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
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