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!
Thursday, July 29, 2010
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…)
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