much merriment; much silliness ensued. And, yes, I cried off and on, from just being so damned happy and relieved. (But then, anyone who knows me well know that crying is one of my favorite things to do when I'm happy, so you guys can just deal with it.)
Kirk and I are going to be making plans over the next days/week, figure out what our priorities are and how we make the most of our "month off." Hoping for a lovely Bronstein-Mitchel retreat to someplace lovely and relaxing, among other things. Meanwhile, I'll try to keep up with the blog myself, as much as possible, and will hope I can also have some occasional face-to-face visits with some of my wonderful friends who've been so steadfast in your support throughout this ordeal.
Love you guys,
/ab
Happy birthday, Kirk!
Hallelujah! Alison's MRI scan shows no progression of the tumors and obvious improvement in the brain swelling. Because of the issue Alison had with her last hospital admission - the lung involvement, which is still unexplained in terms of cause - Dr. Chang wants to hold off on any treatment for now, until her lungs are fully cleared. Her reasoning has to do with Temodar (or any of the chemotherapy agents) having a propensity to cause lung inflammation. So Dr. Chang's recommendation is to have Alison follow up with her planned chest CT scan, make sure that the lungs are healing up, and take a month off any new medications. In fact, she blessed the plan to continue to decrease the decadron (steroids), meaning Alison's immune system has a chance to fully re-charge. Dr. Chang reviewed the MRI (which she now considers the new "baseline", or best MRI yet) with Alison, Kirk, Dani and me, and generally was wonderfully encouraging to Alison to keep up her program to gain her strength back and do "what she wants" over the next month. Then, in a month, a new MRI and another discussion.
Kirk could not have gotten better news on his birthday, so we took the pair out to dinner, joined by Like-A-Daughter (LAD) Jen. Alison looked tired but happy, which she sometimes expresses by crying - you might need a program to know what the underlying emotion is with the crying, but hey - we knew. I'm hoping she had a great, righteous sleep last night!
Kirk could not have gotten better news on his birthday, so we took the pair out to dinner, joined by Like-A-Daughter (LAD) Jen. Alison looked tired but happy, which she sometimes expresses by crying - you might need a program to know what the underlying emotion is with the crying, but hey - we knew. I'm hoping she had a great, righteous sleep last night!
Tuesday, February 23, 2010
UCSF day
Hi all, Alison has a long day, starting with labs and final visit with her radiation oncologist. Then to UCSF this afternoon for MRI and a visit late afternoon with Dr. Chang, her neurooncologist, to get those results and hear her recommendations.
Keep your fingers crossed for her!
Keep your fingers crossed for her!
Saturday, February 20, 2010
A Medical Detour
Hopefully, Alison is having a smooth day today. Yesterday, I got an early call because AB was having excruciating knee pain. After some discussion, we had concerns that she could have a blood clot in her leg. She ended up with a doctor's appointment and then a test to look for clot (duplex ultrasound) and thank goodness, it was negative (NO blood clot). So while relieved, it did take a big chunk out of her day, filled with worry. She says it's so hard to be a "patient" all the time, and of course, when one's condition makes things like blood clots a reasonable possibility, there's plenty to stay worried about. We really don't have a definite explanation for what hurt so much, and now seems better - maybe a flare of inflammation as her steroid dose is decreased? She is still physically weak after her 10 day hospitalization, so her reserves are depleted. BUT, she is working on increasing her activity, getting strength back into her muscles. She looked pretty good when I saw her. Daughter Dani was there for a visit, so I know her spirits will be raised with that bubbly one there.
Next planned medical outing is Tuesday at UCSF. She will have a new MRI to see where things stand, and then an appointment with the neuro-oncologist there. For now, a smooth, event-free weekend would be welcome!
Next planned medical outing is Tuesday at UCSF. She will have a new MRI to see where things stand, and then an appointment with the neuro-oncologist there. For now, a smooth, event-free weekend would be welcome!
Tuesday, February 16, 2010
Home At Last
Alison is on her way home, finally! 10 days at Alta Bates, and she is oh-so-ready to be back in her nest. Kirk says she is going home with a couple of anti-infection meds despite the report that really NOTHING has shown up as the cause of the fevers and lung involvement. It may be this is reaction to the Temodar she was on. In any case, it is a prudent plan to keep her on the medicines since there are still a couple of slow-growing bugs where cultures haven't been reported yet (aspergillosis, legionella). Chances are good that this was a fever and lung reaction where a source will never be found.
Home to sleep in her own bed, see her cat, watch the birds, eat non-hospital food, snuggle Kirk - a GOOD DAY. Yay, Alison!
And Childrens Oakland buddies, we are still feeling all that love for you, now and forever (see previous post)...
Home to sleep in her own bed, see her cat, watch the birds, eat non-hospital food, snuggle Kirk - a GOOD DAY. Yay, Alison!
And Childrens Oakland buddies, we are still feeling all that love for you, now and forever (see previous post)...
Sunday, February 14, 2010
Valentine's Day - special thanks to CHO friends
Today is Day 8 at Alta Bates, and Alison had hoped she would have been discharged today. It sounds (via Christa and Jon's info) that she is down to an anti-fungal medication in her IV. She is off the second antibiotic, and off oxygen as of today. Her fever has finally resolved. From what Christa said, the plan is for likely discharge tomorrow - and I know Alison is really ready to be home. There isn't a clear source for her fever and shortness of breath, but the final cultures (from the bronschoscopy) aren't in and may yet have the answers.
On behalf of Alison, to her friends and colleagues at Childrens Oakland: Please know that your generosity of gifts of your PTO to Alison has touched her beyond what words can express. Having her employment status furthered in this way - and keeping her benefits intact - is a testament to how Alison touches lives, but it speaks volumes about the character of the people that Alison works with. You all are truly heroes - always in the work you do, but also in the way you have taken care of one of your own. Please accept our gratitude, from the bottom of our hearts. Happy Valentines Day to all those who make this world a better place, and whose kindness is anonymous and heartfelt. Love to you from Alison's family!
Jon and Christa added:
We echo Deborah's gratitude to all her thoughtful and generous work team members!
We had a brief visit with Alison tonight. She is doing fairly well, stable on room air, pretty cheery, and waiting for her man to come and watch the Olympics with her. The "unknown-ness" of this setback is very frustrating and "hospitalitis" has set in (interrupted sleep, medication scheduling issues, etc.).
We are all wishing and hoping that tomorrow is the day she can go back home. Her treatment free "window" is rapidly closing and her goals for this time are NOT happening (weekend in Monterey with Kirk, family weekend in PS with us, etc.). Can a girl catch a break, please!
On behalf of Alison, to her friends and colleagues at Childrens Oakland: Please know that your generosity of gifts of your PTO to Alison has touched her beyond what words can express. Having her employment status furthered in this way - and keeping her benefits intact - is a testament to how Alison touches lives, but it speaks volumes about the character of the people that Alison works with. You all are truly heroes - always in the work you do, but also in the way you have taken care of one of your own. Please accept our gratitude, from the bottom of our hearts. Happy Valentines Day to all those who make this world a better place, and whose kindness is anonymous and heartfelt. Love to you from Alison's family!
Jon and Christa added:
We echo Deborah's gratitude to all her thoughtful and generous work team members!
We had a brief visit with Alison tonight. She is doing fairly well, stable on room air, pretty cheery, and waiting for her man to come and watch the Olympics with her. The "unknown-ness" of this setback is very frustrating and "hospitalitis" has set in (interrupted sleep, medication scheduling issues, etc.).
We are all wishing and hoping that tomorrow is the day she can go back home. Her treatment free "window" is rapidly closing and her goals for this time are NOT happening (weekend in Monterey with Kirk, family weekend in PS with us, etc.). Can a girl catch a break, please!
Thursday, February 11, 2010
Bumps in the road
From the gal where every day brings new excitement, here is latest: her fevers persist (in the 99s and 100s, but not higher) but she seems to have more and more shortness of breath and low oxygen levels. This is now 8 days of unexplained fever, despite antibiotics and the usual work-up for cancer patients with fever. There is now an Infectious Disease (I.D.)specialist on her case, which is a good thing -these folks are really slick at finding what the cause is. He has ordered a bunch of specific labs, ordered a chest and neck CT/CAT scans, because neck gland swelling is another recent development. The chest CT came back with scattered "particulate matter", so now Alison is scheduled to have a bronchoscopy this afternoon - that's the test where the doc looks down the respiratory tract and can take samples for culture, or a biopsy if that were needed. This might be the source of the fever as well as the cause of her low oxygen levels. As of a few minutes ago, she still hadn't gone down for the procedure, and once it is done, we probably won't have any answers right away because the samples have to be sent to the lab for growth, analysis and such. But at least we have some answers on the way. The ID doc did start her on some different antibiotics. If this is fungal, of course that will change yet again. Poor sweetie, she has her oxygen on because without it her levels drop too low. She is napping a lot, and glad for her quiet, private room.
Despite all of this, she remains in decent spirits. She is relieved to be there at the hospital, rather than running back and forth to the ER, and she speaks highly of the nursing care. While she is not a fan of the food, the insult-to-injury today is that she can't eat at all until the bronchoscopy is done. And although her hunger Beast is much better, that's still a long time for her not to eat! Kirk has food ready to toss to her as soon as she is cleared to eat...
So this is obviously an unfortunate bump in her road - she was hoping this was the week to get stronger coming off the radiation and chemo, and she had the trips to Monterey and Palm Springs planned. For now, she is aiming just to get this fever stuff sorted out, treated and put behind her. Kirk, Jon and Christa have kept her company at various times, but please keep sending her your good thoughts! She can use all manner of good energy sent her way.
Love, Deborah
Despite all of this, she remains in decent spirits. She is relieved to be there at the hospital, rather than running back and forth to the ER, and she speaks highly of the nursing care. While she is not a fan of the food, the insult-to-injury today is that she can't eat at all until the bronchoscopy is done. And although her hunger Beast is much better, that's still a long time for her not to eat! Kirk has food ready to toss to her as soon as she is cleared to eat...
So this is obviously an unfortunate bump in her road - she was hoping this was the week to get stronger coming off the radiation and chemo, and she had the trips to Monterey and Palm Springs planned. For now, she is aiming just to get this fever stuff sorted out, treated and put behind her. Kirk, Jon and Christa have kept her company at various times, but please keep sending her your good thoughts! She can use all manner of good energy sent her way.
Love, Deborah
Wednesday, February 10, 2010
Day 4 at Alta Bates...
Brother Jon here…
As of Wednesday morning, AB is still in the hospital -- she has moved beds a few times and has now settled in a private (and much quieter) room on the 4th floor. Christa visited her on Monday, and I came on Tuesday, (and of course, Kirk is there endlessly.) Her spirits are good, but she is very tired, and we are just hoping to figure out what has been going on so she can come home. Hospitals are no place to recover!
She is finishing up her third day of IV antibiotics -- which is the typical course (I think. But what would I know… I know more about computer viruses than the real things!) and we are really hoping that she gets discharged today. But I would not be surprised if they hold her one more day. Christa and I are planning to visit again and get the latest information… and we promise to share it as soon as it is available!
There really isn’t too much other information to offer right now. Kirk and Alison had originally planned for a get-away in Monterey this weekend, but that does not seem in the cards. We still have a tentative field trip planned down to Palm Springs for the weekend after, but it is all one day at a time right now.
On another note, Lara has given me g-d like privileges on the blog, so if you are having any issues, please feel free to contact me at jbronstein2000@gmail.com and I will try to help you. I quit my job at Philips this week, and have nothing but time on my hands!
As of Wednesday morning, AB is still in the hospital -- she has moved beds a few times and has now settled in a private (and much quieter) room on the 4th floor. Christa visited her on Monday, and I came on Tuesday, (and of course, Kirk is there endlessly.) Her spirits are good, but she is very tired, and we are just hoping to figure out what has been going on so she can come home. Hospitals are no place to recover!
She is finishing up her third day of IV antibiotics -- which is the typical course (I think. But what would I know… I know more about computer viruses than the real things!) and we are really hoping that she gets discharged today. But I would not be surprised if they hold her one more day. Christa and I are planning to visit again and get the latest information… and we promise to share it as soon as it is available!
There really isn’t too much other information to offer right now. Kirk and Alison had originally planned for a get-away in Monterey this weekend, but that does not seem in the cards. We still have a tentative field trip planned down to Palm Springs for the weekend after, but it is all one day at a time right now.
On another note, Lara has given me g-d like privileges on the blog, so if you are having any issues, please feel free to contact me at jbronstein2000@gmail.com and I will try to help you. I quit my job at Philips this week, and have nothing but time on my hands!
Monday, February 8, 2010
Fever Update
I talked to mom a few times tonight and she says she's feeling much better; she's definitely sounding that way, too. For the few days that she was at home with the fever she was pretty quiet and seemed very tired, frustrated, and just "down" in general. She was much more chatty when I spoke with her this evening, which was encouraging for both of us. She says she's been feeling much better since she started the antibiotics and is once again cursing the hospital for being a place of little or no sleep. But she's fine with being there, all-in-all, and was all tucked in to read her book and (attempt) sleep when I spoke with her around 9:30p.m.
Thinking healthy, restful thoughts for my wonderful, wonderful mom, and so thankful she has all of you to provide such strong support.
-Dani
Sunday, February 7, 2010
Fever
Alison is currently in the hospital at Alta Bates to treat a fever that she has had for the last 3 days. It hasn't been very high, and the only symptom with it seems to be profound fatigue. Last night, Kirk determined that her throat looked pretty red, and they went to the ER. Because the blood work seemed to indicate possible bacterial infection (not a change in the total white blood cell count, but the type of cells that showed up are the kind that fight bacteria - a left shift, for our medical folks), they admitted her and started her on antibiotics (vancomycin). She and Kirk were up all night (he bemoans the fact that their Saturday nights seem to include trips to the ER), and we hope she is resting now.
Not great timing, as Dad and Judy traveled up this weekend to see her. A different kind of visit, I suppose. For her fans, the hospitals discourage or disallow flowers for patients who are immunocompromised, and the only allowable balloons are mylar and she isn't really crazy about those, so please send your good wishes on the blog or via card to the house, and she will hugely appreciate that.
We'll keep you posted as we learn more.
Not great timing, as Dad and Judy traveled up this weekend to see her. A different kind of visit, I suppose. For her fans, the hospitals discourage or disallow flowers for patients who are immunocompromised, and the only allowable balloons are mylar and she isn't really crazy about those, so please send your good wishes on the blog or via card to the house, and she will hugely appreciate that.
We'll keep you posted as we learn more.
Tuesday, February 2, 2010
Final day of radiation
So it's been a while since I've posted but feeling a bit better right now and I'm pretty excited that I only have one more day of radiation left (tomorrow morning), then I get a break from treatment for a couple of weeks. Treatment has not been fun, as you know if you've been following this blog. I seem to get just about every miserable side effect you can get from radiation and chemotherapy. (Including that, for the second time, I've had to stop my chemo treatment due to a drop in my platelets below the threshold.)
Tomorrow we'll have our final meeting with our wonderful and kind and gifted neuro oncologist, Dr. Rembert, get final questions answered and solidify our plans for maintaining contact with him over the next weeks. We're firing my medical oncologist; so not happy with his care (if you can call it that). We've been doing some research to find out which oncologist(s) we might be happier with. We've got a couple of names. But really, oversight of my care gets transferred at this point to Dr. Susan Chang at UCSF, who's AMAZING, and we'll be meeting with her on 2/23 (after I get labs and MRIs done) to plan my care going forward.
Looking forward to this weekend. My dad and his wife are coming up to visit me; so happy that I'll get to see them! Since it's SuperBowl Sunday, we'll be hanging out at Jon and Christa's (brother and sister-in-law) on Sunday, where they'll be hosting SuperBowl festivities. Some of us aren't really big football fans, so we'll probably hang out in a different part of the house, at least some of the time, enjoying less raucous activities. And, knowing Christa, lots of yummy food.
As a side note, I've gotten so many sweet messages and gifts from so many of you over the past months. I'm endlessly touched by your thoughtfulness, your kindness, your generosity, your affection for me; it reduces me to tears (in a good way). One thing I'm regularly asked is if there's anything you can do to help out during this rather challenging time, and the one thing that I think we could use help with has to do with food. Keeping me fed is sometimes more than Kirk can keep up with. (That should get better as I get weaned off Decadron, but that's going to take some time.) So if anyone's got the time and interest to make a ready-to-eat meal (like a meatloaf or quiche or something where we can heat up a serving as needed), Kirk and I would not refuse the gift and would be so grateful for it. Unfortunately, the hard part right now is that I'm on this ketogenic diet of very low carbs, high fat (!) and protein, so while it's not a difficult diet to adhere to, there are "rules." (It's a modified ketogenic diet so Kirk and I can 'splain what works and what doesn't.)
I expect to be feeling a bit more like the old Alison once I'm off radiation and get weaned off the Decadron (although the weaning process is supposedly not a lot of fun for me or the people around me -- sorry Kirk!). If that's the case, I'll hope to do more postings during my break and have some time to talk to people, maybe see people -- although I'm also using the two weeks to get away to Palm Springs and to Monterey and who knows what else.
Love you guys. Thanks for your continuing support. /ab
Tomorrow we'll have our final meeting with our wonderful and kind and gifted neuro oncologist, Dr. Rembert, get final questions answered and solidify our plans for maintaining contact with him over the next weeks. We're firing my medical oncologist; so not happy with his care (if you can call it that). We've been doing some research to find out which oncologist(s) we might be happier with. We've got a couple of names. But really, oversight of my care gets transferred at this point to Dr. Susan Chang at UCSF, who's AMAZING, and we'll be meeting with her on 2/23 (after I get labs and MRIs done) to plan my care going forward.
Looking forward to this weekend. My dad and his wife are coming up to visit me; so happy that I'll get to see them! Since it's SuperBowl Sunday, we'll be hanging out at Jon and Christa's (brother and sister-in-law) on Sunday, where they'll be hosting SuperBowl festivities. Some of us aren't really big football fans, so we'll probably hang out in a different part of the house, at least some of the time, enjoying less raucous activities. And, knowing Christa, lots of yummy food.
As a side note, I've gotten so many sweet messages and gifts from so many of you over the past months. I'm endlessly touched by your thoughtfulness, your kindness, your generosity, your affection for me; it reduces me to tears (in a good way). One thing I'm regularly asked is if there's anything you can do to help out during this rather challenging time, and the one thing that I think we could use help with has to do with food. Keeping me fed is sometimes more than Kirk can keep up with. (That should get better as I get weaned off Decadron, but that's going to take some time.) So if anyone's got the time and interest to make a ready-to-eat meal (like a meatloaf or quiche or something where we can heat up a serving as needed), Kirk and I would not refuse the gift and would be so grateful for it. Unfortunately, the hard part right now is that I'm on this ketogenic diet of very low carbs, high fat (!) and protein, so while it's not a difficult diet to adhere to, there are "rules." (It's a modified ketogenic diet so Kirk and I can 'splain what works and what doesn't.)
I expect to be feeling a bit more like the old Alison once I'm off radiation and get weaned off the Decadron (although the weaning process is supposedly not a lot of fun for me or the people around me -- sorry Kirk!). If that's the case, I'll hope to do more postings during my break and have some time to talk to people, maybe see people -- although I'm also using the two weeks to get away to Palm Springs and to Monterey and who knows what else.
Love you guys. Thanks for your continuing support. /ab
Monday, February 1, 2010
A change of scene
Alison is back home now, going for the LAST THREE radiation treatments, hurray! And as of this writing, today's sesion should be done and she only has the last 2!!!! I know she will say a not-so-fond farewell to that radiation mask, it has gotten so tight.
So, she spent the weekend in Aptos being her sweet self. We did not exactly set the town on fire, but she did walk a bit each day, spent time with her daughter, rested, visited, read, caught up on some things on her To Do list. Kirk stayed in Berkeley to attend to a multitude of projects and needs, but I hear he got a wee bit of relaxation with some visiting friends. He has been 'on duty' for such a long stretch that I was itching to give him a break, and finally got to do that. Those of you who have done long-term care-giving know how much he needed to be 'off-duty' even for a little bit.
Alison is still super-tired at this point, which is to be expected. The irony is that she isn't sleeping fabulously because she is up at night to have a snack/visit the facilities, so she needs lots of resting and naps. The Hunger Beast seems a bit more contained (though not resolved, to say the least), but I think the modified diet has her going in the right direction with less shakiness. The radiation and steroids are sapping her muscle strength (think about what happens every time you get up from a chair - you are using your big quadriceps muscles), but she is trying to combat that with making sure she does something physical every day, even if just walking the stairs in her home. We are hopeful that once radiation is done and maybe the steroid dose goes down again, she will build her muscle strength and general energy levels back up. Her spirits are in reasonable shape, still plenty of times of sadness and worry, but it was also good to see her relax and enjoy the change of scene. Now I'm working on getting Al and Kirk back to Aptos to take care of the pair of them!
So, she spent the weekend in Aptos being her sweet self. We did not exactly set the town on fire, but she did walk a bit each day, spent time with her daughter, rested, visited, read, caught up on some things on her To Do list. Kirk stayed in Berkeley to attend to a multitude of projects and needs, but I hear he got a wee bit of relaxation with some visiting friends. He has been 'on duty' for such a long stretch that I was itching to give him a break, and finally got to do that. Those of you who have done long-term care-giving know how much he needed to be 'off-duty' even for a little bit.
Alison is still super-tired at this point, which is to be expected. The irony is that she isn't sleeping fabulously because she is up at night to have a snack/visit the facilities, so she needs lots of resting and naps. The Hunger Beast seems a bit more contained (though not resolved, to say the least), but I think the modified diet has her going in the right direction with less shakiness. The radiation and steroids are sapping her muscle strength (think about what happens every time you get up from a chair - you are using your big quadriceps muscles), but she is trying to combat that with making sure she does something physical every day, even if just walking the stairs in her home. We are hopeful that once radiation is done and maybe the steroid dose goes down again, she will build her muscle strength and general energy levels back up. Her spirits are in reasonable shape, still plenty of times of sadness and worry, but it was also good to see her relax and enjoy the change of scene. Now I'm working on getting Al and Kirk back to Aptos to take care of the pair of them!
Saturday, January 30, 2010
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
For those having any trouble commenting on blog, Jon can reached at jbronstein2000@gmail.com.
Love to all,
cj
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!
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