Thursday, December 30, 2010

Pre-surgery update

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

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

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

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

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!

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

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